Which are the symptoms of Small Fiber Neuropathy?

Disclaimer - I am a patient who carries a diagnosis not a medical degree. Body: Burning - as if you were on a hot set of coals or in a hot tub for too long. Numbness / Loss of feeling - not a complete loss of feeling, but its as if you were wrapped in plastic or as I've read elsewhere is described as a wooden like quality. Electrical sensations - if you've ever rewired your living room lamp incorrectly - this is almost the same feeling as the 120V outlet sensation - like walking or holding onto a shorted lead cord. A general feeling of crap. Yes, the other 4 letter word fits much better - but an overall weight of the feeling of something not being right (yes that is definitely hard to put into words). Mind: From memory loss to simple forgetfulness - until you've been in that office and were told you have SFN it most likely seemed like you were going nuts. Well, as soon as you find out it really isn't in your head and you breathe a sigh of relief, you soon start to connect the dots - what is caused by this, and what have you been even denying? I've been there my self and it can be overwhelming and yet helpful to acknowledge at the same time so you and your healthcare professional can learn more about you and help with those other issues. Soul: I try not to include this, however, this is something that shouldn't be ignored. Not just on a religious standpoint, but so are your relationships - family, friends, and partners. Not being able to do what seemed like you could do years past, or by declining invites, etc. we've all been there - from the backyard bbq to a night out with the friends turn into watching ABC's new Thursday show while laying in bed trying to find that one position to get comfortable.

9/29/18 by Brian 1350

Numbness and tingling that often starts in the hands and feet but can start anywhere. Can be persistent or intermittent. Can include burning, stabbing or itching skin. Since it involves the small fiber nerves that feed all organs, autonomic function is often impaired such as blood pressure regulation, inability to sense or tolerate temperature, digestive issues and sweat control.

7/12/21 by Jo 3150

Doctors are reticent to speak openly about SFPN because it hasn't been studied by many departments or for many years. I know that my sub-illnesses are not the same as most other patients have though they DO overlap. My experience is that more Autonomic Nervous Systems are attacked than Motor Neuron systems but both are attacked by my immune system and both can give you hyper-activity which will eventually be loss of activity when the nerves are first irritated by being attacked and then killed off. For Example, people with the more common "ALS" are very visible because they lose mainly or exclusively motor nerves. I have heavily weakened lower legs/feet/hands/wrists that is minor compared to patients of this sibling illness but obvious compared to other people from my 40s to now 50s. I often fall, drop things,and have a large lack of coordination which has 2 causes, loss of nerves in the legs/feet, hands/arms but also loss of sensory nerves in the fingers/feet. The progression is slower than for SLA patients but I would say about 3 years off loss for 1 year of my life. For this reason I say that SFPN is a bit like aging quicker than you can adjust to and that I am 87 not 57 since my organs (autonomic) have experiences so much nerve loss. One I have that most people seem to is that my immune system killed off most of my sweat nerves, all over the skin of my body, starting in the later teen years, if not early teen years. This makes you extremely intolerant of heat and humidity changes which for me were manageable until 2003. 2003 was also a big year in global warming and World-wide humidity increase as was 2013 - the oceans jumped greatly in temperature creating more humidity in the air and less in the ground, as well as more grey weather / Low-Barometre. I consider myself the Canary in the Coal Mine for Global Warming for this reason. Since 1982 my most obvious condition was "Severe Rhinitis" which is a strong version of perhaps the World's most common illness, benign in most people. I get flu symptoms with weather changes, especially drops in barometre and rises in humidity. Most Allergists and ENTs pretend this illness does not exist, and perhaps it does not in patients with normal neuro conditions. SFPN can irritate sinus nerves and so in my case since was 18, I have had flu symptoms, as real as with any virus (but not contagious) for 3months of the West Coast's "Winter" and when I was 39 it progressed to 4months, 6months, 9months and then year round due to Esophagus damage. Any good GI or Allergist will tell you that reflux effects sinuses and vice versa. Finding a good GI or Allergist in the USA is nearly impossible, especially one that is not controlled by their money-focused managers. Severe Rhinitis can be controlled by climate / where you live / keeping your house stable, dry and running dehumidifiers and air conditioners. NOT going out side when it is humid or very hot or grey which is harder than it sounds with the oceans warming quickly. Clear dry weather but avoiding heat at the same time is ideal and hard to achieve if you are not wealthy. Cleaning your sinuses 1-2x /day to reduce congestion (with very warm saline) helps and there are many good anti-congestion products that are mainly not prescribed very often so finding a better allergist who will try less common (i.e. less poplar with your insurance) Rx is important as well as a GI and Allergist who will SPEAK TO EACH OTHER. Nearly impossible in the USA. The symptom I would would eliminate would be my inability to sweat all over my body like a human as this automatic A/C allows you to associate with your fellow primates. I have alienated hundreds of friends, associates and was fired from jobs that I was able to manage my time and work from home over my inability to dress formally. It wasn't long before working even at home was impossible, but still stressful. Also the cost of living like chilled white wine is enormous and is growing. I used to love sleeping next to someone but I overheat every morning with my own body in an oddly cool room. MD's always ask about the more common conditions. Yes, my feet and hands sleep more often progressively and feet and lower legs burn - after decades I got used to it. I also have many phantom pains that mimic other pains in the fingers/hands, feet/toes such as splinters where there are none, bee stings as well as more common burning which is highly unpredictable EXCEPT that low barometre for me always increases ALL types of problems. For me the desperate attempts of my neck, groin and head to cool my body when 98% or so of the sweat nerves have been killed off is way more horrifying than "fire-y" legs or "pins and needles" that all Neurologists ask you about. If that is all you have, consider yourself lucky. Additionally the overheating is tied to GI as well so here you need a GI who will speak to your Dermatologists. In the USA many Dermatologists are open-minded, most GIs are monsters. I found 1 good one and the rest are evil, selfish and lazy at the highest institutions (like Stanford, CA). Movement through the intestines is another source of heat besides ambient temp and humidity. A normal human compensates for this movement but when your skin no longer works, you have to endlessly try (and it is hopeless) to balance your intestinal speed to avoid overheating like you are wearing a 3-Piece Suit in a wet Sauna. If I could afford to move to an 80% underground house at 2500 metres, I would do so. Again - rich person's illness. IF YOU WANT TO TALK ABOUT SEVERE RHINNITIS, ATYPICAL REFLUX PER MY PERSONAL EXPERIENCE, I am going to leave my contact with a lot of caveats. I will respond to folks who are polite enough to write with a first, last name, location and share info about their SFPN or loved one's SFPN prior to questions. Think polite Victorian letters. MarkLazersonATLiveDotCom - Consider that I respond usually on the first part of the weekends, DEPENDING on weather changes and how miserable I am. I am not compatible with folks who use Zombie Phones or Social Media sites as I do not "text" and am emoji-free. Computer E-Mail is my level of comfort. Please think of me (2022) as 88, not 58. I'm empathetic, direct, honest but also tactless at times and a bit of a curmudgeon. A lot o' bit of Bert, a little bit o' Ernie.

2/3/22 by Mark 2000

Translated from french Improve translation

Numbness of the 4 limbs at any time Strong neck pain that comes and goes sharp pain leg and arm at the slightest effort (especially the arm area and climbs stairs) Chronic Fatigue Memory loss sensitivity to the slightest touch shortness of breath on exertion

10/17/17 by Cat. Translated