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.

Thanks so much for responding and describing your experience. Would love to compare notes. One of the hardest things is that someone with all this looks almost completely ok, while underneath things have gone so terribly wrong. So you're on two parallel tracks. On one, your life has been turned completely upside down. On the other, you look fine and you're trying to stay at your job and act normally around others when you're in extreme, unrelenting discomfort that no one else can see, let alone understand. So it's like a particularly cruel form of invisible torture that you deal with alone.

That is so well put. It is one of my biggest challenges. I seriously considered circulating a description of SFN around my office, so people would see that's it is real and the symptoms, though crazy, are real. everyone says I look great, no external indication, except for the fact that I can barely wear shoes and almost always have wool socks on because i find that the air actually hurts my ankles.

I also did the steroid infusions with no success, so it seems we may have tried all the same things. Warm weather has been the one bright spot for me. I went to Mexico w my family for spring break, and I felt much better, not sure if there is any medical reason for it.

Can I send you a PM so we can discuss more? (If I can figure out how to do that on here :-)). Glad you were able to get away and have a little fun.

Yes, but I do not know how to do PM either, but hopefully if you figure out how to send, I'll figure out how to get it!

A Compassionate "Ditto"
 

Spectrum and Ginnie...
Thank God for this website, right? Otherwise, we'd be even more alone. Of all the crazy, unthinkables to happen. It did to me, too. Two lines from your posts struck me: "I honestly can't believe this has happened" and "Unfathonable pain." And because you otherwise look "normal", no one understands that your "normal" is a mask hiding unmerciful pain. How could anyone understand this? So many times when I've dared to open up and share with someone that my whole body burns, I get this look like, really? Your whole body? Hmmm, that sounds awful. Yeah, it's really awful... and, really, truly, honestly, it's my whole body. I'm not crazy! My story began with my waking
one night with my feet and calves buzzing, tingling. In the weeks to follow, unusual paresthesias and burning pain engulfed my entire body, including my inner mouth, tongue, gums, throat, inner ears... crap, even my eyes have a burning sensation. I think you, Ginnie, referred to the electrical "zingers" in your scalp... thanks for sharing that because when it happens, it makes me feel like I'm having a stroke or something. All systems NORMAL on CNS testing though (thank goodness) but always leaves me wondering if yet something else is happening.
I wonder if any one or both of you could share the wording of your SFN biopsy results that diagnosed the non-length dependent neuropathy? Did it say anything about axonal swellings? Mine seemingly was triggered by a virus I had, but the doctors can't say for sure. I choke back tears all the time while clinging to the hope that, one day, I will be well again. Hope can be a scary thing when faced with such an unknown as this, I know... a fool's prayer or an expression of enormous faith. I choose enormous faith (most of the time). Please, let's try to stay Neurotalk buddies to encourage and just dump on.:hug:

???
 

Hi, Spectrum and SFNgirl... can't see that my length post "posted." Did I attach to a PM somehow? Because I can't see the thread I responded to either?
Thanks

I do see your post above. It sounds like you're in the same boat as us. It's truly unbelievable. It's very hard to have hope when you see no improvment and your doctors can't give you even a short or medium term prognosis. Mine were confident early on that all of this would dissipate, because of the way it came on so quickly. They thought it was probably the unfortunate result of some toxic reaction to platelet rich plasma and prolotherapy injections I was receiving for some back issues, and that it would likely resolve. Now it's about a year later, and symptoms haven't resolved and are probably worse. And as you referenced, it's a very cruel thing because you're going down two parallel tracks that no one else is aware of unless you tell them. On one track, your life has basically been ruined, and that's not an exaggeration. On the other track, you look relatively normal and have to try to act "normal" and continue on with business as usual while you're in agony every minute. That dichotomy is enough to drive you nuts, and I think at some point those two lines intersect and you have to leave your job, etc.

Also, I don't know exactly what my biopsy reports said, just that they confirmed the diagnosis. I had 2 biopsies done about 4-5 months apart. I'd have to go back and look, but it probably won't make a lot of sense to me regardless.

By the way, in response to Ginnie's post, I'm in the Washington, DC area if anyone knows of a pain management doc here who might have experience with rare and complex cases - a last resort type doc who you see after everyone else is out of ideas.

Just a thought....
 

Hi, again... You mentioned that you were receiving "platelet rich plasma". Did they run blood tests for all viruses that could possibly have been introduced via the blood therapy? Hep C, B and parvo virus b19? The virus I had shortly before my neuropathy started was parvo virus b19... though it is a very unusual manifestation of the virus. Usually, it's more extreme joint and muscle pain, though I have that, too. Yes, nerve, muscle and joint pain... I'm quite a mess. I mention it because it is a virus that can harbor in the bone marrow and does have something to do with blood platelets (though I'm not sure exactly what). I don't want to send you on a wild goose chase, but it is a thought. For a year my neuropathy was labeled "idiopathic" but I relentlessly brought up the parvo virus b19 and asked for retesting a year and a half later because I just had such a hard time accepting that the virus and the sudden onset of neuropathy couldn't be related. I also had severe gastrointestinal problems and sudden significant weight loss, so for a while a paraneoplastic syndrome was being considered and tested for.
I am taking gabapentin and have recently added 10 mg. nortriptyline... hate taking it all. It makes me feel like a zombie and really only takes the edge off the pain. But, otherwise, I'd be incapacitated and I need to participate in life still! Though, I've gone from a very positive, happy person... not without struggles, but certainly NOTHING like this... to just managing to "get through" the basic responsibilities that I have.
I'll be sure to check this site a little more often to get your updates and to share.

I had a full slate of tests, and no cause was found. The PRP was from my own blood, so I'm not sure about the possibility of a virus from that, but I'll ask my doctor about parvo. I know exactly how you feel regarding your symptoms, the mental challenges and being on the edge of incapacitated (while appearing outwardly to be healthy). It's very difficult to handle, and the fact that a person looks almost completely "normal," while dealing with an invisible system wide breakdown makes it even more challenging on a daily basis. I really couldn't imagine many things that are worse.

Hi, weighing in to my SFN buds. I agree with everything you say. Its just awful. I feel i am constantly talking myself into just stiff upper lip, and i dont want to be a drag to people or chase people away from me. So i hear myself basically lying, trying to say im ok despite full body pain all the time

I did not get the actual report of the biopsy. they actually said 2 different things from the biopsies (at foot and upper thigh), one, that I had reduced nerve fibers in my sweat glands and two, the actual epidermal nerve fibers were still ok. They then sent me to autonomic testing which further confirmed nerve damage to my autonomic nerves (abnormal qsart and tilt table readings). Along the way, I was also diagnosed w trigeminal neuralgia by the ER but my drs are now inclined to think it was related to this SFN. As for the non length dependent piece,my neuro had that description on my last visit summary, and I do have full body, face, scalp, etc symptoms. but I never read the actual report.

I'm planning to go to johns Hopkins next but honestly not expecting any miracles, maybe a new perspective will have an idea of what caused this. I had a strange viral thing twice, 3 and 4 years ago, in 2 diff states w diff doctors, and each ended w no clear diagnosis but a suspicion of viral meningitis. I keep wondering if that was connected somehow but so long ago seems tough. I also had an extensive gum graft 4 months prior to symptoms, but again a long symptom free gap to imagine a festering issue.

Oh, and one more thing. Heb1212, I'm intrigued by the weight loss comment you made. I too have lost a lot of weight. And my doc just did a paraneoplastic panel which has been sent off to a specialty lab. He also ordered CT scans looking for malignancies, which were normal thankfully. He is also looking for rare autoimmune, which has been his theory all along, but steroid infusions did not help. I have had the postural light headedness for as long as I can remember, and he thinks that could have been a red flag, though others say could also be simply that im tall with low blood pressure...I haven't seen others mention weight loss though, and I'm not sure if it is the stress or the meds (that all warn of weight gain) or maybe some combo.

I've lost weight too, because I changed my diet as a result of not being able to exercise, or really to do any physical activity aside from walking without inflaming the SFN. But maybe that's something to look at too. My current doc thinks mine is rare autoimmune too, and that it somehow morphed into that and took on a life of its own after a toxic reaction to the platelet rich plasma injections and prolotherapy I was getting for some back problems. But the IV infusions haven't really helped me either.

Vibrations
 

Hi, SFN Friends... I have another question for y'all. I'm sitting here this morning with a vibrating sensation through my whole body. I have this pretty much all the time, even in my torso area. Do any of you get this? Also, any other odd paresthesias, crawling, tingling, in addition to the burning? Cold temps (air conditioning in the summer) provoke my nerve symptoms something awful. I can't even sit and watch my kids outdoor sports events because it's just too painful.
Thanks for your responses. Believe it or not, I went to bed the other night feeling just a BIT better knowing that I had connected with people who could sympathize in a way even the most compassionate of my friends and family can't... there's just no way to truly convey how difficult this is. After nearly two years of this, I have resigned myself to taking more medication. Spectrum, my doctors, too, felt it would "idiopathically" go away (ha, ha) as it had come on so fast... so, I thought every day thereafter was a day toward healing. The emotional rollercoaster of looking for improvement, never experiencing it... in fact, getting worse... has taken it's toll on me.
Proverbs 3:5-6 is my hope when all else seems hopeless.
"Trust in the Lord God with all your heart. Lean not on your own understanding. In all your ways, acknowledge Him, and He will make your path straight.
Do not be wise in your own eyes. Fear the Lord; shun evil. This WILL bring health to your body and nourishment to your bones.
Blessings...

I have all of those symptoms too. For me, heat is worse than cold. Direct sunlight from sitting outside or even driving aggravates the symptoms. It's absolutely crazy and unreal. So what do your doctors say now about your prognosis?

Re: Prognosis
 

Hi... Truth be told, I don't ask because I really don't think they know. Maybe I just don't want to hear. My small fiber biopsy results showed me at the very edge of abnormal but with axonal swellings. I've read on this site that others who have had far more significant nerve fiber loss have recovered, but only after significant time. Not too many with it body wide, though, so that puts us in a different category, I think. The unknown is so scarey, right? I guess the idea of having this forever is so unfathonable that I sorta chose to believe it will get better... I have to. Knowing that, in any event, I'm in it for at least the long haul, doesn't have me looking for change tomorrow. Are you taking any medication to at least take the edge off? How do you sleep at night? A stranger, yet I so feel for you.:hug:

Hi SFN-ers, yes, I get the weird vibrating, not all over body at same time. Either feet and legs, hands, and now have had in my scalp and upper lip. It's almost like electrical current. I also get a very weird feeling in my legs, I guess crawling or maybe it's how people describe restless legs. It's something in my legs I cannot reach by rubbing them, like a painful tickle, does that sound odd? I have found recently, I periodically finally just take a Vicodin because it seems to take the edge off a little, or maybe it just takes my mind off it. But I really try to avoid that. Though my pain management doctor says they prescribe it for a reason, and if in tremendous pain, to take it. Problem is I really don't think there are very good alternatives for treating nerve pain.

Oh, and, the cold is a terrible trigger for me. I wear wool socks and slippers everyday, cannot even have my feet and ankles in the cold air, even inside at room temp. Air conditioning vents are horrible. I am actually much better in the heat. Do either of you get toe and finger discoloration? My toes periodically turn bright red, like a fiery stripe across top of foot. Sometimes more of foot too. And finger tips go from white, to deep purple. Lastly, no prognosis from my docs, just say they don't know since they don't know the underlying cause, but have led me to think it won't go away.

My forearms get really red, but that's about it. As far as medication, I'm taking 100mg daily of Lyrica right now, and that's it. I didn't think higher doses were helping, and I don't want to take medicine just to take it. I'm not taking anything for sleep either. My symptoms are very bad during the day but even worse at night, so it's hard to get much sleep. From what I've read, agree that opiates don't seem to help much with nerve pain, so I really don't know where that leaves us. But I can't imagine dealing with this forever. And it's very worrisome because my symptoms have worsened over the last month or two, and it's been a year since this suddenly came on and turned everything upside down. I just ordered R-ALA, Benfotiamine and acetyl--l-carnitine supplements. Maybe they will help a bit. I tried R-ALA and Acetyl for about a month at the beginning of this but stopped because I didn't see any impact. Maybe they need to be taken for several months before making a good assessment. One thing I need is a good pain mgt doctor to coordinate with the neurologist. My neurologist is basically trying to do everything herself, and she needs some help. But again, I don't know whether there are actually any viable pain mgt options for this.

me too
 

I too have the same symptoms.
it feels like Icy hot has been injected into my feet and lower legs.
Cant sleep do to this.

I was just tested for Paraneoplastic syndrome. The panel came back negative but positive for N type calcium channel AB.

I dont know how it can be negative for the over all panel but positive for a key marker like that.

Anyway it tool my doctor almost a year to order that test.
you might want to suggest this to him/her.

I am very scared and can not get anyone to tell me what this could even possibly mean.