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Fibromyalgia Message Board


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Hi all, this is my first post.

I am posting on this board because I have a condition that doesnít seem to perfectly align with any particular category, but may most closely align with Fibromyalgia. Frankly, I donít know it is but I have to do something about it because it is driving me crazy.

I have two doctors and neither one have been very helpful. One just says that it is muscle inflammation and that it will eventually go away, while the other one actually thinks that I am using this as an excuse to not exercise. This latter mind set is absolute nonsense because I do exercise and I want to exercise more, but I am being stonewalled by this terrible aching problem. This condition has been around for over a year at least.

The pain feels exactly like a severe flu muscle ache pain, but it seems to be primarily localized to the buttocks and the rear upper part of my thighs. It is a deep ache type of feeling.

Ironically, other than perhaps feeling a bit weak when itís really bad, it doesnít really bother me much when I am exercising. Itís not until the nighttime and especially very late at night (like 2 or 3 am) that I wake up multiple times in agony. Things like Ibuprofen used to help with getting me back to sleep, but now it has much less effect. I have to get up and try to stretch the ache out of the muscle areas, and sometimes with the Ibuprofen I can get back to sleep and sometimes I simply cannot.

Most doctors when they look at me just assume that I am healthy, because I look athletic, but unfortunately I have borderline high blood pressure, and unusually low levels of HDL so I am trying to get my Blood pressure down, as well as raise my low HDL levels, because both are significant cardiovascular risks. The trouble is that I simply cannot do any kind of aerobic exercise more than 1 day in a row (including just walking), because the muscle ache just becomes too great the next evening.

Any thoughts about what this might be, or how I can approach dealing with it would be appreciated.

Thanks!

LD
Hi, Your initial deep muscle pain in buttocks & upper thighs mimics my pain from 10 yrs ago. I was packing to move and I kept complaining about the pain in my butt & upper outside of the thigh. It was as if I had never exercised in my life and just did a marathon.

Anyhow, similar to you, I began to realize that many of the misc problems I had had for many years might all be part of FM.

I am interested in the idea of amitriptyline for migraine. I have taken a small dose (25 mg) for 2+ years to help me attain restful sleep. I now wonder if that is why my migraines have lessened.

Evening to night is tough for me too (just when I try to relax). I do find that if I force myself to exercise, I do feel better. It's that pivotal point-- just a bit but not too much! The pool therapy sounds good; yoga and pilates help too.

I also have gotten help from keeping my vitamin D level above 50 (please get your level checked!) and taking Calcium/Magnesium before bed.

I was on tramadol before and trying not to need it again, but I do take Diclofenac for inflamation due to Myofascial Pain.

Keep as active as you can!
According to my neurologist, there is no more effective medication for migraine than amitriptyline. The dosage that you are taking is right within the theraputic range too. It did help for me, but I just didn't like the side effects of the medicine. Still, it wouldn't stop all migraines, perhaps only about 60 percent of them in my case.

Lately, my muscle ache has been haphazard, which is a good thing because it used to be a constant pain at night, and even often during the day. I have significantly changed my diet to mimic a diabetic's diet, and I am taking every conceivable inflamation reducing supplement that I can think of to help manage the inflammation.

With luck, maybe it will fade entirely :)

LD

[QUOTE=LilliePup;3779184]Hi, Your initial deep muscle pain in buttocks & upper thighs mimics my pain from 10 yrs ago. I was packing to move and I kept complaining about the pain in my butt & upper outside of the thigh. It was as if I had never exercised in my life and just did a marathon.

Anyhow, similar to you, I began to realize that many of the misc problems I had had for many years might all be part of FM.

I am interested in the idea of amitriptyline for migraine. I have taken a small dose (25 mg) for 2+ years to help me attain restful sleep. I now wonder if that is why my migraines have lessened.

Evening to night is tough for me too (just when I try to relax). I do find that if I force myself to exercise, I do feel better. It's that pivotal point-- just a bit but not too much! The pool therapy sounds good; yoga and pilates help too.

I also have gotten help from keeping my vitamin D level above 50 (please get your level checked!) and taking Calcium/Magnesium before bed.

I was on tramadol before and trying not to need it again, but I do take Diclofenac for inflamation due to Myofascial Pain.

Keep as active as you can![/QUOTE]
Exercise generally aggravates the condition, while not exercising seems to reduce the pain. I think that it is definately in my muscle, because I do a lot of stretching, and I also attempt to squeeze the muscle tissue with my hand. It feels like the muscle tissue itself is inflammed or something like that, because the feeling is both pleasant and unpleasant.

Still, I cannot rule out the possibility of a nerve issue, because I have had nerve issues before with my neck and my back. The muscles surrounding those nerves in my neck and back could get quite inflammed, although the pain sensation was a bit different from the ache sensation associated with my buttocks and upper rear thighs.

For my buttocks and thighs, it is as if there is a lot of lactic acid built up in the muscle tissue, but yet there is a difference. In other words, it's not really the same as a typical sore muscle feel from too much exercise. It's more like a deep muscle ache that simulates the feeling you get from a bad case of flu.

LD


[QUOTE=legallyblondied;3779223]I do not have fibro but happened to see the heading of this
thread. I am a dancer and have osteoarthritis everywhere but
have had a similar problem with buttock pain and upper thigh
pain but mine was on the outside of the upper thigh. If yours
is in the back of the thigh, this might no apply. Mine was from the sciatic nerve being pinched. It runs through a notch
in the lower lumbar spine and across the buttocks and then down the thigh and across the foot to the toes. It is the longest nerve in the body and is often pinched or tweaked for
one reason or another. I know about nerve inflammation but
not muscle. Just a thought...also you might try stretching
and not exercising....you can do this laying down....try to
stretch out the psoas muscle and the pirmiformis muslce.
Often muscles are very tight and grip the nerves running
through them...exercise just tightens them more ....look
up stretching these muscles and maybe it would help. Karen[/QUOTE]
Interesting Rita27.

I have not yet been diagnosed as having fibro (I very well may have it), because I cannot get a physician to take me seriously enough to fully investigate it.

I walk in to their office, and they take one look at me, and I guess that they just assume that I'm a healthy athletic looking guy who couldn't possibly have a problem like that.

The "problem" is that I look a lot younger than I really am. Most of the time this is a good thing, but it is not a good thing when you have something wrong with you that needs proper medical attention.

I was going to go see a naturopathic doctor (because there is one within driving range), but then I discovered that I have no insurance coverage for that type of doctor, and I simply cannot afford the $175 dollar or so cash fee per visit charge.

So now I'm looking for yet another doctor that is reasonably close to home. I live out in the toolies, so my options are somewhat limited. It will be extremely inconvenient for me, but the Spinal clinic doctor is probably my best bet. The problem is that there are no clinics like that anywhere near my home.

At the present time, I do not have pain in my hips or even my lower back, although my mid and upper back muscles near my spinal column are wound up like a drum from something (probably degenerative spine), so I get a fair amount of pain in those areas, as well as in my neck.

Even so, at night, it is the pain in the buttocks and upper rear thighs that always bothers me the most. And, just like you, the simplest exercise; even something like picking up a heavy brief case, is enough to start the aching process all over again. It usually doesn't bother me right at the moment, but always later on the aching starts. It's just so incredibly odd.

Maybe this new doctor nearby will be a bit more sympathetic. By the way, I also have (or had) arthritic knees, and fingers, but Glucosomine and MSN seemed to cure the symptoms for me at any rate.

LD

[QUOTE=Rita27;3782122]Hi conan, I could have written your post. I have the exact same butt and leg aching, plus low back and hips, esp. on the right side. I have the same trouble with exercise. No matter what I try (bike, elliptical, walking, even the pool), everything hurts this area and it is terrible at night. I was diagnosed with fibro and osteoarthritis (knees, hands) about 6 months ago, and I've just been getting worse as time goes on. This pain is the hardest to take.

Since my rheumy doesn't seem to be listening to me I made an appointment with an orthopedic doctor to see if he can tell if I have some sort of problem with my low back or if it's sciatica or something. I think when you have a fibro diagnosis, the doctors just attribute everything to that, and it's possible that it's a different problem.[/QUOTE]





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