Having been through a fair number of doc appointments since this began in January (realize there are those of you who've been doing for a lot longer), and m about ready to jump off this merry-go-round.

Sorry for probably repeating myself, but I was unable to tolerate the usual suspect meds (gabapentin, Lyrica, etc.).

So - does anybody here honestly know whether or not there is anything other than those meds that will take the edge off small fiber sensory neuropathy?

If there isn't, then I'm done paying co-pays if neuros/rheumys can't do anything else for the SFSN and things stay stable. About mid-way through this search, I had a pain management neuro tell me, quite honestly, that he couldn't help me. He didn't keep taking my money, and I appreciated that.

Thanks,

Sheltiemom

Have you tried Topamax, Amitriptyline, Tizanidine, or Cymbalta? I've been on all those except Cymbalta.

..."If there isn't, then I'm done paying co-pays if neuros/rheumys can't do anything else for the SFSN and things stay stable. About mid-way through this search, I had a pain management neuro tell me, quite honestly, that he couldn't help me. He didn't keep taking my money, and I appreciated that."...




I understand... I have lousy insurance this year. We are required to pay 20% of all laboratory, x-Ray and hospital bills after our $3,500 deductible was met. It really adds up. We have so many expensive lab bills (like two from Athena Labs).

I am having a bad arthritis flare right now so I went to my Rheumy and, of course, he ran the gambit of labs, including all the autoimmune tests (since my AI disease is "undifferentiated"). That can get rather pricey.

Well, he did something to help me. He discounted the cost of my labs by using his cost for the lab tests, rather than the lab charging me their cost. Not to go into too much detail, apparently the doctor gets a 'wholesale' price on lab tests.

I appreciated this. He is being aware of the costs to me, which is rare - for a doctor.

That's lousy? I'd like to see your idea of great insurance. We pay 20% of everything--and I have absolutely no income, so lots of places and collection agencies coming after me--yay.

Hi,

Thanks for the above replies/suggestions.

It's not about the money itself. It's about leaving appointments with basically nothing to show for it. If there had been, fine.

Or if I'd been told right away by the first neuros that there isn't a whole lot that can be done for non-length dependent SFSN, but they didn't. They just never scheduled a follow-up appointment after tons of tests were done and after they were told I couldn't tolerate meds. I should have taken the hint.

Am wondering if there is anything under the sun that might help stop most of my clothes feeling like burlap. Non-length dependent small fiber sensory can be difficult at best and impossible at worst.

As to some of the meds mentioned here, am not willing to make the trade-off because of being very susceptible to side-effects which can happen in older people. Lyrica made me feel as if my head was spacing out, and with gabapentin could not focus my eyes.

Sheltiemom,

I was in the same boat you are. I just CANNOT tolerate all the meds mentioned. My Neurologist put me on Xanax as a last resort and that was the ticket. Later, she switched me to Klonopin. I have had no ill effects from either one other than a tad bit tired from time to time. And I think you are right about older people. I think we DO become more sensitive to the side effects as we age. And especially so after menopause. Anyway, you might ask about it. Xanax was the ONLY thing that helped. And that was after a few years of trial and error. One thing though, benzos are difficult to wean off of if on them for a long period of time. So, just know that going in.

Thanks a lot, Kathi -

I'll research Xanax and Klonopin and decide whether I want to give either of them a shot. If so, will ask my primary at next Wednesday's appointment to Rx.

Remember, all you have to do is pay $1 per month on a bill to show intent to pay. If it takes forever to pay, it takes forever to pay. I have personally been through piles of medical bills costing us thousands and thousands of dollars over the years. I have had numerous surgeries and illnesses. I do understand...

to sum it up there is no one medicine be it pain killers, anti depressants, anti convulsants that will work for everyone for pain. There are also no treatments such as anodyne therapy, electrical therapy, cold laser therapy, nerve release surgery that will work for everyone either. The main reason to try to find your cause is if you can you may be able to treat it or control it and thereby slow down or even reverse your neuropathy. If you are at the beginning of the PN journey and throw up your hands and say there is nothing that can be done you are doing yourself a great disservice. There are some of us on here who have had most of the possible testing and still nothing was found as far as a cause goes. At that point you have to come to terms with it and do what you can to alleviate and make the best of the symptoms. What i see on here lately is many new people who have only had pn a short time already throwing up their hands and saying why try, there is no cure, no treatment that works, no medicine for me, some doctor told me there is nothing to be done. You may have something that is causing it that can be controlled or reversed and you really owe it to yourself to make the effort to find out if you do.

With over 15 different places coming after me and no income, I don't even have $1 a month for them.