[Nebulous]

I'm a 38 yr old male who is in otherwise very good health. For the last 5 years I've been suffering from an illness that no neuro or rheumy has been able to diagnose thus far.

Here is the problem: I can walk say 10 blocks then head back home and there's no problem, but say that I were to walk 20 blocks then I'm likely to trigger a flare up. The flare up will not come right away, in fact I won't start feeling it until the day after next. So if I walk 20 blocks on a Monday, my flare will start on the Wednesday. Nothing seems to be able to stop the flare up from coming. The flare up will usually last about 5 or 6 days.

What I refer to as a flare up consists of the following:

Burning and tingling muscles all over my body on both sides equally.
Very tender and achy muscles.
Whole body fatigue (generalized weakness) probably from the pain.

I'm usually bedridden while I wait out the flare up. For DOMS they suggest against staying in bed however further activity seems to aggravate my symptoms. When I'm not flared up my energy levels are decent and I feel fine besides some myofacial pain from having been mostly inactive for 5 years.

Initially I thought that I might have a myopathy as my CK was measured at 10,000 however that was post-workout after a long absence from the gym and since then my CK levels have always tested within normal limits (was tested immediately after biking).

Spinal MRI, EMG and nerve conduction tests and a needle biopsy all revealed nothing.

As far as bloodwork my RF, ANA, IGam, ESR and CRP were all negative or normal.

I should point out however that I have never been tested (blood or otherwise) during an actual flare up.

So far I have been unable to find a Doctor that has any idea what is going on nor have I been able to find another single person that suffers from something like this despite extensive searching on-line.

This mystery ailment has robbed me of my livelyhood and I have no clue what it is. I don't understand why such mild exertion triggers these changes in my body. I've tried graded exercise but I never seem to get anywhere.

I see now that myopathy was a dead end. Given the burning and tingling aspects of this condition I'm thinking along the lines of a neuropathy but I don't have enough expertise in this area. This ailment started after about a year of inactivity due to suffering a burnout at work so I also wonder if it could be some kind of deconditioning syndrome. Some kind of auto-immune disorder seems possible although that's not hinted at in my blood-work.

I would be so grateful if someone knowledgeable would give me their thoughts or some advice. Thank you kindly.

[Dr. Smith]

Hi Neb, welcome.

What kind of work did you do; any chance you were exposed to something environmental?

Doc

[Nebulous]

Originally Posted by Dr. Smith

Hi Neb, welcome.

What kind of work did you do; any chance you were exposed to something environmental?

Doc

Hi Doc,

Actually, it's funny you ask that because during that year after my burnout that I spent mostly at home, there was an excavation of an old steel mill right across the street from my house. They were supposed to start the excavation during the winter to prevent the particles from going airborne but they did it during the summer.

The thing is that I did not show any signs of exposure during that period such as vomiting, headaches etc... and my condition did not improve at all after moving away from that area. However having said that, the excavation of the steel mill does coincide with the start of my illness.

What do you think?

[Dr. Smith]

Originally Posted by Nebulous

The thing is that I did not show any signs of exposure during that period such as vomiting, headaches etc...
....
However having said that, the excavation of the steel mill does coincide with the start of my illness.

What do you think?

Symptoms of exposure to toxins aren't always immediate, nor do they always just go away if/when you or the source does.

What do I think? I don't know if there is/could be a connection or not, but I would certainly look into it. Steel mills are one of the biggies when it comes to toxic waste & environmental hazards, whether operating or defunct. Do you know (or can you find out) if anyone else in that neighborhood has developed symptoms of any kind (not even necessarily the same symptoms as you)?

Doc

[Nebulous]

Originally Posted by Dr. Smith

Symptoms of exposure to toxins aren't always immediate, nor do they always just go away if/when you or the source does.

What do I think? I don't know if there is/could be a connection or not, but I would certainly look into it. Steel mills are one of the biggies when it comes to toxic waste & environmental hazards, whether operating or defunct. Do you know (or can you find out) if anyone else in that neighborhood has developed symptoms of any kind (not even necessarily the same symptoms as you)?

Doc

Hmm, yeah it may be worth a trip back there to speak with my former neighbors. No one in my lowrise at the time experienced anything unusual from what I recall.

Originally Posted by Dr. Smith

Has fibromyalgia been ruled out?

Doc

The 2 rheumys I saw didn't even mention the possibility nor did they check me for tender spots. I know that I don't experience 'fibro fog' during my flare ups and I've read many studies that claim that exercise is good for fibro but it's certainly isn't in my case.

[Nebulous]

I have some bloodwork that my rheumatologist gave me to do about a year ago that I put off because I was kinda depressed about my condition. I'm gonna get that done this week if possible.

[Dr. Smith]

Originally Posted by Nebulous

The 2 rheumys I saw didn't even mention the possibility nor did they check me for tender spots. I know that I don't experience 'fibro fog' during my flare ups and I've read many studies that claim that exercise is good for fibro but it's certainly isn't in my case.

Just throwing it out there based on your statements of symptoms. The folks here in the fibro forum would know more than I (my wife has it). They don't often check men for fibro—only ~1:9 cases are males. I do know that exercise/exertion/stress can cause flares—with a 24-72 hr. lag time—and 'fog' isn't a given.

Doc

[alaska49]

Look into the diagnosis of RSD reflex sympathetic dystrophy, its a very painful neurological condition which is usually caused by a nerve injury but sometimes the person has no idea how it was caused. try seeing a pain management or an anesthesiologist they are who helped me I saw 56 doctors befoe I was diagnosed if you want to look RSD up try RSDSA.com and it has all the symptoms. There really isnt a good way to diagnose usually its just by symptoms

[Nebulous]

Originally Posted by alaska49

Look into the diagnosis of RSD reflex sympathetic dystrophy, its a very painful neurological condition which is usually caused by a nerve injury but sometimes the person has no idea how it was caused. try seeing a pain management or an anesthesiologist they are who helped me I saw 56 doctors befoe I was diagnosed if you want to look RSD up try RSDSA.com and it has all the symptoms. There really isnt a good way to diagnose usually its just by symptoms

Hey Alaska, while the symptoms of burning and tender muscles matches up with my condition, all the patient reports that I just read for this condition talk about terrible acute localized pain triggered by an injury. So it doesn't seem to be what I have but I'll keep it in mind. Thanks.

[alaska49]

Originally Posted by Nebulous

Hey Alaska, while the symptoms of burning and tender muscles matches up with my condition, all the patient reports that I just read for this condition talk about terrible acute localized pain triggered by an injury. So it doesn't seem to be what I have but I'll keep it in mind. Thanks.

Its is true many its localized but like mine its full body and I have friends where its on one side or half on the neck and also ona leg and not every one has a trauma some will get the diagnosis but will go the rest of their lives without any known injury for it. this disease just doesnt follow any specific pattern I would still try to see a pain specialist as I went through so many specialties and pain specialists seems to know more about other condtions then even neuros do.