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Sunburn?
Seven months ago, suddenly and violently, my skin began to hurt as though it were badly sunburned. I don’t go out in the sun (melanoma 22 yrs ago).
Dermatologist informed me it was not a skin issue. Primary care Dr. Sent me to a Neuro Doc.
Five months of pain, then Dr. Neuro tells me I have small fiber neuropathy, likely permanent, though some cases have lasted only a couple of years. He gave me pregabalin, which has relieved 75-90% of the pain, but leaves me feeling drowsy and I fatigue easily.
Another doctor (friend of mine) heard that Naltrexone and Lion’s Mane have been helpful to others with similar pain.
Last week, desiring to be clear headed again, skipped a pregabalin dose and the pain came roaring back. So bad.
I would love your recommendations for treatment, tolerance, and how to find acceptance that this is my new normal.
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Hello @notasunburn, Welcome to Connect. Burning pain can be one of the symptoms of neuropathy. You mentioned the pain coming on suddenly. Are the burning sensations all over the body or just certain parts of the body? Did the do a skin punch biopsy or other tests to diagnose the small fiber neuropathy?
The burning pain is all over; head to toe, finger tip to finger tip.
Dr. Neuro decided not to bother with a biopsy because the treatment plan would have been the same regardless of the test results. That’s what he said.
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1 ReactionYou might find these other discussions helpful also:
-- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/
-- Small Fiber Neuropathy burning?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-burning/
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
One of the things that has helped me was to learn as much as I can about neuropathy, it's symptoms and available treatments. Two sites that I've found really useful:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
The Foundation for Peripheral Neuropathy has a good list of Complementary and Alternative Treatments that you may find helpful -- https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf
I will investigate them all. I’m committed to becoming a student of neuropathy now.
Thank you for your guidance.
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2 ReactionsI had the same sensation. Terrible burning in upper arms, like a 3rd degree sunburn. I had already been having burning/numbness in hands. Only numbness in feet, no pain. I'm taking 600 mg x4/day gabapentin and 40mg x 2/day neurotryptiline. I have neuro hands/feet, but upper arm pain was quite bad. I get 70% pain relief. Hope that helps.
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2 ReactionsDo you have any drowsiness from the meds?
Not so much drowsiness, I have a bit of short term memory loss. I'm hoping to up my neurotriptiline to 100mg (50 x 2/day), and decrease the gabapentin. I've was in healthcare for 30 years, and with any drug, there are always side affects. When clinical trials are done on any one drug, each individual side affect is recorded. (So if one person in the whole world of that study got a headache, they have to record it). That's why drugs come with such a lengthy list of side effects, it does not mean they are common. You have to try different combinations to see what works for you.
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1 ReactionHi, thanks for mentioning pregabalin. The gabapentin that I take 2700mg does not help much. I will speak to my neurologist about changing. In fact, everyone should see this site https://www.pharmacytimes.com/view/how-gabapentin-differs-from-pregabalin. Seems that you can easily swap meds without a problem and they even show corresponding dosages. Thank you and I wish you a speedy recovery or a good medicine to help.
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1 ReactionAs I read through the experiences of folks on this Connect site, I see a few references to diet but have yet to find anything definitive. Has anyone found a great resource that connects diet with neuropathy symptoms?
I recently read a phrase that is new to me, “Neuro excitable foods.” I’ll begins searching in this phrase, but I would love to hear your thoughts and know your resources. Thank you.
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1 ReactionI have wondered the same! There are a lot of wonderful, experienced folks here who have offered so many great suggestions, and all clearly talk about finding what works best for you. They honestly know more than doctors because they live it! I’ve tried a lot of suggestions and found a lot of benefits, but sometimes side effects for me.
I talked to my PCP as I just get overwhelmed by diet and vitamin choices, especially since Neuropathy isn’t my only health complication. I have to also figure what’s best for health issues re: liver, heart, and my cancer remission, so finding right mix is tricky. So, we’ve set up an appointment with the Integrative Medicine Group. I’ll say the title of it sounds good! My goal or hope is that they look at my TOTAL health picture and guide me with the diet and supplement choices I’ve been making on my own research, and help steer me away from offsetting the needs of other body functions. I understand they have holistic therapies and approaches that may be helpful as well. First time at it, in 2 weeks, but I’m willing to try anything to get the best balance for best life!
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