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Small fiber neuropathy and muscle tightness

Posted by imsaed @imsaed, Feb 28, 2021

Hello everyone,

Anyone have a SFN issue whereby they get muscle tightness which does not subside? Specific area of trapezius and neck muscles, but impact entire body including legs which can impact balance and gait at times. Done many test at Mayo with a conclusion of post viral syndrome and neurology department was almost completely useless except to give you a benzo script. I’ve done all MRIs, CT and Pet scans, no suspected issues with MS or ALS type issues. All started over time when I fell at home and broke my wrist which did not require surgery.

Sound familiar to anyone and any advice?

God bless,
Ed

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delia74 | @delia74 | Jan 25, 2024
In reply to @julbpat "Sure, I will share the results of my visit. I saw this kind doctor in person..." + (show)
Profile picture for julbpat @julbpat

Sure, I will share the results of my visit. I saw this kind doctor in person once after my SFN diagnosis was confirmed. That was 1.5 years ago. We had a telemedicine visit after that. I decided to schedule another in- person visit, even though it’s two hours away. I want to see what he thinks about my gait and overall condition.

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How is small fiber neuropathy "tested"? Does one see primary care physician or a neurologist?

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julbpat | @julbpat | Jan 25, 2024
In reply to @delia74 "How is small fiber neuropathy "tested"? Does one see primary care physician or a neurologist?" + (show)
Profile picture for delia74 @delia74

How is small fiber neuropathy "tested"? Does one see primary care physician or a neurologist?

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A neurologist. The first test is a nerve conduction study. If this points to SFN, then skin punch biopsies ( on the outer leg) are done to look at the nerves.

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ebero | @ebero | Jan 26, 2024
In reply to @robindancer5678 "I just happened upon this thread and it has been so helpful. I feel like a..." + (show)
Profile picture for robindancer5678 @robindancer5678

I just happened upon this thread and it has been so helpful. I feel like a medical mystery sometimes. I too have had pins and needles in my left leg, now moving to my right leg. Often I have muscle tightness in all extremities when I try to get out of bed in the morning - when I start to walk it feels like I'm the Tin Man from the Wizard of Oz. Thankfully once I'm up and moving it gets better. At times I get chest tightness and difficulty breathing which is scary but I check my pulse ox, which is always normal which helps me not to panic. I've had a very thorough workup from eight or nine specialists including a Johns Hopkins Neurologist. At one point the diagnosis was SFPN, non-length dependent, but the skin biopsies were negative. We have also been puzzled because my symptoms vary markedly. In June my balance was bad and I needed a hiking pole to walk, had vertigo and chest palpitations, by November those symptoms were gone, then in mid-December I started again with the muscle tightness/spasms and burning at night that has made me feel like I'm being electrocuted. My neurologist thinks that it could be a post-viral reaction to COVID (in 2021) or a reaction to the Moderna COVID vaccine. I had Pfizer vaccines three or four times without difficulty, then I had two Moderna vaccines and this whole nightmare started. Or his other theory (also the opinion of the allergist) is that COVID kicked my immune system into overdrive which exacerbated my reaction to the Moderna vaccine. My immune system is so wacky now that I can't even tolerate vitamin supplements (riboflavin, magnesium, multi-vitamin, calcium send me out of my mind with itching/burning at night) and I can't tolerate sulfites and preservatives in food. So - long story short - it's helpful to read other people's experiences so I know I'm not crazy. Thanks everyone for posting!

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Greetings, Robin,
I was recently diagnosed with SFN. My GP recommended that I try the Autoimmune Protocol (AIP) diet. https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet, which I've followed for the past 60 days.
I've found that sugar and caffeine really affect my nerve pain. Without sugar and caffeine, I have mild numbness and buzzing in toes and fingers. With sugar (and, unfortunately, caffeine) I have crazy burning in feet and strong buzzing in hands, plus pinpricks in arms and legs. It's a pretty dramatic difference, so I've tried it OFF and ON several times in the past two weeks to test. No sugar and no caffeine is (for me) the way to go. You might want to try it and see if eliminating some element of your diet (could be a different food than mine) helps reduce your symptoms. Good luck!

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delia74 | @delia74 | Jan 27, 2024
In reply to @julbpat "A neurologist. The first test is a nerve conduction study. If this points to SFN, then..." + (show)
Profile picture for julbpat @julbpat

A neurologist. The first test is a nerve conduction study. If this points to SFN, then skin punch biopsies ( on the outer leg) are done to look at the nerves.

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Thanks for replying.

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cindylou87 | @cindylou87 | Feb 2 3:12pm

Hello
This is cinthia bates am type 1 diabetes and also muscular weakness muscle spasms and also tingling feeling bottom of my feet been going to doctors for so much testing still can’t find anything what’s going on with me going to an skin biopsy this week I been falling like 4 times already

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suetex | @suetex | Feb 3 6:00pm

If you are having biopsies done may we assume they are for Small Fiber Neuropathy? The balance problem (I'm told) is a large fiber effect that means you've had SFN awhile and it has effected the large fibers. These are all part of your autonomic nervous system.

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rhonda1965 | @rhonda1965 | Oct 8 11:23pm

Yes! The nerves in the spine are damaged and causes pain in those areas. Have you been diagnosed with SFN? Is it Length Dependent or Non Length Dependent? Did you have a skin biopsy to confirm SFN? I’m asking all this because I’ve been sick almost 3 yrs and only found out I have NLD SFN 6 months ago. Now I’m trying to get a dr who will dig deeper to find out the cause so I can get treatment.

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rhonda1965 | @rhonda1965 | Oct 8 11:25pm
In reply to @delia74 "How is small fiber neuropathy "tested"? Does one see primary care physician or a neurologist?" + (show)
Profile picture for delia74 @delia74

How is small fiber neuropathy "tested"? Does one see primary care physician or a neurologist?

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@delia74 you’ll need to find a Dr that will do a skin biopsy to confirm SFN. Rheumatologist or neurologist

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rhonda1965 | @rhonda1965 | Oct 8 11:27pm
In reply to @julbpat "A neurologist. The first test is a nerve conduction study. If this points to SFN, then..." + (show)
Profile picture for julbpat @julbpat

A neurologist. The first test is a nerve conduction study. If this points to SFN, then skin punch biopsies ( on the outer leg) are done to look at the nerves.

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@julbpat EMG nerve conduction study doesn’t show SFN only LFN. I had that done it was normal but skin biopsy confirmed I have it.

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rhonda1965 | @rhonda1965 | Oct 8 11:29pm
In reply to @suetex "If you are having biopsies done may we assume they are for Small Fiber Neuropathy? The..." + (show)
Profile picture for suetex @suetex

If you are having biopsies done may we assume they are for Small Fiber Neuropathy? The balance problem (I'm told) is a large fiber effect that means you've had SFN awhile and it has effected the large fibers. These are all part of your autonomic nervous system.

Jump to this post

@suetex yes you are correct

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