New
 

Hi,
I am new to this forum. I’m 46. My small fiber neuropathy symptoms began suddenly in April 2012. The symptoms started in my feet and then spread to almost my entire body within a 2-3 week period.
My current symptoms consist of pain, burning, pins & needles and tingling in my feet (wet, liquid, cold), calves, thighs, hands, arms, torso and sometimes face – essentially over most of my body. The surging of pain, tingling, pins & needles, etc is so bad it causes my thighs, torso and arms to shake. My symptoms appear to have worsened in the last few months and it is severely disrupting my life.
My sleep has also been significantly disrupted by the neuropathy and also by ongoing back issues, which are both worse at night.
I initially saw a neurologist at a renowned national center who thought my condition would resolve quickly given that it had come out of nowhere and progressed so rapidly. He thought it was some variation of Guillen-Barre that would likely fade out as quickly as it came, but that didn’t happen.
I’ve tried Neurontin, Nortryptyline, Tramadol, and Cymbalta and none have been helpful. I also did a 5- day course of IVIG which had no effect. My neurologist is now out of ideas, so I am now seeing a new one who seems to be aggressive in trying to address these issues. I had an initial appointment a few weeks ago and am going back next week to hear her recommendations. I’ve had the full battery of testing done by both doctors to search for a cause but none has been found. I’ve also had 2 skin biopsies which confirmed the diagnosis. I am taking alpha lipoic acid, acetyl L-Carnitine and other supplements like a multi-vitamin, Vitamin E, fish oil, C, and CQ-10.
Now that this hasn’t dissipated and appears to be getting worse, it has turned my life upside down. I’m not sure that I’m asking for any advice, but wanted to join the community and see if anyone has ideas. Thank you.

Hello Spectrum!
 

Welcome to NT! :hug:

You've come to a great place for support and information.
This is a community full of caring and understanding people, so make yourself right at home. Look thru the forums and post wherever you feel inclined.

Holler if you have any questions or need help in finding your way around!

It's great to have you here!

Rae
:grouphug:

Hi Spectrum
 

Welcome to Neuro Talk. Don't give up as PN can get better. The vitamines you are taking are the same ones my doctor put me on. In addition, I take B12 shots. I have not gotten any worse over the last six months. Mine is local to the foot and ankle. Consider seeing a physiatrist. They deal with this kind of pain, and deal with the whole person at a cellular level. I also have a lotion I use that helps numb the areas. I hope alot of folks will join in and try to give you some good suggestions. ginnie:hug:

Great to meet you!!
 

Spectrum,

:Wave-Hello: It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:


:hug:

It's been almost a year now since the very rapid onset of these symptoms, and there's been no improvement. In fact, symptoms are as bad as they've ever been. Since my last post I've done 4 rounds of IV steriod infusions and tried various medications. I have underlying back problems but can't do even gentle PT for those issues because it makes the small fiber neuropathy go completely haywire, in a way that is completely and amazingly out of proportion to the gentle stretching being attempted by me and/or the physical therapist. It's really unfathomable. I saw a highly acclaimed neurologist in the midwest who told me 4 months ago that in about a year I'd know where I'll be symptom-wise for the rest of my life. With 8 months to go until that timeline expires, I have very intense body-wide SFN that shows no signs of any change. This is very difficult because I can't do normal things. It has basically ruined everything. Here's a very small example: I sat outside for a few minutes on Sunday, sitting in the direct sunlight with jeans and a shirt on. After a few minutes I had to go inside because the heat from the sun was causing the symptoms in my thighs and arms to worsen. How strange and crazy is that? And it was just an early spring late afternoon, not even particularly warm or overly sunny. As far as the docs are concerned, they're basically out of ideas for me. One is still trying to help me, but she doesn't really know what to suggest at this point. So what do you do when your doctors move on? Are you just on your own with this condition?

Hi Spectrum
 

I am so sorry you feel bad. I really hope you will at least try this kind of doc. I mentioned before. I don't think she would ever give up on me, no matter what my pain or problem was. She is a physiatrist. The deal with pain first, then treat the whole person at a cellular level. If your current doctors have given up, there is always hope. It took me many tries before I found a complete team that actually talks with each other. each specialist, gives the records and notes to the other physician. I sure hope you can find a team that will help you so you can enjoy life a bit more. I will keep you in my thoughts and prayers. ginnie:hug:

Thanks Ginnie. One of the docs I've been seeing, in addition to neurologists, is a pain management expert/physiatrist at a major center in the DC area. He has no other ideas for me, so I guess I'll have to find someone else. I wonder if there are others on NeuroTalk who, for lack of a better way to put it, "have what I have." This kind of non-length dependent SFN is apparently extremely rare, and I haven't really found anyone with whom to compare notes. Certainly not in my everyday life. In fact, I might be one of a handful of people at most with this condition in a major metropolitan area of 3 million plus people. Crazy...

Hi spectrum
 

:hug:Yes, move on and find another. I actually interviewed 4 pain specialists. Brought my records, a friend, pain chart, all of it. (They doc.s thought they were interviewing me....wrong....) I really did see all four of them before I decided. It was the last doctor I saw, that right then and there I asked her if she would help me.
I was due for surgery. The surgeon would NOT cover after surgery pain, , and my pain speciaist at the time would not do it either. Well...what is the patient suppose to do??????? I wound up not having surgery at all, and it was the right choice. Then I got busy and found this physiatrist. I was dejected, and scared at the time too. All I know is I got angry and really started to look hard for someone who would listen to me. Unrelenting pain can drive a person nuts. It is so important to have that team and doctor to rely on. Please continue and search for someone. Maybe even post again, where you are located. Someone on NT, may have a good pain specialist in your neck of the woods. I do care, and I remember the pain I was in too. I also found NT, because I was searching for answers. I just never left. too many good people here. I will keep you in my thoughts and prayers. Don't give up....ginnie:hug:

Hi spectrum, you are not alone, and I'm sorry you too are dealing with this. My SFN came out of the blue last October. Started w low back pain I assumed from running, but very quickly took over my body with freezing burning pain in feet, legs, torso, hands, etc. some numbness and shaking in my hands and fingers. Electric like jolts through my legs. Etc. i even had a trigeminal type attack in my face. I i have a great primary doctor and a neurologist, but we have reached the end of testing that the neuro can do to try to find a cause, with no luck. I was diagnosed through skin biopsy and autonomic testing, it has also created a bunch of issues w my sweat function, giestion and blood pressure swings with postural movements. I honestly cannot believe this has happened. I am 43, hardly ever even sick, in good shape, full time job and 2 kids. I have needed to start working from home and in a client service business may not even be feasible for long. Everything in my life has been turned upside down. The pain is just unbearable at times, and just today, I had tingling and electric like currents in my scalp, which is new. It is particularly unsettling because it means it is still progressing with new symptoms. I guess I don't have any great success story for you, but thought I'd at least answer your note as to whether anyone on here has this non length dependent variety of SFN.

There are some great links regarding this type of sfn, and work that is being done around it. Glentaj, mrs D and others have posted various links to helpful articles. I think you can search non-length dependent sfn on this forum search and hopefully come up w some of the threads. Or search dorsal root ganglia and you will get some good thrads. I'll write in a bit some of the things I have tried, and a few little things that at least make me feel a little better at times. I have an appt at johns Hopkins just to see if a different doc w a different perspective may be able to figure something out. But it's not until oct!

I hate reading about your pain, it's so unfair and as I read, I realize it sounds so similar to what I am going through. Good luck and keep fighting, it's still so worthwhile and need to find ways to enjoy life beyond this awful thing! I just keep reminding myself of all the things I feel lucky for and that are great in my life, and focus on those things. It doesn't always work, but I need to keep trying.