Small Fiber Neuropathy: What helps?

@poppsy1, Oh how sad I am for you. My dermatologist said I had a flaky scalp and told me to use Head and Shoulders shampoo. I use it but cannot tell that it makes a difference. My scalp still burns. There is a shampoo RX that I used for a while, but can't remember the name. My PCP doubled my nightly Amitriptyline to 20 mg. in the hope that it would help my scalp and my "down there" parts. Have you seen a GYN doctor? You might have lichen sclerosis or something else, but I use Halobetasol frequently and have a compounded mixture that numbs the area. I am in a flare mode once again. It never seems to go away so the numbing is essential. My heart goes out to you for all your pain and suffering. I hope you get some help soon. With all good wishes, @joybringer1

Hi Lacy Thank you for replying. I understand where your coming from. not knowing what each day will bring makes situation heck of a lot worse. My Husband died 5 years ago so now live on my own. Its such a cruel existence having to live with our out of whack bodies. I have no one one to talk or even a hug when I need it, which is every day. I was a very happy, active individual before these ugly symptoms started to grow in my body. Magic wand is what we need. Im having real problems with pain clinic at moment, spent most of today trying to get hold of someone to talk to regarding so called Drs phone appt that didn't happen. Dont know about u but I'm fed up with answering machines, bring back the god old days when u could actually speak to a human being. I miss the old me so very much, as I'm sure u do. I to get so overwhelmed with it all, not ashamed to say that I feel really scared at times, its all so sereal. Hope things improve for you sooner rather than later. Regards and Hugs

Thanks for the usefull, tips .

Thank u all for useful information. Unfotunatly my pains so bad I had to call ambulance this morning, they couldn't take me in to administer stronger meds. Im devastated, they phoned surgery to report my condition. What are we supposed to do when we are in pain crisis, just no help at all. I try to stay strong every day but when your whole body is suffering its difficult. xx

@poppsy1, I wish I had a magic wand and could take away your pain. Are there no doctors around you who might be able to help? Perhaps you have exhausted all the local help. How sad for you to suffer such pain. I am hoping for a miracle for you! Warm regards, @joybringer1

Hi Lucy No ive never heard of ambulance refusing, how times gave changed. Cant beleive they would leave us to cope on our own in CRISIS. Spoke to gp, have increased dosage on pain killers. Waiting on appt for pain clinic, begged gp to chase it up as urgent. Not much more I can do at present. Regards

Hi, I am a sufferer from small fiber neuropathy and I am also a neuroscientist. I am so sorry that you have to go through this pain without a good neurologist at your side. Small fibers make up 80% of your peripheral nervous system. It controls the bowl, the bladder, part of your vision, your sweat glands, the feeling you have in your skin and it modulates your heart activity. My advice to you, fine and new neurologists.

Hi Lacy Meds help a little, trying to stay calm. Have to limit myself by just walking around my flat, eg making drink etc. Scared to walk any further as pains around my sensative area's will shout at me. So very sorry your having a rough time Lacy, its so unjust. I beleive that for us all its the unpredictably of what we are going to be faced with every waking day. I'm with you on the subject of being envious of others going about their daly buisness. What we would give to be in their shoes. Im going to try and cheer myself up a bit by having my favourite meal Fish and Chips, bread and butter. ( Chip Butty) Take Care Big Hugs!

Hello @ncameron, Welcome to Mayo Clinic Connect. I imagine being a neuroscientist makes it a little easier to understand what's going on with your body and neuropathy. That's originally what drew me to Mayo Clinic Connect in 2016, wanting to learn more about my condition and what the future may hold for my small fiber peripheral neuropathy. I did like my Mayo neurologist but wasn't really happy with his diagnosis and treatment since he said I was one of the lucky folks with small fiber PN with only numbness and no pain. You may also be interested in another discussion here on Connect.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Do you mind sharing what you were searching for when you found Connect?

Hi @johnbishop, I am trying to find out if someone is getting treatment not only for the symptoms of SFN (pain treated with Gabapentin, Lyrica and Cymbalta,...) but the disease itself. SFN is so new in Neuroscience that research is more focus on detection than on a cure.... So my questions to you all is, are you on a treatment to slow down the degeneration of small fibers? If yes, what are you taking?