$64 Trillion Dollar Question
 

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.

becareful of the dosage....our kidneys are not as efficient as we age, liver either....so sometimes we "build up" a med.....perhaps lower dose, farther apart....

Xanax and Klonopin are not standard treatment for PN and I strongly advise any one considering taking this to realize that the discontinuation syndrome is absolutely HIDEOUS! I have been thru it, and it is awful, I would never have taken it, had I known the suffering that one must endure to get off of it....and, just like opiates, one must up the dose periodically to have the same effect.

Also Xanax has a 4 hour half life leaving one to experience withdrawal every 4 hours if not medicated....and klonopin has an 80 hour half life, so when going off of this drug, you don't even know what is in store for you until 80 hours into your wean. If you think neuropathy is hell, wait until a wean!

The other thing about klonopin is due to the 80 hour half life, depending on how it is dosed, blood levels can get very high.

Basically gaba, Lyrica, and maybe an opiate is the best they have right now....anticholinergics just make sicca much worse.

Yes, there comes a time when we have to accept what we are stuck with.....that is pretty much where I am at. I have some undiffereniated connective tissue garbage, with neuropathy.....or the other way around.

wether it is small fiber non length dependent, or large fiber length dependent or any other type of PN there is really not a lot we can do to get better except to try to mitigate the cause if we even know what it might be. examples such as sugar control for diabetics and eliminating exposure to the toxins which cause PN in a toxic cause come to mind. If not and even in those cases we can only provide a favorable environment for the damage to abate and to maybe even regenerate. Diet, supplements, stress relief, exercize are some of the things we can do to provide that favorable environment. Have you tried wellbutrin? That was neglible in the side effect department for me and helped with the pain to a great degree. i also had side effects in memory and concentration i couldnt live with with neurontin, lyrica, paxil etc. I found great pain relief also by using electrical therapy such as interferential therapy and even tens. There is though pain involved which nothing touches for me not even when i was under anesthesia for an endoscopy. i have large fiber sensory motor axonal PN by the way.