Just Diagnosed with Small Fiber Neuropathy

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

@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

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

@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

@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.

I really appreciate your statement about realizing that no pill, or supplement will give you back what you use to have with your body. It's taken me a while to get to that place of acceptance but hadn't verbalized it until I read what you wrote, so thank you

@ruthofanne @rwinney @albiet et al

I've had to work through the discovery and acceptance, with several things going on in my life, that some things are never going away. Even though I would never choose to have multiple neuropathies, achieving acceptance has reduced anxiety for me. I'm freed to explore new activities and to work around my disabilities. I've been putting off a dump run for a long time, but today I put one thing on my to do list - load everything in the pickup. I'm almost done but had to stop for a cooling down and rehydrating. My plan is to get it done today. So, it means taking the middle of the day morphine, but that's okay. That's why my prescription includes a third one. I'm grateful that my scs is working well enough so I can take less ms contin. Imipramine helps, too, and so does being retired.

Aside from prescriptions, I take Vitamins B complex, C, and D. My blood work doesn't indicate the need for any other things, which is fine for me, but I'm glad to know that there are other things available if I should need them.

Jim

have you or anyone on the post had experience with Metanx?

@swartzki What I can imagine from your description is that you could have injured your spine in the fall. Did your head hit the ground? You might have landed on your hips or ribs, and whiplashed your head to the side which would put a force on your neck and unevenly, so one side took a bigger hit. For comparison, my experience with a whiplash was that my car was hit from behind while I had my head turned to the left. This caused me to have more symptoms on the left side, and when that began as a disc herniation and bone spurs, it started on the left central side in the spinal canal and started pushing into my spinal cord. I am a Mayo surgical patient and had successful surgery to correct my old spine injury. Several things you mentioned could also be attributed to a spine injury... the TMJ, urinary issues can be from spinal cord damage or compression, vision problems, muscle loss from nerve compression, numbness. I don't know where you have a pinched nerve on the left, but that would be useful information. A spine problem can sneak up on you even years down the road as it did for me. A spine injury can cause small cracks in the outer fibrous layer of spinal discs, and later, these can open up as a disc dries out. It's a normal aging process that discs dry out and compress in time, but that happens sooner for some and later for others, and then bone spurs and arthritis can form that further compresses nerves.

If you haven't done so, I would encourage you to consult a spine surgeon, and have MRI imaging to look for damage, compressed nerves or spinal cord and spinal alignment. Perhaps there is MRI imaging from your accident, and you may be able to get copies. Some of these symptoms may not be from small fiber neuropathy, and it's easy to dismiss them because you have a diagnosis, but there may be overlapping symptoms from different problems, and a spine injury can easily be missed. If a spine injury is at fault, there may be a fix that can help resolve some of that. With spine injuries, when a disc has ruptured, it creates inflammation, and the body tries to compensate by growing and remodeling the bone to try to stabilize the spine. Over time that process creates a lot of disability by compressing nerves and muscle loss and atrophy is caused when the nerves can't communicate properly with the muscles they serve. That happened to me so slowly that I didn't know until my physical therapist pointed it out. I had lost about 50% of the muscle mass in my arms and shoulders because I had spinal cord compression. I also had issues with urinary retention which is the earlier symptom that can be caused by spinal cord compression and that advances toward incontinence which can become permanent. These are red flags for surgical intervention.

I did have very successful spine surgery that corrected the issues I had. I got a lot of my muscle back that had atrophied. Spine injuries can be very fatiguing, and so is the recovery, and it's baby steps. A physical therapist might be able to help you to and try to assess if you have proper spinal alignment. It may be worth investigating further in case there is treatment that can help. You can also look at our myofascial release discussion for information. My physical therapist does this and it helps me a lot. It can also help break up surgical scar tissue that affects and restricts proper movement. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

The nerve block was very successful in both feet. I was able to walk with very little pain for more than two or three minutes. I walked for 30 minutes grocery shopping and then another 20 minutes when I got home putting them away. I still had pain but it was greatly reduced. The nerve block wore off after a few hours and by that time I was in bed asleep. The next step is for a trial. They attach a simulator to one or both of my feet and see if that has the same effect as the nerve block. We are hoping for a 70% reduction in pain. Not sure how long it will take to get insurance approval.