Hello, I just found this site today. I have had PN for approx. 12 yrs, lupus for 25 yrs. dx and treated last 5 yrs, under good control and type 2 diabetes for 2 yrs. very good control. I have had severe pain most of these years and it's subsiding some now but I have no complete numbness. The last few months I've noticed all muscles, both sides below the waist getting smaller and possibly starting in shoulder and yesterday had it confirmed that I have permanent muscle atrophy from PN...no muscle disease. My rheumatologist says he doesn't think it's from my lupus because it's under good control. Also have had EMGs last 2 yrs that show damage. Do any of you have similar atrophy.....what does it mean for the future? Are you in a wheelchair? I see a neurologist who specializes in PN in Dec. I can walk, get up from the floor, walk up stairs but it's noticable to me that I'm much weaker as the years go buy. I think it's progressive can this be stopped??? Thanks for any help, Raina

Have you ever had DNA blood testing for CMT? Does anyone in your family show any kind of symptoms? Perhaps there is something else going on besides Lupus.

Welcome to NeuroTalk Raina.

You've come to the right place with your questions. As you'll find, there are lots of nice people here who will give you support and friendship. Take care and I hope you'll get some pain relief and feel better soon.

Small fiber neuropathy DOES cause myopathy in some people. I have neurogenic myopathy, which simply means the muscle is dying off due to lack of neurons. It is mild, supposedly, but they took such a small hunk, so who knows.

If you are sure you have small fiber, the myopathy should not be a huge issue, unless you get steroids....I recommend not. Steroids cause myopathy. Steroid myopathy, and it is a bear.

You may also want to be checked out for the other myriad of diseases that cause myopathy. The neurowustl site is a good place to start.

With aging there is normally some muscle mass lost.
How old are you? Are you postmenopausal?

This is called sarcopenia and is independent of PN.
http://www.sarcopenia.com/

Surely nerve damage may impact motor functions.

One way to keep this from overtaking you is to do resistance
training. Start slowly, and ask your doctor if you can do this first.

This is a good resource:
http://www.strongwomen.com/
Tufts has put out many videos. I found them in my library.
Dr. Nelson is an excellent speaker and covers this subject well.
She also has several books.

There are also studies to show that whey protein, is a very
good way to protect your muscles. There have been studies on older patients showing benefit.

I've thought of that but when I read the symptoms it doesn't quite fit. I have not had the DNA test for CMT. No one in my family has the disease or symptoms. Raina

The neurologist does think I have small fiber neuropathy and also my EMG( the needle and electric test) was abnormal last year. I am on 6mg prednisone but my rheumatologist didn't think that was causing the muscle atrophy. My muscle enzymes are normal. I've got to learn all the terminology yet so forgive me. I don't understand what the neurowustl site is, can you help me find it? thanks Raina

I was on estrogen therapy when I had the biopsy done, and was only a few years out from triathloning. They did a biopsy on me, and found 'neurogenic myopathy'. It was the slow twitch type fibers. I was told that the PN could cause this.

How are you doing now??

Raina,

I have autoimmune autonomic neuropathy, (ganglionopathy) as well as sensory neuropathy, so my case is hard to compare. I am not doing all that well right now, but, I am going thru some pain med changes, like completely off, so we can get an idea if this IVIG is working. It is going to be a month or so before I get to baseline....again....(been there, done that a few times before) I was doing pretty well on the IVIG and then my body seemed to reject pain meds and all systems started to crash. Can't live on them, can't live without them...ugh

Neuro.wustl, is a site that quickly gives you info on diseases, it is http://neuro.wustl.edu I hope that is the correct site, I got a new computer and it seems not to copy addresses for me to paste. Hmm

Answers take a long time.