PN and Post exercise crashes?
 

Hi everyone,I posted a few days back and for a few years prior to that.... After three years of systemic symptoms I was finally diagnosed with a dysimmune neuropathy (distal axonal and demylelinating and possibly sensory neuronopathy). I still have some tests to go trying to pin down exact cause, but for me it is definitely connected to a larger systemic issue.... possibly paraneoplastic, possibly connective tissue, possibly post infectious. (I show "reactivity" to antineural antibodies but not confirmed on western blot (if anyone knows what that means, please let me know why I would show up initially reactive, but ultimately not positive.)).

Anyway, recently, I have become very fibromyalgic (for lack of a better term) post exercise. I can exercise with little pain and for the most part feel strong and have stamina (not full but good enough), but 24-72 hrs later I feel like I have the flu and someone hit me with a baseball bat. Its quite scary and debilitating and im in such pain and feel such deathly malaise that its unreal. Almost like a chronic fatigue syndrome crash I would imagine. Since they suspect this is immune based, its not surprising. However, I just wanted to see if anyone else has the same experience and is it dangerous to keep exercising? As far as I know my CK levels are totally normal so there is no muscle damage....

Thank you for posting this question. I too have had fibromyalgia pain after I exercise but it usually takes itself anywhere 6 hours or so to hit me. When it does hit me then I'm just wiped out completely like I have the flu and my whole body is just going insane feels like. I have tried different types of exercising like walking and swimming. But with light exercises and found that I just can't do those either. It's almost made me afraid to exercise at all.

I'm unable to give you any words of wisdoms as to why or how to fix it as I still don't know how to myself. But I wish you the best of luck and if you find something out I'd be very interested to hear.

Best wishes

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I used acetyl carnitine when I was working out in the gym.

It reduced lactic acid build up in the muscles, and helped fatty acids get burned for energy in the mitochondria. Helps alot with muscle aching pain after exercise.

Start at 500mg a day and see within a week if you have less post-exercise discomforts.

I sometimes have trouble differentiating between normal muscle soreness and pain that has been triggered but I believe I have some similar symptoms after harder workouts...After longer runs sometimes my whole body is sore - example - yesterday I ran 8 miles and today my knees are sore which would be expected but also my wrists and knuckles are sore ... The pain is almost like growing pain they feel bone deep and a very hollow ache deep in the bone. I have had these body wide before. I assume this type of pain would not be expected without PN after a workout?

Since this PN is so new to me, I don't know whats normal and whats not. Its clearly been "in development" for the past three years and until now has eluded all EMGS/NCTs. (well, Oct 2015 showed the tiny start of something). NOw its shown its ugly head, im just wondering why the post exertional pain. Im a little worried that its actually some mitochondrial disorder??? But I imagine that would be exercise intolerance and problems during exercise mainly.

If you are running 8 miles still you are in great shape! Three years ago I was training for a fitness competition, then this junk hit, then I have been slowly decreasing my mileage b/c Im just breaking down. A 5K is where Im at right now and weights.

Yes, body going "insane" - I understand that. I call it deathly maiaise. Like something really really going wrong inside.

Thanks Ms D, I will try that. I also looked up some mito cocktails and see that CoQ2, and L-arginine are also good.

i'm a surfer and still surf every chance i get. but, within an hour of leaving the water, it's like i've been hit with a narcolepsy hammer. no pain. but i'm so tired, i can barely move. so i nap. and then a few hours later, i need another nap. and then a third, around 4:30 or so. i go to sleep around 8 pm and, despite the three naps, have no troubling snoring thru the night.
but, man, the exhaustion is total. daily, i take adderall or nuvigil due to every day tiredness caused (i assume) by CIDP, but after surfing, neither drug will keep me up. nor will taking another dose. nor will any amount of coffee. stick a fork in me, joe, i'm done.
anyway, that's my story, but you'll have to excuse me now, i have to go ...
zzzzz.

This was how mine started out. I couldn't recover anymore from work outs. I did intense interval training 5 days a week. I noticed reps getting less and less and I pushed myself (in denial) until I literally couldn't do a push up. Do you have autonomic symptoms as well?

Well, Healthgirl, I'd never even heard of "autonomic symptoms" before reading your post. I went and looked em up and I do believe I have at least two of them: an elevated heartrate and mucho difficulty catching my breath after even a little exercise. And it's gotten worse in the past month.

I started taking testosterone a month ago. I wonder if they're connected. I think I might stop that stuff, even tho it helps my mood and *may* help with my atrophying muscles.

Crap. Something new to worry about. Double dang!

A number of the symptoms noted here along with a reduced tolerance for exercise can signal amyloidosis or at least make it worthwhile. It might be worth looking at the symptoms and seeing if it's worth exploring with your physician. I have a team looking into it for me. Almost always it's a quickly degenerating illness, so if, say, you've had symptoms for years and/or the progression is rather slow, then you likely don't have amyloidosis, but there are some genetic types that can degenerate more slowly than acquired types, say the TTR, or so my team of physicians have said.