[brookevale]

Hi,

My story is a long one so I will try my very best to shorten it. It was recently confirmed through a nerve biopsy that I have severe small fiber neuropathy. I already knew this but of course you have to convince the doctors I guess. First let me start off that I am not diabetic. If anything, my sugar is low (70-90). I was very ill from 2011-2012 with Sphincter of Oddi Dysfunction, a disorder in which the pancreatic and biliary valves were spasming shut. I went from 130 lbs most of my life to 90 lbs and on feeding tubes. I nearly died and went a year before a doctor performed the diagnostic test (they really thought I was a crazy anorexic woman). I had major open abdominal surgery last year to have sphincters sewn permanently open. Two weeks later I got sepsis, had a 106 degree temp, and my adrenals failed. I was given a hefty dose of steroids and Levaquin. A few weeks later I couldn't walk. My tendons in my ankles and feet felt like they were being ripped from me. Then I developed burning painful nerve pain in my feet, inner thighs, and hands which was worse after eating.

Fast forward, all roads lead to Fluoroquinolone Toxicity. I never had a nerve pain in my life before. But, doctors won't confirm this and there is no cure/treatment. Today, my tendons are better, but every time I eat my feet burn and throb to a 7-8 out of 10 on the pain scale. I have tried Lyrica, Neurontin, and Cymbalta. They did nothing but give me terrible side effects. I went through the horrible withdrawal of Cymbalta recently and am now on a different gabapentin drug, Horizant. I think it helps bring pain down to a 6 (whoopee). I see a dozen specialists and none can get to the exact nature. None of these dopes will prescribe pain medication either. The neurologist wanted to apply Qutera patches (prescription strength Capsaicin) but it turns out they are $1500 and I have a prescription max so that is out. Next is to see about a nerve stimulator. Anyone have success with this? I am so angry I can't get pain relief. I have spent thousands of many we don't have on acupuncture, hypnosis, supplements, naturopaths, etc. Lidocaine patches do help a bit. This is so depressing and scary!

[ginnie]

I am sorry your doctors have not done much about the PN. Ketamine cream also has some relief, maybe better than the patches. Lidocane patches are fine until you go to pull them off!,
There has been a lot said about the drugs that can cause PN. I have no doubt that is what did it for me. I go to a integrated physician, who has done much to get me in a better place.
You have to find a doctor willing to think outside the box to help you. I am here to listen anytime. ginnie

[St George 2013]

I totally understand about not being able to convince dr's of anything. I had to ask for a skin biopsy to confirm my SFN. Mine is severe also.....0 and 0.06 a and c fibers.....nothing left but the pain. I'm shocked someone won't give you pain meds. They supposedly don't help much with SFN and true...they don't actually stop the pain but they do help me mentally I guess. Hard to describe. I take 1/2 a vicodin 4 times a day. A whole one makes me 'high' and I really don't like that feeling.

You can buy Capsaicin cream at the drug store and it seems to have helped many people on here. I used it for 4 weeks as suggested to me by my foot dr prior to diagnosis. He said it would burn....nope....nada....no burn...no nothing

My only treatment so far is that I'm up to 1,800 mg of gabapentin a day. I don't think it's helping but who knows ? Pain could be worse without it.

I had one visit to a pain dr I really liked (but didn't go back because his office was extremely dirty) and he said with SFN as bad as mine is the only thing that actually might help would be a neurostimulator. There is a site on here for that and you should read a lot of the posts. It has been most helpful to me.

We all understand how frustrating this can be and will be here to support you whenever you need it.

Debi from Georgia

[brookevale]

Deb,

Did you get the neurostimulator? How do I find the threads where people have had them for foot pain and had success?

Thanks!
Brooke

[St George 2013]

Hey brookvale.....if u go down to the bottom of the page to the forum jump on the right.....just scroll down until u see SCS and Pain Pumps or something to that effect....I just looked at the darn thing....short term memory loss is really short for me....lol

I had one pain dr say that I needed to try the neurostimulator and not try upping the gabapentin or trying the other 2 drugs for SFN. But I didn't go back to him because his office was dirty...freaked me out. I'm seeing my neuro for the 2nd time tomorrow.....I've had the skin punch biopsy since the last time I saw him so we'll see what he recommends...doesn't mean I'll do it.....

Keep me advised and read back through the pages and pages of posts on SCS's.

Debi

[Darlene]

brookevale,

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 situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene