Hello everyone I haven't been on for a while, I hope you are doing better. Wish I could say I was improving, but im not.. been struggling with my symptoms and have been to depressed to even come on here.
As some of you may remember I was diag with SFN around 2 yrs ago. by skin biopsy..
My SFN is widespread meaning I feel it in my legs, feet, arms , hands, Torso and face and mouth. Ive had a million blood tests, MRIS of spine and brain, you name it. They are calling it Idiopathic for now. My symptoms are pins and needles,tingling, a buzzing/vibratory sensation that starts in my head (I feel it loud in my ears) it goes down thru my body and I feel burning patches on my skin as it travels down into my feet, leaving me with burning feet. Ive developed tinnitus , I never had it before! I'm almost embarrassed to write this because I know it sounds crazy. Its difficult for me to tell any of my family members what I am going through because of the way it sounds. I appear normal and healthy to everybody, except for the suffering in my eyes. I take 325 mgs Lyrica, not helping much. My Neurologist thinks 325 mgs Lyrica is adequate. I also take 1.5 mgs Clonopin for anxiety, I take 10mgs amitryptiline at night , it helps me sleep sometimes.
Does anyone else have any of these kind of symptoms? In the last few months , my symptoms have changed and now I have this awful buzzing sensation throughout my body. Should I be more persistent for IVIG treatments. Does anyone think it could help with my kind of symptoms? My Neurologists say I am not a "candidate" for these treatments. I have been taking 1,000 mcg B12 and all the other B vitamins except for B6, for over a year now, don't know if they are helping. I am at my wits end. Dont know what to do or think anymore. This buzzing, tingling and burning for no apparent reason (Idiopathic) is driving me crazy and has made me very depressed. I would appreciate any advice, help or input. It feels like no one could ever understand what I am going through , I hope someone on here can. Thanks in advance
Marie

Sorry to hear how bad things have gotten, Marie. Idiopathic doesn't mean no reason- you have a diagnosis of small fiber neuropathy which can be intensely painful, it just means they can't find a cause. At least a third of neuropathy cases are idiopathic, which is easy to feel like it isn't taken seriously, but is, in fact, a serious condition. If you found someone lying in the road all bruised and broken they would still be hurt whether you knew which car hit them! ( terrible analogy, but my point is you do have a diagnosis of a disease ).

I have a number of your symptoms, burning and numbness that wakes me in the night, pain that involves all of my legs, and much of my arms. No tinnitus, but very rarely the brain freeze shivery feeling you describe. I have hereditary neuropathy, which is progressive and for which there is no treatment.

My understanding is that IVIG treatments are for CIDP and some autoimmune neuropathies, they are not helpful for other types, and difficult to get insurance approval for trial runs. Some on here have had treatments without having the usual indicators and it didn't seem to help them, so they are not a panacea for all neuropathic patients by any means. Hopefully someone will respond with more info.

They is a lot of support here and on the Internet in general for invisible chronic illness, as well as many great books. I walk funny and use a cane, but I know that feeling terrible while not looking sick is psychologically difficult to navigate, especially when you don't get the support from others that you need. Sometimes I don't know what I would do without the Internet.

Marie 33
I have all the same symptoms as you. I have small fiber neuropathy.
the tingeling , pins and needles in arms, numbness in feet, legs, and arms and hands. And the burning is all over my body. Sometimes the paresthesia in my arms causes weakness of hands, muscle spasm in arms. The most unexplainable and scary symptoms are, as you said, the vibrating feeling. It feels as something is constantly vibrating inside.
A question to you, if I may: Do you get pressure and tightness in your chest?
Do you have autonomic neuropathy?
I am sure you had immunology blood tests?
Did you see a Immunologist?
I am being constantly investigated for some sort of autoimmune disorder. So far, have vasculitis.
I have tightness around my chest, and I am wondering if it could come from small fibers causing chest muscles to spasm.
Hope we all feel beter one good day!!

I sent you a PM yesterday (I think it was yesterday !).......How long have u been on the Lyrica ? I'm on 2700 mg a day of gabapentin/Neurotin and this is the first drug the neuro has used. Going thru the process but I'm thinking this is not the right drug for me. Maybe he needs to change your meds to something else.

I don't have the buzzing sensation you describe but I do have all the others. In addition to the gabapentin, I take 1/2 a vicodin 4 times a day. Most of the time this keeps it at a tolerable level. I'm home 99% of the time because walking just stirs those nerves up in both feet. I'm lucky in that it's only spread to my knees and my hands were better but I've noticed a change in them over the past month. Drives me crazy too.

I started using the Morton Epson Lotion that MrsD recommends but only started yesterday. Hoping it help the swelling in my feet and left ankle.

Please keep us posted and know we are here for you.

Debi from Georgia

I have the same nerve pain with the burning, needles, and so on. I start the IVIg soon. I have stiff person syndrome (however dr said the neuropathy isn't a prime symptom of SPS but not everyone is different) and said the ivig would benefit. I used to be on lyrica and I would like to give it a try agian, I remember it helping tremendously (can't remember why other dr took me off?)

I'm sorry that no one around you "gets" the way you are feeling. It is really weird to feel soooo bad but look so normal. That can be really tough on your mind. I can't remember if you are able to work or not and what your pain ratings are. I presume you can't work and your pain ratings are in the 7-10 range. I have tinnitus as well as SNF pathology also. I have never thought that the tinnitus was connected to my SNFP. I've always attributed it to the days when I was much younger and played in a rock band. Have you done anything which would cause damage to your ears? They say that even something like being a truck driver and driving with your window down over time can cause tinnitus.

I tend to "try" and read professional journals in order to understand SFNP and every couple of years I catch up with the most recent literature. One of the biggest apparent causes has to do with abnormal glucose regulation, even in the pre diabetes stages which I recall you having. There are numerous mechanisms in diabetes that cause all kinds of problems - retinopathy, impaired autonomic function (gastrointestinal function, urinary frequency, cardiac, hypotension, diffuse damage to unmyelinated and lightly myelinated nerve fibers, inflammation in the upregulation of pro inflammatory cytokines, etc) and the mechanisms underlying pre diabetes/diabetes are a lot more complex than just "needing to control blood sugar" and seem to mimic autoimmune disorders.

<Christopher H Gibbons, MD, MMSc and Roy Freeman, MD (2010) Treatment induced diabetic neuropathy– a reversible painful autonomic neuropathy. Ann Neurol. 2010 April ; 67(4): 534–541.>

Spoiler alert: The study mentioned is paradoxical in that pain developed as blood sugars were controlled.

The folks in the study above report 10/10 pain levels that are not helped by medications. Many were on methadone. They report that one side effect of getting blood sugar under good control for some people (a minority for sure) can get intense SFN pain confirmed by skin biopsy. The pain got better an average of 18 months after it began. And, as I recall, nerve fibre damage showed improved growth.

Just throwing this second point in because it is interesting. It is becoming clear that SFNP is present in a significant number of people with fibromyalgia as shown by two 2013 studies. The major finding of the Oaklander study, below, was that they found that 41% of skin biopsies from subjects with fibromyalgia vs 3% of biopsies from control subjects were diagnostic for SFPN.

<Anne Louise Oaklander, Zeva Daniela Herzog, Heather M. Downs, & Max M. Klein (2013) Objective evidence that small-fiber polyneuropathy underlies some illnesses currently labeled as fibromyalgia . PAIN 154, 2310–2316.>

<Nurcan Üçeyler, Daniel Zeller, Ann-Kathrin Kahn, Susanne Kewenig, Sarah Kittel-Schneider, Annina Schmid, Jordi Casanova-Molla, Karlheinz Reiners and Claudia Sommer. (3013) Small fibre pathology in patients with fibromyalgia syndrome. Brain>

While this seems to be off topic, I guess I'm trying to say "hang in there" and that the area of SFN is the subject of ongoing research and the research is getting more sophisticated all the time. I think the growing awareness of skin punch biopsy technologies has really stimulated research in this area. This problem is definitely on the radar, so be hopeful. Secondly, given the close relation of pre-diabetes and diabetes to the disorder please focus on those things you can do to help in this area: diet and, importantly, gentle exercise.

In my case of SFN pathology, I didn't get much out of gabapentin, pregablin, or lyrics and have stopped those. I currently take cymbalta to help with diffuse pain and depression and a sleeping pill at night. Unfortunately, for pain control I have had to move to time-release morphine. A side effect of morphine and whatever SFN and other health things that that I have is extreme fatigue and tiredness. In conjunction with my psychiatrist I have started taking adderall (amphetamine) and this seeming dangerous combination of morphine and speed has really, really, really helped me and given me both pain relief and hope for the future.

I (kind of) know what you are going through Marie, and want you to know that I and other SFN survivors are here and we are willing to do what we can to give you strength. Each of us, in our own way, understands exactly what you are going through and for most of us, it has been The challenge of our lives.

With Love,

Mike

i have had the same symptoms as you have had. i have diabetic neuropathy. i started taking 1800mg (600mg x 3) of r-lipoic acid per day and it has helped me out at least 50% along with 8000mg (2600 x 3) of evening primrose oil and 1500mg (500mg x 3) of generic vitamin c all divided into 3 doses per day at the same time. give it at least 1-2 weeks to start working. its called the (diabetic neuropathy cocktail) Google it and research, It is working for me. buy it in bulk and save money, get well soon