ok folks, I've got a bit of complicated scenario going on, and not getting any answers from docs despite extensive tests by infectious disease, rheumatism docs, endocrine docs (I had acromegaly in 2000- was 'cured' via removal of tumor- but the acro wasn't causing my symproms that I'll describe below) seen by many different docs- Some suggest Fibro- some write it off as my Crohn's - some suggest it's just my sleep apnea causing the issues- (However I'm no longer snoring at night but don't know if I'm still partially waking many times an hour or not- I can't use the sleep apnea machines because of ostomy issues)
Symptoms- Exercise intolerance-
I can only do physical activity like walking, or raking for about
10 minutes before muscles begin to burn and hurt bad enough that it makes me stop- If I over do it, I find I have to rest for 1-3 days to recoup- as I'm overdoing it I get weak, shaky, sweaty, sick to stomach, thinking becomes very tough- feel like I'm going to pass out.
Burning Muscle pain-
My muscles burn like they have a buildup of lactic acid- this burning hurts- it's constant, even at rest- worst area is neck shoulders- but arms, legs and back muscles also affected-
CONSTANT muscle tension- which is the cause of much of the muscle burning pain I believe- I was on hydrocodone for about
3 years, and this helped alleviate the tension quite a bit- I came off the drug, and now docs won't re prescribe them, and the tension is getting worse- have trouble even keeping my head up- have to lay it back on couch to take tension off the muscles, and consciously try to relax the muscles- lots of strained muscles due to constant tension- muscle knots- mostly in neck and shoulders-
Thermal Regulator is broken-
Always cold or too hot- never really comfortable- it's like having flu in summer where you're cold one second, and burning up the next- I get full body cold sweats- get too hot, then too cold- it's crazy- Had my thyroid checked- it's fine- been checked for other endocrine conditions, nothing found wrong
Was always a deep thinker- avid reader- now I get confused when reading things that are complicated, or too many words-- I have to now keep re-reading paragraphs because I can't seem to concentrate and lose track of what's being said- Have trouble finding words when speaking as well- that was never me-
Wake up Exhausted
Non refreshing sleep- (might be due to sleep apnea- or worsened by it if I still have it)
Head to toe soaked in morning- this comes and goes though- and some may be due to my Crohn's disease- but happens even when in remission- so something may be causing it too
Short of breath a lot
When walking up a mountain, I'll very quickly, within 200 yards or so, start to lose my breath, get sweaty, shaky, feel like I'm going to pass out- Sweat will be literally pouring off me- Folks- 80 year old hikers are passing me on these trails- I'm 49 for crying out loud!
Hands HURT in cold-
Even holding a cold soda can hurts- have to put can down- it's very painful- pumping gas in winter is excruciating - Yeah I know, probably Renaud's -
There's more, but can't think right now-
Main complaints are painful muscles that burn all the time- debilitating weakness- takes days to recoup when I overdo it- exercise intolerance that has ruined my life- and cold/hot all the time.
I should mention that I don't have ANY tender points commonly associated with fibro, nor do I have trigger points that go with Chronic fatigue I guess? My other symptoms though seem to all indicate one of the two-
I've said it before, there is something wrong with my muscles, they are either not getting the fuel they need to keep going, OR they are getting enough fuel, but not able to convert it to energy- I've had my oxygen tested during exercise and it's fine- so that's ruled out- Oh, and my muscles will tighten up especially in my calves, when I'm walking, and not release like normal muscles should- Have to sit down, stop walking, rest them in order to keep going without the knotted up muscle pain- I could just keep going, grit teeth and bear it, but I pay for it if I do for a few days-
Post Edited By Moderator (BnotAfraid) : 2/12/2015 9:07:10 AM (GMT-7)