Tuesday, February 24, 2009 abby, Community Member, asks

Q: what is the best medication for fibromyalgia

what is the best medication for fibromyalgia. I have tried many and none work help 

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Answers (26)
Karen Lee Richards, Health Guide
2/25/09 1:47am

Unfortunately, there is no single best medication for fibromyalgia.  Every patient is different and it just takes trial and error to find out which treatment works best for you.  As you probably know, the FDA has approved three different medications for FM – Lyrica, Cymbalta and Savella.  The most recent, Savella, was just approved in late January and will not even be available in pharmacies until March.  There are a number of other medications that are often prescribed off-label to treat FM.  You can read about them here:  Medications Prescribed for Fibromyalgia

 

We've found that most FM patients seem to do best when treated with a combination of medication, mild exercise, and complementary therapies, such as massage, acupuncture, myofascial release therapy, yoga, etc. 

 

I know how frustrating it can be trying to find something that helps, but don't give up.  There are several more medications currently in clinical trials that will hopefully offer us even more treatment options.

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kimmyc, Community Member
5/29/10 3:04am

It is imperative that you make dietary changes. I have lived with chronic pain most of my life and at 51, have a strict diet. No glutens, no sugar, no artificial anything. No wine! stay thin, try sativa tinctures and edibles. Norco works well and I switch off with methadone, 10mg's three times a day. The meds listed above do nothing for me and quite honestly have bad long term problems. Ironically, methadone is probably one of the best and has been used for long term chronic pain in Europe for years. That is what it was originally intened for. Much less damaging to your organs...

no offense to the woman in the picture above, but looking at her, she is over weight and I can tell by her face tone, she is eating wheat, grain fed animal products and something else wrong. You are what you eat and humans were not designed to eat grains -

Yoga, and meditation and learning how to metabolize stress are crucial.

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DBinCO, Community Member
6/16/10 1:24am

I'm glad that regimine works well for you; however, that does not work for all people. In defense of the woman's picture above your post, we don't know what all she deals with. It may have nothing to do with her diet. People are overweight for many different reasons - whether physical, emotional, or whatever. It sounds like you have a gluten intolerance. I have a friend who also does. I don't believe that humans were not intended to eat grains. It's in the Bible that the Israelites used several different grains, and two of the festivals they were to observe and celebrate were about the harvests. (1) Festival of the First Harvest was the celebration of of the 1st crop of the Barley harvest. (2) Harvest Festival (Pentecost) - was the celebration of the end of Barley harvest and the beginning of the Wheat harvest. Grains were the most basic staple for humans and the animals were also allowed to graze the stubble that was left from the harvest - which included the grain that fell to the ground.

Methadone has been around for many years. It is what is used to help get people off of heroin. It is also one of the "dirtiest" drugs out there, meaning that there are so many chemicals in it that is DOES have adverse effects on people. My neurologist also tried me on Methadone. I was on it for approx. 6 mos. In that time my hair started to fall out in clumps and my teeth were destroyed from the inside-out. My hair has mostly come back, although now its really thin, and obviously I lost my teeth.

The first lady was offering her opinion and the facts of what the FDA has approved and what's available. Let's not be too quick to judge.  

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D, Community Member
3/23/11 8:56am

I have fibromyalgia, arthritis (possibly RA), have had a positive Lupus test and have constant migraines... I use to take methadone (wonderful drug), but, I knew it was a lot more addicting than the Lortab 5/500 mg I take 5 times a day.  I also tried Oxycodone (another great drug), but, once again, I didn't want to have to deal with the addiction of it.  I still just take the Hydrocodone and it helps, but, I know I have an addiction to it.  I don't know what to do anymore.  I don't like telling people I take Lortab and would like to get off of it.  I've been off two different times, one time for 8 months (I used another med in it's place that had synthetic opiates in it), it tore my stomach up...the second time I got off Lortab I just didn't give it enough time, I got scared, and went back on...Is there anything other than opiates to treat this chronic pain?

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Niki, Community Member
8/ 3/11 5:18pm

woah!  Seriously narcotics don't work on Fibromyalgia.  You need specific drugs that work on the brain.  I went to the hospital before I got a diagnosis.  Due to a bad economic situation, I had gone off my amitryptiline.  They gave me Morphine in the hospital but the pain continued then they released me with Lortab.  With the pain continuing, I went back and asked for amitryptiline.  The doctor thought I was crazy.  Within an hour, I could feel the pain leave my body.  I spoke to my new physician (I moved) and she put me on savella.  The remaining pain is gone.  No tension headaches, no back pain.  I ALMOST feel normal.  Joints are still sore in the morning and late night but so far the best.  Stay away from narcotics!

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kimmyc, Community Member
9/28/11 10:40pm

Narcotics stop working after a while and are SO damaging! cannabis ticntures

forever!!!!

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kanaia, Community Member
9/24/12 2:15pm

You are right but didn't work for me

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Chifibroman, Community Member
11/25/11 7:21pm
It is not fair to start off by saying " whoa"!!!! Opioid analgesics can and do help thousands Of fibromyalgia patients deal with the day to day pain with great success. I have tried many different families of medications over the years ( I am a 33 y/o male diAgnosed with fibromyalgia in 2006) and have found that opiates along with other meds DO help significantly. Yes, opiates do not work for everybody but they do help many of us. I do not appreciate a stern opinion from someone telling me my medications will not work, you are not me or my doctor. Opiate use can be highly effective in treating pain and has been a staple for analgesia for several thousand years for a reason. Don't judge! There are enough stigma attached to pain med use ( try being a outwardly looking healthy male with rx's for oxycodone, soma, and oxyir and watch the eyebrows rise!) Already without some misinformed anti- opiate judge telling people to avoid medications! BUTT OUT and mind your own. You cannot tell me what medications work and won't work. Do NOT stay away from "narcotics" unless there are reasons you should. "narcotics" can be wonderful if used as prescribed and can give you your life back. Shame on you for acting as a doctor, judge and jury for all fibromyalgia patients. This forum is no place for personal agendas or anti opiate fear mongers perpetuating negative opinions and stereotypes of chronic pain patients. Remember, you have an OPINION, not a scientific/medical fact! Reply
Debbee, Community Member
9/23/12 1:41am

yes we really need to stop judging what or what not people are taking.  everyone is indeed different.  we are looked at by many people that think this is some "made up" diagnosis.  i myself had a hard time accepting that i suffer from chronic fibro pain, chronic fatigue and ibs.  i also suffer from depression.  a friend gave me the best advise.  she told me to work with my doctor and take what we feel will be the best to help me manage my pain and not let the pain manage me.  i am almost 58 and within the next few months feel certain that i will go on short and then long term disability.  i need to have people give me positive advise...like maybe this will work for you...maybe it won't, but try what i can to help give me a life back.  i am missing so much in the lives of my 3 Grandchildren because when i get home from work (i do not medicate during my working hours...i can't work on the meds) so when i spend most of the day watching the clock to see when i can get home, and when i can take a pain pill. 

 

i should stop rambling.  we just need to try to be positive.

 

peace to all.........

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Patricia, Community Member
11/29/12 1:01pm

I have gone the narcotic route and the nothing route with chronic pain programs.  I am fighting with my Dr. to get something for the pain and it sucks having him treat me as someone trying to abuse the system or get high.  I have never been addicted to any medication and I exercise daily, watch my food and my weight but I am still in considerable pain and he does not seem to get it.  I am tired of those of us with Fibromyalgia and chronic pain, being treated like we are hypocondriatcs when we are in pain and just want relief. I also have degenerative disk diease, arthritis, osteoporsis, bursitis, rls, and tmj.  I used to get daily migraines, now I don't get them as often.

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Patricia, Community Member
11/29/12 1:17pm

FYI:  I am 61 and I have had Arthitis since age 12, Fibromyalgia since age 30.  I have tried many many medications and have found nothing that relieves the pain. I want something to take the edge off so I can exercise and have some kind of life.  I had my muscles atrophy because I did not use them for 3 years when I had to retire early due to the pain.  So I need to keep exercising but that causes pain too and I own a small infrared sauna, which I use regularly too.  I do research on new meds I do everything I can to help myself but the medical community needs to help us too.  First I was treated like I was crazy until someone finally figured out what I had, now I am treated like an adict, get with it Dr's.  We need help, not just chronic pain programs which did teach me techniques in pain management but did not take away the pain.  Does anyone have a new med that works at all?  My last ones were Lyrica and Cymbalta and neither touched the pain. Now all I have is tramodol which is a joke.

 

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Cat2002, Community Member
12/12/12 8:32pm
I am just a "Fibro Newby" in that I have only been diagnosed 4 a year+ but have had other painful chronic health issues 4 more than 25 years as well as a career in the health care field. A few things you said struck me as VERY SAD. A patient who establishes a relationship with their DR's needs to have complete faith & trust in those DR's @ all times. You & you physician need 2 always discuss your plan of action & BOTH of you need 2 be in COMPLETE AGREEMENT! If you don't feel like your doctor is supportive & in YOUR CORNER than I say you may do yourself the best act of supportive care & find a team of professionals who you can intrust your life to their care. You should look forward to every DR appt because you are your best advocate about what has been going on in your body. Keep a Health Care Journal that you bring to EACH & EVERY doctor appt & take notes, write ?'s before the visit, note any med changes etc. You can also make note of any unusual occurrences or RX reactions that happen between visits. Also when you see another DR you will be able 2 inform them of any changes etc & can refer back to prior visits or what tests you have coming up. Pain is "REAL" & you should NEVER EVER be made to feel guilty for expressing that to those who are taught best how 2 heal & care for us - the patients!!! Reply
Dr.T, Community Member
12/27/12 12:52am

I too, am very tired of these doctors I've had telling me you can't possibly be in that much pain. How ever, my primary care physician will write me lortab when ever I need them. They do not know the extent of pain I am in and if they can't correct that for me, then I look for a new doctor.

 

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crystal, Community Member
1/13/14 10:08pm

I believe everyone here is being helpful and not being judgemental. NO need to be rude and obnoctious.

 

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Skylyn, Community Member
2/16/14 1:18am

Thankyou for that!! I am so sorry for your pain, I know what you mean about the eye brow raising!! I hate asking a doc for medication, 98% look at you like your a druggy off the streets and judge you just like the WHOA!! person! Everyone knows opiates are addicting but so is alcohol but if we went into a liquor store no one would say a word!! And it is so readily available.. I have actually tried to drink enough to ease the FM pain, with no luck instead I got sick to my stomach!! Anyway I have tried so many things and combonations of things, I guess I am one of those that stuff just dont work well on! My doc did precribe Methadone once but it freaked my sons out so bad, they talked me out of taking them!! I do like the Tramadol and hydrocodone together, no bad side effects and it does help take the pain to a level I can function with!! I do agree that our diet does play a part but a small one! And being over weight is not good for anyone, but that is a seperate problem! I would like to think that some one some where is working on something that will work for us FM sufferers! Lets all pray for one another and stop being so judge mental!!

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Lynette Heleel, Community Member
3/25/14 2:54pm

I live in Pa and for the 5 years I had to move back here from North Carolina I have been suffering intolerable pain with fibromyalgia, bursitis,osteoarthritis and degenerative spinal discs L4, 5, C3,4 lower and upper spine with arthritis in neck area. I have all the classice ailments of fibro and the lumps under the skin of my muscles myofaciscio lumps that are seriously painful it touched. I want to agree and support the person telling about judging...do not judge about the meds that work for one and maybe not for me...I was with a great doctor in NC who relieved me for the first time in 10 years after my diagnosis with "fetynal patches" and "suckers"..I take paxil, ambien, belledonne, visteril cimetadine, and everything worked so well I started substitute teaching for the first time after I graduating for my BS. Now 5 years later I moved back to Pa unknowingly that the doctor's here will not prescribe fetynal. I have morpine at 60mg that is killing my pancreas and liver on the long term and fetynal won't do that. I now callling Maryland doctor's to see if I can find one out of state. I am a widow left with nothing financial ..I cannot hold a position with this illness, and I live on 1.300 a month. I do not have a vehicle but will have to get one to go out of state to see a doctor that will treat my fibro. This is worse than getting medical marijuana. I have documented files on all my illnesses and tIhat means barely anything and still won't change any of these physicians here in the area where I live Johnstown Pa but I was told it was the whole state due to the doctor's and politics rules self made about how they want to treat person's in Pain. It goes deeper that is just my off the top of my head as to what we struggled to find out why I couldn't get the medicine that allows me too live life with chronic severe pain. How much sadder it can get will me being put in the grave. Cause all I can do now is walk or limp from my bed to the bathroom. Yeah I have depression too did I say I take Paxil too....I really need fetynal to be my top medicine long term but won't get it in Pa. I have an unemployed 26 year old daughter that too is another sad story but she can't find employment at all here. It doesn't exist. I woould appreciate any person that could offer help for us in any way. My email is lynettehelsell@gmail.com,,,Things are going to be really rough for us now...

 

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goldenfirex, Community Member
1/ 9/12 4:27pm

I dont mean to come across rudely but I have tried flexeril, tramadol, savella ( which worked wonderfully but it caused me to have high blood pressure so they had to take me off of it) effexor, Nerontin, Lyrica and the ONLY relief I get is when I take my pain med and my soma... For you to say narcotics DONT work for fibromyalgia is very closed minded. I realize dependancy comes with narcotics, but you DO realize you can not just abuptly stop taking Savella, Lyrica or any of those either correct so you are dependant just the same. I know what helps me and I also know pain med's have helped many others as well. Am I happy about it no but I have small children and a home and family so I will do whatever it takes to take care of my family.

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L, Community Member
1/17/12 2:27am

Shame on you! Niki as a fellow Chronic Pain sufferer, or as I like to be positive and refer to it as - a Fibro Fighter - You of ALL people have absolutely NO credentials to be telling anybody that their choice of treatment doesn't work. Shame on you for being so sorely uneducated on Fibromyalgia and on the use of Opioid Analgesics as an **Option** for the treatment of Chronic Pain. Many Fibro Fighters see at leat 5 Physicians before either giving up because all of their tests come back 'normal' and are sick of being bounced around to specialists like a hot potato and taking useless medications in an effort to simply guess and rule out their condition - or they are tenacious like You and I - and after a tireless effort finally get their diagnoses of Fibromyalgia. 

 

Anybody with Fibromyalgia is truly in pain 24 hours a day and 7 days a week - relentless pain that is excruciating. Anybody with Fibromyalgia would try anything and Most of Us *Have*. We have gone down the line with our Doctors and tried every single medication - each time hoping and thinking "Okay this time, this one is going to work I can tell" ... Reading all about it, Hoping, Wishing and Wanting it to Improve our Quality of Life and Take our Pain Away. 

 

However for Many of us Fibro Fighters the "Traditional" medications such as Lyrica, Cymbalta, Gabapentin, Ultracet, Amptryptlyn, and sooooo many more simply do not work or have had such crushing side effects (I had such vivid nightmares on one of the medications I woke up screaming night after night and on Cymbalta I gained over 60 pounds in just 6 Months with absolutely No change in diet or exercise and No pain relief!).

 

Opoid Analgesics provide relief for True Chronic Pain Patients - and it is rotten people like you who Perpetuate the Stigma surrounding valid, helpful, safe medications..and Let You Not Forget that these are Medications and are not illicet ---  that Provide some of the Only relief to Fibro Fighters and Other Chronic Pain patients --- relief that you have been forunate enough to find with such an easy solution as a safe and easy medication as Amitryptilyn. 

 

I Truly Hope you will be Part of the Solution and Not the Problem - Because the Fibro Community needs to stick together in our quest to be taken seriously. 

 

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Sue, Community Member
2/18/12 5:18pm

I was just diagnosed with Fibro.  I have chronic pain sometimes intense but usually achey.  The pain I have are like knives being stuck into the sensitve areas.  My md put me on Lyrica and I am walking around in a daze.  He said it would settle down.  (i have only been on it for 5 days). I have found myself to be forgetful and in a fog.  Will someone tell me what I can look forward to... does it get worse?  Will I forget more stuff?

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terri, Community Member
4/16/12 11:22am

SUE......I understand what you are going thru! I have the same problem also. The best thing to do would be talk to your doc and see if you and him can work together on a treatment plan for you. I know it is frustrating to  you. What you are experiencing could be a side effect from your meds. I don't know that though. It is always best to talk with your doc. Fibro is so different in each of us in its symptoms. I am so sorry you are having these issues. Just remember that most symptoms can be treated successfully though. Hope you feel better soon!!

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Lori P, Community Member
4/17/12 6:04pm
Hi Sue!! I have had fibro many years now, at least 4 I think! haha. Forget things!! I have seen many doctors, many meds. no help. First thing I really want u to know. My Rheumy. , whom I trust told me after another Dr put me on lyrica( with was nightmare and quit after year) Doctor said it was normal for me to have the side effects! I quit it!!!!!! She told me she would never put her any of her patients on Savella. She said too many side effects. I was then put on Cympalta. Many of my doctor said would hopefully help me! Reply
Lori P, Community Member
4/17/12 6:40pm
Sorry, wasn't finished!! haha what they DIDN'T tell me (or maybe even know), is that many of these drugs are a nightmare! I'm on day 6 coming off Cymbalta!! I'm 50 used to be very social loved anybody and everybody. This past year, I have isolated myself from everyone accept my son and husband this past year. Haven't felt that good, nothing helped my pain. Was on 2 Norco. Dr. Even tried fentynal patches last summer. I took it for one month, stopped! Just not good for me. Maybe helps others. Longer story short. New Dr. I am seeing said too many meds. Try to taper off to see if I am same, better or worse. We will see! So I decided I wanted Cymbalta first. My second day was a complete nightmare!! I called Dr. She said don't worry, pretty sure from not taking Cymbalta!! I finally got on computer because I can't walk without cane, get zaps in my brain all the time feel sick, off balance etc..,,, What I seen there was literally hundreds of posts on there about what happens when you stop taking it. Mostly say same thing. I even got on FDA website. They say basically it could be hard with withdrawl!! But, they don't have to put it on packaging!! Dr. told me to stay off computer! Are ALL those people lying when the have same symptoms as me?? Can u tell I'm angry? haha. Just PLEASE, befor going on ANY of those drugs on tv, for fibro, do some research about being on it, any side effects common while taking it etc. I'm am not trying to say it doesnt help anyone. Maybe some it helps! And I don't mean to upset them. I'm just asking you to check into it. What is sad is most doctors and pharmacist may not even know either!?? I hope u get good help. Good luck to you!!!!'!,,,, Reply
kathy kirkman, Community Member
5/29/12 9:43pm

I understand I was just diagnosed with fibro also.  They first put me on 60 mg of Cymbalta and it really helped with the pain but It gave me the worst heartburn and a skin rash.  So I had to stop taking it.  The DR. just put me on prestiq 50 mg a day  and it works okay it like it just dulls the pain it does not get ride of it.  I am also on a sleeping pill at night to help me sleep.  I also have the fibro fog and i find myself forgetting things that I should not even have to think about i should just naturally now.  I hope it gets better.  I feel like I am at least heading in the right direction.

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kathy kirkman, Community Member
5/29/12 9:43pm

I understand I was just diagnosed with fibro also.  They first put me on 60 mg of Cymbalta and it really helped with the pain but It gave me the worst heartburn and a skin rash.  So I had to stop taking it.  The DR. just put me on prestiq 50 mg a day  and it works okay it like it just dulls the pain it does not get ride of it.  I am also on a sleeping pill at night to help me sleep.  I also have the fibro fog and i find myself forgetting things that I should not even have to think about i should just naturally now.  I hope it gets better.  I feel like I am at least heading in the right direction.

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februarysherri, Community Member
8/19/12 2:17pm

I have empathy for anyone suffering with fibro.  I am 48 and have had it since my late 30's.  I have gone through the same medications as many have mentioned with the exception of Methadone (I'm not against it).  I have taken Lyrica; actually, I took it for 3 months and had to stop taking it because I not only gained 20 lbs. in the first month (I have been 105 lbs. give or take 3 or so lbs. for 30 yrs) and I was eating less during this time due to the nausea I had from extreme pain.  The weight gain wasn't the worst part; I have had an irregular heart beat since taking it - my heart will sometimes beat 3 times and then skip 1; beat 5 times and skip 1 (this goes on for at least 15 min. at a time)  I have extremely bad swelling in my feet legs and abdomen; it is worse when I am up on my feet for very long.  I am by no means saying this happens to everyone - I just know that my doctor told me that Lyrica's side effects can be permanent (that is just what my doctor told me, don't take it as gospel until you talk to your own).  Just be very aware of what is going on with your body and talk to your doctor about any new, unusual or bothersome symptoms.  Also, what helps is to talk to other people who have it; they can be a great release and tell you about their experiences.  I am very blessed as I have a wonderful husband who takes every day one-at-a-time with me.  My 7 year old is my biggest fan and the two of them together, along with much prayer, help me cope.

 

Good Luck! Smile

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Lisa Marie, Community Member
1/26/13 4:00pm

I took it for two weeks, my Dr said I had to give it at least that..I hated it!!! It made me a zombie, my pain increased, and i felt awful..I stopped it..but you have to ween yourself..this is bad stuff..and no one really knows how to treat it :( 

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yvonne, Community Member
1/29/13 9:35pm

Hi Sue:) My name is Yvonne. I was diagnosed with Fibro this past Sept. Along with the Fibro, I also have polyneurorpathy, osteroarthritis  in my hips. All my test kept coming up in the normal range. At first they thought I had M.S. After a spinal tap and a M.R.I on my brain, I was ready for anything the Dr.'s threw at me. I was put On Lyrica. And yes, seemed like you are in a fog, or a rough hang over. I did get use to the Lyrica, and it did help me after they up the mg.  I think it took me about 2 weeks to get adjusted. I only had a 3 month trail period where the perscription only cost me $25.00 . After that period , I could no longer take it. Was almost $100.00 . My pain became VERY intense. Achey, yes, I told the doctors felt like knives were being stuck into me. My legs would jump and twitch, even when sitting, and my body is tender all over, even to the touch. the pain was more than I could handle. I even left work crying a few times, cause I could no longer stand . I think they thought I was making it up. People who do not have Fibro, do not understand the persistent pain that we suffer every day, 24/7. Please don't give up . Be persistent. What works for me or someone else may not work for you. My neuro put me on "Neur0ntin" only 100mg. I followed up with my family Dr, which he up the "Neurontin" to 200mg 3 times daily. Still, no change. I finally went and seen a arthritis Dr. He informed me on was on the right meds. but the mg wouldn't do a thing for me. so, he up the neurontin to 600mg 3 times daily. I am also on "lodine: for the arthritis. I follow up every 3 months with him . Just this month he addad  anew medication. "Amitriptyline : It is a antidepressant. Which is suppose to work on the brain to calm down the nerve endings... I thnk ?  So, I am still in the process of the guessing game of what works. The arthritis Dr did tell me, nice warm baths or water arobics helps.  Once again, please don't give up .:) You know your pain, and it is hard to describe to others what you are feeling. If one Dr. won't help you and looks at you like you are crazy.. find another one. Good luck and God Bless you :)

 

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yvonne, Community Member
1/29/13 9:36pm

Hi Sue:) My name is Yvonne. I was diagnosed with Fibro this past Sept. Along with the Fibro, I also have polyneurorpathy, osteroarthritis  in my hips. All my test kept coming up in the normal range. At first they thought I had M.S. After a spinal tap and a M.R.I on my brain, I was ready for anything the Dr.'s threw at me. I was put On Lyrica. And yes, seemed like you are in a fog, or a rough hang over. I did get use to the Lyrica, and it did help me after they up the mg.  I think it took me about 2 weeks to get adjusted. I only had a 3 month trail period where the perscription only cost me $25.00 . After that period , I could no longer take it. Was almost $100.00 . My pain became VERY intense. Achey, yes, I told the doctors felt like knives were being stuck into me. My legs would jump and twitch, even when sitting, and my body is tender all over, even to the touch. the pain was more than I could handle. I even left work crying a few times, cause I could no longer stand . I think they thought I was making it up. People who do not have Fibro, do not understand the persistent pain that we suffer every day, 24/7. Please don't give up . Be persistent. What works for me or someone else may not work for you. My neuro put me on "Neur0ntin" only 100mg. I followed up with my family Dr, which he up the "Neurontin" to 200mg 3 times daily. Still, no change. I finally went and seen a arthritis Dr. He informed me on was on the right meds. but the mg wouldn't do a thing for me. so, he up the neurontin to 600mg 3 times daily. I am also on "lodine: for the arthritis. I follow up every 3 months with him . Just this month he addad  anew medication. "Amitriptyline : It is a antidepressant. Which is suppose to work on the brain to calm down the nerve endings... I thnk ?  So, I am still in the process of the guessing game of what works. The arthritis Dr did tell me, nice warm baths or water arobics helps.  Once again, please don't give up .:) You know your pain, and it is hard to describe to others what you are feeling. If one Dr. won't help you and looks at you like you are crazy.. find another one. Good luck and God Bless you :)

 

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terri, Community Member
4/16/12 10:58am

I totally agree with you!! I am on oxycodone 10/650 mgs and it is the only drug that works for me after trying many other fibro drugs. I wouldn't be able to get out of bed in the morning if it weren't for this med.! I realize we are all different in our responses to medicine.  What works for me may not work for someone else. I would never tell someone to not take  a med just bc it doesn't work for me!!!  Shame on that person for saying to not take opoids!! We all take whatever works for us!!! I hope you are finding good pain relief! good luck to you!!            

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terri, Community Member
4/16/12 11:10am

I forgot to mention that I have done a lot of research on the use of opoids for fibro pain relief and  almost all of the studies done say they are of great benefit for those with chronic pain relief!!  I am thankful my doc is understanding and has no problem prescribing these meds for me.He is just a regular family doc but he does have a specialty in fibro and is very educated about it. I see him every 2 months for fibro pain and am so grateful he understands me and what I go thru.

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sue, Community Member
4/16/12 11:47am

I haven't been able to see a pain mgmt doctor yet.  My appt is in JULY!!!  ridiculous!!!   My regular doc and the RA guy will not give me anything for pain.  I got something from one of my clients.  It did nothing for the pain, just helped me sleep.  Thanks for you insight!!!

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terri, Community Member
4/16/12 12:09pm

Sue....so sorry you are having these problems! Hope the pain mgmt doc can help you. Good luck to you!!

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sue, Community Member
4/16/12 1:25pm

thanks   
ARE you on FACEBOOK   there is a group on there that is VERY helpful!!!

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terri, Community Member
4/16/12 2:33pm

Yes I am on there and love the fibro page!! Thanks for the info!!

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Patty, Community Member
8/27/12 5:48pm

Could i get the name for the facebook chat.

 

Thanks

Patty

 

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vc:), Community Member
5/ 7/12 4:21pm

I have a question? Do you know if majority of FM people still work steady jobs?

 

I'm getting where I can't take this any more myself!  I need to push harder, I've resently move to another state and will be going to a new doc and done know how this is going to go.  Im on a couple of meds one being Cymbalta.  I do believe pain meds help but know one will give them to me for a cont. amount of time.  I also have Migraine syndrome.  I just have fatigue and brain fog and pain to where days its getting to hard to focus on my job etc.

 

 

Thank you

: ))

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Diane, Community Member
8/ 4/12 4:17pm
Who is your Doctor, I have been in pain for about five years and my doctor keeps sending me back to specialist. I'm so tired and depressed I feel sometimes I can barely go on. I have no insurance so it's expensive but my doctor tells me today if I don't see another specialist he will stop prescribing hydrocodone for me. This is the only medicine that gives me any relieve. It's so degrading going to my doctor sometimes. If anyone can help me I would appreciate it. I have tried all the other meds out there. Cymbolta was very bad and I became suicidal on it. Reply
kimmyc, Community Member
5/31/12 5:44pm

This is to all - and not a response to anyone in particular... I never wanted to do anything but help and I NEVER diagnosed anyone. I am 53 ans was on opiates for 32 years. I wanted to share a formula of success that I have had - not to frustrate or be attacked. PLEASE DO NOT E_MAIL ME AGAIN. I am leaving this forum for good! All I can say, is - ioiates did more damage than good for me as they mask the problem, not solve it. So, cannabis high in CBD and removing tap water from my diet have restored my life. Good luck to all - not in the mood for further attack.

 

Live with your pain - I'm out!

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kanaia, Community Member
9/24/12 2:13pm

woah! your wrong.

 

You do need pain medications along with others. I can't take Lyrica or the other "Fibro Drug" and pain meds are all there is for me.  Amitriptiline does nothing for my pain so we are all different. It's what works for us individually adn many times it is different.  Don't tell them to stay away from narcotics if that helps them. With 24/7 pain I'd lose my mind without something to dull the pain I have.

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kanaia, Community Member
9/24/12 2:14pm

woah! your wrong.

 

You do need pain medications along with others. I can't take Lyrica or the other "Fibro Drug" and pain meds are all there is for me.  Amitriptiline does nothing for my pain so we are all different. It's what works for us individually adn many times it is different.  Don't tell them to stay away from narcotics if that helps them. With 24/7 pain I'd lose my mind without something to dull the pain I have.

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kanaia, Community Member
9/24/12 2:16pm

woah! your wrong.

 

You do need pain medications along with others. I can't take Lyrica or the other "Fibro Drug" and pain meds are all there is for me.  Amitriptiline does nothing for my pain so we are all different. It's what works for us individually adn many times it is different.  Don't tell them to stay away from narcotics if that helps them. With 24/7 pain I'd lose my mind without something to dull the pain I have.

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helpusall, Community Member
12/19/12 1:23am

I totally agree.  Pain meds are a joke for people with true fibro.    Amitryptiline is a miracle drug for the pain.  I don't understand how it works.  But, the side effects for me weight gain, dizziness, slurred speech, unable to get the right words out, etc. lowers my self-esteem which then leads to depression.  It's a vicious cycle. Pain, fatigue, depression.  Cortisone is another joke.  The side effects do not out way the the benefits.  Its so temporary.  I wish they could re-formulate elavil with less side effects.

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Susan Manuel, Community Member
12/22/12 5:05pm

Wow, so glad to hear you have found medicine to help your pain.  I've just been giving amitryptiline and wonder what dose has worked for you?  Funny isn't it, when you come full circle and are not taking the same pills you took 25 years ago.  Also, might ask my doctor about savella.  Thanks.

 

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sharon, Community Member
4/ 5/13 1:41pm

Hi I hope you are still on here I just wanted to ask what dose of amitriptylene you were on? I was on 255 mg earlier this year and it did nothing. I have been told by occupational health that 150mg is the correct dose for fibromyalgia.

Sharon

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Jamie Johnson, Community Member
11/ 2/11 3:39am

I am 30 yars old and was diagnosed with severe fibro. Unfortunately In dont have medical insurance and am stuck with the VA medical center. They hate to give out narcotics and I have been living in absolute hell. I have no idea where to turn but I cant take much more of this I am about 2 go out of my mind. I dont eat dairy, wheat, gluten, sugar or sugar sub. any ideas?

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vc:), Community Member
5/ 7/12 4:28pm

I don't have med. Insurance either!  I go online and get patient assistance help for a lot of my meds.  For my cymbalta I use " Lilly Cares Patients Assistance Program" you find out if your eligiable and then fill the app out and doc with 90 day persc.  3 refills which is for the year and most get mailed to you and every three months you call for refill.  But in Lilly's case you can fax or doc fax a refill request and they mail them to your doc office.  These programs have helped me out amensley !!  I have inhaler also from "GlaxoSmithKline" - which is Bridges to Acess" for my Asthma because I just could not aford them!! Just research your med manufactures!

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Fed Up with Fibro, Community Member
6/ 4/12 9:11pm

How do you get your Dr to even prescribe pain meds such as Lortab?  Mine will only give about 30 for a 6 month period, so I REALLY have to be at an extremely high pain level to take it. It always helps. I have tried several of the meds that work on the nerve theory for fibro pain and they only work for a short time with me. Then it is like I am taking nothing. I am almost to the point to quit going to Drs because they just don't help! I do not have insurance and the meds are just too expensive. He just gave me a 2 week sample of cymbalta and I just found out a months supply will be $364! Really? What part if I don't have insurance do they not understand?     

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PAIN DOC., Community Member
9/19/12 6:50pm

100's  !  ! ! !

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PAIN DOC., Community Member
9/19/12 6:58pm

100's DONT STOP  R  GIVE  UP THERE  R 100'S  OF COMBINATIONS  OUT THERE ...!!! I TAKE METHADONE - OXYCODONE - HYDROMORPHONE - PAMALOR - MOBIC - NUROTIN AND  CHANGE  AROUND EVER SO OFTEN  WITH OTHER NARCOTIC'S SO MY BODY DONT GET USE TO THEM !  >>>  HOWEVER <<< I HAVE BEEN TAKING PAIN MEDS SINCE I WAS 19 DUE TO OTHER PROBLEMS BUT THE BEST THING IS THE DR.'S & FINDING A GOOD ONE THAT IS NOT FREEKED OUT AND IS PROPERLY LICENSED & TRAINED !!! THE NEXT BEST  THING IS FOR U TO SELF TEACH URSELF ON MEDICATION[S] !!!

                        GOOD LUCK    Cool    !!!

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Gerard, Community Member
12/31/12 1:15pm

Robitussin 1 tablespoon = 400mg Guaifenesin take it every 12 hours!  

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Gerard, Community Member
12/31/12 1:47pm

I also took up Reiki.  I practice it on myself everyday.  

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Gerard, Community Member
12/31/12 1:53pm

I took up Reiki and practice it on myself everyday.  I also stay off artificial sweeteners and soda.

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GKWright, Community Member
4/ 6/11 11:51am

I'm sorry but can we please leave the bible out of it?  For God's sake.....can't we religious fanatics talk about anything without relating it to jesus christ?????

 

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flipchick29, Community Member
4/17/11 6:29am

Everyone is entitled to their opinion! Everyone is different, and if it takes Jesus Christ to help some get through their day then so be it, don't read these blogs if you can't except others opinions, that is the whole point of these sights, and if you don't believe in God or the bible, that is your own problem, but you may not tell others that they should not speak of it on a public blog, it is their right to say what they want to say.

 

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Dee, Community Member
8/ 1/11 9:42am

Oh my goodness!!  How can you even suggest leaving Jesus Christ and the Bible out of anything?  That is what is wrong today.  People want to leave Jesus out of everything.  Look at what our nation has become.  May God bless you.

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Anna, Community Member
9/ 9/11 8:39pm

Nope.  Even though I didn't talk about him, I see no reason to leave him out, provided this talk is honest talk (and it is).

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kimmyc, Community Member
9/17/11 9:44pm

True.. my anger at the pharmaceutical industry has past... if people choose to poison themselves, they can! I have my masters in Clinical psychology and the more I learned about the ill effects from pharmaceuticals, the more depressed I became. I am now off of all pharmaceuticals and only using medical cannabis which has changed my life. I still can't accept the advice of a fat person, sorry.

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K, Community Member
5/31/12 12:28pm

Ok, I have to respond to this:

Because you have a Master's in Clinical Psychology does not give you the "license" to diagnose, analyze, assume about anyone without their coming to you, paying for your services and I wouldn't be one of them given your attitude. Your "Masters" doesn't mean squat. GIven the variety of therapists out there that harbor attitudes such as yours, it's not a wonder their clients leave worse off then when they began.
Secondly, While I'm an advocate of medical marijuana, I also see that as a drug. Do you feel better doing something that is largely illegal for the most part and has caused grief and heartache as a result to "addiction" to this drug? Yes, my son had an "addiction" to marijuana. Your example is poor. ANY drug has the potential to become "addictive" or rather one can become "dependent" this includes, but is not limited too, supplements, narcotics, marijuana, antidepressants, muscle relaxers, anti anxiety medications, etc.

You're "poisoning" yourself as well. Are you eduated enough to know what an opiate is and from where it derives? Yes, a PLANT, like Marijuana.

I think that whatever a person needs to kill the massive pain this illness causes, then they should be allowed to use it WITHOUT the judgment of others. Your comment with regards to the person in the picture and you conclusions about why she is "fat" is repulsive.

I thank God I am not one of YOUR clients.

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MissiWilli, Community Member
11/26/12 1:43am

Wow! That last sentence was extremely uncalled for!

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Dee, Community Member
1/ 7/13 4:42pm

I loved your reply and use of bible! I myself have not been given a diagnoses but have all the symptoms of Fibromyalgia. My doctor treats me as though I am making up aches and pains. This does not help. My rhumatologist gave me Lyrica which I found to work a little. Why is it that no doctor seems to want to give a diagnosis of fibro? Anyhow, you did not mention if you found a medication or anything else that helps with the pain. The worst pain for me is in the hips and hands. Can you make any suggestions.

 

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tiredofthepain, Community Member
11/29/10 9:09am

Hi I too have fibro and have not responded to any of the meds...and to be quit honest..am sick of all the side effects from them...could you  please explain to me what sativa tinctures and edibles are..and where to get them also, is norco..hydrocodone..because I had been taking them...was taking 4 pills at a pop 7.5 milligrams...and they still did  not help...also they claim methodone is highly addicting and after taking it for awhile it will no longer work ..unless you take more...so thats what my dr claims...so he does not want to give it to me. also what do you suggest to eat..if you can not have any glutens etc..I am on a tight budget....thank you so much for the info..have a wonderful day!!

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kimmyc, Community Member
11/29/10 9:19pm

Not sure where you live, but in some States you can get a card for medical cannabis. I never used it growing up and so it was not intuitive when my osteopath/pain expert suggested I try sativa, a type of cannabis for my chronic pain. I soak it in pure alcohol for three months and then have a tincture I can add to my tea. Or, I make cookies and brownies. I is quite amazin. The other type of cannabis, indica, I don't like. It gives a couch lock and enhances my pain. That;s what "pot heads" like and also cancer victims.

Gluten free is the way t go. Humans were not designed to eat glutens and wheat becomes sugar in your body and creates terrible inflammation. I also take 1600 mg's of SAM-e daily that I buy in blister packs (jarrow brand). Try rice pastas in stead of regular pasta.

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Cat, Community Member
9/26/11 7:19pm

Too bad we cannot have that stuff legally, but I wouldn't smoke it, cannot deal with smoking or smoke, I would have to cook it into food I guess. I have not used it before, so the names and things you say about it are alien to me....lol. I buy my meds overseas, costs waaaay too much, nothing strong, just Soma's and Ultracod or Darvocet. They help, since doctors here in the States are too scared of giving out meds. When I was on Lortabs 5, the lowest dose, I was in Heaven, I could clean and could move and do whatever I needed to do! But they took me off when I asked for more, I was then considered an addict. So I do not go to doctors anymore, I hate being labeled like that when I know what meds work for me. I have spent too much money and time (years) with doctor's to be treated so badly! And if they won't give me a low dose narcotic for my pain, then there is NO way, even if GA. allowed it, the medical cannabis card. It sucks that people out there ruined and abused narcotic meds for people like me who really need it.

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kimmyc, Community Member
9/28/11 10:39pm

Well. I live in California and have a medical marijuana card. After being on narcotics for thirty years, NOTHING WORKED anymore. So, at 50, I was desperate and willing to try anything. I changed my diet completely, got my masters in clinicla psychology to undersatne psychopharm and then made intelligent choices to have a quality life.

NO WHEAT!!! NOthing to cause inflammation!!!! and cannabis tincutres which are raw, soaked in alcohol (like all tinctures)  and voila! pain free without hurting my organs.

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Cat, Community Member
9/29/11 12:31pm

My hubby and I have been talking about having no wheat in our diets, plus I am a lil overweight, but not by much. But 'HOW' do I get Cannabis without breaking laws and doing it like you do kimmyc?

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kimmyc, Community Member
9/29/11 6:39pm

Great! Get rid of the wheat and cut back on ALL starch as it is sugar and causes arthritis, pain, weight gain... AND inflammation. Cannabis brings down swelling. I also suggest eating pineapple and papaya and grating fresh turnmeric root on your food. Coconut oil will help you lose weight AND it will convert to keytones in your liver and fule your brain. I don't know what State you are in - do you have access to medical marijuana?

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Cat, Community Member
9/29/11 11:12pm

kimmyc I am in GA. and I wouldn't even know how to aaproach any doctor or anyone about that! Seriously, can you see me going to a doctor and asking for that?...I would be labeled a druggie, I already have a rep from my last doc about the low dose hydrocodone and Soma's I was taking, that actually was a life saver, til I asked for another prescription. Now, I am not taken seriously anymore, and I am sure my records reflect that. Sucks BIGTIME! I am waiting for Soma's and Ultracod to come from Europe, I have to wait a couple more weeks for them to get here, takes to long and too much money. But I know I am getting something that helps.

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kimmyc, Community Member
9/30/11 6:39pm

http://georgianorml.org/a-small-first-step-toward-medical-cannabis-in-ga/

 

Well, I guess they are still restricting medical cannabis in Georgis to glaucoma and cancer, but I have sent you to the link in case they make changes.

 

I was on soma for years. In fact, since 20, I have been on some pharmaceutical - actually, always more than two!

I have a master's in psychology, have studied orthomolecular medicine, got the highest grade in psychopharmacology... which is why I KNEW I had to get off the meds or the multiple problems I was having would only get worse, with side effects that were leading to chronic medical conditions.

I hope you find a medical cannabis expert because it is a miracle herb. With each plant having unique properties and all plants offering anti inflammatory properties AND cancer cells can't grow, and can only shrink or disappear... Is it any wonder the phamaceutical industry is threatened? They have been trying to make pills but you just can't tweeze apart a plant that has over 80 cannabinoids which act on our cannabinoid receptors...

Check it out, it will change your life. I don't smoke it - once in a while I vapourize it, but I eat it raw and make tinctures, butters.... It has given me hope back and helps not only my fibromayalgia, but completely stops my facial twitches, migraines (gone) and spasm in my jaw which is titanium. Prior to switchng I was on morphine or norco or methadone or a combination of all... ambien at night and soma day and night. Now, cannabis!

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Cat, Community Member
10/ 1/11 7:00am

It's so funny, I never knew about things like this. I would have never thought about using this stuff before. But I do understand why would you have a life, if your life cannot live outside of your heating pad and bed! I mean, I would NEVER kill myself, or threaten for attention, but I can see why people go to the streets or buy overseas, or even think about death as an alternative to the pain and daily life. When I do not have my meds, like now, I feel like an 90 year old woman (I am 38), that is all balled up in a knot, and cannot move, plus all the crying from pain and frustration. But when I have my Soma's and Lortabs 7.5, I do not feel super, but normal, I can clean and be the wife my husband needs and a mom to my 15 year old son, who needs me to be here for him to do homeschool and he has problems from being born early, nothing major, but he takes alot of my time as well. I have become a hermit, I am hate going out, scared of if I have a sharp pain and do not want anyone to see me like that. It's sad that they have to take care of me! I am becoming socially absent now. I won't leave the house even for weddings or funereal's. My husband does all the shopping for me. If I somehow get my hands on the meds, I will go to the store and do short trip stuff, when I get out more and more, I start to become more social, but then I may run out of money and meds and have to start over again. I really am not a depressed person, I only feel like that because of the pain and problems. When I have my meds, I sleep through the night and wake up refreshed, but also ready to take more meds, because about 6 to 8 hours later I need them. I can tell when the meds are wearing off, I slowly can feel the knots and pain creep up. But the meds works so well with my body, I have a table full of meds that the doctors keep giving me, even though I protest telling them I have had this before I know what works and then I am ignored or lectured on addiction! I think about when alcohol was illegal, I wonder if one day they will allow weed to be legalized? Go to www.pogo.com, look me up, buttercupkisses7. If you do not have an account get one and let me know what your screen name ison here and then we can get each others e-mail without others knowing it, it will be private and between us.

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samantha, Community Member
6/18/13 5:59pm

It does suck because my passion doctor looks at me like all I want is pain drugs it sucks at times you were rather be dead than alive. I hope the idiot helps me tomorrow because I honestly can't take much more.

 

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Joyprincess, Community Member
10/18/11 3:07am

What your saying about the type of foods to cut out makes since based on how my body reacts to different foods...I've FM for 12yrs with the diagnosis....I'm on a roller coaster between weight gain & weight loss....compounded due to my addiction to sugar even as a child....I had to be forced to eat food...I was also an athlete & would go days without eating not on purpose it just wasn't important at that time I wanted to gain weight & couldn't.....after having children I would gain then lose the weight, always losing muscle mass & using diet pills along with my tough workout schedules that I would set for myself; so over the years I've always been able to lose the weight only to gain it back mostly due to my addiction to sugar, not eating the right foods consistently & not enough calories....right now I'm battling extreme pain, fatigue, insomnia, & depression...adding insult to injury in 2005 not knowing any better I let my PA & doctor at the time talk me into having a total hysterectomy that wasn't necessary, which I'm sure only makes losing & keeping weight off more difficult....My whole life I've always said that I would never put any illegal drug in my body but I'm convinced that doctors do not promote anything that is herbal in nature as a medical option for healing instead they promote toxins that cause other health concerns....it breaks down to being about the $$$$$

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kimmyc, Community Member
10/18/11 11:56am

Ooh, I am so sorry... I know all too well what it is like to let doctors near you with sharp objects... They also no NOTHING about diet!

I don't know where you live, but if you have access to raw milk from grass fed animals, It is a great way to lose weigth and tone up. Full fat only!! Skim milk is what they give to pigs to fatten them up!

Sugar addictions are tough and hard to break if you eat wheat which is sugar. Given that we should only have 3/4 of a spoon of sugar in our blood to be "normal" think of your poor pancreas! A great way to fight ANY addiction/craving is to take equal amounts of full flush niacin with vitamin C (capsule) three times a day AFTER meals. You will itch, go red... as the toxins leave your body. My older sister does it to mainatin chemical balance which keeps the paranid schizophrenic away! She is nw off of seriquil... (I digress) okay, so back to us and pain... I have been looking out of the box as much as possible and have found some interesting things I am trying. Check out grounding: http://www.emf-health.com/earthcalm-fibromyalgia.htm

 

and also: http://www.equilibrium-healing-arts.com/iodine-lugols-solution/

 

I'll let you know what happens! I have a masters in psychology and am devoting most of my time to this. Will never practice therapy as I don't care for the methods and am not one to be part of a system. I say this because I think it is also to examine the mental aspects but not traditionally as they might. Breathe through your chakras and release the emotions that are "stuck" in one of the 7 locations.... We hold energy in our body which creates negative vibrations - like our own "dirty electricity" we need to release it. I don't believe you need to forgive people who have consiously hurt you - I view them as growth opportunities and view them as nothing more than disturbing energy.

I'll let you know how the iodine works! I am doing 8 drops a day and listening to my body...

Also, for muscle tone, take a tsp. of creatine powder daily - if you get pimples, back down to every second day. Also! DO NOT CONSUME FLUORIDATED WATER!!!! Hmm... maybe I'll write a book one day... :)

Kimmy

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kimmyc, Community Member
5/18/12 8:02pm

I have reversed the "dis-ease" of fibromyalgia - it took 8 months - here is what I did:

stopped drinking/cooking with ANY water that has fluoride. We switched to reverse osmosis and then I take pineapple electrolites to give my body what is now missing.

I cut out: potatoes, wheat, eggplant and tomatoes. NO night shades!

I started having 2 far infrared sauna sessions weekly to help detox.

I started taking 5htp and l-tyrosine and medical cannabis tinctures.

I started taking 2 drops of iodine daily in my AM water.

 

I have my life back at 53 and haven't had a narcotic for almost a year :)

Drink raw milk from grass fed cows (full fat only) and you will firm up! The far infrared saunas helped detox SO well that I don't even get hot flashes which I have learned, are a sign of t

oxicity in ones body.

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Lin, Community Member
7/ 2/12 6:56am
LIN Hi Kimmiec Have been reading all your comment on what you do to help with FM and would like to thank you as a FM sufferer for 12 years now, have tried all kinds of meds etc, some working for awhile but mostly in constant pain and have gradually got worse over the years. I'm from England originally and lived in Africa for twenty years, I now live in very cold Scotland and continue to suffer, the Docs here do recognise FM but do not give out strong meds. I take on board all you have said about a good diet and will deft cut out dairy etc and love the full fat, grass fed cows milk. Also going to chat with Doc on what you said about cannabis tinctures, taken correctly in moderation and with a prescription and a great help by the sounds of it has to be a ok in my book. Thanks so much for you fab input. Lin Reply
kimmyc, Community Member
8/ 9/12 12:43pm

Hello LIN

 

As I have continued to dig into fibromayalgia, I have found a few more clues to helping myself - whether or not this would work for you, I don't know!

Most people with fibromayalgia also have thyroid issues - I learned a few months ago how damaging it is to the thyroid to drink water that has been fluoridated. England, like most of the U.S. fluoridates Go to www.fluoridealert.org if you want to learn more...

My Dr. also put me on pharmaceutical grade iodine - also known to some as 10% lughol's solution. Iodine and fluoride fight for the same spot in the body and you don't want the fluoride to win! Also, iodine helps against fukushima radiation (My Dr. has put most of his patients on it since fukushima...)

 

STAY AWAY FROM BLACK AN GREEN TEAS!!!! Very high in fluoride... Try these for yourself and if after three months nothing changes, well, at least you tried!

 

We also put a far infrared sauna in our house which helps soft tissue damage, circulation, inflammation... It has really helped speed things up. Perhaps there is a spa or gym near where you will be living in Scotland that has one?... The more I detox in the far infrared sauna (VERY DIFFERENT FROM REGULAR SAUNA) the better I feel... I did, however, go through a few months of bloating and red spots as my body started to illiminate some of the fluoride. Actually called fluoraderma.

 

So in cold, damp Scotland, make sure to stay away from foods that cause inflammation!

 

Good news!

"Many European countries have rejected water fluoridation in general. This includes: Austria, Belgium, Denmark, Finland, France, Germany, Luxembourg, Netherlands, Northern Ireland, Norway, Sweden, Switzerland,[33] Scotland[34] Iceland, and Italy.[citation needed] A 2003 survey of over 500 Europeans from 16 countries concluded that "the vast majority of people opposed water fluoridation".[35]

[edit]

 

So, England does, but not Scotland so you don't have to hunt out reverse osmosis water!

 

The other thing I have done to help is I got rid of wifi in our house and went back to the old fashioned plug in. You don't want to be bathing in wireless! I also bought a grounding (earthing pad) that I can sleep on and  put my feet on it when I'm using my computer. Earthing.com is very cool! I also walk barefoot on the grass for 20 minutes a day - grounds you to the earth - important for sensitive people whose bodies struggle with too uch electrical "stuff" blowing around. :)

 

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50 yr old w/FIBRO, Community Member
5/18/12 4:24am

OMG! Reading you story is ME!  I am 50 years old with Chronic Fybromyalgia, original diagonosed in California 19 years ago and my doctors have labeled me as well. NO MORE PAIN MEDS YOU DRUG ADDICT! ...well said more or less. Anyway, Oxy makes my life NORMAL and now I am CUT OFF. No one understands the Severe Pain that we with Fibro go through. I HAVE to work since my Husband recently had an accident and suffered a Brain Injury at work. After getting a Lawyer we LOST our case against our COUNTY and after a year he has still no rcvd any Disablilty Payments. So........... I am the ONLY one bringing in income and with this Extreme Pain I wake have to wake up 3 hours before work ( ane I live 5 minutes from work) just to get ready with this Extreme Pain.  I have become a recluse, so Depressed and have NO SOLUTION. To my original intended question before I got all personal :).. was to be about the Cannabil Tincutres. I'm in Arizona and would like to know where you get this product.  So many reviews, I have been checking and was intrigued by yours.  Thanks, Signed.... Desperately IN PAIN in Arizona

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Tiffkd, Community Member
11/18/11 1:32pm

How do you order those meds over sea's with out a prescription from a doctor, Ive tried all kinds of meds and mixes and matches. I need meds that give me energy to take away my Chronic Fatigue and Meds to control my Chronic Pain. I'm a single mom of a 16 yr old daughter and I have no help so I need to beable to work, cause they won't approve me for Disability so, I'm out of options..Please help me or give me some suggestions...Desperately seeking Help...

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BCS, Community Member
1/25/12 2:17pm

Im not sure how to order med but i know what everyone is going through. I have Fibro, spinal stenosis, spondylosis, 3 herniated disks, cronic fatigue and cronic pain, and a doctor that refuses to change me off the meds that dont work. Be stong. I am only 26 with a 7yo son, but have dealt with all of this for 4 years now. my disabilaty pays for my car then im out of money. im at wits end. since all of these problems started i am now leagaly crazy; I have D.I.D and other mental issues now. my only wish is that the doctors would listen to us and help us instead of worrying about the money in their pokets. hang in there cause one day they will have no choice but to listen when we all speak up and tell them they are wrong!

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Anna, Community Member
9/ 9/11 8:43pm

Avena Sativa is oats.  That might be what they're talking about.  Almost like oatstraw, which is good for all of us.  It comes in capsule form.

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Valerie, Community Member
8/ 9/12 9:15am

I agree with you about the eating, although eating healthy food all the time gets pretty expensive when a person with such severe fibromyalgia usually is restricted to bed and money has to be budgeted very well. I would like to know more of the kinds of things you eat when dieting is so restricted. I agree with you 100% about the methadone! I was on the exact same dosage until my doctor up and switched practices and now every doctor I talk to about methadone is just to nervous about it! One pain specialist told me that they would "use it as a last resort". It is EXCELLENT in treating the pain associated with fibromyalgia. I was on it for almost 6 years and never had a problem with it! Your post is so awsome because you can tell you have so much experience with it and it helps to get other's input on what you can do for it.

Thank you,

Valerie

 

 

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unicorn64, Community Member
9/30/12 3:07pm

The lady in the picture is the Health Guide not the person asking the question Genius!

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Danii, Community Member
1/ 7/13 11:53pm

Hi there, I recently removed the above from my diet and its has been hugely beneficial.  However Im still struggling with Exercise, i do walk the dog but what other excercise would you recommend, Ive tried a few yoga dvds but still get pain during and after? Do you recommend Pilates?

I would like to get in more meditation yoga. Many Thanks Danii

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Danii, Community Member
1/ 7/13 11:53pm

Hi there, I recently removed the above from my diet and its has been hugely beneficial.  However Im still struggling with Exercise, i do walk the dog but what other excercise would you recommend, Ive tried a few yoga dvds but still get pain during and after? Do you recommend Pilates?

I would like to get in more meditation yoga. Many Thanks Danii

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Cat, Community Member
6/21/10 12:46pm

I was diagnosed a year or so ago, but lived with the Fibro pain for a few years before. I take Lyrica, Soma's (off the internet), Zoloft...some days are ok and most bad! I was recently given 7.5 Hydrocodone and took it about and hour or so after my regular meds which are as follows, (1 75mg Lyrica 3X's a day, 2 1/2 Soma and 1 Zoloft, 1 prilosec, 1 20 mg Lipitor, and sometimes low dose Klonopin as needed, in the morning, then 2 more Soma's about 6 hours later, I know it sounds bad, but I need some relief!). I felt like a NEW person with the added Hydrcodone, but cannot get my doc to give me any! I finally felt free with my body and life and feel treated like a druggie! I am about to lose my Health insurance and do not know what to do now! I am scared and worried, which doesn't help. I am a lil overweight, but not much. I do not eat alot of bad things anymore. What in the world am I gonna do now? I know I can still get the Soma's online and the Lyrica & Lipitor from Connection To Care program. I feel betrayed by my body and the doctors here don't care. I stay on heating pads in a cold house, so as not to overheat, crunched up on the couch or in the bed. Any solutions??? Cat, age 37 oatmeal0114@yahoo.com

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cyan, Community Member
6/28/10 7:29pm

I have been taking Amitryptiline for years and it has worked well except for the excessively dry mouth that is annoying! My doctor recently switched me to Cymbalta and I'm having a terrible time with nightmares (every night), insomnia ( I can't sleep until I'm ready to drop). I also am noticing more achiness. So I'm going back on Amitryptiline. I guess I'll have to live with the dry mouth because compared to what I'm experiencing now, I can't live with that. I take Oxycocet / Norflex/ and Codeine for pain (depending on the severity - not all at once of course). I also suffer from very bad frequent migraines. Pretty much the only thing that gets rid of them is the Oxycocet. I apply pain patches called "Salonpas" - often found in Chinese Grocery Stores. I find drinking Barley Green really helps too. I do the same as you and keep the house cold and rely on heating pads, ice paks and a vibrating back support massager (it has heat and vibration). Can't afford Lyrica, although someone told me recently that it also has nightmares as a side effect. Amitryptiline is dirt cheap. Not to be indelicate but it can sometimes cause 'unnatural' constipation so when you first start on it, you might want to inquire about Lactulose. It's a sweet liquid that works like a charm with one tablespoon. This normally only happens when you start on it, increase your dosage or travel and your eating and sleeping schedule may be way out of wack. I know for some people Cymbalta works but for me, I'm going to get back on Amitryptiline....

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Cat, Community Member
7/ 2/10 12:16pm

I tried Cymbalta and it gave me TERRIBLE stomach cramps! I will look into Amitryptiline. I don't know of any doctors near or far who will give my anything narcotic. Thanks anyways! I do have the IBS and headaches, but I have always been a very indept dreamer, Effexor intensified that! I decided to get off that med.

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beljew, Community Member
12/12/10 9:32pm

had to respond to your posting.  i have tried everything and (knock on wood) what is definitely working for me is:

 

NO GLUTEN!!!!

AMITRIPTYLINE (10 mg at night)

exercise (hate it!!!)

 

but seriously all three above is my new 'cocktail' and its working!!!!!  the NO GLUTEN is very hard, but I also have Celiac so I HAVE to...no choice.  The Amitriptyline does give a DRY mouth, but who cares - no pain!!!  I take a 10 mg pill and chop off a bit of it so essentially I am taking 3/4 of this tiny little pill.  I was in so much pain that I could not even roll over in my bed sometimes!!!  NOW I am at the gym at least 5 times a week, NO gluten at all, and that little happy pill at night and boom, I feel like I am 18 again! (I'm 44).  I swear.  The NO gluten is hard, but I can tell you what brands of pasta, bagels, wraps, cookies etc to buy.  I've tried them all!!!!  I too tried Cymbalta and had an anxiety attack in the middle of Grand Central Station!!!  never again....

 

I hope this helps!  I would love someone to NOT suffer either and start living their life again!!!

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SPM2011, Community Member
2/ 1/11 10:09pm

Do you know the number of "touch points" you supposedly have...?

 

As for me....

  I've suffered with FMS for the past ten years.  Ten meds in the a.m. and 7 meds at bedtime...  Feel 80 but will be 50 tomorrow... SOOOOOO mad I got it...  Office of Worker's Compensation approved claim that harassment by multiple supervisors while I have been in the same extremely stressful position for the past 22 years now... sparked the start of my diagnosis in Sept 2000...

Losing massive amount of hair (front of head), arms, eyebrows; have extremely dry mouth--so much so that I can't talk for more than a few minutes before tongue sticks to roof of mouth and lips stick closed... how embarrassing when talking with a client for 1.5 hours or speaking/presenting in front of classes with 40 or more students...!

Just about all the side effects listed have come upon me (IBS, dizziness, heavy depression, and so on, and so on...  There are really just few that I don't have.

Any thoughts/ideas, suggestions, etc.?

Still working full-time, but almost claimed disability retirement (informed I should easily be approved... but then, who knows?) when couldn't get out of bed during most of October and November.  But, after sleeping most of that time, stress gone, I went back to work in December and feeling better emotionally now.  OF course, still hurting, not interested in going to do anything, just want to get home quickly, change to my pjs, get into my recliner, work on my laptop, and then go to bed... only not to sleep for more than 1-2 hours, for a total of maybe 3-4 hours a night... exhausted all the time, fell asleep at desk while supervisor standing in front of me talking to me... fell asleep in car at major intersection, foot on clutch at front of line of traffic at light, awoke to car behind me sounding his horn... easily could have allowed foot to slip off clutch and dart out into major intersection traffic... fall asleep while working, using computer/mouse... writing (making squigglys instead of words and numbers)... and SO ON....... my oh my!

Well, how was that for rambling...?  Did I make any kind of point, ask any lucent questions, etc.?  Oh yeah, my memory and thought clarity are very effected.

I'm not sure if everything above after my initial question is in any way worth reading, but it feels good to say it!!  Forgive me, please!

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Belle, Community Member
9/16/11 10:20pm

I understand. I've been rambling almost just like u since 1990. don't know how ur still working. I know exactly about not sleep & dosy in daytime. can't spell any more either!  belle

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Fi10_Fibro, Community Member
5/30/12 1:58am

I understand how it is when you just need to  'get it out' and wish, more than anything,  someone, anyone would hear you.  Well, today I heard you!  As I was reading your story I got so excited.  I'm sorry that sounds so horrible.  But It was My story!  I couldn't believe it.  I hate this for us all but it was nice to know I'm not the only one that becomes unable to open my mouth and when I do they can't understand a word I'm saying so my 11year old daughter translates for me, please get my mom a glass of water.   I'm not the only person that falls asleep and is at a constant Fight with my body just to function not to mention we do all this while in pain.  It does make it worse when we've fallen asleep at some embarrassing times.  Okay, you wanna laugh?  I fell asleep sitting on the (toilet) and fell off, slammed my head into the corner of the wall, and landed on my side, head hurting with a huge knot, screaming, yes, with my pants down.  I didn't know whether to laugh or cry.  So, I started immediately thinking about how pathetic my life has become, or the lack of, and I cried but then I pictured myself at this point in my life and upset about my life.  I simply just had to get over myself cause this was no time for a pitty party and miss all the fun!  Oh well, just wanted to tell you about having a sympton/side effect twin and maybe make you chuckle a little from my story.  

 

To answer your question--- there are 18 trigger points divided equally between the right and left sides of the body.  Here is a link to a diagram...

 

http://fmaware.org/site/PageServerda3b.html?pagename=fibromyalgia_diagnosed

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yvonne, Community Member
1/29/13 9:49pm

I Cat :0 My name is Yvonne . I too tried Cymbalta . which gave me VERY bad stomach cramps. I tried it 3 different time. I was but on Lyrica, which work VERY well, for me. But , after the trail period, i had to quit taking it . Could no longer afford it. I am on amitriptyline nowl I started it 3 weeks ago. I started off taking 10mg at night for a week, and now I am on 20mg . Seems to be helping a little, but I wake up every morning  light headed or with a headache.  I see a arthritis Dr, and a neuro. I also have polyneuropathy in my legs and feet, which doest's help the fibro. Don't give up, Please. Be persistent . Good luck :)

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Hopeful Michele, Community Member
12/ 7/10 8:55am

I have been taking Cymbalta for several months now and it is the only thing that has given me the most relief (60 mgs) however you must take it in the morning as early as possible as it can interfere with sleep at night.  Then at night only, I take one 30 mg tablet of Serapax to help me sleep and that combination is working.  However, I am battling the constipation thing with Cymbalta.  Even taking Lactalose (35 mls) is not enough and I have to add sometimes some Coloxyl tablets (after dinner) to help soften stools.

 

I have been undergoing Ketamine Infusion therapy in hospital for 7-day treatment and it has helped too, but again the constipation is a problem.  Just recently had my second Ketamine treatment but decided to go off the Cymbalta to see how much the Ketamine was working and I have quite a bit of my pain return, but not all.

 

I am presently seeing if there is another tablet to try like Cymbalta that doesn't give me the constipation problem but I think probably there is not, as I've tried just about all them.  Some of them give me palpitations and Lyrica (150 mgs) gave me bliferitus in the eyes.  The Cmybalta has been the best, so I feel I will probably end up back on that and just have to manage the constipation.  On Cymbalta I found I needed far less pain killers which constipate me anyway and don't treat the pain long term.

 

It's nice to know there are others we can talk to about this awful illness.

 

Have any of you had a milogram or epidural in the late 70's or early 80's.  You may want to investigate a condition called aracnoiditis which was caused by the dye given during this test.  The condition produces similar symptoms as fibromyalgia.

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Foggy 45, Community Member
9/ 6/12 12:02am

Michele, I too am on the Cymbalta 60mg. The best thing I found for the constipation is PGX Fiber by Natural Factors. Dr. Oz had talked about it one day on his show and I decided to try it. It is hands down the best. I use one packet a day in my yoguart, cottage cheese or cereal. It doesn't really have a taste. I hope this helps you.

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flipchick29, Community Member
4/17/11 6:37am

I am amazed that you are able to use a massager!! I have not been able to stand, any kind of vibration for years now! some days even the minor vibration in the steering wheel of my van while driving is so painful I just want to cry! The heat does seem to work some, I find myself wishing for a body sized hot water bottle that I could just get inside then maybe still be able to complete the simplest tasks of my day while still enjoying the heat of the hot water bottle!! :)

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Belle, Community Member
9/16/11 9:57pm

Cat, wish I could talk with you or email. I too am an FM sufferer. started with vomiting miagrains daily x 5yr in 1985- then pain went into my body.dx with FM.Dr.told me they knew nothing to do with it. Then I was tried on all the drugs the [picture lady mentioned-they all nearly killed me along with the FM] I'm an old nurse but couldn't think. Back then they really didn't think anything was wrong except in your head! Which some still do. I was 35y/o now 62. It's been a hell of a road. Early on thought about sucide a lot. I'm a christain & believe in healing but that's not what's been for me. I will not bring the bible into this because people offen take everything that's in the bible literally instead of taking time to account for history & geography. Anyway, wish people could get over "being addicted" when their in so much ? they're knarled up in agony.  Pain is after your body starts getting out of agony then you feel the pain in your joints, muscles,back, head, toes anyway get the picture. Guess FM is somewhat different for everyone. Have someone have it badly enough they'll try anything. Now I'm having problems with or without med.s mabe celiac. depend on large amt. of vit esp certain ones [antioxidants] have to take with lots of water & yogart. I have other med.issues, too. Yoga helps greatly. Belle

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amie1019, Community Member
9/26/11 3:41pm

Hi i was diagnosed with fibro about 2 weeks ago. the cold hurts me the heat hurts me and the last few weeks my face feels like its on fire (my bp is great other than my pulse being in the 100's) i take nurton 400 mgs 3 times a day and norco 4 times a day and trust me i can't go a day without the norco not just because i maybe addicted but if i didn't i couldn't move i can't climb stairs anymore i can't walk the malls like i used to i hate it and every part of it. i just want to be me again. bengay is my best friend also, this all started 6 yrs ago when i had my foot operated on for planters faciatis and from there my life has been miserable ever since. guess i should say i was diagnosed with rsd (a horable disease) 5 yrs ago after the surgery...is there any suggestions you may have for getting rid of the hot face it drives me nuts and the weird thing is if i get cold you would swear i was having a seziure its reall crazy.

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Darling Dolittle, Community Member
3/24/11 1:58pm

For the muscle spasms I take regular table mustard, (tablespoon with a glass of water, every two minutes till the spasms stop,  Daily I now take about six tablespoons a day and keep them mostly under control)  Without  the mustard I am a mess!  My muscle spasms are so bad that it looks like an alien is trying to get out of me, or the body part with the spasms can twist so bad that bottom of my foot can be twisted to be on top..  It is very very painful....At night I take a valium after I take two table spoons of mustard with water. and other then having to get up to relieve the water I drank.  I can sleep a lot better...

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Orme, Community Member
9/21/12 5:22pm
I have had pain for 5yrs now and had no relive from any medication except morphine, even though I'm still taking a concoction so many different drugs and vitamins. I was told three weeks ago that the best thing for me would be to come off all my medication and see if I build up my pain threshold, can this really work? I'm scared that this will leave me in agony for weeks! Reply
Fmrdncr, Community Member
1/ 6/13 4:54pm
It would be really nice if there was a medication the really did work but did not have the awful side effects like Lyrica. I am taking Savella after trying Lyrica and Cymbalta with no positive outcome. I am not sure if the Savella is even doing anything. Thanks to the Lyrica (not) I gained 30 pounds in 2 months with painful swelling and now have to find a way to exercise with the pain so I can function better. It's a vicious cycle that has been going on for a verylong tome. I am looking forward to some other choices in the medication area. When are these "new" ones coming out. I am losing hope. Reply
dsrnc, Community Member
2/26/09 9:11am

The medication(s) that work for me may or may not work well for you.  That is part of the frustration and confusion about this condiition.  Diabetics have insulin to control their disease, there is no equivalent for fibromyalgia.

It has been a course of almost two years of trial and many errors to find the right combination of prevention/maintenance drug and an effective pain reliever for breakthrough days.  Its not perfect, but it is much better.  I function. 

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PAULA G MORROW, Community Member
2/26/09 11:32am

HAVE YOU TRIED LYRICA?  I AM JUST STARTING TO USE IT AND IT SEEMS TO BE HELPING.  SO FAR I DON'T HAVE ANY OF THE SIDE EFFECTS.  I HOPE IT WORKS FOR YOU.  I HAVE HAD IT FOR YEARS AND RELIEF WOULD JUST BE WONDERFUL.  THE BEST TO YOU.

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Barb, Community Member
7/20/09 12:21am

I was recently put on lyrica - about one month ago and I so far don't notice any difference from it...I am willing to give it a while longer as I'm not noticing any side effects from it, but i'm not seeing any benefit to it either and I also cannot afford it  - with all the other medications I am taking that are helping I just do not see adding an expensive medication to my regimen when it isn't making any difference.

 

I am currently living on social security disability and medicare and i'm already in the donut hole period where I have to pay for my medications and I just cannot afford to pay for anymore medications...and lyrica is adding about another $160 a month onto my medication bill according to my pharmacy (Costco).

 

 

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NATALIE SMITH, Community Member
2/ 2/11 10:54am

I was put on Lyrica 6-7 months ago for my Fibromyalgia and it's helped me the majority of the time except the week before my period when i'm in alot of pain.I'm also on Amitriptyline which has helped my pain and depression.The only problem is with Lyrica i've put on a stone in weight since starting it.I go to gym 4-5 times a week so not a couch potato.I'm thinking of lowering dose or coming off completely due to weight gain.What would people suggest? I have tried Gabapentin but it made me feel nauseous,so came off it.

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don, Community Member
11/23/09 1:00pm

i have tryed lyrica and it didn,t work for me so i tried cymbalta and it really helps so far good luck

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kimmyc, Community Member
5/29/10 3:07am

methadone and sativa edibles and tinctures.

gluten free and sugar free diet. No artificial anything! yoga, meditation, massage and far infrared saunas

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Belle, Community Member
9/16/11 10:09pm

sounds like u r on the right tract. listen up people.  belle

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Toadey, Community Member
2/26/09 1:25pm

Lyrica

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Barb, Community Member
2/26/09 8:10pm

There is no one best medicine for fibromyalgia as each individual person's fibro is different and each person will respond to medications differently.  Each individual is going to have to go thru trial and response on multiple medications and medication combinations until they find what helps them.

 

I am by no means cured of my fibro, but I am better managed than I was before my dx of fibro on a combination of medications that include:  fentanyl patch along with percocet for break thru pain, zanaflex(tizanadine) as anti-spasmodic muscle relaxer, topamax as migraine preventive/anti-seizure along with axert for aborting migraines I do get,  & prozac for ssri/anti-depressant.  I also went thru several years of cognitive therapy with an exellent therapist who helped me learn many coping skills to deal with my bad pain including relaxation techniques,  and self hypnosis.  One of the best things I've learned to do is to pace myself.

 

I hope this answer helps you.  Fibro is not fun and I  wouldn't wish it on my worst enemy.  I hope you get some relief soon.

 

Barb

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SatireFireFly, Community Member
7/19/09 11:42pm

Hi Barb,

If I may ask, where is your doctor located and whom do you see? I was prescribed fentanyl for my fibromyalgia and was thrilled to be up and functioning again. It controlled my pain and I began to have a life again. Then my husband and I relocated to Pennsylvania and no doctor here will prescribe it. In fact, they are reluctant to prescribe anything. Today I was at a breaking point and I called my doctor in tears and he advised I take two extra strength tylenol. The rope has been long, but I'm getting to the end of it. Please respond XxThink_PinkxX@live.com

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Barb, Community Member
7/20/09 12:16am

at the time I was living in the pacific northwest but I recently moved to Ohio and now I am having some difficulties finding a doctor willing to prescribe the medications I have been taking for several years myself...however, my new primary care doctor told me he will not force me into going cold turkey either so I am not certain what my future holds here.

 

I  wish you relief from your pain my friend and finding a doctor who will be willing to step up and treat your fibromyalgia and your pain adequately.  It is not right that we should have to suffer.  The new rheumatologist I saw here won't even do trigger point injections for fibromyalgia here and he is the head of rheumatology at a major university hospital in a large city...doesn't bode well for fibromyalgia treatment does it.

 

If you cannot find a doctor who will prescribe what you need, I suggest you keep looking for another doctor until you find one willing to work with you as there are doctors out there who do understand what fibromyalgia is all about who will see your pain and what it is doing to your life and will treat your  pain accordingly.  I  do not know if you have seen an osteopath (D.O.) but I have found them to be more understanding than traditional M.D.'s so perhaps you could check into seeing one of them???

 

Goodluck my friend and i wish you pain free days.  Also, please check into a fibromyalgia support group in your area if you can.  They will likely know of doctors who are willing to prescribe the kind of medications we need and doctors to stay away from.

 

 

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SatireFireFly, Community Member
7/20/09 1:39am

If you don't mind my asking, where in the pacific northwest? My current physician is a DO, he was very compassionate at first, but then he lost his practice and had to join a new one. From that point on he has been cold and seemingly uncaring. I fear for my marriage, for my family, and for my health. I feel almost ready to end it, if I were not a religious woman I already would have. I did use a chat room for fibromyalgia and that was a huge help, but I have not been able to accesss it for quite some time. Thank you again for all your help.

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sweet, Community Member
8/28/10 8:20pm

Hi 

I feel for what you are saying. I was so tired of pain that I fell into a depression and I attempted suicide. I believe that all the different medications that I was trying turned me into a chemical stew and affected my behavior. I felt that I could not tolerate any more pain. I finally convinced my doctor to give me oxycocet and I am more able to tolerate the pain. I also can tolerate some exercise.  I take gravol for the constant nausea as well as cesemet, and 3 100ml of tramadol per day and effexor. Life is still difficult but I function better. I cannot work and I have accepted that. without the oxycocet I can't function very well at all. Don't be afraid to get a new doctor. You have to keep serching until you find someone who believes you. Pain is subjective and therefor very hard to prove. It is very hard to have a physical relationship with this disease. I lost my love because of it. I have met much more sensitive and caring men since then. I meditate every day on the attributes of god. (or love) focus on only that and don't take this attack on your body personally. You don't deserve it and it is not your fault. I hope this has helped.

Jodi 

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Mrs F, Community Member
4/15/10 11:00am

I know how frustrating most DR's can be in the treatment of Fibro, they do not want to prescribe narcotics...the paperwork is not worth their time, especially HMO DRS...my life has been saved by seeing a "pain specialist", go to a "pain clinic"!  It may cost you but well worth it!  These DR's specialize in the treatment of pain and are not afraid to prescribe something to ease your pain.  Good luck!

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DBinCO, Community Member
6/16/10 1:48am

I can so relate to everyone's frustration with PC docs. I was literally bed-ridden over 6 yrs due to the pain, the best my PC could do was drug me up on morphine and percocet 20's. I was so foggy, but still in horrific pain. When that PC had to quit do to a cancer diagnosis, my new PC refused to refill my Rx's and stated there was nothing wrong and after much arguing he stated he would only if I saw a neurologist. That was the only smart thing the guy did. The one he referred me to comes to our town twice a month. (I live in the northeast part of CO and we have VERY few resources here). After an extensive exam and eval. he asked if anyone had diagnosed me w/ Fibro. Nobody had. When I told him that I was told there was nothing wrong with me, he came unglued. I have severe Fibro and Neuropathy as well as sciatica and a scoliatic curve from my core getting so weak while I was bed-ridden. When I was finally able to LIVE, my back couldn't handle what I was doing, thus the scoliatic curve. I am on Fentanyl patches as well as Lyrica, although the Lyrica helps more for the Neuropathy than the Fibro. I have to be very careful with it though because it causes such severe swelling in my hands, feet, and legs. I do catch alot of grief from those who don't understand and criticize me for using the Fentanyl and telling me that I'm addicted. It is a VERY powerful drug and dangerous. If a patch is damaged or overheated too much medication can be released causing an overdose and death. I have seen many reports of it happening. I am extremely careful with them as I have to use a combination of 2 patches of different doses changed every other day instead of every 3 days. I am not drugged or foggy and I can FUNCTION. I still have incredible pain, but it's now managable. Living in CO the weather and pressure changes really affect the pain levels. That's something to also be aware of. Wind, storms and pressure changes really aggrivate the symptoms. I pray you all can find the right docs to get you the Fentanyl again. Have your PC refer you to a Neurologist - they specialize in this. 

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lora, Community Member
11/15/10 6:59pm

i hope you are better

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Belle, Community Member
9/16/11 10:27pm

I too see an osteopath. belle

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pam c, Community Member
2/11/11 4:48pm

Get a new Doctor with an open mind.....

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kimmyc, Community Member
9/17/11 9:41pm

Thanks Barb,

 

I finally stopped ALL pharmaceuticals in March as I could feel the destruction on my body. I illiminated ALL glutens and sugar from my diet and take medical cannabis in tincture form during the day, in edibles or in coconut oil at night. I have a hemp oil to help sleep which is like hash and works better than ambien and anything else the pharmaceuticals make. I never smoked pot and it was not inuitive for me to try it and I will never look back. I am getting my health back and have reversed the damage from the nasty pharma drugs. It's like nothing I have ever tried and because the tinctures aren't heated, you don't get stoned. Also, I take more sativa which helps you detach from pain AND it is an outrageous anti inflammatory!

 

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inspectorgadget1956, Community Member
2/28/09 6:36pm

Hi,

   in regard for the best medication for fibromyalgia, I know some medications that work well for some people don't phase the pain in others; I've always found it odd that for me, if need be, I can take enough pain medications to make some people in outer space and for me, its necessary to get the pain down and the meds won't cause any buzz or nausea for me. I have delt with fibromyalgia/chronic pain since the late 70's before being Dx with fibromyalgia in 1991. I've tried many non prescription medications, heat/cold packs, lidocaine patches ( lidoderm is the official name for them ), narcotics ( which unfortunately for me gives the most relief ), muscle relaxers ( soma works the best for me, but like with many other abused medications, this is one that is often sold on the street and my pain management doctor quit prescribing it in all but the most extreme cases and then its limited to 30 per month ). I have some combined pain issues, including fibromyalgia, osteoarthritis, bone spurs along the spine, and what a former doctor called chronic pain syndrome. I was told I had lupus by one doctor and the other says no, so thats in question. Anyway, for me, the NSAIDS ( ibuprofen, etc ) just didn't do anything and over the counter medications like tyelenol and regular strength advils were a waste of time. When all of these failed, the doctor started prescribing narcotics and a muscle relaxer ( soma and parafon forte work best for me ). He would change the pain medications every year or so as they would loose they're effectiveness somewhat as a tolerance built up to them; but, the pain medications we tried that helped the most, were Lortab 10/650, oxycodone ( either percocet or oxycotin--time released oxycodone ), Demerol, tyelenol 4, and methadone. Overall, the best combined relief I got was when I was on methadone, with percocet for breakthrough pain and soma for the muscle relaxer. I also bought one of the heavy gel back packs you heat up in the microwave and that works wonders, as does a heavy duty heating pad for lower back pain. I've never tried the pain patches ( fenatyl for example ), but I've heard they work wonders if you aren't allergic to the adhesive ( that often irriatates my skin when I use the lidocaine patches ). Stretching exercises, hot baths and the new shiatsu massagers I've found helpful, especially when I use the heavy heated gel pack over the shiatsu massager. One single medication or therapy is usually not enough to give enough relief for fibromyalgia and despite what my former pain management doctor told me about narcotics making it worse; for me, they worked miracles for pain relief; just don't use them unless everything else fails. Hope this helps; God bless, Mark Savage/inspectorgadget1956

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cherryblast, Community Member
3/ 8/09 1:44am

Well there isn't any medications, that are the best for all of us, who have fibromyalgia.   There are a lot to try, if your doctor is willing to prescribe them. I know for me, I have a high pain daily, I would say a 6-7 most days, and of course the really bad days are a 10. I also know that you can start off taking a certain med that really helps wtih controlling your pain, but as time goes by, they become less and less effective. That is how it went for me. That doesn't happen to everyone, but a lot of people I have talked to and research I have done, shows it is true.  What have you already tried taking?  Do you want to take opoids (narcotics)?  Do you want to take muscle relaxers?  Anti-anxiety meds, well you get the drill!   What is your pain on a daily basis?  These are just some of the questions I would ask myself when considering taking meds for fibro.  Most start off taking muscle relaxers, and there are some I don't recommend.  One is flexeril.  I think it is way too sedating, and you cannot take it if you have to have a life. That is just my opinion. Everyone I have ever talked to about that drug, says the same thing, it is so sedating.  So is Deseryl. (trazadone) Same problem, but I do know a lot of people who do take that.  They say it really helps them sleep well, which we all know we have to have, to even try to get our pain under control. As far as opoids, there is the very common ones; vicodin, norco, vicodin es, lortab, all of these are the same med, just different brand names, and they all come in different strengths. I started out on this, and it really did work for a long time, until my pain got so out of control and taking them 1-2 tabs daily every 4 hours was killing my stomach, I had to switch to something that  wasn't so hard on my tummy.  Anyway, there are the stronger ones like oxycontin, a long acting drug, I wouldn't suggest that as it is very addicting, I mean dependant. (or both)  There is duragesic patches, morphine tablets, liquid, different doses, of all, so with that, there are just too many drugs to say one is the best for fibro. We all have different pain, different pain tolerances, etc... I would take a look at yourself, make some charts of all your symptoms, and what is available to you as far as drugs, and what you are willing to take.  If you have to have pain meds, cuz say you have to work, or you have children, or have a low pain tolerance, do some research on your own and see what is out there.

My regimen is: 

Soma (muscle relaxor) used for bedtime, or as needed.

Methadone (narcotic)  This is the best pain med I have ever used. It is long acting, you can stay on a relatively small dose. I have not had to up my dose in over four years) I take 10 mg three times a day, and sometimes I only do 1-2. Just depends, but I am supposed to do three. 

Prilosec (stomach med) I had to go on this from taking the other pain meds, vicodin, norco, it tore my stomach up!

Prozac (anti-depressant) I think they put everyone on one of these if they have chronic pain.

I take asthma inhalers, and allergy meds, but I do know that when I switched to the Methadone, I was able to get rid of several other meds I had been on for sleep, pain, and anxiety. I feel lucky I am only on a few right now, and my pain is under the best control it has ever been. ( I have had fibro/chronic fatigue for over seven years, or at least diagnosed with it, and was turned down for disability)

I hope this helped a little, I know I did kinda go off the subject, but I thought it was important to explain why I said the meds I did. Thanks for the question, Abby.

Sherri

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kimberly moore, Community Member
3/10/09 3:06am

lyrica.

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constant worry, Community Member
5/ 1/09 3:23pm

I've tried many pain relievers narcotics none seem to work,is there any drugs for pain that will work for fibromyalgia

 

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Isabel, Community Member
5/28/10 8:02am

I've had it for 12 years now.... I HATE IT!!!!... But I would have to say that, no pain med alone works.  I have to take an anti depressent with it, and a muscle relaxer at night for my FM... And I also noticed that when I cut out sugar, I felt really good...  HMJESUS

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just needing a little help, Community Member
11/ 9/09 12:26am

i am under that as well and i have been going to the doctor and they told me they cant help me and give me any of the medication that you all are talking about. what can i do to help myself in trying to get the medication for my fibro...

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phoobear2471, Community Member
11/15/09 8:24pm

the only thing that will give me ant relief from this terrible pain is 4 ultram 50 mgs 4 times a day and 1/2 of.g percodan. this will finally kick in and last about 4 hours and sometimes longer. there are times i wish i could just end it all .  does anyone else feel that way. and what medications are myou on. i have a wonderful family and have no reason too feel this way but i do. i have had anti depressants. but they have not helped me,  istay in a fog most the time and have a hard time remembering. it is getting too the place now it is hard for me too walk. i just want too give up

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cmlee76, Community Member
11/22/09 12:44am

I think anyone in constant pain and has to take pain meds more than once a day can go a little crazy with frustration and want to end it.  Just because you think about it, doesn't mean that you'll do it.  It's ok to be frustrated.  Give yourself a few minutes when you are feeling so low that you can't go on, and validate yourself.  "Yes!  I am in pain all the time.  Yes!  It is so frustrating I can't stand it.  Yes!  Why doesn't it just go away or someone find the cure.  Yes!  It's not fair.  Yes!  I have every right to feel the way I feel right now."  Then let yourself feel really bad about it.  Let yourself roll around in how bad it is.  Give yourself as long as you need (sometimes I need 30 seconds, other times I need 30 minutes).  Then when you are tired of feeling so negative, let-it-go.  Take a deep breath, as you slowly let it out, think of three things in your life that you are "glad" about (to borrow a word from Pollyanna...glad is so much better than happy...I mean...you know how hard it is to be happy?), look around, and do something that you'd like to do (lay down, relax with a book, take a few breaths or some stretches if you have other things to do immediately). 

 

Whatever you do, don't give up on yourself.  You need to speak with your doctor about getting on another anti-depressant.  Yours is NOT working.  And I know...I suffered from severe clinical depression for 10 years (wanting to end my life, there was no meaning to it, I couldn't wait to die, and even attepted a few times).  But these hard times always pass, and I look back and realize that I really wasn't in my right mind when I wanted to end it all.  I'm so glad I found the right meds to pull me out of the deep well of depression.  It took me going to my doctor and instisting on finding the right one and not stopping until I did.  When I finally realized I needed medical help, it took about 3 months and 4 anti-depressants before I found one that worked.  And BOY!  Was life different.  Why did I wait so long?!?!?!  All the wasted years!!!!  Anyway, I had to go through them so I could understand what it's like and help others get through it.

 

Effexor XR worked great for my depression, but was REALLY hard to get off of.

I'm now on Prozac, which helps a little, but nothing like the Effexor.

I'm also on Oxycodon for the pain (5mgs 4-6 times a day), but this has gone down since starting Lyrica.  I take 50mg of Lyrica 2x a day, and now my oxycodone is down to 3 times a day).  I have another appointment with my pain doctor this week and see if she can up my Lyrica.  Maybe I won't have to take oxycodone anymore (works the best and fastest on pain, but having to take it every 3-4 hours made me want to hit my head against the wall).  I'm also taking fish oil (salmon oil, 2-4 pills a day), 10-undecenoic acid (derived from castor bean oil, but also has talapia in it, 50 mgs, 4 tablets, one time a day), and a One-A-Day woman's vitamin.  Make sure you're getting 400-800 mcg of folic acid too.  It prevented my cervical cells from becoming cancerous twice! and it worked for a friend of mine too.  REALLY important that folic acid stuff Smile

 

 

I'm also reducing my sugar intake (I have yeast infection-like symptoms, but no yeast infection...when I stopped sugar [SO HARDCry] for a week (eating things that only had 1 gram of sugar in them), these symptoms went away and so did some of my morning pain).  My belief is that I have yeast in my body (which we all do) but it is more sensitive in me and sugar makes yeast grow like crazy.  Excessive yeast can also cause a lot of body aches and pain.  And the fake sugar counts too.  The yeast still treats it like sugar and the rest of your body doesn't know what to do with it, so it stores it like chemicals in your muscles, adding a ton of toxins to an already toxic environment.

 

Anyway, I've blabbed on enough.  You NEED to find a depression med that works (don't stop until you find one) and also find a pain management support group.  They really understand about chronic pain and how it totally puts you out of your right mind.  Your family loves you and would be devistated if you were gone.  Don't let your pain get so bad that you choose ending the pain over staying with your family.

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Helen, Community Member
1/25/10 7:33pm

yea, it's a real bummer, this feeling so bad and having to take meds, however, I am quickly reminded that I am so very thankful that I have my arms and legs and my mind and a home to live in and friends to talk to...I find myself writing (keeping a journal) daily of how I feel emotionally and physically and then from the letter A to Z I write down what I have to be thankful for.  I hope this gets you through today, or even the next hour, because really, we even have to be thankful for this, because we will never have this moment ever again.  Lets learn togeather to appreciate every moment we do have and explore with curiousity what we can and will learn from it.  Helen

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8_is_enough, Community Member
1/30/10 1:20am

Hello I have been living with fibro for 10 years now I have neuropathy. Lately my pain has been an 8! I have tried all the "Fibro meds" with no luck, I get the rare side effects, anyways there has to be something somewhere to help us. I have 8 kiddos, 6 at home still and it is hard being a happy fun Mom when I hurt so bad. I need to lose weight but to excersize is pure agony. I'm on Neurontin (gabapentin) 600mg at bedtime, because taking it all day long like my doctors what me too knocks me out. Anything besides pain meds work?

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desperado, Community Member
3/15/10 1:38am

I can't even find a Dr here to even believe me when I tell them how badly and how often I hurt.  I told one Dr it hurts to even get out of bed in the morning on most days and he said maybe I should look into getting a new mattress.   Then I went to a rhuematologist for the first time and he walked in the room, stood there looking at my paperwork and then said I'm not the Dr for you.   I asked what I should do, or where I should go, and he asked if I've seen a therapist.   Same story with every Dr I've seen.  Getting them to listen and maybe even believe me I think is just making everything worse.   My muscles now spasm and jump all the time, mostly in my legs.  That's not painful but it's annoying.  Then my fingers started getting stiffer and now I can't fully extend them or flatten my hand.  Now in the last 3 weeks I've had severe vertigo to the point of nausea and vomiting.  Went to the ER for that, dehydration mostly, and they gave me two ativan and told me to go to walgreens and get some antivert.  It's OTC here.  A few days ago I saw my GP for a follow up from the ER visit and told her the antivert isn't working, I'm still dizzy, lightheaded, nauseated, vomiting, feel like my heart is pounding and the whole side of my head throbs every single day.  She said it sounds like typical anxiety and antivert will help with some of those symptoms but I have to take it on a regular basis, not just when I feel dizzy.   She completely disregarded anything else I said.  It's always the same..."it's all in your head" attitude.

Anyway, I know I'm just complaining here when this thread isn't about whining.  But, can anyone here PLEASE tell me what I can do for this aching and pain etc while I'm searching for a Dr to believe me?   Right now I'm eating ibuprofen like candy, some days hitting 2000mg total (not all in one dose).   I'm going to see an acupuncurist this week and praying she believes me and can do something to help.  

I should say I'm not even actually diagnosed with Fibro because so far every Dr I've seen totally dismisses even the mention of it.  Four out of the 5 Dr's I've seen said it's just a blanket term for "we can't figure out why this lady is complaining...her tests come back fine and she looks healthy"  and I swear the undertone is always "we got ourselves a hypochondriac here"

I'm already on anti-depressents (prestiq...same thing as effexor) and I also take lamictal.   

I just really need someone to believe me and try to help.

Do any of you have any suggestions for over the counter relief?

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gailze, Community Member
4/14/10 3:08pm

Hi. I am so sad that you've had such bad experiences with Doctors. I recently lost health insurance so I will be needing to find OTC help too. One thing yhat helps for me is a massage technique called "myofascial realease". It is very gentle and seems to give me a few days of less severe pain. Also soaking in a hot tub and moving my body around in there sort of stretching.

I am hugely discouraged lately and feeling so hopeless now without insurance. I need to change some meds because they have stopped working, but with no Doc and no money...well, you know.

I wonder how your acupuncture went?

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Jeana, Community Member
4/15/10 11:46am

I have Had FM/CRS now for 7 years.. Dr after Dr.. I have finally found going to a neuro and a pain clinic has helped me the most.. Meds that I am now on are...Lortab....Lexapro....Zonisamide and Zolpidem.. I have been also getting Epi's done for my chronic headaches.. last one I had was in Dec

I have tried all the others and they help for a awhile....   Good Luck!!

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Susan, Community Member
5/22/10 3:05am

A rhuematologist can diagnose Fibro.  You also should find an alternative medicine Dr. that looks at your body as a whole.  If they don't look at the small stuff, like magnesium levels, B12, sensitive T3 & T4 for thyroid, muscle enzymes, Vitamin D levels, Zinc, Adrenal's etc...  Then they are missing small pieces of the big picture.   Holistic doctors sometimes go under "Wellness Centers".  

 

I thought I was losing my mind with nerve pain, headaches, chest pain, leg pain, pulse is high (I'm wearing a 30 day event monitor now to look for reason's why)? Stinging in thighs, and face.  Heat & cold intollerant.  Anxiety.  I went to the Mayo Clinic in AZ from AK.  Spent 7 weeks there trying to figure me out.  Waste of time & a lot of money.  Find someone local who can HEAR what you are saying, and you are not just another number.

 

I am on the mend.  But, will take months to get me back to normal...

 

Look online to find Integrated Medicine, with a M.D., not anything less than that.  I have a very poor diet, drank diet soda by the gallon, and have Hypothyroidism for many years.  But, discovered Fibromyalgia, low levels of what I listed above, and realize you cannot ignore what your body is telling you any longer.  

 

Susan

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Benny J Robinson, Community Member
8/ 5/10 10:37pm

Susan, I was diagnosed with Fib and I am not into medications and believe in Holistic medicine i,e, what you named is on the right track.

I have been to doctors by the hundreds and always received the same answer, "Your blood work looks good and I can't find anything wrong with you?.  I would be willing to venture that 90% of my current health problems have been caused by doctors inefficientcy, for lack of a better term.

I got on the computer and started digging and I think I have found something that might be of help to you.  Look up Candida Albicans and go from there.

I nearly fell out when I read the symptoms that are caused by this illness.. I started taking Magnesium, Vitamin D, Potassium and drinking Pedialite that has Zinc in it and I feel much better but you'll have to watch your diet very closely. 

I feel good nearly all day but around 4:30pm I start getting down again and I just take the above and feel better in about an hour.

MD's miss Candida Albicans and most have never heard of it. Rather than me attempting to explain it to you, look it up and the article will tell you more than I could ever tell you.

They recommend Acidophilus, Flora-Balance and Bioton.  These things all work in harmony.

Anyway, good luck to all of us who have this crap!

Benny

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Isabel, Community Member
5/28/10 9:18am

Sorry you have, had to deal with people like that,, especially Doctors... I hate when people treat me that way.. You can try a (Pain Specialist). Mine was ok for a while, until I started needed stronger meds. Cause we have to change them around you know, our body's build up a Tolerance after a while.. Well, then he began making me feel, as if I was a drug addic... :( But, I would still start there, if I was you. You might have better luck then I did; I've had good doctor's, and bad one's; What you should do is, ask from the very beginning if he, or she believes in FM, from the get go; If not, DON'T WAIST YOUR TIME, OR MONEY!!; Remember: You're paying them.. they're working for YOU!!!..

Right now I am currently receiving all my meds from my (Psychiatrist)... They are MD's after all, you know.. He has been Awesome!!..


Good Luck, and God Bless 

Your Friend in Pain

*****Isabel*****


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Cat, Community Member
6/21/10 9:45am

I was diagnosed a year or so ago, but lived with the Fibro pain for a few years before. I take Lyrica, Soma's (off the internet), Zoloft...some days are ok and most bad! I was recently given 7.5 Hydrocodone and took it about and hour or so after my regular meds which are as follows, (1 75mg Lyrica, 2 1/2 Soma and 1 Zoloft, in the morning, then 2 more Soma's about 6 hours later, I know it sounds bad, but I need some relief!). I felt like a NEW person with the added Hydrcodone, but cannot get my doc to give me any! I finally feel free with my body and life and feel treated like a druggie! I am about to lose my Health insurance and do not know what to do now! I am scared and worried, which doesn't help. I am a lil overweight, but not much. I do not eat alot of bad things anymore. What in the world am I gonna do now? I know I cant still get the Soma's and the Lyrica from Connection To Care program. I feel betrayed by my body and the doctors here don't care. I stay on heating pads in a cold house, so as not to overheat, crunched up on the couch or in the bed. Any solutions???

 

Cat, age 37

 

oatmeal0114@yahoo.com

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Katy, Community Member
10/25/10 8:37pm

Those doctors you saw are useless and bad doctors. Everyone knows this problem exists. Because they do not know what causes it and what it is all about they brush you off because they have no answer for you. They do not have a magical pill, it doesn't exist.

I have it too, I know. The medicine they gave me almost killed me. How can they have a pill for something if they don'y know what it is....

The best thing you can do is see a nutrionist to see if you have any food allergies like wheat or whatever. Eliminate all processed foods and soda and drink lots of water. Swimming is the best exercise, it doesn't hurt in the pool at all...

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Hopeful Michele, Community Member
12/ 7/10 10:08am

Hi Desperado

 

I have been suffering for 16 years and I know how you are feeling. 

 

Believe me, I hear you and I think we all know how you are feeling.  Don't give up, keep going to a doctor until one does listen.  Don't ask them - tell them you want to try something that you have heard is good.

 

I started giving up and my husband urged me to keep looking until I found a woman doctor first to hear me and she referred me to a Rheumatologist who is a Pain Specialist.   That is what you need.  I had NO help until I went to a Pain Specialist.  You need to find a Pain Management Clinic.

 

I am on Cymbalta (after trying many medications) and this helps with treating the FM pain long term because it treats the neurotransmitters which are firing too often.  It also treats the anxiety that comes with this condition so helps to make you a little happier and less tense which means you are not tensing your muscles so much.  I take 60 mgs a day (one dose in the morning).  The side effects I experience are constipation and I get a few muscle jerks when I am going off to sleep but they go eventually.

 

You have to take the Cymbalta in the morning so it doesn't effect your sleep.  I then take a Serapax at night only to help with sleep.  It's not a sleeping tablet but I think a type of anti-depressent which relaxes me.

 

For pain I take a tablet called Capadex or Panadeine.  The Capadex does not constipate me as much as the Panadeine because it doesn't have condeine in it but sometimes I think codeine works better.

 

You cannot take Tramadol (Tramal) with Cymbalta because the two cannot be mixed, which is unfortunate, because it actually worked really well on the pain.  However, when I did try it before I was on Cymbalta, I found it made me itchy, so my doctor said not to take it anymore.

 

I have also had two treatments of a therapy called Ketamine Infusion Therapy.  It is a drug that is given in hospital for 7 days intravenously, and sort of "re-sets" the nervous system.

 

I am still making up my mind if it is definitely working or if the Cymbalta is the one that is working, but I think it has definitely had some impact on my pain elimination.  We'll have to see.

 

Look it up on the net.

 

Hope that helps - just keep fighting.

 

 

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kimmyc, Community Member
5/29/10 2:57am

What have you tried and what dietary changes have you made?

I have had it for three years and do best with norco and sativa edibles or methadone with edibles. I also take 1600 mg of Jarrow brand SAM-E and eat a gluten free diet which is CRUCIAL. I also consume raw milk from grass fed cows. NO sugar! NO wine!

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mrsrich420, Community Member
6/27/10 8:04pm

I was diagnosed with fibro Jan 2010, but have suffered from chronic pain ever since I had my second son 3 years ago.  My doctor began me on Savella.  I have been taking it for 6 months with no relief.  It makes me more fatigued than I was before taking the medication.  He switched me to Prestiq and I will begin taking that in a few days when my Savella pills are done.  I am also taking amitriptyline for migraines and vicoden occasionally for major pain (maybe once every few weeks).  I don't like taking too many drugs due to the long term side effects so I try not to take the vicoden if possible.  The amitriptyline is crucial for me.  I have suffered from chronic headaches and migraines for the last year.  One day I woke up with a headache and it never really went away.  When I began taking the amitriptyline a few months ago, I started to feel less foggy and was able to concentrate better at school (I am a math teacher).

 

I believe diet changes are crucial with fibromyalgia.  I cut out sodas, caffeine, fast food, fried foods, processed foods, high fructose corn syrup and refined sugar.  I also increased my magnesium intake through green leafy veggies and some fish.  I also take a magnesium supplement called Natural Calm, which seems to be helping.  I also supplement with Vitamin D.  I eat only organic and all natural foods.  It can be pricey, but is well worth it.  I love to bake, so I still eat baked goods but only use natural and organic ingredients.  I have yet to try to cut out gluten.  Some people say it works wonders, I just don't know if I have the will power.  I love to bake too much :-)

 

I have also began going to a physical therapist to help decrease my pain.  After a few sessions, I am already beginning to feel a little better.  She is able to give me tips on how to better my posture, flexibility, and how to reduce my pain.  I have not begun an exercise routine yet, but plan to once I have finished my physical therapy. 

 

And in case you are wondering, I am 33 years old, 5'10" and weight 125 lbs (15 lbs less than the average minimum weight of someone my height).  My case of fibromyalgia is not due to being overweight or having a unhealthy lifestyle.  I played volleyball and ran track in college.  I have always been active and exercised regularly.  After I had my son 3 years ago, my pain and fatigue were so intense, I was not able to pick back up on my exercise regimen. 

 

It is an ongoing battle as you know, and I hope you are able to find what works for you.

 

 

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Donna Ohhhhhh, Community Member
11/ 9/10 2:59pm

I've had FMS & R/A for about 16 years but was diagnosed 10 years ago. My Rheumatologist gave me Arava 20mg and the burning pain in my muscles went away & hasn't come back...that was 10 years ago. I've been through many, many pain meds; right now I'm taking Norco but it's starting to not be as effective as it once was and my stomach is suffering from the ibuprophen in it. The Fentanyl patch works well but I was allergic to the adhesive, Methadone was fine but I lost my teeth after 2 years. I guess it all depends on what you can stand. As for the other meds for FMS, Lyrica, Humira, etc....NOTHING worked for me. Only the Arava. I wish you luck as this is an awful condition to deal with and the depression, etc that comes with the 'syndrome' makes for an ugly disease. People think that just because you don't look ill, you must not BE ill. If they could only spend a day in our shoes...

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sue H, Community Member
11/30/10 5:33pm

hi, I am also a suffer of fybro for 10 years, I am agast at the amount of drugs that people are trying, its so difficult to control the pain and I feel for each and every one of you.

My story is that being fed up after 10 years I read an article about Topamax and fybromyalgia and have now been on it 5 weeks. I feel a completly different person, its a epilepsy drug and there seems to be some link between the two. I take no pain killers and no  longer walk with a stick can run upstairs and have lost a stone in weight.

I have no medical background but take an interest in the research.

 

Its worked for me but mayb not work for everyone, this I understand but, please someone do some more research on this and let people know!

 

good luck to you all

 

suexx

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Donna Ohhhhhh, Community Member
11/30/10 6:18pm

Hi Sue..I also take Topamax as well, although it is prescribed for migraines..they came on about the same time the fibro did as I never suffered from headaches before. Go figure! I have not tried taking just topamax for fibro pain though, I would be afraid it would not work alone.

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Anna, Community Member
9/ 9/11 8:35pm

Altoids and ibuprofren, along with sunglasses, low lights and stress-free atmosphere, hugs and sleep often help.

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ValarieL, Community Member
11/12/11 11:32pm

I have been reading over these posts and have learned a lot. There is an underutilized med in the tricyclic class of anti depressants. It has an unlabled use for help with pain. It is called Doxepin (generic name) Sinequan (label). It has been the only med to help me. There is the down side, though. It has anticholinergic side effects. They are on the constipating side. Urinary hesitency is a major problem if the med is taken in higher doses. This med is still worth trying. Just take the smallest dose that works. This can be 25mg to 125mg. It is a very inexpensive med and is generic. Hope this helps. Come back and let me know if your Dr. will prescibe it and how it works for you

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Sheri, Community Member
2/ 7/12 1:11pm
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I'm a 51 year old woman suffering with chronic fatigue, fibromyalgia pain since 2005 and most recently osteoarthritis pain.  Each day I suffer with a heavy stiff ache in my neck, shoulders, knees and legs. I suffer with anxiety, and the anger and frustration of having to deal with this.  Most days I feel as though I'm dragging a heavy ball and chain around with me.  I remember the days when I use to run and dance; I was a ballet dancer most of childhood and teenage years.  Now I wish I could feel good enough just to go for a short walk.  I feel a burden to my husband and wish I could feel better.  I have tried all the meds prescribed by rheumatologists. Many people aren’t aware of the severe side effects of the meds (that don’t work anyway) that our doctors are prescribing for us.  If you investigate the pharmacology of your fibromyalgia prescription on the web, you may be surprised (or horrified) of the carcinogenic side effects of your medication and what it can do to you.  However, there is hope.  Marijuana does help.  People who are sick just want to feel better.  Marijuana works to reduce fibromyalgia pain, increases energy or makes you feel better so you can do more, reduces anxiety, alleviates nausea and simply makes you feel better.  I don't understand the taboo of marijuana.  It was given a bad rap in the 70's. It doesn't make you sloppy and out of control as alcohol can.  I wouldn’t recommend driving or operating machinery etc. or doing things you shouldn’t do, just as if using any prescribed medication that includes those warnings.  However, the effects of marijuana are much different than alcohol.  I believe some states allow medical marijuana for MS, HIV, and cancer pain.  Marijuana is a God given plant put upon this earth.  It has benefits for many illnesses that would make thousands of peoples' quality of life so much better!  And it’s not physically addictive as many pain narcotics are – and doctors prescribe those.  I just don’t get it.  I want to be able to use medical marijuana for my illness - I don't want to be afraid of getting in trouble and going to jail.  I want a better a quality of life for myself and others who suffer.  SO . . . I want to spread the word to those with deep muscle and joint pain, extreme fatigue and the hopelessness that comes with years of suffering – marijuana does work – but unfortunately it’s not available.  God Bless.

Reply
Sharon, Community Member
2/16/12 12:49am
OxyContin and Percocet also lorazepam and gabupentin Reply
Kalio, Community Member
2/19/12 7:17am

To the person who said opiate don't work on Fibromyalgia pain -> you are wrong. I have FM and have had it for ~15 years. Mirapex worked well for me for the first 10 years then was extremely hard to get off of. I have tried everything, at least 30 meds, to deal with the FM pain and nothing has worked, due to allergy or awful side effects. Opiates do work though and have almost no side effects. I take them consistantly, same dose, same time, everyday, and have not had to increase dosage for 5 years. Also L-Tryptophan helps for sleep and magnesium+ Calcium will get rid of those random sever cramps.

 

Everything else I have tried has been either super addictive (way worse than opiates), produced extreme alergic reactions, or had side effects that were debilitating and awful.

 

-K

Reply
bjtn, Community Member
4/14/12 3:14am

I have had fibromyalgia for about 15 years. I have tried every so called fibromyalgia treatment and medication without significant help. I have been on the fentanyl patch for 7 years and it saved my life. I would have killed myself by now due to the pain if I hadn't been prescribed narcotics. I am so sick of reading and hearing about how narcotics are ineffective for fibromyalgia type pain (central pain) and have even read this from so called reputable doctors who treat these patients. They have appretnly never tried these meds for their patients or they wouldn't be so ill informed.

 

I have been on the same dose for all these years and although I had to quit my nursing job recently the pain is otherwise controlled. The activity of caring for patients is just too much for people with severe pain issues. I am hoping to go back after I focus on alternative treatments to help stabilize my condition.

 

Anyway, Everytime I see comments about narcotics not being effective for fibromyalgia I just get so angry that I have to respond.  Good Luck!

Reply
bean, Community Member
2/ 5/13 6:03pm

hi bjtn

            my wife has had fibromyalgia it took my wife five years of going to doctors and "specialists"  to finally get a diagnosis then another two of messing around with all types of meds finally i got doctor to prescribe her fentanyl patch and i'm telling you it saved her life ! she was litterlly bedriden and after having the patch she is almost normal and able to function. fentanyl has truely been our life saver. i'm sorry you also have fibromyalgia i to get angry at these people that say narcotics are not effective my wife and you are living proof that it does work 

bee.bean

 

Reply
Sue, Community Member
4/14/12 12:20pm

I think it would be a lot better if people quit critizing those who have opinions.  This is a help group not an accusing one.  The question was which drug helps you....  not whether someone says you need to stay away from addictive drugs.  Each of us is very different.  

 

I tried neurontin and lyrica.  Both did not work.  I won't try Savella because I am sick of the side effects.  I am taking lortab which doesn't touch the pain but helps me relax.  The biggest problem is trying to rest.  I took some clonopin (sp?) last night and got some rest.  

 

Thanks

Reply
Eilene Ratiff, Community Member
6/ 6/12 12:54pm

I have tried several pain medication and nothing seems to work... I am be one the point of just going crazy with this pain.... I also suffer from CFS, Depression, Panic and Anxiety Attacks, DDD, Osterarthritis, I have have about 15  different surgeries, Just had my 3rd back surgery, where they fused F5-S1, put pins, screws and rods in....I have been in so much pain from all of this that i have been just about to go crazy......PLEASE HELP ME

Thanks

Eilene

Reply
jfor, Community Member
2/17/13 6:02pm

H

Reply
jfor, Community Member
2/17/13 6:08pm

I see that a lot of you want your narcotics. My suggestion is to try to fake back pain instead of sticking with a fake condition like "fibro". "Brain fog"? Lol. Or if you do have body aches try an antidepressant. Body aches are central to depression.... probably why elavil works for lots of you "diagnosed" with "fibro". But quit saying you "need" narcotics and leave them to the people who really need them. Jmo. 

Reply
Nicole, Community Member
11/30/13 5:55pm
ok, to all the people above arguing about gluten. It doesn't matter whether humans were or were not intended to eat it. bottom line- GLUTEN IS AN INFLAMMATORY PROTEIN. regardless if you 'think' or assume it won't work for you, sorry but you are wrong. I mean c'mon guys, if you have an inflammatory disease like FM or arthritis...you shouldn't intentionally put more inflammation into your body. there is no argument to be made here. this is science, hard facts that the best doctors have proved true. Eliminating gluten might not make you feel better...but your body will be much happier whether you can tell or not. Reply
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By abby, Community Member— Last Modified: 04/19/14, First Published: 02/24/09