Iam soo soo happy that I found this site! I have recently been diagnosed with SFN and just feel lost. I have a wonderful family and though they are very supportive, they just don't understand the pain I feel on a daily basis. Not only the pain, but all the medications that come with it. It will be nice to interact with others that can help explain to me what is going on. I look forward to many conversation with you all. My first question is: does this ever get any better? There are days that are better than others, but it never goes away. I've had this for about 5 yrs and just found the diagnosis 2 mo ago, and it seems to be getting worse, actually so bad that my Doctor talked to me about going on disablility. I don't think Im ready to do that yet, or at least mentally. My family and co-workers have told me to do what I think is best for me, and right now, I really don't know. I have it in both feet, legs, arms, hands and now going to my face and head. I guess I just keep thinking that it will someday go away. Is this just wishful thinking?
Thank you for your input.
Hi Tinabb - So sorry you have joined the SFN club. That must have been a rough 5 yrs not having a diagnosis. SFN can vary so much with individuals--some people work (for many years with SFN), others don't. You don't say what is bothering you the most, whether it is the pain, the numbness, or something else, and also what type of work you do. I hope now that you are diagnosed you are getting medications that work for you for pain control. You are lucky to have a supportive family and co-workers that will support whatever decision you feel is right for you. Don't let the doctor talk you into not working if you want to continue working, and on the other hand if you feel you can't work, don't feel bad about collecting disability. I have only had SFN for 2 yrs now, so have no way of knowing how I will feel after 5 yrs. But for now I am happy and doing all the things I have always enjoyed. I am fortunate to still have a high level of energy (some with SFN don't), so that helps a lot. I don't let fear of the future paralyze the joy I can enjoy right now. Best to you, and I am sure you will make the decision that is right for you. - Ruby
Hi Tinabb - It's me again, Ruby. Sorry I didn't read your post carefully the first time. In rereading it, I see that you are experiencing a lot of pain. There are many meds and combinations of meds that can be used for neuropathic pain. Your neurologist or pain management doctor should work with you to find the combination that works best for you. Maybe you have tried different meds and combos, but if not, something else might work better for you. Also, you may be able to find a neuropathy support group in your area, which can be a great resource for learning about local doctors, meds, etc. Do keep posting here as it helps all of us to share information. - Ruby
Thank you Ruby.
It has been a very frustrating 5 yrs, to say the least. I have been through so many tests that I got to the point that I didn't care if I had a dx or not. I just wanted relief. I do have days that are better than others, but is always there, never gone. The sx I have are pain, burning, tingling, numbness and sensitivity to hot and cold, muscle weakness and now tremors, that I notice are getting worse. I think it might be from some of my meds though. I actually work in healthcare. I am able to sit and stand when needed, am so thankful for that as far as pain management, its kind of hit and miss, but for the time being, and because of my work, I usually suffer through it and really dope myself up at night.
Again thank you and do look forward to your friendship.
I also take Cymbalta, which has no effect on my functioning during the day. Instead of Lyrica, I take Gabepentin (300 mg twice a day). It made me groggy in the beginning, but that effect subsided after a bit. Between these 2 meds, I am pain free most of the time. Now if they could come up with a med to restore the sense of feeling in hands and feet.- Ruby
Thanks for the info, but yes I do take cymbalta, 60 mg twice daily, along with: 300 mg Gabapentin in the am and afternoon and then 600 mg at bedtime, 200 mg Lipoic Acid in the am and 200 in the pm with B complex twice daily, and vit c twice daily, ambien to sleep, and just started 2 wks ago on Methadone 5 mg at night. I also get gout and take allopurinol. Estrace (estrogen) and multi vit , lovaza which is prescribed fish oil. So my doctor is trying a few diff ways to find what works for me, and right now these seem to be working ok, but like I said before, some days are better than others, Like today for instance was just absolutely bad, pain really bad in my face and arms and hands, my legs and feet aren't too bad. and I have some really funky stuff going on with my stomach it feels like a knot is in it, I woke up yesterday with it and its not going away, feels like something is being blocked. Probably all the meds I take, wouldn't surprise me any. I also didn't mention that I have had the testing done for the dx, like punch bx, and then the sweat test, that was quite involved. I have also had the testing done to see what the underlying cause, they checked for Antibodies, cancer,FABRY disease, and amyloids which all three test were neg, I was told by my neuro/muscular that I would have to go back to my reg doc to disscuss pain management options, that this is a progressive disease and that they would keep me in their files so if new research comes available they will call me. I went to OHSU for my treatment, and this is a place that they have been doing alot of the research that you read about, along with John Hopkins and the Mayo Clinic. I feel very fortunate that I am so close to a place like this. I do now think the biggest help to us all is finding the right doctor or doctors to manage us, not only physically but mentally as well, you know I have read a couple of these posts , and people really do get upset when they are told that they need to speak to a counselor, but try to remember, that most of our family and friends and even doctors really don't understand what we are really going through.
I hope this all makes sense to all of you. I m getting ready for bed and have the meds on board.
Talk to you later.
Hi everyone. First of all I'm not diagnosed with SFN... yet. My doctor's oficial word is "sequels of an idiopathic Pure Motor Neuropathy" As you may know idiopathic = no body knows what caused it.
Reading TinaBB's post I can see that she is taking a lot of the "right stuff" for neuropathy issues, and still has some days up some days down. Pretty much like me. In my case: MRI, Blood Works, EMG, NCV, pretty much everything but a nerve/skin biopsy or that sweating test that's used to DX SFN too.
In any case she's still looking for the underlying cause of the SFN(just like me). Being this, pretty much the only real chance to get a cure.
One thing that intrigues me, both from her case and from many other SFN sufferers is this: I read both in her posts and in some replies that SFN is always progressive, and that you will get paralyzed.
And many of this information comes not just from the patients but from the doctors that treated them, many of them as well informed(because of the treatment they gave) as Tina's doc seems to be.
So, after much reading on my own there are some things that I can't digg yet:
1. If you can find the underlying cause(for the lucky ones), and if it's not something progressive itself, like Arthritis, SFN should be, if not curable, at least stoppable. Right? Because my impression on the replies is that SFN is a slowly but surely date with oblivion. Where the only Peripheral Neuropathy that matched that in my many readings was CDIP, and even this could be at least slowed down.
2. On the paralysis stuff. I learned that small fibers don't include motor function(controlled by large fibers), so the paralysis you're talking about comes from the total loss of sensorial function which translates into the inability to move/walk, or that SFN cases do involve large fibers too(motor neurons). I have read that "pure motor issues" often have Small Fiber components and viceversa, but I wanted to ask anyway.
On a side note I have both large and small fibers involvement, the first one confirmed through EMG/NCV test, the last one because of my symptoms, but no doctor named, suggested or tried anything SFN related.
3. Finally, if the neuropathy ends being idiopathic, as most cases in here, judging for the treatment that Tina is trying, I can't see that much difference, from some other people diagnosed with pure motor, or non-specific neuropathy cases. So, in this case what's the difference in being diagnosed with SFN or not. Is there something else that doctors consider, give,or expect? and on top of this. Is there something that can help further(like stopping progression) when SFN is diagnosed?
4. Tina's symptoms seem to come and go in some way(again correct me if I'm wrong), pretty much like me(I mentioned this before). Is this a common behavior in SFN or not? Because from what I've read, many people has at least one symptom/body region that is constantly and permanently affecter.
I took out the pain, which I believe that is the most common symptom, because I'm aware that it's an ever present symptom, and as it is in any kind of pain what works for someone doesn't do the trick in somebody else, and viceversa.
Hi Tina - I did start sublingual B12 (includes Biotin and B6) a few weeks ago, not at my doctor's recommendation since my B12 levels are "normal," but because Aussie has said that maintaining higher than normal levels of B12 has helped him. I don't recall anyone other than you mentioning Vitamin C for neuropathy. Perhaps I am wrong on this. You and I seem very similar in our SFN and the meds we take for it, except my meds control the pain, and also, my symptoms don't fluctuate from day to day. My SFN has been progressive from day 1, with the numbness in my hands and feet increasing as time goes by. By the way, you mentioned taking Ambien for sleep because your meds don't control the pain. I've never tried Ambien, but have heard from several sources that it lingers into the next day making you groggy. Before I was on meds for pain, I took Temazepam for sleep, and I highly recommend it -- no next day hangover.
Stargrave, here are my understandings of some of the issues you raise. Doctors looks for the same causes of neuropathy, whether it be SFN or the demylienating, long-fiber type. So if you are ideopathic, there is no need to look further for a SFN cause. Actually, I wouldn't bother with the punch test or any other SFN-specific test if you have demylienating neuropathy anyway. The meds used to treat the symptoms of pain, burning, itching, etc. are the same with any type of neuropathy. Regarding disability, I don't believe pure SFN leads to immobility, as a person's strength and muscle coordination aren't affected. And, I think it was you who referred to a scientific paper that said many people with SFN don't develop motor involvement, i.e., there long fibers don't become affected. I continually hope that will be true in my case. I am learning how much one can do with their hands even without much feeling--you just have to watch what you are doing as you can't feel light tough. One downside to SFN above the symptoms it shares with long-fiber neuropathies, is the intestinal organs and heart can be affected by SFN. I suspect the diarrhea I expeience is SFN related.
This board is great to share information. If anyone spots an error in my assumptions about SFN, please post. I, like all of us, am constantly learning about this disease.
First off, I have tried tiazipam (SP) didn't work for me, the ambien has been a God send for me, since you can't get addicted to it. and does really help me sleep, I didn't have the next day hangover, but do on the methadone that I just started on about a month ago or so. the gabapentin I was taking 1200mg at night and am now taking 600mg, and I just started taking 2.5 mg of Methodone, and cymbalta, so it is helping, but I've also tried to stop taking the Ambien and just tossed and turned all night, I though my legs were going to fall off. So there's the same old story about what might work for some doesn't work for everyone. Vit C, not sure, but I think because it works with the lipoic acid and b complex. I guess I need to search that one a little more.
Someone talked about being paralyized, I haven't heard this yet, not sure if I want to at this time, but better now than later. So if you have more info on that I would like to know thanks.
I have read that SFN do not lose motor function nor do they become weak. This is just not true. I did talk with my doctor about this and he told me that that yes over time it will start to decrease, like already I can't go up or down stairs without my legs shaking so bad that I have to have my husband stand in front of me so I don't fall, and then going up he has to push me up. If I sit too long my legs hurt so bad that it takes me a few min just to walk. I am or was a very active person, and I just don't understand this. I also get horrid cramps and hard round knots in my legs and arms, my husband uses a (don't get the wrong idea) lol but he uses a vibrating massager on my legs and arms. It works so nice. He works swing shift and gets home a midnight and usually Im in bed, and he knows when Im tossing and turning that Im having a bad night, I might not be aware that he's even using it. But it does help alot. I am looking into some home devices to use and help ease the pain.
If you do not have a diagnosis of SFN then you really should get the dx if nothing else but for disability if someday you are needing it. But also if something is underlying they can correct it. Like Stargrave said earlier they are truely the lucky ones. I do keep hoping for more research and someday a cure. I know we all have our own horrible stories, but I just feel robbed. I m only 44 and a grandmother of a 1yr old and one on the way due in April. I feel so blessed that I have my family, but I don't want to be such a burdon to them, this all just scares me so much. Now I do really know how my patients feel, and trust me, I do emphisize with them, when the doc is trying to tell them that they need some mental counseling. Yes I do realize that it does help cope, but at the same time it makes people feel "crazy" like its just in their heads. and then you have the ones that are just drug seekers, but I seriously can say I haven't met anyone with our conditions, yes Peripherial Neuropathy is very common, and so much easier to dx, and is usually most of the time caused from Diabetes Mellitis. So I guess I could go on and on. But its getting late.
Thanks you all
Thanks Tina for all the info you gave in your post, and I send along many hugs to you. It is so surprising how different we all are and how different our reactions to drugs can be. Maybe the Temazepam worked for me because I wasn't in as much pain as you are; for me it worked so well that it was like turning off a light switch, as they say, I was out like a light.
It sure burst my bubble when I read about your difficulty with stairs. I, like you, had read that SFN in itself doesn't affect motor function and strength, and so far, for me that has been true. Guess I should appreciate today even more knowing the possibility of becoming incapacitated in that way in the future. Think I will research this aspect further. Anybody else here have ideas on this aspect of SFN?
I remember reading one post here in which the person with SFN had severe muscle cramps like you are experiencing, and her doctor added one more med that was specific for cramps to her usual list --it helped. Wish I could remember the med so I could tell you, but you might want to ask your doctor.
Have you heard of the spinal cord stimulator? A man in our support group did a trial period with it and was so satisfied that he had it implanted. I haven't heard his latest news since then but will pass along what I hear about it. Like you, he was trying to get away from using so many meds.
Thanks again for posting, and I will be thinking about you and wishing you pain relief. - Ruby
Every case took in deep contributes with extra info, treatments, possibilities, or at least the comfort of knowing that we're not alone dealing with this.
Yes you're right in the fact that SFN should only affect small fibers, and not motor ones, where the main issue, besides pain and numbness, is the fact that the other small fibers in the body control autonomic functions like digestion, hear rate, temperature control, and such, and they could be affected in time. That's why there's a "sweating test" that helps for diagnosing SFN.
Mainly some variants like GBS, clearly show both small and long fibers affected, but unless your neuropathy affects both kinds of fibers, like it seems to be my case, in SFN you could find muscle weakness and wasting, but it is secondary to inactivity, which is induced by pain(which can be exhausting),exhaustion itself, that keep us in bed or similar and so on.
Supposedly, correct me SFN people if I'm wrong, muscle twitches, muscle weakness and wasting(primary), and paralysis, are not common ground of SFN.
Hopefully we can find a cause, to rally treat it someday. Till then, best luck to all.
Hi Stargrave, I also have SFN and my take on it is that it's a condition I will always have.Some days are better than others,but my life has certainly changed since I was diagnosed.I used to be much more active.I just can't do a lot of things now. I've learned to live with it. My Neurologist recently changed my medication from
Neuronton to Lyrica,and that was helpful. I don't feel as loopy and out of it as I used to on Neuronton.It also helped with some of this nerve pain that I have in my legs. I'm afraid there is no easy solution . I am also very glad to have found this site. There is so little information on this condition that it is extremely helpful to share our experiences .
It's hard to deal with something so hard to diagnose and to treat, even as it is not considered a life-threatening condition, at least not as an immediate emergency.
But it sure is a life changing one.
I've been dealing with this since January, and as many people in her might have experienced doctors try just to keep up with what seems an invisible enemy.
Without being of any comfort to the diabetic neuropathy sufferers, if they can control their sugar levels, there are great chances at least of controlling progression of the disease. O even in a slowly progressive condition like CDIP there are treatments like IVIG shots and steroids shots, that can even improve condition from not being able to walk to be quite functional.
Being diagnosed with SFN(I'm not), or any other kind of neuropathy, under the "idiopathic" label, means that you can only hope that some treatment nails at least something that could control the terrible symptoms we have.
I'm under a relapse? new episode? a normal process of recovery? that's giving me extra pain and symptoms. My doctor is trying to mix and/or switch between Neurontin and Lyrica, but I do know that this is just an experiment that, if successful, will control my symptoms for a while at least.
CDIP, Muli Focal Neuropathy, Pure Motor neuropathy, not SFN though, amongst other wild guesses to name what's happening to me. Pain, twitches, numbness, weakness, burning, you name it. Everything motor and sensorial is there, fortunately not(knock on wood) a sign of autonomic issues, common in SFN I believe.
Have being tested for almost every possible cause in the book, even a contrasted brain MRI ordered not because of the neuropathic symptoms, but because a rhythmic thumb twitching, which has got loose during my actual crisis, and they cataloged it as a clonic movement, which is different to the random, widespread muscle twitching I got everywhere else.
They found NOTHING, besides a slightly low Immunoglobulin A count which didn't startled any of my doctors. That have included: Internists, neurologists, pharmacologists, cardiologists. Their main bet is an autoimmune process but since nothing came out clear they didn't want to try IVG shots or strong doses of steroids, because they could cause me more damage than good since my symptoms are "mild", whatever that means for them.
Their actual main concern has been, in order of times mentioned: My high lipid counts(just detected last year), and my way off the charts anxiety, which I have much more under control now, or at least I believe so. Taking Rivotril for anxiety and pravastantine for lipids, which makes my symptoms worse(I believe that is a common side effect).
Recently I gained some weight, and became less active. Maybe because of the disease itself, that's exhausting in my case, maybe because of the medications, maybe because I have take shelter in food, Who knows?
I know that, unless I really can't do it, it's better to stay active, because of the cholesterol, because even in SFN, the lesat you use your muscles they do waste, not by the disease itself but because of the inactivity, but exercise somedays makes me fell really tired and aching, as some other I feel better after doing it.
I can sense a disease progression, but my last NCV showed actual recovery in nerve transmission, at least in the motor ones which this test measures.
Is there a chance to recover from motor issues and to get worst from sensory ones? I have more twitching everywhere, which is actually a motor symptom, more pain(I believe), cause I didn't even have pain when this struck me first, not even after my first EMG which showed the motor issues.
Finally, it's really hard for me to tell if is my illness, a medication's side effects(sometimes I feel like a zombie), anxiety, or something else. This junk behaves so strangely...
I know I'm not the only one, and believe me that, whatever I can do to contribute for others to get better like Aussie has done with the Alpha Lipoic Acid recommendation, amongst other stuff, I'll be the happiest guy on earth. I really hope we find some real answers, and effective treatments soon.
Sorry for the ranting, but today was one of those days... Where you have so many non-neuropathic issues to deal with, and you have your symptoms so high, that you just want to find a corner where to hide and rest for a little while.