SFN Pain Relief??
 

I have had this pain for 4 years now, and am getting now where. I had originally has surgery on both my ankles thinking it was tarsal tunnel...Now to find out I was diagnosed with Small Fiber Neuropathy. I have been tested for everything to find out the cause, they have no clue..I have been on every kind of medicine, and there is NOTHING that is giving me ANY relief. My neurologist will not give me any type of pain medicine and I am afraid to go to a regular doctor for fear they will turn my away due to me already being seen by a neurologist. I am currently taking 2 25mg lyrica pills a day plus 800mg ibup and tylenol but I am getting no relief. Does anyone have any suggestions on what to do? I am 36 yr old and I dont know how much more of this I can take..I can barely stand to be on my feet at all and they ever hurt while I sit..I am in the process of going thru disability but am being told I will be denied due to my age and being able to do a job while not standing 8 hours a day...ANY help would be appreciated!!

If you've tried all of these to no avail, I don't know what else to suggest, but on the off chance you may have missed a couple:
http://www.ccjm.org/content/76/5/297/T1.expansion.html

According to the table, the amount of Lyrica you're taking seems a bit light.

Doc

Never been on Lyrica,but I find that the neurontin helps with the burning, buzzing, and zapping pain, not so much the deep soreness or the really bad pain in the late afternoon and evening. Most of us seem to be on ome other kind of painkiller for that breakthrough pain. For me it is the "I can't stand it anymore" or if I really have some work that has to be done. I take a low dose oxycodone, but I know the day is coming when I will need something stronger, or 24/7. My doctor has tried to move me to a butrans patch, but for now I prefer only taking something when I really need it, although I realize this strategy results in higher pain levels than are necessary.
My experience is that neurologists do not like to prescribe pain meds, and prefer your family doctor do so. You need more pain relief than you are getting. Ibuprofen is useless for nerve pain unless you also have arthritis.

One reason for this is economy (in the patients favor, for once). Controlled pain meds require periodic visits to check up/monitor. Office visits to PCPs cost less/have lower co-pays than to specialists, and specialists often "cut patients loose" if there's nothing further they can do for them (other than writing more scrips). PCPs also act as coordinators between specialists, so having them write pain scrips is a way of avoiding duplications/doctor shopping.

Doc

I was relieved to hear that this is not just my experience. I felt rejected by my neurologist when she told me there was no need to continue coming in every year, as if I had somehow been a bad patient. We had a good relationship and I trusted her, also I found her reassuring given the progressive nature of the condition. I left the office that day in tears, barely able to drive the short trip home, and was depressed for weeks. But it does make perfect sense. There is no treatment and she said she would feel like a charlatan for continuing to see me. I am sorry for hijacking the thread, but this comment meant a lot to me.

I have been on neurontin, cymbalta and now I am on lyrica. So far no luck, none of them seem to be helping the pain at all. I have tried the licoderm patch and the tens unit and no help there either. I was being seen by my orthopedic surgeon before he finally ran out of things he could do for me and sent me to my neurologist. My neurologist seems to be giving up on me already after only seeing him for a few months already. I am getting worried that there will no longer be anyone who can help me and then I am on my own with nothing. I am lucky tho that my pain in mainly in my feet only and some in my legs but nothing like whole body pain like some have. It's just so frustrating knowing what you have, but not knowing the cause..I had the full blood work done and that all came back normal--had the skin biopsy done, that did come back showing that I did have SFN. My Neurologist is in the process of refering me to Mayo, but I'm wondering if they can even help me?!?!

Likewise. I usually only quote the pertinent parts of a post I'm responding to, but this one is different; the entire quote is relevant.

I was "cut loose" (and that was the exact phrase used by two of them) by all three neurologists I saw re my PN. One told me I could "check in once a year or so if [I] want to, if it makes [me] feel any better about it." I wanted to smack him.

This is probably quite common with PN cases deemed "idiopathic". The neurologists order a bevy of tests based on their preliminary workup, and may order more follow-up tests depending on the results of the first batch. If/when they can't/don't find a good reason to go further, they cut us loose rather than ordering more and more obscure (and expensive) testing. A line has to be drawn someplace; where and why is where the debates begin. The Liza Jane Charts/Spreadsheets have been of help to many people:
http://www.lizajane.org/

Many doctors do feel bad about not being able to help us as much as they'd like to. Here's a candid admission from one doctor's point of view:
http://www.medpagetoday.com/Blogs/21266?

There may not be a cure, but I'm more hesitant to say that there is no treatment. A tenet of medicine is that if you cannot treat the disease, treat the symptoms, and that is often the case with idiopathic neuropathies, albeit success rates still vary. I was told that treating my symptoms was all they could do for me (hence the "cutting me loose" part) but I've been through similar ordeals before (with Crohn's/IBS) and I beat that. Lots of homework (maybe more than some of the neurologists have done) can make a difference, including finding this place (NT) and other websites/articles/discussion boards.

What has worked for me will not necesarily work for you or others, but what has worked for some others here has likewise not worked for me. Gotta keep on plugging and being your own advocate. They handed me a scrip for gabapentin (which I had been on before for other neuropathic pain and hated it.) I found (from here) that R-Lipoic Acid worked better for me than gabapentin, and (on my own) that adding pantothenic acid (vitamin B5) helped even more:
http://www.diabeteslibrary.org/View....ntothenic_acid
There are a few other vitamins & supplements that are helping too, but long story short, I've effectively halted my PN's progression (for the time being, anyway), and I think I'm even getting some slight improvements (which can take longer). There are more examples in this STICKY Thread:
http://neurotalk.psychcentral.com/thread43699.html

Hang in there (don't give up/in). Read. Learn. Try. Share.
Cuss the cliché - We're all in this together!

Doc

Mayo may not be the best option
 

I have had idiopathic full body neuropathy for more than a year now. Fortunately the pain is mostly under control with Cymbalta, Lyrica and 10 mg Oxycontin twice a day. When my neurologist ran out of ideas he suggested a teaching hospital nearby. So did my PCP. However, my wife, an RN, wanted mayo. It was a mistake. I was warned by my neurologist that the mayo clinics were "revenue motivated.". I found that to be true. The neurologists there do not know more than other neurologists as far as I can tell. They gave me a "diagnosis" that was a description of my pain symptoms and suggested treating the symptoms with the meds I was already taking. Go to some place like Hopkins, the Clevland clinic, or similar. I wish you luck and hope you find relief.

I'm in the same boat--I've tried the usual pharmaceuticals, supplements, Lidoderm patches, etc, and nothing has given me relief. Recently, a doctor asked me to consider a spinal cord stimulator, and so I am. Have you looked it to that option? If not, look here: http://neurotalk.psychcentral.com/fo...ysprune=&f=118

I can't tell you it works as I haven't gotten one myself yet, but some people with PN have had good results. For the life of me, I don't understand why this option is hardly ever mentioned--I had never even heard of it until a few months ago.

If all else has failed ask your dr. about lamictal. After being misdiagnosed and mistreated for years a dr. prescribed lamictal about 10 yrs ago and it's worked wonders for me, without any apparent side affects. For all practical purposes I was disabled at the time from this condition, but not since then.
lamictal works through a different pathway from other meds so you may look into it. It's an anti-seizure med but if you dig a little deeper you'll find it's been found to be effective for sfn. It was just a stab in the dark that it was even prescribed to me. It may not work in every case but it was a game changer for me. I'm new to this site but hopefully my experience will help someone else. Good luck

Hi I did try Hopkins. I did not find out anything new. Same symptoms, suggested same meds I was already taking. Told me possible Sjogrens and sent me on my way. Told I could come back once a year to see if my antibodies tested positive. My neurologist can do that for me. I think I actually ran into one of those docotrs that if they can't fix you they don't want to be bothered with you. The nurse practicioner I saw in neurology at Hopkins was great, as was the GYN. I see doctors in the suburbs were I live. I think I'll stay with them. I really trust them but kept looking for an answer. It turned out that no one could give me any different answers from my docs here. Just a lot of guesses. hopeful

I, too, was sent by my neurologist to Johns Hopkins on the slight chance that they might find something. The neuro there was extremely competent and thorough and they did a skin biopsy and a 2 hour EMG/ NCS. Lots of blood tests including some of the Athena genetic tests. Diagnosis was the same, progressive length dependent small and large fiber neuropathy, moderate to severe, with pinched nerves and muscle loss, probable CMT type 2. They said I could pursue more tests, but that there was no treatment beyond pain relief and nothing they could do. Hopkins is wonderful, but even they don't always have an answer. Sometimes there isn't one.

I feel for you, Maquoketa
 

Can you get a referral to a Pain Specialist? Preferrably from your Orthopedic doc or whomever did your surgery. My experience has been that they may be hesitant to refer because in 'their' eyes, it might reflect the work they've done on you as 'failed' or something. :rolleyes: yeah.

imo a person shouldn't have to jump thru all these hoops to get decent pain relief. Try stressing to him, or your PCP that your quality of life is in the pits.

I hope somebody comes thru for you soon

Rae

I've had an Idiopathic, progressive, sensory, symmetrical, polyneuropathy for 11 years. My PCP and neurologist tried every off-label drug in the chronic pain pharmacopeia. Finally they sent me to a pain clinic. This is where you need to be, at least until you can manage the pain on your own rather than allowing it to manage you. Once you have the pain under control, your family doc may be willing to take on the regular prescription refills with occasional Pain Clinic referrals as needed. One thing you need to understand, and I still struggle with this myself, is a cause may never be found and you will probably always have some degree of pain, all day, and every day. That being the case, you and the docs are left with comfort measures. For example, Lidocaine ointment rubbed into aching feet can tamp things down to a tolerable level. Having failed the normal pain management drugs, the doc at the clinic prescribed low-dose Methadone as a long-term, maintenance narcotic at the lowest clinically proven therapeutic dose. This allows plenty of room to move over the next 30-40 years before I find myself shuffling off this mortal coil. I use a short-acting narcotic for the inevitable break-through pain. Even so, I still have days when I don't want to walk very much and life pretty much stinks. Doesn't mean there aren't some good days here and there. Hang in there--you can eventually arrive
at some degree of acceptance of an unchangeable situation once you manage the pain.