Share this:
lisadog33
@lisadog33

Posts: 1
Joined: Mar 28, 2017

Small Fiber Neuropathy

Posted by @lisadog33, Mar 28, 2017

I have been diagnosed with Small Fiber Neuropathy. My problem is this. Since before they diagnosed me, I was having other symptoms that I thought were not related including loss of appetite/weight loss, bladder control, bowel control, problem with eyesight at times, tremors, sleep issues among some other things. I was told by my Neurologist that those things are not related to small fiber neuropathy but when I look it up, it says it can affect your autonomic nervous system. What is the truth. I am having a heck of a time with bladder and bowel issues as well as either sleeping through the alarm or not sleeping at all. I hope someone can shed some light on this for me. Thank you.

REPLY

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

@johnbishop

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

Jump to this post

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.

@johnbishop

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

Jump to this post

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.

@ashlely

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.

Jump to this post

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

@ashlely

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.

Jump to this post

John, @johnbishop , I don’t wear socks for the same reason as you. I’ve found that they act as a barrier to the sheets. If I don’t wear socks, my feet really hurt from the contact. I used to use a blanket lifter, but we got a new mattress that’s too high. One of these days, I’ll come up with a solution. The lifter is a real help, but it’s a challenge to make a neat bed. Lidocaine cream really helps by numbing my feet, so I can get to sleep. A challenge I’ve had is finding socks that are large enough and loose enough. I wear size 14-16, and often they’re ok the first time I wear them, but they always shrink down to size 12-13. I’ve found one brand on Amazon that stay loose. They’re not Gold Toe, but I only use them for sleeping.

Jim

@ashlely

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.

Jump to this post

Jim, I have the same problem finding socks that are large enough. I wear size 14 and can’t stand the tightness of socks although I don’t have pain, just the numbness.

Hello there,

I have been on a long, expensive, medicine filled journey to find the cause of my SFN. I have had progressive numbness in my hands and feet for several years. SFN can absolutely affect your bladder control. I have bladder retention, and other bladder and bowel issues because my autonomic nervous system is involved. I have a diagnosis of Lupus, with normal labs since diagnosis, and with progressive numbness, tingling, edema, loss of sensation, loss of hot/cold perception in my hands in feet. I also have tremors in my legs, and issues with sweating. It is frustrating, and as I use my hands exclusively in my line of work, the progression of this with no foreseeable reversal or cure feels very defeating. I just moved from one state to another, and have had to re-establish with new providers. The next step in diagnosis is a skin biopsy.

I wake up multiple times a night with pain, and complete numbness in my arms and hands. I wake up to swollen hands, and painful joints. I simply cannot afford to have my hands go numb during a procedure, and the medication available such as Gabapentin affects mentation. I am happy to have found a place of understanding in this group, as it is difficult for people to understand the impact of SFN on daily life. They see it merely as a nuisance, not life alternating.

I’m unsure of the effect on appetite and sleep, however, the bladder/bowel issues, and tremors can be directly related to your diagnosis.

I had 3 puncture biopsies done recently. The ones below my knee showed normal, but the one just above the knee indicated small fiber neuropathy. I also had a nerve conduction study of my hands, and an audio evoke test. They both indicated neuropathy, with slowness between the ear and the brain stem. Myelin deterioration was also seen. The neurologist prescribed azathioprine to slow the deterioration. He mentioned Lupus, but didn’t elaborate, so I think that was an incidental symptom. I haven’t yet researched sfn or myelin. I’ll probably do that when I get home from church this evening.

What is sfn? I know I have idiopathic peripheral neuropathy, but I don’t know what sets sfn apart from regular pn.

I take Myrbetric for sudden urge urination, and have a weak stream. I also have esophageal dysmotility in the lower half of my esophagus and choreiform movement of the base of my tongue, and weakness in the tongue muscle, which means it doesn’t generate enough pressure to move food down the esophagus. All of these things are quite possibly further symptoms of neuropathy. Tim @squaredancer has been through the swallowing problems, much further advanced than I am. The ENT doctor said that the tongue issue isn’t an imminent concern.

So, I guess this all sounds pretty familiar to you who are reading this. Maybe you would have some input that would bring me better understanding of the various things that are going on in my body.

Jim

Please login or register to post a reply.