Small fiber neuropathy and muscle tightness

You are indeed, lucky. I know there can be serious complications if you suddenly stop taking gabapentin. I meant to say I was considering asking my doc if there was something else I could try and then taper down. I do appreciate your advice and concern. Thank you!

Good evening @julbpat, Oh my goodness, I don’t even go shopping any more in stores. I prefer to shop on line. And if something doesn’t work, I will either return it or depending on the cost,……donate it to Good Will. I really don’t go out enough to need clothes like I used to when I had my Art Gallery. Like you, I want to avoid pain and fatigue,

I too feel that this is the result of the progressive nature of SFN. Would it be possible for you to share the results of your appointment next month?

May your struggles and sorrows be eased,
Chris

@leonwass.....thanks for your response. I would not have thought about a hot tub. In fact, I have only been in a hot tub once. As I recall, it was not enjoyable but I think it was because of the folks I was with. I see now that the warm water and fresh air can be nourishing.
Chris

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.

This stiffness, muscle pain, fasciculations and fatigue all started after getting sick with Covid(all neurological symptoms). I barely had a sniffle when I got sick. Been to neurologist twice. Last time gave me benzodiazepines too. Have no diagnoses, he ruled out MS from brain MRI. I feel SFN fits my symptoms the best. It has progressed. Started with burning in legs and stiffness especially in calves (and felt ++ at night). What helps a bit is heat, hot baths, muscle relaxants and benzodiazepines. I won’t take benzodiazepines though as addictive. On a whack of supplements. Drs have not helped me. I don’t have a final diagnoses.

Consider having them check your tailbone, reason I say this I had a spinal fusion they say is healed but pain is worse. I have just started pelvic therapy and my tailbone is bent from using a cane, I never know which nerve is going to zap or go numb. I’m like you or was I always leaned on a cart ( which I wish they would round those plastic pieces so they don’t hurt your arms) mine is so bad now I won’t go in a store unless they have an electric scooter. Praying you find relief!

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!

I have small fiber neuropathy diagnosed in 2015 and I understand the electrical sensations and tightness. I don't wear a bra anymore and I prefer looser fitting clothing. I get it. Really. I wish I could find something to lessen the symptoms. I did not take the vaccines for COVID because I was too scared. I did get Covid twice and it was bad but mainly was tired and loss sense of taste and spell, but those returned. Wishing you well. I hope something begins to help you and my journey continues to this day.

My SFN is apparently genetic, as my sister has it too. But a note on hot baths. They have been my savior since this started 8 years ago. When I was still working, I even took a hot bath in the morning instead of a shower. But my symptoms of pain and weakness are also in my hands, moving up into my shoulders. Getting out of the tub can be interesting! I guess I need those grab bars, but dang, I’m only 63!

I finally had an SFN biopses in October of last year, results were zero fibers in my lower leg. To me that means my body has produced antibodies against my small fibers and is taken them out as fast as I can make them. I am taking IVIg treatments since last Sept with no change as yet. Want to know neurologist has ruled out Rituximab to clear offensive B lymphocytes as part of treatment but can't get through to him. I leave message but call is not returned. Any suggestions?