Just Diagnosed with Small Fiber Neuropathy

Posted by boo55 @boo55, Feb 1, 2019

Hi . I am a bit scared here. Had positive skin biopsy for small fiber. What tests will the Neuro ask for to find causation? Was diagnosed prediabetic in Fall. My Dad had similar issues and eventually lost a toe. Always felt he was walking ” on fire “. My feet have similar issues. This is just one big Ick. Boo

Liked by teetee7, jasont, Mrs. H

@johnbishop

@swartzki, In a previous post you mentioned you had been taking alpha lipoic acid and have not had burning in your arms. Are you still taking the ALA?

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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.

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@demonsleeve

Hi. I've had SFN poly peripheral. Don't be scared.
Getting the underlying cause will help treatment. Think of this, I don't know what causes mine so I just have to take heavy meds.
Plus being prediabetic isn't diabetes. And now you can try to reverse it.
I have the positive skin test and a bunch of others.
Trust your neuropathy doctors. Research as you go and ask your doctor every question you came to this board to ask. Doctors like patients engaged in their care. Don't give up.

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

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@swartzki

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.

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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/

Liked by Lisa Lucier

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@johnbishop

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/

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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.

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@johnbishop

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/

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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.

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@swartzki

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.

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

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@swartzki

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.

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@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.

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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.

Liked by Lisa Lucier

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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.

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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!🍹

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does anyone here use vitamin supplements to help with their small fiber neuropathy? i now that @johnbishop does, but wanted to see what ohr options are available. thank you

Liked by rwinney

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@albiet

does anyone here use vitamin supplements to help with their small fiber neuropathy? i now that @johnbishop does, but wanted to see what ohr options are available. thank you

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@albeit I go along with John I've used vit-min all my life I also use a pain relief but it is homeopathic works well

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@albiet

does anyone here use vitamin supplements to help with their small fiber neuropathy? i now that @johnbishop does, but wanted to see what ohr options are available. thank you

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Hi @albiet, I do. I loosely follow the Protocol that John uses and have for 6 months. It's no obvious game changer for me however, I do believe it's providing benefit. My neurologist recommended R Alpha Lipoic Acid and Acetyl L Carnatine and B12, as I was deficient (SFPN cause). I took magnesium already to help with constipation from opiods and CoQ10 to help with migraine. I researched each element of the Protocol to better understand each pills purpose. It all made sense and nothing seemed harmful overall so, I jumped on board.

The reason I say I follow it loosely is because: 1. I don't do liquids so, I substitute pills
2. have dropped the yeast pill bc I don't like it and am prone to high yeast

I also try and take liquid turmeric (only liquid I will do) daily.

Good luck in your exploration.
Rachel

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@rwinney thank you. do you use the same amount levels that they use in the protocol? do you get your vitamins rom them or yourslf? and how are you feeling

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@albiet

@rwinney thank you. do you use the same amount levels that they use in the protocol? do you get your vitamins rom them or yourslf? and how are you feeling

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@albiet Yes, same amount levels except fish oil and hemp oil are slightly less potent in pill form than liquid. I do stick with recommended products but order them myself from Amazon. I'm making due with this disease and realizing no pill or supplement in the world is going to miraculously give me back what I used to have with my body.

You know the expression "it takes a village to raise a child"…well, my opinion is the same for SFPN. It takes supplements, healthy diet, excercise/stretching, meditation, drugs, heat/ice, mindfulness, pacing and redirecting expectations.

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