I have been taking water therapy for a few months now. The last assessment test that I had done showed that I had actually lost muscle and had become much weaker. I have been on so many NSAID's. The meds that I'm not allergic to don't work and there are so so many that I have allergies to. I have been on several different sleep aids. They all have worked for a short time, but after a week or two the meds stop working completly. The doctor that diagnosed me with FM / FCS, is sending me to Philadelphia to a pain management doctor. Hopfully he with the help of the other doctor will be able to find the right meds to put the two diseases into " remission ". Does anyone out there have any suggestions to why my body reacts in this way and is there anything that I can do to make this process go along faster. I'm really having problems with the pain in school......... ?
Thank you for your input, wishes of good health,
Unfortunately hypersensitivity to drugs (and indeed to many substances) is not uncommon in FM. Since FM is not believed to be an inflammatory disease its not surprising that the NSAIDS didn't work (and a bit surprising that they tried them).I supposed that you've tried lycrica and cymbalta - two drugs recently approved for FM?
FM is difficult to treat and it typically takes a good deal of trial and error to find the right combination of drugs and therapies. Hopefully the pain management specialist you're going to has experience with FM.
Some non drug alteranatives that have been helpful for some FM patients are relaxation therapies such as meditation and progressive muscle relaxation as well as things like acupuncture and massage. I know one person who swears by acupuncture. These therapies appear to calm down the stress response system - which may be an important part of this disorder. These things may seem small but if you put a bunch of small things together they can make a real difference.
Dr. Clauw is one of the most well known FM researchers/physicians. Check out his eight tips for FM patients.
In particular check out number 7- start a diary and see if you find items that seem to be associated with symptom worsening and start to eliminate them.
Of all diseases FM and CFS may be ones that take the longest to learn how to deal with and adjust to. Try to keep your spirits up. As Dr. Clauw says there is more and more research on this disease and several drugs have been approved for it - something that seemed inconcievable a few years ago.
Good luck with your appointment.
I know how you feel. Your situation definitely sucks. After my accident 4 years ago, I dealt with the same situation. Drs said that my problems and inability to take medicines did not follow any medical explanation until I read a book about toxins and their effect on the body. Go to the library or your local health store or look up MCS (multiple chemical sensitivities) on the internet. Most doctors dont understand or know about mcs or have any ability to treat mcs, and in my condition they were saying that my pain is all in my head when their pills did not fix it but made problems worst. Here is what helps me with my pain everyday lots of walking, running yoga etc. , green and black tea etc. only organic foods, no soaps or detergents pesticides, colognes, etc in the house. Read and study about nutrition everyday, eat raw foods as much as possible. Understand that if you have pain, that is your body saying something is wrong, and usually the problem is too many toxins in you, (which come from the air you breath, water you drink, swim, and shower in, medications you take, preservatives artificial flavorings and colorings in your foods, pesticides (one of the worst), vehicle exaust, fingernail polishes, new carpeting, fresh paints, blue grass (hybrid), being around electronics too much. I usually choose not too use airconditioning in the house, but move fresh air through the house with fans. I had to change many things one thing at a time, but it is well worth it not to have to deal with a lot of unbearable pain all day.
You are finally headed in the right direction. Some doctors don't know much about pain management. Some will finally be honest and admit that, then send you to a pain management doctor that knows and can try different ways to help you. The other doctors will tell you that it's all in your head and learn to live with it. Sounds like you got a good one, good luck.
Hi, so sorry you are having so much trouble with finding something that keeps working to help you. My body also is one that has to try so many different remedies or treatments. Just please, do not give up! I am in pain every day from too many problems to name here, but thank goodness I have a doctor sent from heaven who did not give up on me and he and I worked TOGETHER to find out what was going on with me and he has me on a pretty good pain management treatment now. Seems that what usually works for most people doesnt work for me or continues to work for me. BUT, because he didn't give up on me and send me screaming to the nearest shrink (no disrespect meant) I am finally at a tolerable level of pain. Am I pain free? NO! But I never expected to be. I just wanted to be able to take out my own trash. One problem that we found with me was and is my thyroid disease. Graves disease MIXED WITH ADRENAL EXHAUSTION. Thats when I really learned that I was a medical oddity. The most important thing is to keep a good line of communication with your doctor and to be honest no matter how silly or insignificant YOU might think it is. Also I went to a sleep clinic and found out I have severe OBS=obstructive sleep apnea and also central sleep apnea=my brain for some reason just isn't sending the signal out for me to breathe normally especially at night.The results of my sleep study showed that I was waking up almost all the time. Not enough that I would remember waking up but I was way past sleep depravation and truly felt like I was going to die if I did not get some real rest! It is a horrible thing to experience. There truly arent any words that can explain how that kind of exhaustion feels other than you feel like you are dying! (I had a car accident years ago with severe head trauma) Since that was finally diagnosed and they hooked me up with a bi-pap machine with oxygen piggy backed into my bi-pap machine I sleep alot better now. Yes, I have to take Lunesta every night to get maybe 3-5 hours of sleep but let me tell you it is a good 3-5 hours of sleep and I will take that over NO sleep anyday. Now that I am used to my sleep machine I cannot sleep without it now. I absolutely LOVE it! It does take some getting use to but I cannot say enough about it! Sometimes I actually think the quiet swishing of the oxygen machine with the bipap machine helps lull me to sleep.Have you had a sleep study?I do not have to use oxygen in the daytime unless I take a nap.I didnt mean to write so much I just understand how it feels when doctors look at us like we are nuts.Because what works for almost everyone else just wasn't doing it for me. Please don't give up. Has your doc checked your endocrine system and also a sleep study? My doctor still freaks out and so does his consultants when they find out my TSH =thyroid stimulating hormone (metabolism) (anything over 4.0 is considered HYPOTHYROID! The higher the number the lower your metabolism RATE is) is 104! YES! I said 104! They cannot figure out how I have the energy to even walk. Yes, I am tired but thrilled to still be here and watch my grandkids get older each year. The advice about toxins is also great advice.Try removing one thing at a time from your enviroment and or what you take, but you MUST let your doctor know this before you stop or start any medication and or supplement!!!!! Please take care. Sharon
I fractured my T-11 vertebrae in 98'. I was told at each visit, it would heal on its own by the orto Dr. My primary care doctor is telling me to walk on egg shells, don't fall, don;t bend wrong or it coud easily paralyze me or even result in death,. 2 yrs after the natural healing didn;t happen, and I had ever non surgical procedure u could have, I gave into a 3 level spinal fusion. Long story short..almost no oral med does nothing for me. In a hospital setting prior to a minor procedure they say just before they put me out, here is something that will relax u, u won't care what happens, I am then asking when are you going to give me that med as I am being rolled into OR, I am told I have already been given two doses...I feel absolutely nothing. So long story short, after years of procedures & taking pain med I have the highest tolerance to any meds. Eventhough I am on the strongest pain meds I sometimes have to go to the ER for IV med just so I can function and 8 out of 10 times that only gives me minamal relief. Your brain gets adjusted to a certain level after a certain time it's different for everyone. I don't know your age or the amount of time you have had issues but free advice from me take as little/none if you can get by, cuz a day will come when you are so desparate for relief nothing will work, I know.
I agree totally with living as toxin free a life as you can with many of the very helpful suggestions listed above. Another modality you may want to look into is frequency specific microcurrent.
I had some of your symptoms but it turned out instead of FM I actually had RSD or CRPS which is a chronic pain disorder. It was hard to diagnose because of the location. Doctors first thought I had fm because of weakness and diferent pain sites but turns out that I actually had five diagnoses including the above and Celiac Sprue that can cause weakness because my body cannot metabolize gluten correctly. If you do have fm, I just saw an article that came out on URI health section that talked about 3 new drugs for fm.
It took me awhile to find a good pain doctor but that helped sorting out my problems a lot. I also did water therapy but lap swimming was better. It took away my pain while in the pool and gave me pain relief immediately afterwards but the relief never lasted for long.
For my condition, the only things that have helped are narcotics, Keppra which is an anti-seizure drug and Namenda.
have a very similar issue...can handle more drugs than an elephant..that is what my son says..after taking nearly everthing out there..works nice for a few days then nothing or at least not much....wish we could figure out why...Dr's here are SO afraid of narcotics...it sucks...only way I don't hurt....
Works fine for a few days!!! That sounds so much like me taking prescriptions after I injured my back. First of all realize this. The pain that you feel has just as much purpose for you as a red light has on the highway. It is there to tell you stop, look, listen. The pain pills are like blocking out the red light. Do not try to fight the pain, instead work on figuring out what is causing the pain. Know who and what your enemy is if you want to win it. In this case I would say your enemy is probably toxins and inflamation in your body. My recommendation is lots of excercise, fresh country air,( not airconditioning, and vehicle exhaust. lots of water green tea, black tea, herbs, only organic produce, preferably raw as much as possible. Multivitamins, glass containers (not plastic). Go to your library and get a book about toxins, and multiple chemical sensitivity issues. Buy some good books about nutrition and inflamation issues. Fresh water preferably spring water in glass containers only. Is it possible that by little changes in your health everyday your body might be able to do its job better in the long run? Buy only 100% organic shampoos soaps etc. Is it possible that the medications that your doctor was giving you was only putting more toxins into your system, which was making you only hurt worst longterm? Two very bad toxins to be around are pesticides, and fingernail polish. I am only writing this because at one time I thought I was the only one with these issues, and had some doctors try to convince me that it was all in my head and that I had schysophrenia. (lol). Most people with chemical sensitivity issues have to see at least 12 doctors minimum before they even find one that is familiar with these issues, even though this is one of the fastest growing and most misdiagnosed health conditions around today.
Have you been tested for lyme disease. And if you do so, make
sure it is a good lab. Good Luck, Lorraine
I cannot stress enough that it is so very important to make sure you have an accurate diagnosis and give as specific a description of your pain as possible to your doctors. Fibromyalgia/chronic fatigue is kind of a blanket diagnosis for many things and most doctors simply do not have the time to do adequate research and take the time with patients to find a more accurate diagnosis.
If you are not satisfied with the diagnosis you may have to do some of your own research and then find a doctor who is willing to sit down and take the time to look at some of the possibilities you may present to him.
In my own case, having had the same doctor (and a very good one, at that) for about 15 years I asked him point-blank if he was willing to take the time to examine my findings and consider possiblities other than Fibro/Chronic Fatigue. Having been able to observe that my condition was worsening he agreed to at least have a look. On my next appointment, after comparing my symptoms with the information I gave him, he said he thought he agreed that I was correct in my assessment of my symptoms and is sending me to a number of specialists, and I am now getting some (only some, but its better than nothing) relief from my pain.
Now going back a bit in my history, I was diagnosed with Fibromyalgia about ten years ago after suffering for about 15 years (for a total of 25 years now) with no diagnosis except depression and Chronic Fatigue...of course I got depressed, I was in pain nearly all the time and not much helped to allieve the pain! It was stealing my life from me. About two months ago I got desperate for answers because nothing was controlling my pain anymore and it was intolerable. I began searching for answers on my own on the internet by searching my original and major symptoms and the most prominent result that showed up was Dercum's Disease (also called Adiposis Dolorosa or Ander's Disease, it is considered a rare disease - copy and paste the following link if you want to find out more - http://fatdisorders.org/what-are-fat-disorders/dercum%E2%80%99s-disease-adiposis-dolorosa/).
Dercum's Disease is typically misdiagnosed as Fibromyalgia/Chronic Fatigue. My original symptoms were pea-sized painful lumps just beneath the surface on the sides of my legs, so painful that I could barely tolerate my young children sitting on my lap, and accidently bumping the side of my legs on a piece of furniture almost made me keel over in pain, and periods of fatigue that were so overwhelming I couldn't do a thing most days. My disease has progressed over the past ten years to the point of having these lumps almost everywhere on my body, but especially my outer legs (especially the thighs), arms, buttocks and belly. Over time the pain went from flu-like aches to waking up feeling like I was run over a bus, to feeling like it ran over me and then backed up again. I now have have shooting, stabbing, burning pains at random places in my body, and get frequent migraines. Inside it feels like somebody is twisting my bones it aches so horrible. I have also come to have crawling or mild feelings of electricity running up and down my right leg and also casing weakness in my legs, especially after climbing the stairs. The pain and other sensations in my leg never really goes away anymore. The pain also shows up or feels like tendonitis in my forearms, hands, ankles and rib cage. A real mixed bag.
I have only just recently come to understand the difference between muscle and nerve pain, and above all, this can be an indication of something other than simple Fibromyalgia. Make sure you try to explain your pain as best you can to your doctor.
The nerve pain is the kind described above: shooting pains, stabbing, burning or cold sensations, tingling, mild electical current sensations, or pain that feels kind of like a toothache but in other parts of your body (for me it runs down my shoulder through my elbow and into my forearm - kind of like when you whack your funnybone, except the pain doesn't go away in a few minutes.
I am currently trying some experimental drugs from which I am getting some relief. They are low-dose Naltrexone and Cobroxin (not yet released to the public but should be soon-was FDA approved in August this year, it is a dilute form of cobra venom at a dose that is non-toxic and pain-relieving as well or better than morphine, but without the side effects). I will also be trying a product called Neuragen in the near future, with the hope that it will relieve the pain in my legs so I can sleep. It is a topical gel or oil which quiets the pain caused by nerve damage and excitement. The Cobroxin and Neuragen do not require a prescription, by the way, but you may have to ask the pharmacist since it is behind the counter.
Don't give up trying to find answers, and above all, believe that there are products out there than can help relieve your pain. Be willing to do as much research as you can on your own and find an open-minded doctor who really listens to what you are saying.
I hope this information helps you and that you will soon find some relief so that you can once again enjoy life.
Because your innate immune system is out of kilter. You could have your doctor check MMP9 levels. If high, go on ACTOS to modulate.
i found out that a lot of pain meds are getting stuck in my gallbladder (pain under right rib) ... morphine does absolutely NOTHING for musculoskeletal pain ... laudenin? from the ER helped me ... none of the injections (painful) ever helped ... actually sent me to the ER for other pain relief ... please don't take NSAIDs ... i had for years and came close to renal failure ... my kidney doc says they put all of them on commercials, saying they help arthritis, etc., bone pain ... he says they just kill your liver and don't help your kidneys either ... he said he gives his patients Tylenol (ones that already killed their livers with NSAIDs) ... doctors just don't seem compassionate ... and the ones that are charge u $400/hour and don't accept insurance
prayers for u
The reason why you are not responding to the drugs is because your pain level is high and your tollerace is built up when you take any pain pills. your muscle loss is due to the fact that pain pills affect your muscles by storing the medicine in your muscles and alot of people who take pain pills either end up with loss of muscle or problems with internal organs from the chemicals and the way they are made are not for our bodies to handle. Try massage therapy or deep tissue rolfing it was the only thing my body would respond to when I was in chronic pain from being hit by a car in my car and It damaged three vertibraes in my neck and back and I couldnt hold my neck up with out using my hands and Ill never forget how many different treatments and therapys they sent me to and Im talking Chiropractors, Water therapy, physical therapy, Heat and Ice therapy, rehabilitation therapy. The only thing that worked for my pain was massage therapy and rolfing. Rolfing is a deep tissue type of massage therapy and is only for the people with a high tollerace to pain. It is painful and yet it feels so good if you can learn to take the pain and direct it to your brain as just another feeling and breath thru the pain. You will go for a day of two at first feeling in your body and not so in pain and then it will as you do it build your tolerance for the pain and the more you do the less pain you will have and the only other thought is maybe try medical marijuana and that is natural and there is no scientific researh that can say it has any damaging affects. If they do they are lying I swear. You just have to take your medical records to get a medical card for it and you will be legal for it. Good luck and I say do what works for you and dont lert anyone chane it.