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Re: SFN Questions.
Mar 16, 2010
[QUOTE=daisymaegrif;4205580]Hello stargrave
You are experiencing the frustrations and pain of an affliction that does it's best to confound most of us who suffer with it. It is my opinion that it confounds our physicians as well!
My SFN is auto immune, related to my RA, as one of the two neuro's I have seen has diagnosed. I have had EMG's, an MRI of my spine, a CT scan of my lumbar area, acupuncture, B12 injections, reflexology( incredibly painful!), many strange potions to rub on my feet and countless trials of medications. I am no further ahead today than I was when I first started seeing doctors because of this, 5 years ago.
My days are all pretty much the same, but I know from others that some days can be not as bad as others. So what you are experiencing, the ups and downs are all probably consistent with the unpredictability of SFN. Some feel that weather can be a big influence.
I could list the number of medications I have tried, the list is long, but nothing has helped. Lyrica, Neurontin, Cymbalta, Elavil, Nortrityline, Lamactil, etc, etc...
The cost to me has been amazing.
The one way to confirm SFN is to have a punch biopsy done, but this was not offered to me as my neuro was sure I had SFN and this test would have been costly.
The many faces of SFN is indeed extremely hard to contend with. Most of us have gone through denial, struggling and finally accepting.
I really hope you get some answers. Please share with us what you find out. That is the only way we have to help each other. Come here and vent if you need to. We all have at one point or another!
Best wishes, Daisy[/QUOTE]

Hi Daisy, thanks for your reply.

This is a tough as nails cookie, that even when it's diagnosed, it's quite hard to deal with.

Add the anxiety caused by this junk, and you're in hell.

Now my anxiety is as big trouble as my neuropathy, add to this the fact that most of the medications used for both conditions have their own sorts of issues, from side effects, to withdrawal stuff... It took me three years to conquer vertigo(another ugly son of a gun), and two days on amitriptyline got me back to dizzyland.

I asked how does everyone is doing because I didn't started with pain, I really started with numbness, some burning sensation and weakness. then the pain came in, and well you know the drill.

Fortunately for me, I've managed once to get rid of it with B-12 and Clonazepam, and because of my doc telling me that it was better for me to change from benzos to SSRI's, I got myself in trouble again.

I'm even going to check on the shrink to deal with this, because, both me and my doctors detected a pattern... That took me several times to the ER room. Even before this junk got me, obviously, because anyone experiencing any kind of neuropathy has all the rights to run to ER every time he/she wants to, period.

The thing is that, one of those trips was when I began my treatment, and I was numb, and in some pain, but when my fake hear attack got me, i was so scared that I "forgot" my neuropathic symptoms.

So it could be typical of SFN unpredictability, or I'm worsening it with my anxiety, or my SFN is a "little one", or I'm just simply mad...

In any case, the punch biopsy should be a standard, and also a more affordable test, that could save us a lot of time and anxiety.

I hope someday we can achieve a real cure from this, or at least something to manage it to a "I can get on living without wanting to die" level, to carry on.

Best of luck in your quest, and a painless day for everyone.





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