SFSN: Symptom Relief

Hey there, glad you posted this discussion! For me :

1) Compression (Knit-Rite Compressogrip OR Tubigrip) ** (cannot function w/o it)
2) Gabapentin (tones it down)
3) Epsom salt soaks (I use at night, takes the edge off)
4) Warm socks (helps with always cold feet)
5) Tuning fork (decreases the pain significantly)
6) Staying active (within reason, even minimal is good)
7) KT tape / medical grade tape ** (I swear by this stuff)
8) Myofascial release (helps take off tension from my shoulder blades)
9) Icy Hot rub-in (NOT biofreeze! = this is about 50/50)
10) Chiropractic care (a godsend!)

... there's probably more, I'll add onto this when I remember! 🙂 Good luck!!

From the Foundation for Peripheral Neuropathy:
-- Peripheral Neuropathy Nutrition (includes list of supplements): https://www.foundationforpn.org/living-well/lifestyle/nutrition/
-- Treatments (includes a list of drugs/medications): https://www.foundationforpn.org/treatments/

The "Tuning Fork" treatment is new to me. How does it work? I envision it as applied vibration at very specific points, as opposed to vibrating the entire (in my case) foot on a vibrating board or in a vibrating slipper.

Yes, you are correct about that. Last year, I went thru a bunch of trial therapies that had made the cut after studies done. I worked with my OT, who said I was a good candidate. She had not yet trialed it firsthand on anyone, and turns out me and another patient both found temporary relief (several days) from utilizing that method. For me, she would make it vibrate and apply it on my nerves' pathway (all 3 major arm nerves, in my case) repeatedly, going up then back down. I can't say I felt immediate relief, but later in the day I noticed my symptoms were much lessened, and I was able to sleep better. The next few days it stayed muted and would then ramp back up, unfortunately. But, such is the case with neuropathy. Also, if I might add - I am severely hypersensitive to touch but was able to tolerate this. So, something works... I cannot tolerate any "hard" or "deep" vibrations, or else I'll be even more nauseous and paying for it for days on end. Hope this helps you.

It certainly does. Thank you!

Could you tell me what your symptoms are? Do you know why you have SFSN? I have trigeminal neuralgia, paresthesias and dysesthesias in upper and lower extremities as well as vertigo and neurogenic cough. Recently I developed gastroparesis. So now I am getting autonomic nerve dysfunction. My EMG's have been negative.

Hi there @marylynn13! It sounds to me as if you have layers of symptoms related to your condition(s). I'm so sorry you are suffering, I know firsthand this can be a lo deal with and overwhelming at times. You are not alone in your struggles! As far as my symptoms go, keep in mind I have 3 conditions all feeding into one another - SFN, ALS-4 and CRPS II. My SFN has been deemed idiopathic and it affects all 4 of my limbs, but it started primarily in my arms. It has taken me years to get to this point, and I've undergone a lot of physical trauma amidst it all. The main symptoms I deal with - radiating / electric / throbbing pain down my arms, muscle cramping, dyesthesia, parasthesia, hypersensitivity, hyperreflexia, pressurized pain underneath my fingernail beds, squeezing in my hands, complete numbness in hands, numbness below my knees, weak hands / some atrophy in right, nausea, decreased bone density and some kidney dysfunction. My EMGs were not textbook any of the times I had them done (probably 5 by now), and I've had 4 surgeries prior, one involving major complication. My body's a bit of a mess, but I'm finally learning how to track with it. 🙂 I hope you can find relief and answers.

I think LED Red Light and Near Infrared Light Therapy devices help. I bought the mat from Amazon.

@retired123 So far, and. this is my third series in response to a severe itch flare, I would agree. I go to the "Cabinet" at my Dermatologist's office.

How do KT tape and Knit-Rite work/ are used?