Small fiber neuropathy and muscle tightness

It sounds so familiar that you could be describing my situation. Other than muscle relaxers, I have had no relief with any of the usual drugs. I keep having to go up on gabapentin as my body gets used to it and it stops helping. I am going to ask for a new drug and drop the gabapentin. I wish I could give you better news, but the best relief I've found so far is the muscle relaxers and ibuprofen.

@imsaed I have SFN in my feet and I get a lot of cramping/spasms in my feet when I lay down. I also get a lot of calf cramps/spasms at night. It doesn't impact me when I am upright. I hope you find some relief.

If you have muscle weakness and/or muscle atrophy be sure CIDP has been considered. It stands for chronic inflammatory demyelinating polyneuropathy, an autoimmune disorder that is a combination of peripheral neuropathy and loss of myelin sheath that transmits nerve signals to the muscles causing weakness and sometimes spasm. It is treated with IVIG infusions (plus other options). I had symptoms of this for over a decade before diagnosis as it is uncommon and under recognized.

I was diagnosed 15 years ago at UAB Birmingham. Just as they said, it has progressed up my body and now in my face. Also been to Vanderbilt and Mayo Jacksonville. Found no relief, chronic pain at level 7-8. In late stages of SFN, large fibers can also be damaged, this can cause stiffness and pain in the muscles. Like you, I also experience this type of pain. Different than pins and needles and burning. Again, I have found nothing or no one to offer a real pain free plan. Good Luck. Stay Strong.

Welcome @leonwass, Sorry to hear you haven't found much relief for the pain. Have you tried any of the complementary or alternative treatments like ones that are mentioned on the Foundation for Peripheral Neuropathy? - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

Good afternoon @farmgrrl57 ......Please do not just "drop" the gabapentin. Discuss the tapering with your doctor. It took me several months and my PCP was right with me. I also have started a bit of ibuprofen because it worked really well for me post-surgery for a TKR. I only take it as needed because it can cause stomach issues. It is wonderful to have a medical professional holding my hand. We call ourselves Health Partners. She even showed up at 6:30 one morning with still wet hair to comply with another physician's request. Lucky me!!!!!
Chris

Good afternoon and welcome to Connect. It sounds like you could be helpful to others at this point in your experience with SFN. Sometimes, trading things that work for one person with other folks and then back and forth can be very helpful. You, for example, mentioned something I had never seen in writing or didn't know what I was looking at.

I am talking about this sentence. "In late stages of SFN, large fibers can also be damaged, which can cause stiffness and pain in the muscles." I have had SFN for 11 years now and am having a struggle with exactly what you said........large leg muscles or fibers that stiffen up and then cause pain and incapacity. I can slide down the wall or wait till I fall. Neither option provides relief. What do you do when this happens? My MFR therapist works on these legs twice a week. I then use a rubber ball treatment before I get up in the morning in the hope that I can make it to the bathroom.

Lucky me to find your post today.

May you be safe, protected and free from inner and outer harm.
Chris

Chris
Like you, the morning is the worst. Luckily I have a hot tub on my back porch. 20 minutes 102 degree water first thing helps loosen me up so I can walk and get going. That’s my go to any chance I get. Leon

John
Thank you for the links, I will definitely take a look at them. Leon

When I stop to think about some of the ways my SFN has progressed, this increased problem with my thighs (IT band) and probably the areas below that has been very gradual. What used to be an annoyance eight years ago is now routine. My days of enjoying brisk walks are long gone. Now shopping without a cart is something I dread. I think leaning on the cart allows my tight leg muscles to periodically rest.
Yesterday I went to a large store to look at clothes. There are no carts, and because my left hand has stitches from carpal tunnel surgery, I couldn’t give up my right hand and use my trekking pole, which I’ve started using in situations like that. (I have a cane, but it elicits more sympathetic looks than the trekking pole). Anyway, I tolerated one trip around the store, arms aching from sifting through racks and carrying a few clothes to the dressing room. As usual, my legs were fatigued, my gait was getting stiff, and of course there was pain.
This is disease progression. It sneaks up on you.
I’ve made an appointment with UAB next month to review these slow changes, maybe to get a better view of the future.