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Old 02-13-2020, 09:49 AM #1
10paindaily 10paindaily is offline
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Default DEBILITATING Peripheral Neuropathy- Sharp Deep Aching Muscle & Nerve Pain

Hello. I am new here. I am searching for others with the same pain/issues as I am currently going through. I was recently diagnosed with idiopathic small fiber neuropathy through a muscle biopsy in my calf. I have had symptoms ranging from weakness to temporary partial "paralysis," chest pain while breathing, migraines, short term memory problems, and PAIN actually since around 2014 when I was MISdiagnosed with MS (a small lesion on the spine at T7-T8). Since the symptoms progressed and no more lesions were found, that diagnosis was recently retracted, and through many doctors and recently a brilliant neurologist at Chapel Hill, I was diagnosed with this unmanageable painful disorder. Since August of 2019, the pain has gotten MUCH WORSE. It's NOT burning pain like many I am reading on here, but deep, sharp, aching, pulling, breaking pain. It travels around, but lately has been in my arms and more often in just the right arm. I sometimes have swelling in my arms and hands, as well as feet. I wake up some mornings so stiff that I cannot move. I have had EVERY rheumatological test possible (and more than once!), as well as ALL neurologic (even genetic) testing... the muscle biopsy finally revealed SLIGHT nerve damage, but enough apparently to dx IDIOPATHIC small fiber peripheral neuropathy. I have tried gabapentin, duloxetine, lyrica, tegretol, ketamine, oxycontin, oxycodone, morphine, buprenorphine, and more but NOTHING works for the pain! If you are suffering from these same symptoms, PLEASE REPLY. I REALLY need to talk to others dealing with this.
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Old 02-13-2020, 12:28 PM #2
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Hi 10paindaily

Welcome to NeuroTalk .

I am sorry to read about your idiopathic SFN; it sounds like the neurologists have done some very thorough investigations.

I hope that other members will be able to offer you support and good ideas.

All the best.
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Old 02-13-2020, 01:52 PM #3
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have you ever had a pet scan....that lesion that was found makes me think its possible that you have neurosarcoidosis. do you feel better when you take steroids like prednisone?
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Old 02-13-2020, 02:10 PM #4
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OP: Welcome and sorry to hear your story. Please realize that many of the pharma drugs can cause advanced damage to our bodies.

A story about a friend taking quite a few of the drugs you mention, finally got on Grape Seed Extract about 10 yrs ago now and is off MOST drugs. She was told idopathic for years and it was from statin drugs and radiation for her skin cancers on her legs.

I just posted a new thread in the Neuropathy forum on What Works BEST for ME.....
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Most important supplement: grape seed extract
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Old 02-16-2020, 07:13 AM #5
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Yes! Any time they give me steroids I feel great! I will look that up and see if my symptoms are similar... thank you!
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Old 02-16-2020, 01:24 PM #6
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These may or may not fit just mentioning them...
RSD/CRPS
Lyme

Any exposure to chemicals or toxic conditions/environment in the past?

Possible 2 conditions instead of 1?
[ It travels around, but lately has been in my arms and more often in just the right arm. I sometimes have swelling in my arms and hands, as well as feet. ]

Do the arm symptoms happen same time as feet?
or separately?
Any relationship to more arm use or certain arm positions?

Sometimes making a list of your symptoms, starting with the worst, and also timeline on another page .. keep them simple & to the point, make a copy for your drs too, it may help..
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Old 02-21-2020, 11:24 PM #7
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Have you tried a combination of gabapentin and nortriptyline?

Gabapentin plus nortriptyline cuts neuropathic pain | News | Pharmaceutical Journal
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