undermanaged pain

By manicbeatz Tuesday, July 31, 2007

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I am a 49 year old female who has been diagnosed with fibromyalgia for 7 years. I am also bipolar and have osteoarthritis in my lower back and in my neck.

My pain is nonrelenting. It never goes under a 6 on the scale but rather stays within the 7- 10 range.

I have touble sleeping, severe constipation, and migraines.

My "doctor -go round'' has left me with frustration and situational depression. I have been tried on just about every med there is to try without success. I have been on Lyrica for the past 18 months. while it does help with some of the pain where you feel like your nerves are exposed to the elements, it does does not help with all that pain and and does nothing for the other pain we all experience.

My doctors have prescribed Lortab at times but refuse to prescribe it on a regular basis although it provides the most relief.

At present I am taking Darvocet which is NOT effective.

I am at my wits end. I have almost lost hope that any doctor will take my pain to be moderate to SEVERE.

Anyone out there with the same experience that finally got a good measure of relief with a certain med please repond. Thank you for being here providing support and possible coures of action.

re: MS diagnosis

Comments (13) | Add comment

tabt

7/31/07 9:34pm

the only thing that will help you is opiod pain medication such as lortab or norco (generic is(hydrocodone) or oxycodone or oxycontin. you need to find a new doctor who is willing to prescribe these medication on a regular basis. this will not be easy because the dea is waging a war against pain patients and the doctors who treat them. see the web site pain relief network for more information. i suggest that you try a rheumatologist. research shows that pain patients react differently to opiates than recreational drug addicts do. tolerance is not the same as addiction. i also suggest that you stay away from pain clinics as they

generally are unhelpful and even abusive. you may, however, get lucky and find a good one. keep trying until you find some doctor who will help you. you do not deserve to suffer as much as you do when there are plenty of medications that can help you. good luck and best wishes.

manicbeatz

8/ 2/07 4:16pm

Thank you for responding to my post. Your info was very reassurring. I just need to find THAT doctor.

Susan

Kara29yrs

3/26/10 11:18pm

i was going to a well known "pain clinic" in nh and my doc made me feel as though he and i were friends and that i could tell him anything about my pain and depression.

in the end he exaggerated my depression and even Flat out lied in my medical files. i have had it up to here w/docs who abuse their power and who maltreat suffering people. i plan to take this doc to civil court! he used slander, deformation of character and did i mention flat out lies to stop the meds which have allowed me to clean my house, work, hike, take care of my age'n mother and well to just live my life.

since he dropped me in a lake, i have lost my job, my hope, my stability, my faith is fade'n and now it is all i can do to lay of the sofa for 15 to 20 mins then get up and pace, then the sofa and so on. i can't take care of myself at all and i just want my life back.

i know there are problems and the system needs to be fixed but not in the way they are going about things. i just want to live. i want to live. i do not know how a "dr" could be so cruel and heartless. he got me on a moderate dose of meds and now cuz of the pressure it was easier for him to just get rid of me.

i could go on forever. lets go to capitol hill and MARCH!! let them know this can't go on!!

paindrain

8/ 1/07 12:01am

When I read your post, I could really relate to you. I have had such bad neck, back and head pain, that I either wanted to scream like a maniac or retreat into a dark, silent room where no one could touch me. Yes, in addition to not being able to be exposed to light, smells and noise, my sense of touch becomes ultra sensitive. A simple, light touch on the shoulder becomes like a man's bear slap to another man whle watching sports. In other words, the pain gets to me in all my senses, rendering me incapable of even the most minor of acitvities. It has brought me to my knees and, even worse, has put me back into the fetal position, while I have cowered and prayed for everything to remain perfectly still, with no sudden movements, light, sound or offensive smells.

Does anything work for this type of pain? I have definitely been helped by the stronger narcotics, such as oxycodone and percocet. When I broke my leg, percocet was the only thing that even came close to helping me. Vicodin did little or nothing for me. For my head pain, Imitrex is my drug of choice. I can have a full blown migraine and take one Imitrex shot and, wah lah, in 15 minutes the pain is gone. It is a true miracle.

Still, there are times when nothing touches the pain. My only escape during these periods, is to go to the emergency room and hope the doctors will give me something that will knock me out for about 36 hours. Oh - the joy of being comatose for several hours - sleeping and feeling no pain! It is heaven for those of us who have had chronic, debilitating pain. I don't know about you, but when I have a lot of pain, I can't sleep. Once, I went to a doctor for pain, and he gave me a prescription for two (yes, two!) sleeping pills! Unfortunately, the pain was so severe that the sleeping pills did nothing to help me sleep. I think the only way you can sleep when your pain is this bad, is to be knocked out by some powerful morphine-like shot. That seems to break up the pattern of severe pain - if only for a short while - and allows me to sleep, or rather, fall into a semi-comatose state.

I wish I knew what that shot was that they gave me one time in the ER, when I thought I would go crazy from the pain? Was it fentanyl or straight morphine or what? Do any of you have any ideas about what kind of shot it might have been? Whatever it was, it would certainly help YOU out with your pain, although you might be passed out for several hours. This isn't so great if you have a job, unless it is the beginning of your weekend - and what a way to spend your weekend!

Yes, this pain we feel is all-consuming. It takes over our lives and renders us slaves to its effects. Still, I believe we can rise above it. Keeping our thoughts positive and surrounding ourselves with positive people can go a long way toward diverting our attention from the pain. The busier I am (even though it hurts), the less likely I am to THINK about the pain. When you FEEL the pain and you THINK about the pain, you get a double whammy. By focusing on my son and what he is doing or by watching a funny movie, I have been able to get away from the obsessive nature of thinking about the pain. Thinking about pain all the time is about like thinking about constant financial problems. They are always there and, unless you find some way to distract yourself from them, they consume you - leaving you with nothing but negative thoughts and even worse pain.

But, back to the topic at hand - there are many medications that can help with pain. I believe the best kind are those that you take on a consistent basis that help keep pain at bay, rather than the ones you take only when the pain becomes severe. I like the idea of what they did when I was in the hospital after having a C-section for my son's birth. They gave me pain meds on a set schedule, whether or not I needed or asked for them. My pain was much less this way, and I wasn't always in fear that the pain pills would lose their efficacy and I'd be back to square one with my pain. I believe the meds they gave me at this time, were percocet combined with another strong narcotic. Whatever it was, it really helped me, because I was up and going to the bathroom by myself only 6 hours after having my C-section.

I hope that some of this info is helpful to you. There are some new medications out for pain, from what I hear, but I apologize because I can't remember any of their names right now. Be sure to check with your doc or your neuro the next time you go. Ask him or her what the most current pain meds are. Give them a try! And if all else fails, there are always the good old reliable narcotics. Yes, they do have potential for addiction, but darn, do they ever work well for your pain. The stronger the narcs, the less the pain. And, of course, you need to be able to tolerate them so you don't end up puking all over the bathroom. Or even worse, make sure you don't have an allergy to codeine.

I hope you find some relief for your pain in the very near future - or even better still - how about right now? Don't wait until it gets so bad that it brings you to your knees. Find someone who really believes you and is compassionate and willing to work with you and prescribe medications that actually WORK. One of the pain meds that I have found to be worthless is Toradol. They prescribe that for alcoholics and drug addicts. My experience with it was not good. I got it at the ER and I left the ER in no better shape than when I went in. Also ineffective were Ultram and Ultracet, as well as Darvon and Darvocet. And then again, there is stull like Tylenol and NSAIDS. Tylenol is the most worthless pill I have ever taken and NSAIDS make my stomach hurt. Add on to that, that both of these meds can cause serious harm to your liver and/or your kidneys and you have a loaded, smoking gun. Must we always pay a price for the meds we take?

Well, I have gone on and on, but your story really got me to thinking about all of this. I will keep you in my thoughts and prayers (the spiritual kind, not the religious kind), and hope that you find some relief in the very near future. Write again when you feel up to it. It is always good to share with someone who knows what you are going through. And even though I can't say I ENJOY reading your (and others') posts, I do find comfort and company in them. It is so nice to know I am not alone. No one but someone who has gone through this kind of pain can entirey understand how we feel. So, keep on keeping on; I hope to hear from you soon - whenever you feel like writing again.

May your next few days be pain and worry free!

Kay

annebeckett

8/ 6/07 5:44pm

attempting to prescribe ANY medications for you!!!

Now, Kay (PainDrain): this is directed at you. You do not know this person, at all; even if you did, you have NO IDEA as to what she is going through, her specific symptoms or the causes thereof. PLEASE, again, stop yourself from saying what works and what does not work. You do not know what would work for me, her, or anyone else who has posted here and your blanket "prescription" that everyone needs to be on extremely heavy narcotic medications is wrong. Also, you do not know what doctors she has seen or who, medically, is available in her area. Please, again, hold your "tongue". This; your constant diagnosing and preaching about what does and does not work, is not what this board is all about!

Now, IF you have any other, non-invasive, non-medical and home-remedies, you might want to post that. If there was something in your past medical history that correllates or compares to anyone else's post, make that comment. TRY and be HELPFUL.

Thusfar, the comments you have posted have sounded a bit inane. Telling everyone that they need narcotics and, the stronger, the better is absolutely WRONG! Telling everyone that pain doctors and pain clinics are worthless is, again, flat-out wrong! If you've just GOT to say something, please try and make it positive, ok?

Personally, I have "heard" more than too much of your opinions that everyone needs to be overly-medicated. Some of us prefer to not be zombies as prefer to LIVE life, and, if that includes having to FEEL some pain, we have to learn to accept it (at least some of the time). AGAIN, ENOUGH IS MORE THAN TOO MUCH when it comes to your comments!

Now: Manicbeatz; I really would suggest you find a pain clinic, good neurologist, or internest who does "get it". Personally, for me, my pain-doc has been a life saver. I do wish you well.

Anne

manicbeatz

8/30/07 11:22am

Thank you for your response. I have been to a pain management doctor. That is who started me on Lyrica. He also gave me a series of 3 cervial spinal infusions of cortisone. That lasted 3 weeks past the last injection and the bill lasted MUCH longer.

I have a rheumatologist who refers me back to the pain management doctor that I saw only for the spinal infusions.

My primary care doctor is very up on fibro and quite frankly I have stopped seeing anyone but him and my psychiatrist.

This cuts down on doctors shuffling me around in a catch 22 situation.

I think you are right about the internist. if I can find one who is willing to treat the whole me so that my pain is managed where I can function but still have some pain relief.

annebeckett

8/30/07 11:50am

Hey, I was wondering about you! Glad you saw the pain doc but, remember, they are not all the same and, pretty-much, any physician can hang a shingle and profess to be expert at this speciality. My pain-doc is an anesthesiologist, by training, and he is excellent. I do feel every lucky to have been sent to him; all those years ago, And, generally, I only see him and my neuro. Ofd course, the other day, I was sent, immediately, to an internist. And, for once, I really liked her! I'm waiting to have yet another scan of my head to see if there's an infection since my surgery or if I'm having an inflamatory response to the acrylis in my head... who knows?

Give the lyrica a shot; I felt some help from it but, after about 10-12 days, I started having severe chest pain.. read the paperwork and realised that those with heart disease should NOT take it. ( BUT, a LOT of people here will tell you it helps a lot!) SO, I called the doc and let him know that it was not for me. Somehow, he never got the message..'til the other day. Now, he's got me on Trileptal and it has put me to sleep the past two nights. The pain has not abated AT ALL, though. Of course, it's ONLY been 2 days.. so, I'm not expecting miracles!

DOn't give up. I realise it's a HUGE pain in the rear to have to go off to all of these doctors. But, like I said, I did find one who I really like... the new internist... and may keep seeing her. We'll see.

Let me know how the Lyrica works for you, ok?

manicbeatz

8/30/07 12:10pm

Hi Anne . I pray your scans have a positive outcome. I am going today for yet another MRI. This time it is of my right shoulder. Xrays showed "hardly any joint space".

The pain doc I saw was also an anesthesiologist. In my neck of the woods there are not a many choices of doctors. He is in with several other doctors and that is IT for our area. I was told I could not go to one of the other doctors because they don't allow patients switching unless there was a "major problem with the dotor I had seen . Talk about catch 22 grrr.

I have been on Lyrica for over a year and it does help some of my pain I t was just increased to 100 mg 3 times a day so I am getting use to to the change from 75 mg. The Trileptal is great for sleep and was also acting as a mood stabilizer for my bipolar but I had to come off it because my sodium level dropped way too low. this is a side effect so make sure your doc is ordering blood tests periodicly.

tkw

9/ 3/07 6:10pm

My daughter is 16 yrs. old and has had three compound fractures in her back and just recently has been diagnosed with spondylitis( a degeneration of the spine), she is in pain all the time. Her dr. refuses to prescribe her the pain meds she needs and has prescribed her trileptal. She is NOT bi-polar and she does not have seizures.

Why is this being prescribed??? I will not be getting this script filled!!!!! It seems to me this is a dangerous drug, especially for a 16 yr. old that has no symptoms of what it is for.

manicbeatz

9/ 4/07 3:22pm

This is a question you should ask your daughter's doctor. Tell him/her that you want to know why it was prescribed, side effects, and any other concerns you may have . I think you should do this whether you start her on Trileptal or not. I would eiother ease your mind or give you insight into whrther or not you can continue to trust this doctor with your daughter's health problems. I am NOT advocating you changing doctors ! I am simply saying we all need to ask questions as along as you have questions regarding anything a doctor tells you. After all they work FOR YOU.Without patients they would be out of business.

tkw

9/ 4/07 4:36pm

Yes, you're right they do work for us.

When I asked why she prescribed it, she gave no tangible answer. Just went into talking about lupus and cancer patients.

I will get another opinion, whether we decide to change dr.'s or not. I am not getting any straight answers from this dr., and that tends to make me uneasy. Along with the statement that the dr. said that she would rather my daughter engage into illegal activity and purchase marijuana because it might help but she wasn't going to prescribe it. Why, because she said she didn't want to be responsible for getting her addicted to vicodin. But she's not worried about my daughter getting addicted to marijuana??? What the heck??

Paul Florio

2/14/08 9:31pm

Check the literature about fibromyalgia.

I found Guaifenesin to be the only product that

controls my pain, controls not elimiantion.

manicbeatz

2/16/08 8:10pm

Hi all, I am sorry I have not responded sooner but I have been in a grand funk. My Pyshc doctor calls me very challenging. She is great. She keeps my primary informed on everything we are doing for the bipolar. I don't know wherther the depression is part of the bipolar cycles , situational, or the pain. I supect as my psych doctor feels that is all three. My dad has colon cancer and has been fighting it for 15 years. Now it has matisized to his pancreas. He is still going through chemo. i watch as the chemo gets him. i think it will claim his life before cancer does. my mom's heart is extremely bad with 2 arrythmias and just recently she went into ventricular tachycardia and of course was in the hospital. This explains the situational part of the depression.

The Lyrica does help to some degree and interting enough my psych cotor told me it was used in Europe as an antidepressant.

The good news is my primary doctor HAS started me on Lortab 3 times a day as needed (as needed- funny in a pitiful way). This has helped a lot. I am also on Lunesta as needed for sleep but it does nothing when I am hurting or cycling (bipolar) . I have gone 2 and 3 days with NO sleep. This is not healthy for sure. I have been on ambien as well. For me it worked BUT gave me a headache close to the intensivity of my migraines. I have an appointment with my primary doctor next week. I had already planned on asking him about amitrex injections for the migraines. I say had already planned because I did not want anyone to think I got the idea here. I have had yet another MRI and an MRA of my brain. I have not heard the results as yet. I suspect they will show nothing serious because I have not heard anything and it has been long enough to have been studied. At least I know I HAVE a brain. Big Grin

My primary wants to send me to a large teaching hospital to try to get answers as to why I am having symptoms atypical of fibomyalgia. I said last that I was not seeing anyone but My primary and my Psych doctors but I was referred to the same neurologist that I have seen on and off for 21 years. He thinks my all problems all now are "caused" by the bipolar diagnosis. Both my primary and psyhc doctor think otherwise. I don't know how it is where you guys live but here there are 4 neurologists . Since they are ALL in the same practice they have REFUSED to allow my to see another doctor. Needless to say I WILL NOT go back to him. Well I think that about catchyou all up on things here. God bless you all and you are all in my prayers. I liked the way you put that spiritual not religous. It is quite amazing how my church "family" abandoned me when I was no longer able to teach sunday school , work with the children's choir, teach 5 to 7 year old children with an outreach group before Sunday night services. I have had "friends who have stopped calling or visiting as well. Have any of you had that experiance? Take care all. Thank you for being here. I am here for you should you need to vent (long winded ) as I have done today.

undermanaged pain

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