Small Fiber Neuropathy: What helps?

Hello @lisadog33,

I'm truly sorry to learn about your diagnosis; however, as you will see, you've landed in a great community here. First, I'd like to introduce you to one of our Mentors, @johnbishop who has written extensively about small fiber neuropathy (SFN), and has share his experiences in many of the groups on Connect. If you wish, you can view a few discussions, here:

- Anyone here dealing with peripheral neuropathy? http://mayocl.in/2oeHFAG
- Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain? http://mayocl.in/2oeSra7
-Does anyone have a treatment for Neuropathy due to chemo http://mayocl.in/2o96rVU

If you scroll through these discussions, you will see that John has provided some excellent links to resources.
I'd also like to tag @magg @cjkressin @brie87144 @islandhippy @lucille @rabbit10 @emilyanne @medic7054 @fleure @martid @painwarrior, as I'm sure they will have more insight for you.

With regard to your concern about the other symptoms, here's what I found: According to this NIH (National Institutes of Health) page, http://bit.ly/2nyTseH, " some affected individuals have urinary or bowel problems, episodes of rapid heartbeat (palpitations), dry eyes or mouth, or abnormal sweating. They can also experience a sharp drop in blood pressure upon standing (orthostatic hypotension), which can cause dizziness, blurred vision, or fainting."

Are you taking any medication for pain, @lisadog33? Do your symptoms get worse/better at certain times of the day or night?

@lisadog33 I have a lot of the same issues. I was diagnosed in July. But like you said they said my other issues weren't apart of my SFN. Then I was diagnosed with chronic fatigue and bladder issues with it releasing it self to not being able to go at all. And diagnosed with IBS. I have a whole bunch of other things going on too but after being with mayo for 16 months, they still had no answers. And they weren't treating anything. My insurance found me another opinion and I was finally diagnosed with AAD-EDS (articilo-autonomic disorder/ Ehlers- Danlos spectrum disorder) which explains everything I have going on. From what I was told is that small fiber is caused by something. But trying to pinpoint it is the hard part and sometimes they never do. I was blessed when my insurance did an evaluation over my medical record when I asked and got me to the right doctor to be diagnosed. Have they looked for POTs? I have POTs and they said it's lile your body is stuck in fight or flight and it makes everything work incorrectly. Like my bladder, heart, bowels and hearing, etc

Not sure this will be much help but please if you need to reach out.

Hello @lisadog33 I am glad to see that you are reaching out for answers. That is an important first step of being your own advocate and hopefully finding some answers that will help you. It's really great to hear that your insurance company helped you find another opinion. A lot of people with small fiber neuropathy also have other autoimmune system issues. I have idiopathic small fiber neuropathy in both legs and feet. I also have polymyalgia rheumatica (PMR) in the shoulders, arms, and hands. The PMR was in remission for about six years until this past August. The magic pill, prednisone, keeps it under control but I'm in the process of tapering off of the drug which I know takes time - 3 years first time around.

I recently watched a video that may offer some help/advice:
"What happens when you have a disease doctors can't diagnose"
TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
http://bit.ly/2nvf21H
Another recommendation that I have seen recently for people with multiple symptoms is to keep a log and write down everything - type of pain, where, when, how bad on a scale of 1 to 10, etc.. This will help you better describe them to your doctors and ask them more questions. Don't settle for an I don't know answer. Keep pushing because in the end you are your best advocate. It's not that the doctors don't care, it's just that you know you the best.

I'm hoping some others will jump in like Brie (@brie87144) who has some great advice.

John

Brie (@brie87144) I have to apologize to both you and @lisadog33. I said that it was a good thing that (@lisadog33)'s insurance company helped her find another opinion when it was actually Brie's insurance company. I would like to blame it on needing new glasses but I am sorry if I caused some confusion.

Hello @lisadog33, I've been thinking about you and wondering if you have found any relief for your symptoms and if you have looked into any of @brie87144 suggestions?

Hoping you are doing OK...

John

It may be small fiber polyneuropathy. Do a search to find more about the work being done by Louise Oaklander, MD, PhD in Boston. Cbeck neuropathycommons..org

Although doing research is a good thing it can also do harm when folks start diagnosing themselves from things they read online. Doctor's have fired patients because of this type of thing...I am not one of them. When someone tries to diagnose themselves they may do more harm than good to themselves.

A comment and not an accusation...not an MD and stay a way from them as best I can.

Sorry my life had been up in shambles lately. I haven’t really found any options for my neuropathy. The neurologist at mayo in Az told me it’s not a condition he will treat until they know the cause. Which knowing the cause is kinda impossible since I have so much else going on. I need to go back to the neurologist but won’t be doing that till I recover from my recent surgery.

Have you found anything useful or come across any ways to deal better?

I have non diabetic peripheral neuropathy caused by dermatologist injections in legs and feet in 2007, pain minimal but numbness bad and freezing feet. Want to tell everyone suffering from cold feet, before winter, to buy Old Friend Sheepskin bootie slippers. Are soft sole, warm and sheepskin soothing for sensitive skin. I wear them to bed and all day. Helps sleep constantly interrupted by feet.

Hi @ashlely, Welcome to Mayo Connect. I also have non diebetic peripheral neuropathy and only have numbness but without pain in the feet and ankles. Thank you for sharing your tip about taking care of the feet - it's really important for those of us with PN of any diagnosis. I wear socks to bed after rubbing my feet together one night a few years ago and tearing open a blood vein near the surface of the ankle during the night. I woke up to go to the bathroom and felt the bed was wet near my feet but didn't realize it was blood. Then when in the bathroom I looked at my feet and noticed blood spray coming out of my ankle. The paramedics were able to stop the bleeding but took me to the ER anyway. Moral of my story is to keep the toenails trimmed and wear socks if you like to rub your feet together.

John