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Have you had any dealings with fibromyalgia? I was diagnosed with this quite a few years ago. Just wondering if anyone has found any real help for it. I have alot of pain in neck, shouler, and back area. I can't always take muscle relaxer as they make me too sleepy. Sometimes massage helps but lately, its not helping either.
Let me share my own situation. I had been diagnosed as having fibromyalgia by my physician because he was not able to determine that it was anything else. His specialty was Internal Medicine (a fancy name for a General Practioner) For several years, he switched me around on different medications with the idea that something would work. However, the problem was only getting more severe. I had severe pain in my neck and mid to upper spine, and severe pain to the point of numbing along my shoulder all the way do to my fingers. Sometimes the left side was affected, sometime it was the right. Finally, after years of going through all this with things only getting worse, the doctor finally decided that since he didn't know what else to do, that I should see a neurologist.
That was the first smart step for me. The neurologist gave me a nerve conduction test and ordered an MRI scan to see what's going on. The nerve conduction test confirmed some severe problems, and the MRI scan show what the problem was.
In my case, the vertebrae in the back of my neck were severely worn. It could tilt to the left or to the right. When it tilted (either direction) it would press against the major nerve to the arm. It could also lock up meaning the verterbrae wouldn't always slide back to more of a mormal position. When it locked up like that it pressed the nerve causing them muscles to tense up causing pain. And the pain would keep the muscles tensed on the nerves. It was a viscious cycle.
Because of how bad the vertebrae was worn, surgery to fuse the vertebrae wasn't an option. Surgery is a last resort. Once surgery is done, it's not like they can go back in and undo it. And in my case, there wasn't much to graft together anyway. So I have to live with it. But I do have strong medications available to manage things during severe flareups. For me, I usually feel more tolerable within a few days. There's never a day I don't feel pain, but some days are better and some days are worse.
The point is that the diagnosis of my physician was flat out wrong. Needless to say, I now have another physician. If your condition is only getting worse, and treatment for fibromyalgia is not helping, then it might be worth having a specialist do more extensive exam and testing. It will either confirm the fibromyalgia diagnosis, or it may determine that there is some other cause involved.
I think I have all the symptoms and causes affliated with this syndrome/illness but the doctor's always suggest it's just a viral infection/illness or flu like symptom syndrome.
I am in the NYC area and need serious help in trying to find a doctor who specializes or even believes in this syndrome as many doctor's do not know the cause or even believe in it.
Has anyone on here ever heard of it? Believe in it? Have it?
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In my case, the vertebrae in the back of my neck were severely worn. ...........................So I have to live with it. But I do have strong medications available to manage things during severe flareups. For me, I usually feel more tolerable within a few days. There's never a day I don't feel pain, but some days are better and some days are worse.
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You are a good example of someone who took the time to find a good doctor! Do you wear a soft collar neck brace? Does it help? I had to wear one while awaiting a cervical fusion and it helped the pain a lot. Good luck!
You are a good example of someone who took the time to find a good doctor! Do you wear a soft collar neck brace? Does it help? I had to wear one while awaiting a cervical fusion and it helped the pain a lot. Good luck!
Thank you SouthernBellInUtah. I appreciate your concern. I may be wrong about some points, but my expressions are from my own personal experience and point of view as best I can recall. I still have MRI scans done every few years to keep track of whether things are the same or whether it's getting worse. The scans where I live are very expensive (about $1500-$2000), but I have Medicare now and that helps a lot. However, my wife and I travel to Thailand to visit family and friends periodically, and I have MRI scans done there which is much cheaper (last time was equal to $188 which included the scan, two sets of film prints and the Radiologist's Report). The cost to see a top neurologist at one of the best hospitals in the country was about $27, and included meds and a followup visit. It's probably a bit more now because of the global economic problems.
Early on, I tried wearing a soft collar neck brace, but it didn't help at all during episodes when the nerves were being pinched. I suppose the reason is because of how the vertebrae have deteriorated. The vertebrae can twist in a way that it slips causing the spurs (or whatever they're called) to lock up with a lower or upper vertebrae. That's not what a normal vertebrae is suppose to do. It causes the soft disc to bulge out and press against the nerve. Several vertebrae are in pretty bad shape, but the worst is the C-4 or C-5 (can't remember which). The vertebrae were somewhat weak and porous, and I spent many decades operating and bouncing around on some heavy equipment which pounded the bones which most likely accelerated the wear more rapidly than if I had worked at a less strenuous occupation. Anyway, when the vertebrae do lock up, the pain is incredibly intense and turns into a viscious cycle. The nerves causes pain making the muscles to tense up, and when the muscles can't relax, it keeps pressing on the nerve.
I had been taking Neurontin, but it never really helped a lot for me. Although it's supposed to work on the nerves, it's not a pain killer. If you stub your toe (for example) you're still going to feel the pain. LOL! I've discontinued using it, and now have some very strong medication for pain that I only take during an severe attack. I've taken muscle relaxers in the past, but they've only been so-so in effectiveness.
I had also gone into the hospital's physical therapy department for a massage, hot and cold packs, and machine neck stretching. It helped because it stretches the vertebrae. But for me, it would only last until I got home and the vertebrae start compacting together again thanks to gravity. One of the disadvantages humans have being upright walkers.
The steroid injections in the neck helped a lot, and could provide effective results from anywhere between 6 months to a year. But the hospitals in my area no longer provide that treatment because (what I've been told) there just wasn't enough "demand" to justify the hospital's own insurance costs. So, I have no other choice than to opt for alternative medical solutions, which frankly, I'd prefer not to do because of potential side effects like abuse or addiction. Fortunately, I don't just use such meds unless there's a serious reason, but I'd still prefer not to use them at all. There is another medication that's non-addictive that is available in my state and is being considered. I've tried a small sample and was quite surprised at the results.
I'm sure you understand that I'm in no way suggesting that my own particular circumstances are typical for everyone. I'm only saying that I had been diagnosed as having fibromyalgia because the physician had no idea what else it could be. And it wasn't until I saw a neurological specialist that it was determined the real nature of my problem. I've been permanently disabled for the last 11 years now. Although there are times when there's some improvement, the pain never really goes away. It's just that there are times when it's better and times when it's worse.
That said, I fully realize that although fibromyalgia is a syndrome, it's a very real condition for many sufferers afflicted with it. The description the OP mentioned sounded similar to my condition, although I have no idea what the OP's condition is. If there's any point to relating my own condition, it's to say if your condition is not improving and only seems to be getting worse, you should get a second opinion from a specialist to be absolutely sure it isn't something else.
I'd also strongly recommend to avoid physicians and specialists contracted with Workman's Comp or Social Security. I've been down that road too. Some of these people are only looking to deny claims. I've had them say things like, "You're just getting old and feeling aches and pains. We all go through that." That's utter nonsense! The only way some of them will approve your claim is either if you have no arms and legs, or you're dead. I realize there are plenty of scammers though who try to file fraudulent claims. If you have no choice in the matter, then go ahead and see them, but you don't have to take their "diagnosis" as absolute. Remember, these people are contracted to weed out the frauds. However, conditions that are not always so easily visible can be difficult to determine by dexterity tests (putting pegs in holes), squeezing fingers, watching you walk, and a simple x-ray.
You should also choose your own specialist to do a full examination, or one that your regular physician recommends. It's your body and your health, and you have every right to seek a second opinion, even a third opinion, rather than taking a single opinion for granted and just assume such an opinion is correct because 'your doctor should know'. GPs or Internal Medicine physicians are fine for checkups and minor or routine matters. But in serious medical matters, they are not specialists and might be wrong. It's EACH PERSON'S responsibility to be absolutely sure that their diagnosis is in fact absolutely correct.
Had I been diagnosed correctly early on, I might have been able to have surgical graft done to prevent problems from getting any worse. But unfortunately it didn't happen like that. Although there's nothing I can do to improve things, I'm fortunate because my life in not in danger and the worsening of the problem is slowing down because of better care. I may not be 100%, but I'm still going to get the most out of things and enjoy life to the fullest as best I can.
NightBazaar,I commend you on your decision to discontinue the pain killers.My daughter has fibro and became addicted to the pain meds. she was on, however she did eventually checked herself into a wonderful rehab center and is now clean.I also have fibro but learned from her situation to not take the meds.I did take the injections for awhile before retiring but now my daughter and I both are taking Lyrica and it has been a God sent for both of us.We both have degenertive disk disease and bulging disk.I also have spurs on my spine.Now I`m wondering if the deseases are hereditary .
NightBazaar,I commend you on your decision to discontinue the pain killers.My daughter has fibro and became addicted to the pain meds. she was on, however she did eventually checked herself into a wonderful rehab center and is now clean.I also have fibro but learned from her situation to not take the meds.I did take the injections for awhile before retiring but now my daughter and I both are taking Lyrica and it has been a God sent for both of us.We both have degenertive disk disease and bulging disk.I also have spurs on my spine.Now I`m wondering if the deseases are hereditary .
my husband,daughter, hubby's sister and her daughter all have Fibromyalgia. My sister'n'law , in a desperate attempt to find a cure, went to many doctors. One she and her daughter went to said there are varying types of Fibro and the one she and daughter have is hereditary. She called my husband to inform him of the likelihood that he and our daughter have that type. We haven't done further research to see. It is what it is no matter what kind. Hubby takes Lyrica too. Our daughter copes without any meds--for now.
DreamWeavin,my heart goes out to your daughter.I tried to go without the meds,with injections only but as I got older it became harder to deal with.I did get some relief after I retired but still needed the Lyrica,I haven`t had an injection in quite some time now.The Lyrica is so wonderful and it is not a narcotic.
NightBazaar,I commend you on your decision to discontinue the pain killers.My daughter has fibro and became addicted to the pain meds. she was on, however she did eventually checked herself into a wonderful rehab center and is now clean.I also have fibro but learned from her situation to not take the meds.I did take the injections for awhile before retiring but now my daughter and I both are taking Lyrica and it has been a God sent for both of us.We both have degenertive disk disease and bulging disk.I also have spurs on my spine.Now I`m wondering if the deseases are hereditary .
A.F.D., the only med I discontinued was the Neurontin, which is not addictive, but it can have some risky side effect with some people. For me, it just didn't work very well. It's not a pain killer, but it interacts with the nerves to somehow avoid pain in the first place. It's often prescribed for people with epilepsy, but it seems to work for other problems involving the nerves. It just wasn't working out for me though. The recommended doseage was fairly high, and when discontinuing it, it should be done gradual.
That said, I do have strong pain medications that are indeed addictive if abused or taken often. The only time I use it though is when an attack is extremely severe. Still, I'd prefer not use them at all because they do make me totally useless. When I do have to take them, I usually wait until night a bit before bedtime. Never during the day if I have to go somewhere though.
There is a non-addictive medication available where I live, that is being considered. I did try a very small sample a couple of months ago. I kind of expected it probably wouldn't help, but I was quite surprised by the results, so it is something that's being considered in my case.
I think degenerative bone disease (the discs) might be hereditary, but I'm not sure about fibromyalgia. The problem with fibromyalgia is that it's a syndrome. The symptoms are pretty consistant, but what causes it is unknown. It wasn't too long ago that many physicians didn't take it very seriously, and thought most of it was in your head, so to speak. Fortunately, for people who suffer from it, it is taken much more seriously, but as I said, the cause is unknown. It certainly seems to involve the nerves because of the pain. Maybe it's some kind of damage to certain nerves for any number of reasons, but I have no idea.
I'm glad to hear your medication is working for you.
I discontinued my small dosages of Tramadol, and feel much better now that I am clean of it. I am now taking a regular Lyrica 25mg every evening, plus a Cymbalta 20mg. I took Neurontin for neuropathy in my feet and legs, but did not renew when the prescription expired.It had too many side effects, and my pain and burning are better now.My biggest problem now is a painful right arm and shoulder. I am afraid I am going to have to get a shot in it. I really dread that, because of the extreme pain I experienced with the shot in my left shoulder. That shoulder did get much better, but man, did it hurt when the shot was given!
I also take Acetaminophen as needed, and as little as possible.
I have had fibromyalgia for years. I was only 32 years old when it started by the time I was 35 yrs old I had decide I could live the next 50-60 years of my life like this and I didn't want to take prescription medicine for the rest of my life. I went to my GP and he did a Vitamin D test to see if I had a deficieny. A week after the test I found out that I was D deficient and my GP instructed me to start taking 2000 mg of Vitamin D each day. My GP believed that if I continued wihtout missing a single vitamin for a least 3 months that I would begin to see a reduction in my FMS pain. Sure enough it started to go away. It has been almost 3 years and as long as I continue to take 2000 mg of Vitamin D each day, I am 98% cured. Every so often I will have a strange muscle flare up in my back, but the every day pain I felt all over my body is gone. I highly suggest seeing your Docotor or General Practioner for a Vitamin D test. You may find that you can be cured with one little vitamin.
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Fibromyaglia
I think I have all the symptoms and causes affliated with this syndrome/illness but the doctor's always suggest it's just a viral infection/illness or flu like symptom syndrome.
