Anyone else ? It's hard because I can't be on my feet as much as I'd like to, and walking too much puts me in a flare. It makes life really difficult AGH

i have large fiber sensory motor axonal peripheral neutopathy. Activity such as walking or standing becomes very painful very quickly. My feet and legs also become fatigued and heavy very quickly. For my hands and arms, they become fatigued quickly with repetitive motions or holding my arms above shoulder level. I have had PN for 15 years now. What you are describing is pretty common to PN sufferers n my experience.

I get all of the above as mentioned as well while I am diagnosed with SFN. However I become fatigue when I get those pain and even sometimes without the pain I feel somehow fatigue and also my voice goes low or I can not talk clearly. overall my energy levels goes low. Are these also signs of SFN? or there is another issue here such as mitrochondria disese please?
I noticed when low energy eating some food, protein somehow helps?

any one knows Doctor Ricardo Roda? someone mentioned him. He is in baltimore
Thanks

One of my first symptoms was that my muscles slowly stopped recovering after my intense work outs. I noticed that they started losing their tone and I became unable to complete as many reps as I had been doing for years. Along with this was a good amount of numbness and tingling. Then came the dysautonomia.
I became unable to exercise due to horrific pain and muscle spasms 2 years ago and have full body sfpn now with some sort of connective tissue disease. I try to exercise and because of the pain and autonomic problems, it is difficult. Then my whole body seems to be sent into a flare with muscle, ligament, and nerve pain. It's like exercising causes my body to actually become injured. The only thing I can do that helps and doesn't harm me is extremely gentle stretching. It is very upsetting and frustrating not to be able to even go for a walk with out terrible consequences.

My pain is different. deep pain and ache, twisting and turning, upon walkin, standing or any repetitive activity on foot, calves, back and arm follow by fatigue.
No tingling or numbness at all. I am trying to determine if this is SFN or another disease such as Mitrochondria. Anyone can kindly advise please?
Thanks

i saw dr. roda about 2 years ago when he was @ nyu-langone.

Was Dr Roda helpful? did he do or anything for you?
I just travelled from NY to baltimore to see him.

Thanks

are you @ JH right now? dr. roda was mentored by dr. ahmet hoke who is the chief of the PN service @ johns hopkins.

i too went from ny to jh where i saw dr. hoke who i liked very much. dr. hoke referred me to dr. roda who felt that my pn was primarily a function of diabetes & that better blood glucose control would help. he was spot on!

how did you hear about dr. r?

I was just telling another NT'er this morning how Frustrated I am having to be at home all...the....time !

Walking has been my problem since the beginning (3 years ago). Recently I'm dealing with my feet swelling on the bottom.

I keep thinking it will become easier to deal with but so far it hasn't.

I totally get it and thanks for posting !

Debi from Georgia