Mystery Ailment - Can you figure it out?
 

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.

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?

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.

I wanted to add that unlike what I've read about people with neuropathies, I only experience burning and tingling, never numbness.

Also, I don't know if this is relevant or not but I notice that many parts of my body (mostly upper body) often seem very cold to the touch. But that seems to occur independently of whether I'm having a flare up or not.

I should also mention that I have curvatures in my spine which have been there since I was a teenager but it never caused me any problems before.

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.

Hey Nebulous :)
 

I'm not sure you 'have' to have numbness with neuropathy.

MrsD, Glenn, Doc ?

I have small fiber neuropathy....confirmed via skin punch biopsy. I don't know a lot about this stuff.....my journey is just 9 months old :)

Just trying to help.

Debi from Georgia

Not necessarily--
 

--there are many symptoms of neuropathy--"positive" symptoms, meaning sensations of things that really aren't there, which includes neural pain, tingling, and parastheses; "negative" symptoms, usually characterized as numbness or lack of sensation; or even no sensory disturbances at all--it is certainly possible, though rarer to have neuropathy that only results in motor dysfunction and/or autonomic dysfunction but leaves the sensory systems intact.

After some further thought and reading I believe that there is nothing wrong with my nerves themselves. That's why it's not localized and completely resolves when I'm not having a flare up. Furthermore, my nerve conduction studies have not detected any problem.

I believe that exertion is causing some kind of transient physiological change/s in my body that causes my muscles and nerves to become temporarily irritated. This irritation is what is causing me pain.

I'm having a flare up this week and last night was really bad, I felt like I was being burned and electrocuted at the same time. This morning that has passed but my muscles remain very tender and sore.

I'm thinking that the key for me would be to have tests run when I'm flared up. While this may not isolate the cause of the flare up, at least me and the Doctors would know what is happening to my body in this flared up state ie. inflammation etc... I'm realizing that in my case it's probably pretty useless to conduct tests when I'm not experiencing my symptoms.

Btw, I'm wondering if it might be worth a shot to try Prednisone when I'm in flare up mode. Could this drug possibly resolve the flare up?