Just Diagnosed with Small Fiber Neuropathy

Yes, I'm still taking the alpha lipoic acid and magnesium that helps with digestion and cramps. I put myself on these. The doctors don't know what caused mine. I suspect alcohol and eating disorders, but my neurologist says no. He says I "never drank enough to do that," and he never wants to hear me mention it again. I quit alcohol well over two years ago, but my symptoms grew much worse about three months later and kept progressing for another year. I did have a major trauma right before the symptoms really cranked up, but nothing on MRI's. So I can't treat a cause because there doesn't seem to be one. I may try the Acetyl L-Carnitine.

Could you tell me how long you have been living with SFN poly peripheral?

You mentioned you had a major trauma right before the symptoms got worse. Are you able to share more about the major trauma?
There is another discussion you may find helpful if you have a compressed or pinched nerve causing your new symptoms.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Horse riding accident. Ruptured spleen, punctured lungs, and fractured ribs. I almost bled out. I was in icu for a week. Still, that couldn’t be causing the autonomic symptoms. The fatigue and hair loss are the absolute worst.

Wow ! I stand corrected. The symptoms listed here do match and I have been told I have a pinched nerve along with the sfn. Thanks, John.

@swartzki I'm wondering if @jenniferhunter may have some more suggestions based on your symptoms from the horse riding accident.

@swartzki Thanks, John @johnbishop for inviting me to this discussion. Hello @swartzki , I am a horseback rider too, and I had spine surgery at Mayo for spinal cord compression in my neck. That resulted from a whiplash years ago in a traffic accident, and not related to horses. I also have thoracic outlet syndrome which causes nerve compression between the rib cage and collar bone, and I have had a lot of nerve testing. Can you tell me more about where your pinched nerve is and how it happened from the horse riding accident, for example how you landed? Did you have a neck injury? I presume you may have had surgery from the trauma of the accident, and that itself can be a cause of nerve compression because of the tight scar tissue that forms along a surgical path. I have some in my neck because of spine surgery and my physical therapist uses myofascial release to loosen the scar tissue. Are you recovered from the trauma physically and have you had any physical therapy or rehab to regain function? One of the ladies that I ride with had a horse riding accident with a rib fracture and she rides now with a vest that automatically inflates if she comes out of the saddle that uses a gas cylinder for instant inflation and it is tethered to the saddle which is how it gets activated in event of a fall.

I landed on my left. Ruptured my spleen and fractured ribs on left. I’m recovered but my autonomic issues( digestion, urinary, swallowing) fatigue, migraines, tmj, vision problems, numbness, and muscle loss all started after the wreck. Skin biopsy showed small fiber neuropathy. I guess one of the scans showed a pinched nerve on the left side. I had no physical therapy. I still ride but I was breaking a 4 year old that day. I don’t do that anymore. I guess my problems result from a combination of causes.

What I have found with my SFN is if I am agitated or nervous it flares all the worst. To a small extent I have found taking lorazepam provides so relief . I also get some relief from staying under a blanket and remain as still as possible drinking green tea and trying to distract myself from the hurt with a good book just started the seven story mountain by Merton also a lot of movies from the 30s 40s 50s on You tube . Wish you all the best.

Yes, a distraction really helps. I’m reading a good mystery story and I don’t think about my pain when I am engrossed in the pages of my book. I’m now about to lie down and rest while watching an old movie and sipping a brandy Alexander. Yum!🍹