Connect
Non-Length Dependent Small Fiber Neuropathy
there is much discussion of PN but seldom is much said about non-length dependent neuropathy. I guess it must be relatively rare. The condition affects all different parts of the body. I think it is usually idiopathic as is mine is. I was diagnosed with it more than 10 years ago. I’d like to hear from others with this type of small fiber neuropathy.
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
Sounds like me almost. Anyone just suffering from tingling and numbness can thank your lucky stars. However, that's how mine started 3 years ago (at least the diagnosis of small fiber neuropathy). The litany of diagnoses I've had through years of migraines, g.i. problems, connective tissue problems...all before I was diagnosed with SFN. Focus to today. I'm on my 4th day of a "flare up" (for lack of better term) where all my symptoms; eye pain, muscle spasm, nerve pain, facial pain, earache, g.i. problems etc al ..at once rendering me dizzy to the point of nausea, off-balance and unable to drive, or work...but, they cannot do anything but "treat the symptoms as they come..." Newest to the lineup: uveitis (secondary, of course). I'm laid up so often, I get to work from home now without question (good people I work for) . The rare days I feel ok; I praise the good Lord for the blessing and always for my ability to see my family to remind me how lucky I am to be a Mom and wife in a wonderful, understanding bunch of people.
So, what I've learned so far after a decade of progressive nuerapathy in my feet is this. The more load I put on my feet the worse it gets during the day. I do 900 at 8 am again at noon and at 4 then 600 at 8 pm when not on my feet so much. If it gets on fire I will rub lidocaine 4 milligram ointment on my feet and that puts out the fire in minutes but only lasts an hour or so. I've tried many different therapies and doctors. Different things seem to work for different bodies and sometimes we develop tolerances for a particular drug and must try something else. Research is a good thing but it's progressive and with over 100 different kinds of nuerapathies and little concensus on treatment we can only hope for better answers. John
-
Like -
Helpful -
Hug
1 Reactiondo you have Igm mgus like me which is linked to the neuropathy
do you have Igm mgus which can cause this i.e. abnormal blood cells and does it cause incontinence and excessive urination which i have and insomnia and extreme weakness and fatigue
anyone have dry mouth and eyes burning from the small fiber neuro and excessive urination and irritable bowel type symptoms and has anyone tried plasma exchange,ivig , or rituxan
Ooh, yes, the vertigo! Thankfully I’ve have that since birth, so it doesn’t make me too bad mostly. Does make me a terrible passenger though. I get episcleritis where my eyeballs peel - boy did that freak out the local GP 🤣 I have also developed Fibromyalgia as a co- disorder which is just great (sarcasm) In the end I retired, thankfully on my full pension, with an understanding husband who now does all the cooking thanks to sudden nerve jerks from pain stabs meaning I’m prone to throwing things by mistake 🤷🏼♀️🤦♀️
I was finally definitively diagnosed with Small Fiber Polyneuropathy after the puzzle piece of Gastroparesis was added to my long list of disparate symptoms and my neurologist ordered an IENF Skin Biopsy.
My symptoms started three years before that after a day at Disneyland walking and standing for hours.
I could hardly walk to the car, and suffered level 7 BURNING, tingling, numbness, parenthesis’s, etc., that kept me from sleeping/dreaming for 3 years before I saw a podiatrist who diagnosed bilateral plantar fasciitis with bilateral Achilles Tendonitis. He tried cortisone injections which did nothing. Neither foot braces, resting feet, Lidocaine patches nor ice helped.
My PCP referred me to a neurologist who prescribed 300 mg Gabapentin which did nothing.
He titred up my Gabapentin to 300 mg Gab 3 x per day (900 mg total daily) PLUS Cymbalta (Duloxitine) 60 mg, and the burning went away!! He said the Gabapentin blocks the pain signals from my feet/lower legs, and the Duloxitine blocks the pain Receptors in my brain. Coincidentally, the pain receptors in the brain are in the same region that controls Depression. No wonder pain and depression go together, and that is why the Cymbalta (Duloxitine) plus Gabapentin works together to control symptoms for me. My pain has been controlled for over a year! I resisted the depression piece at first because I didn’t understand the pain/brain connection. When you need to control things, accepting "DEPRESSION" is hard.
I’ve recently been diagnosed with Central sleep apnea, and will have an in-lab sleep study.
Hopefully, this isn’t a progression of my autonomic symptoms.
Another weird symptom - when I gasp for air, my lower legs tingle! This has improved since starting AutoSet CPAP. Sleep lab results should be interesting.
-
Like -
Helpful -
Hug
1 ReactionWelcome @vault, It's really good to hear your pain is finally under control. There are some discussions on central sleep apnea that you might want to read through to see what others have shared.
-- Diagnosed with Central Sleep Apnea (CSA)? How's therapy going?:
https://connect.mayoclinic.org/discussion/central-sleep-apnea-csa-suitable-therapy/
-- Can a CPAP machine treat central apneas?:
https://connect.mayoclinic.org/discussion/can-a-cpap-machine-treat-central-apneas/
-- Central sleep apnea. Cause?:
https://connect.mayoclinic.org/discussion/central-sleep-apnea-cause/
How long have you been using a CPAP machine?
-
Like -
Helpful -
Hug
3 ReactionsHi, John! Thanks for responding!
I waited 5 months to get my CPAP machine due to the supply-chain issue caused by the National recall of some Philips machines.
I got a ResMed AirSense 10 AutoSet with heated/humidified hose.
The first mask I tried was a ResMed AirFit F30i. My issue was that it covers nose and mouth with a silicone piece that drapes under the nose, and having had sinus surgery, it was hard to keep the nose piece and vents centered under my nose. My turbinate bones were removed and my nostrils pinch shut easily. I felt like I was suffocating.
My sleep med NP gave me a sample Philips Respironics Dreamwear mask with silicone pillows to try. I really liked it but had too much mouth breathing.
The mask I’m using now is a ResMed F20 full face mask with memory foam cushion. I love it!
I sleep mostly on my sides and the face mask is sloped steeply enough that the mask doesn’t make much contact with my CPAP pillow. It’s very soft, yet has the fewest air leaks of all! It has to be replaced monthly, but is well worth it. Really easy on-off with opening in front so I can talk and sip water through a straw. I don’t have dry mouth issues that require drinking water constantly and then getting up to pee all night.
I have been sleeping through the night most nights.
I have developed significant Treatment-emergent CSA (18.6) with Cheyne-Stokes respirations and will have an in-lab sleep study tomorrow night.
Wondering if breathing issues are related to SFPN. I also have Gastroparesis and GI motility issues.
Research has shown that up to 40% of FM patients have SFPN (SFN) when skin biopsy is done.
There are so many overlapping symptoms and conditions and their treatments are sometimes opposite! My doctors have told me they that’s why they need definitive proof before offering treatment or suppressing my immune system.
We are called patients because it takes patience to find answers.
Take good care of yourself!
-
Like -
Helpful -
Hug
1 ReactionHappy to hear lidocaine helps you with the burning. I have the 4% Aspercreme and it doesn’t help. I’ve tried a ton of topicals and none of them help. I’d love some relief from the burning and pain.
-
Like -
Helpful -
Hug
1 Reaction