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Its just been two weeks, could this be Small fiber neuropathy?
Hi all. I am new to the group and have on my journey of getting confirmation of SFN. All started tweeks ago. Started with mild pins and needles on hands and feet and lasted for 5 days. The next day my feet to knees and fingers to forearms felt sensitive to temperature and felt sunburned. The skin sensitivity has now spread to random and more places with intermittent burning. My hands and feet get cold and wet real quick now, I wake up with full on adrenaline with what feels like trembling, light winded quicker, noticeably dry eyes/mouth sometimes, my feet and hands more like ache/throb, today a pinky has been a little bit more stubburn. I saw a neuro last week and he said its nothing of a concern and its rare that neuropathy progresses that fast. Has everyone else had that fast of a progression in relation to your neuropathy? I'm getting a second opinion with Mayo in Arizona in a couple weeks.
A little background, January I had some bouts of non-rotational vertigo and developed tinnitus and both have since gone away. ENT ruled it as possible eustachian tube dysfunction. The meds I took for that were, sinus flushes, nasal spray (flonase), meclizine, and ativan. My first neurologist stated that these meds would not have caused what I am feeling now.
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I sometimes wonder if mine started in my early 40's. I've had pain in my feet for that long, and have sought help from massage therapists, chiropractors, and podiatrists - to no avail. It was always difficult to describe my pain. Everyone wanted me to point to *something*, when in reality my feet just hurt everywhere. But the burning didn't start until about a year ago, and initially I just accepted it as yet another type of foot pain. But then it began waking me up at night, and the pain was bad enough that I was keeping T1's on the bedside table so I could take them and be able to go back to sleep. I think if the burning had not become part of the pain, I never would have been sent for the nerve conduction tests.
I was also on a low dose of Gabapentin (300 mg/day) until about a month ago when I experienced a high level of stress, and my pain virtually exploded. I have increased my dosage and am now taking 500 mg/day; hoping this will do the trick for a long time to come.
Can you tell me about (describe) your foot and leg pain? Is it an ache? Sharp pains?
It’s varied. I find in my feet it’s more burning. Especially when I’m wearing tighter shoes and or sitting for longer periods of time. The pain I feel more in the lower calf’s It’s like a cramping , tightness like I have to stretch my calf’s. Sometimes in the morning when it’s cold I feel some sharper pains in lower calf’s. I also get the same tightness feeling in my hamstrings. Not sure if that’s more from sitting at my desk but they feel tight and crampy at times
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1 Reaction@iceblue, SFN is undoubtedly a mind-boggling disease. I also find that stress can worsen the pain but after increasing my dosage for 1-2 days I always go back to my lower dose and that has worked for me. (just FYI) Also, what are t1’s?
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1 ReactionCouldn’t agree more. I find when I’m stressed out it flares up the worst
@italapino, so sorry to hear of your recent experience. I also experienced vertigo and dizziness (not the same thing) and tinnitus fir 2 yrs. I saw an excellent specialist during that period who was a life saver. The vertigo has not returned but I never connected it to neuropathy. The meclezine did not help. My SFN also came on overnight, is considered idiopathic by my neuro; I started taking R-Ala, magnesium, Bcomplex, Vit. D, and biotin every day plus I exercise, treadmill, and do calf stretches before bed, all of which I think help me. My symptoms have remained pretty stable for 2 years. One can only hope! I hope you get some answers and wish you good luck.
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3 Reactions@mdemo - Yes - tight shoes and sitting can also be problematic for me. Most of the pain in my feet is a deep ache and stiffness. For many years I only felt it in the morning, but over time it became ongoing. Interestingly enough, I got up this morning and was already dressed and on my way downstairs before I realized I had no pain and no stiffness in my feet - so 500 mg is working!
The reason I ask about the type of pain is that I *thought* SFN would only cause superficial pain (e.g. burning at the skin level) - but much of the pain I feel seems to be much deeper than that... Sounds like I'm not alone in feeling a deeper pain.
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1 Reaction@helennicola - Oh - so good to know! I will stay where I am for a few days and then taper down and see if the pain is still controlled!
I assume that T1's are either not available in the USA or are sold under a different name - but here in Canada they are an over-the-counter drug (must ask the Pharmacist for them) that contains Tylenol and a small amount of Codeine. I've always assumed they have 1/3 the amount of codeine as T3's - but I honestly do not know. Taking 2 almost always handles my pain. I just know that none of the regular meds (Tylenol, Ibuprofen, Naproxen) touch my pain. One drug I've tried and hate is Tramadol. My (previous) doctor prescribed some for me a number of years ago, and after taking 2 or 3 tablets I took the entire bottle back to the pharmacy. It didn't really touch my pain, but it made me incredibly nauseated. I prefer T3's when I'm in bad pain, but the opioid crisis has ensured that those are almost impossible to obtain - especially now that I have a new doctor who will need to be convinced that I am not a drug addict.
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1 ReactionSounds like t-1’s are the same as Vicodin and hydrocodone here. Tramadol has the same effect on me. I had a dr. refuse to give me a particular sleeping pill years ago (I had requested a small dose/amount prescription to try during a bout of insomnia) and he insisted on Ambien which I did not care to try due to many friends’ horror stories. I changed dr.s.
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2 Reactions@helennicola, @iceblue, Hello you two. Interesting discussion you have going on. I am just slipping in to wish you the most joyous of Holidays. Keep searching. We are all so unique that we seldom respond the same way to medications and treatments.
I am in month 3 of letting go of Nortriptoline. A few rough spots... then some stabilization, then more issues with the next 10 mg drop. Do either of you use an anti-depressant?
Helen, I heard back from P and B about the Balm. They do suggest that we experiment with increasing the THC. Just keep a journal and record how much you used each time. We also have a member who uses a 100% THC tincture for sleep. I have now moved up to 1:1 CBD/ THC. Our bodies seem to adapt to increased dosages over time and then we need more.
Have fun with family and friends. Stay in touch.
May you be calm and at ease. Chris
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1 ReactionHi Chris, thank-you for your lovely warm wishes , I also wish you and your loved ones a wonderful holiday season. To answer your question, no I do not take any anti-depressant, I do have 2 - cymbalta and nortriptylene which were prescribed but I have never taken, I wanted to try the supplements, exercise etc. first to see if they could be helpful. I had taken Zoloft many yrs. ago which helped with some anxiety and depression I was going through but also resulted in some side effects which made me discontinue. I was experiencing anxiety and mild depression with the SFN which I believed was caused by the gabapentin. (?) I added a B complex to my regimen and those symptoms have gone away. I only purchased the 3/1 P&B balm and the really strong (!) 1/300 tincture which I hope to never have to use. I am still only relying on the gabapentin at night and purchased the CBD’s while in Ca. for possible future use. Hope your tapering off the Nortriptylene continues to go well for you. Helen
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