[ellsac]

Hello

I have idiopathic small fiber neuropathy. NVC and EMG back in January were completely clean.

It seems as though I am losing muscle mass, though...or maybe I am imagining it. It can be hard to tell the difference sometimes haha. My muscles wear themselves out much faster, and I feel like I have lost tone. I don't necessarily think I am less active...but perhaps I am.

I also get a good amount of twitching and some deeper muscle pain at times...at least it feels deeper. I am seeing my neuro again in a few weeks for a follow up. Does anyone get these issues with small fiber only? I am scared that my motor nerves are now being affected.

I do of course have other problems...autoimmune Addison's disease and hypothyroidism which are both well managed (as much as they can be anyway).

My diet is as far as I know very good. I eat tons of veggies, some fruit, seafood, whey protein, some whole grains.

[Ragtop262]

I had a time about 6 months ago where I had the same concerns as you. My symptoms started as stiffness/twitching/cramping. I started to get worried about things, started to research on the internet. Naturally, you initially find all the really terrible diseases that in any way match your symptoms. Then I started to lose weight and it seemed like I was losing muscle mass as well.

Once I thought I was losing muscle mass, I got really concerned. Then I started to feel weak, and had days I felt like I could barely climb the stairs.

Eventually, testing ruled out all the really nasty stuff. Over a period of weeks my strength came back, and medications controlled the twitching and cramping. Unfortunately, just when I thought everything was OK, the burning feet started........

The bottom line is that I am now convinced that I really never lost muscle mass, I was just losing weight because I was so worried about my condition and I wasn't eating right. Since then, I have taken measurements of my major muscles and recorded them. If I start to get concerned about muscle loss, I just measure and compare to my previous results.

I'm sure this is not exactly like your case. But, I do believe that any person who starts to closely examine their body will start to find things that they never noticed before or don't look right. And, that can kick off anxiety that just makes it worse.

[canagirl]

Eventually, testing ruled out all the really nasty stuff. Over a period of weeks my strength came back, and medications controlled the twitching and cramping. Unfortunately, just when I thought everything was OK, the burning feet started........


I'm sure this is not exactly like your case. But, I do believe that any person who starts to closely examine their body will start to find things that they never noticed before or don't look right. And, that can kick off anxiety that just makes it worse.[/QUOTE]

Which medications controlled your twitching ?

[Ragtop262]

Originally Posted by canagirl

Eventually, testing ruled out all the really nasty stuff. Over a period of weeks my strength came back, and medications controlled the twitching and cramping. Unfortunately, just when I thought everything was OK, the burning feet started........


I'm sure this is not exactly like your case. But, I do believe that any person who starts to closely examine their body will start to find things that they never noticed before or don't look right. And, that can kick off anxiety that just makes it worse.

Which medications controlled your twitching ?[/QUOTE]

Gabapentin - 1800 mg/day, helps my twitching and cramping considerably. Although my lower legs are acting up today - not sure why.

[zkrp01]

Originally Posted by ellsac

Hello

I have idiopathic small fiber neuropathy. NVC and EMG back in January were completely clean.

It seems as though I am losing muscle mass, though...or maybe I am imagining it. It can be hard to tell the difference sometimes haha. My muscles wear themselves out much faster, and I feel like I have lost tone. I don't necessarily think I am less active...but perhaps I am.

I also get a good amount of twitching and some deeper muscle pain at times...at least it feels deeper. I am seeing my neuro again in a few weeks for a follow up. Does anyone get these issues with small fiber only? I am scared that my motor nerves are now being affected.

I do of course have other problems...autoimmune Addison's disease and hypothyroidism which are both well managed (as much as they can be anyway).

My diet is as far as I know very good. I eat tons of veggies, some fruit, seafood, whey protein, some whole grains.

I, like Ragtop, lost weight along with the wasting. If you are not losing weight, don't worry yourself until your Neuro appt and then have a discussion. Good Luck, Ken in Texas.

[Tunaboy]

I haven't noticed any muscle loss due to pn, although I did lose some all over because of diet and being away from the gym for a couple months. My calves look the same. Same ol chicken legs

[KnowNothingJon]

I have rigidity, spasms, fasticulations, charley horses. My legs are the pits, as they feel, but apparently look sharp, as a coworker was modeling me at the end of the day...yeah.

I think any wasting is mitigated by bullish insistance to walk a mile each way to and from my car.Most days it is more shuffle or plod, but I do both with as much grace as each word carries.

[bluesfan]

Hi ellsac

I've started to get some new muscle atrophy in localized areas (eg thenar muscle left hand). Still waiting for definitive PN diagnosis. Been trying to find specific information that autoimmune Addison's Disease (AD) can be a cause of PN or SFN but to date no luck. The lack of information might be because AD is relatively rare. However I suspect it could be a cause in the same way that other autoimmune diseases can cause PN: eg Sjogrens, RA, Guillan Barre etc.

It's one of the questions I'll be asking the neurologist later today (Yes! my appt. finally came thru.) I'll also ask him about muscle loss due to PN/SFN. I'll get back to you with an answer hopefully.

Muscle loss is not uncommon in autoimmune diseases anyway (and typical with AD). Prior to diagnosis I had almost complete muscle loss to the point that I was unable to stand up long enough to brush my teeth! Regaining muscle use is a slow process and I'm still not back to where I was originally.

We can only do what we can to manage the symptoms and trying to be consistent with diet, exercise, medications and learning are all part of the journey.

[Healthgirl]

Originally Posted by ellsac

Hello

I have idiopathic small fiber neuropathy. NVC and EMG back in January were completely clean.

It seems as though I am losing muscle mass, though...or maybe I am imagining it. It can be hard to tell the difference sometimes haha. My muscles wear themselves out much faster, and I feel like I have lost tone. I don't necessarily think I am less active...but perhaps I am.

I also get a good amount of twitching and some deeper muscle pain at times...at least it feels deeper. I am seeing my neuro again in a few weeks for a follow up. Does anyone get these issues with small fiber only? I am scared that my motor nerves are now being affected.

I do of course have other problems...autoimmune Addison's disease and hypothyroidism which are both well managed (as much as they can be anyway).

My diet is as far as I know very good. I eat tons of veggies, some fruit, seafood, whey protein, some whole grains.

Hi ellsac,
I have exactly what you are describing. Very deep, lots of twitching, ridiculous fatigue... I mentioned it to the doc. He said connective tissue/autoimmune/small fiber is the spectrum that I'm in. Maybe he will redo your EMG.

[ellsac]

Originally Posted by Healthgirl

Hi ellsac,
I have exactly what you are describing. Very deep, lots of twitching, ridiculous fatigue... I mentioned it to the doc. He said connective tissue/autoimmune/small fiber is the spectrum that I'm in. Maybe he will redo your EMG.

Thanks, Healthgirl.

And thanks everyone else for your replies.

I'll see my doc soon and ask his advice-but you're probably right, HG. I guess I just get nervous that my motor nerves are going to get affected-maybe he'll want to do the EMG over. We'll see.

Thanks!