pain and spasms from neuropathy

[trc1962]

Hi, suffering through a neuropathic flare and turning to you all for some help. I sometimes get just the painful burning stuff that doesn't cause spasms and weakness and sometimes I get the spasms and weakness too, and that's what I have now. Prednisone is a big help, the symptoms just stop at 15 mg but my rheumatologist says 5 mg which means I have the pain and spasticity, especially in my left side, even in my face. I am taking gabapentin 200 mg many times a day but need suggestions for other pain relief help. I am looking for a neurologist this time for sure, not anyone really in my area that treats sjogrens, so stuck with my rheumatologist. Thanks for suggestions, this isn't fun!

[meirish]

I have neuropathy in my hands and arms but no spasms. I cant relate to all your symptoms, but I think you would benefit from a neurologist. If it was me I would find one as soon as possible even if it was a longer drive and even a stay overnight in hopefully one of the cheaper motels.

Reason being is that you are suffering and will probably continue to suffer. It is possible that all these neuro symptoms could be another neurological disease that has nothing to do with autoimmune. There are so many neuro diseases with similar symptoms that it can take time to find a diagnosis. Once you get a diagnosis and an plan of treatment chances are you will not have so much pain. Also, one treatment is started often the number of doctors visits can be decreased and ones primary or rheumatologist can work with the neurologist. Good luck and keep us posted on how you are doing. meirish

[Carolina]

I have Profound Peripheral Neuropathy and am completely disabled.  I have leg braces and use a power chair.

These are the medications that have helped:
Aleve (can't take anymore because of gastric issues)

Cymbalta (miracle for me, but after 6 years I developed side effects and stopped)

Gabapentin. I take 3600 mg a DAY and have for years.  It allows me to stay relatively sane.

Prednisone or methylprednisolone (Medrol) take away pain, but the price in damage to my body has been horrific.  I took high dose for two years for the Polymyalgia Rheumatica.  I'm down to 5 mg day, but the damage seems permanent.

I have neuropathy in:  My feet, legs and it's moving up my thighs. My skin (small fiber neuropathy, sometimes called "skin on fire" disease. My bladder, my gastrointestinal system.  Sjogren's also damages tendons and ligaments and I have had surgery to repair a tendon in my hand. My Sjogren's is worst at night but I have found that keeping the humidity in my bedroom at 60% helps.

I have an immunologist, neurologist, rheumatologist, cardiologist, uro-gynecologist, pain specialist, gastroenterologist, podiatrist, dermatologist, hand surgeon, back surgeon, and more.  My therapist, whom I see via Telemedicine every week is my salvation.

My Immunologist diagnosed that my many neuropathies are the result of my Immune System attacking my the organs and systems of my body.  And it is progressing, unfortunately.

Ironically I am also Immune Deficient and have to have an infusion every 4 weeks of 50 grams if IgG.  That keeps me from getting most illnesses going around, but I have to do this for life (since 2013).

Primary immune deficiency is very uncommon, 1 in 100,000.  So I have hit the 'jackpot' in every possible way with my Immune System.

Take care trc1962.  Keep us posted.

Elaine (aka Carolina)