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Author Topic: A bit more about neuropathy  (Read 1931 times)

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Online Jeff G

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A bit more about neuropathy
« on: February 24, 2010, 09:21:46 AM »
Since the early 90's I have lived with a mystery pain problem . It started in my feet and legs and was diagnosed neuropathy . I was told I would have it the rest of my life but after about a year of horrible pain it went away most of the time and was manageable . A few years later  I started having pain in my arms , hands and  chest accompanied by muscle cramps all over my body in places you would never think a muscle cramp could strike . The pain was mild to severe and intermittent .

I was told it was depression and sent to a shrink . I have have seen at least a dozen doctors and specialist who never could find anything to treat . Last week I went to yet another neurologist and was finally diagnosed with small fiber neuropathy . Small fiber neuropathy does not show up with nerve conduction studies and is considered some what hard to diagnose .

I thought I might share this with everyone who may suffer from what I have come to call galloping pain syndrome . 

Offline Miss Philicia

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Re: A bit more about neuropathy
« Reply #1 on: February 24, 2010, 09:39:19 AM »
Interesting.  I have some sort of neuropathy and take a (somewhat) smallish amount of neurontin daily for it, but 6 months ago I went through a good six weeks of totally different pain where it was suddenly like a drill going through my ankles from one side to the other.  It was intense and excruciating, to the point where I finally emailed my doctor.  I was going to schedule a whatever-they-call-it test but then magically the pain disappeared and hasn't returned (meaning the drill sensation, not what I had previously).

I've had other instances of non-neuropathy events where something definitely rises to the level of needing to do something, then I go to a round of specialists and they can't settle on what's going on and then 6-12 months later it all just vanishes and never returns.  It does make it difficult to know what to attend to and what to try and ride out.
"Iíve slept with enough men to know that Iím not gay"

Online Jeff G

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Re: A bit more about neuropathy
« Reply #2 on: February 24, 2010, 10:19:28 AM »
Thanks miss p . Despite my low key post on this topic I have simply been through hell for years with this issue . I'm shocked that so many very qualified doctors never mentioned the words small nerve pn to me before . I was told neuropathy doesn't jump around or go away .

I have tried neurontin along with antidepressants and anti seizure meds. to no avail , they just do not work on me . When you experience pain that cant be diagnosed your mind can go to some pretty dark places . I have been convinced I'm dieing of cancer or some type lymphoma or even a heart attack .I have spent thousands on co pays trying to figure this out in the past . I have been taking Oxycontin when the pain is really bad but I refuse to take it every day and become dependent on it again . I have accepted the fact that I will be dealing with pain the rest of my life but it helps to finally know why I hurt .       

Offline weasel

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Re: A bit more about neuropathy
« Reply #3 on: February 24, 2010, 10:41:06 AM »
Hullo there !
                   Well I am glad to see I am not the only person with roving pain !

              My I.D. doctor just tells me it is in my head !

               Sometimes I want to hack my foot off at the ankle !!!!!!!!!!

               It is like being whacked  with a hammer !

               I know this pain is real !

              Thank you both for  confirming this fact !

                                   be well , Carl
" Live and let Live "

Offline Miss Philicia

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Re: A bit more about neuropathy
« Reply #4 on: February 24, 2010, 10:56:01 AM »
Thanks miss p . Despite my low key post on this topic I have simply been through hell for years with this issue . I'm shocked that so many very qualified doctors never mentioned the words small nerve pn to me before . I was told neuropathy doesn't jump around or go away .

I have tried neurontin along with antidepressants and anti seizure meds. to no avail , they just do not work on me . When you experience pain that cant be diagnosed your mind can go to some pretty dark places . I have been convinced I'm dieing of cancer or some type lymphoma or even a heart attack .I have spent thousands on co pays trying to figure this out in the past . I have been taking Oxycontin when the pain is really bad but I refuse to take it every day and become dependent on it again . I have accepted the fact that I will be dealing with pain the rest of my life but it helps to finally know why I hurt .       

If it feels anything like what I endured even for just a short time, I really feel bad for you.  Like lots sweetheart.  It must be excruciating for you.  I hope that you're on the road to getting it a little sorted out.  Keep us posted.
"Iíve slept with enough men to know that Iím not gay"

Offline Hellraiser

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Re: A bit more about neuropathy
« Reply #5 on: February 24, 2010, 11:11:34 AM »
Have the doctors ruled out Fibromyalgia?  Extremely difficult to diagnose and supposedly very painful.  A friend's mother has had for years and it's basically so painful she can't concentrate on anything else most of the time.

Online Jeff G

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Re: A bit more about neuropathy
« Reply #6 on: February 24, 2010, 11:23:55 AM »
I have been told its may be fibromyalgia before but it was later ruled out for some reason I cant recall .

I almost didn't keep my appointment with the neurologist last week , its always been a dead end . I started off my usual speech by telling her I know what I'm gonna tell you doesn't make medical sense but please hear me out .... She smiled and told me all of her hiv patients with small fiber neuropathy say the same thing to her and added most doctors don't recognise it a form of neuropathy .

The last doctor who told me it was all in my head was not amused when I snapped well then remove the head .   

Offline denb45

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Re: A bit more about neuropathy
« Reply #7 on: February 24, 2010, 01:31:19 PM »
My neuropathy  comes on go's it's worse in the winter w/ the cold it's really bad after an hour shopping spree at my local Wall Mart super center, after that off comes my shoes, as a matter of fact being on my feet for more than an hour, is a bad fat No no for me, as I will most definitely suffer the fate of my neuropathy , I don't take anything for it, I've tried everything thur the yrs. and it's just something I live with, it's ALSO a part of my Disability as well  ???  I hope you can at least get around this, as it sounds very painful for you, lot's of love & hugs for you  :-*
« Last Edit: February 24, 2010, 01:34:42 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline BT65

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Re: A bit more about neuropathy
« Reply #8 on: February 24, 2010, 03:50:58 PM »
Hey Jeff, wow, I'm so sorry to hear you're going through such agony.  I have intermittent intense pains in my hands, sometimes in my hips (I don't know if hips would have anything to do with it).  I hope yours will calm down, and let you get some peace.
  Luv and  :-*
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Online Jeff G

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Re: A bit more about neuropathy
« Reply #9 on: February 24, 2010, 08:31:44 PM »
 Thanks for the kind comments . I will deal fine with this I know because I already have for so long . I learned a long time ago what ever was causing the pain wasn't going to kill me .

Offline BT65

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Re: A bit more about neuropathy
« Reply #10 on: February 25, 2010, 11:00:07 AM »
Love your avvy!  That's a beautiful dog (and the owner's not bad either ;)).
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Miss Philicia

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Re: A bit more about neuropathy
« Reply #11 on: February 25, 2010, 11:35:49 AM »
(and the owner's not bad either ;)).

Not shoddy at all for a ole Bama Lady.
"Iíve slept with enough men to know that Iím not gay"

Online Jeff G

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Re: A bit more about neuropathy
« Reply #12 on: February 25, 2010, 02:04:36 PM »
Why thanks ... y'all gonna make me drop my magnolia bloom and blush

Offline aztecan

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Re: A bit more about neuropathy
« Reply #13 on: February 26, 2010, 12:20:58 AM »
Why thanks ... y'all gonna make me drop my magnolia bloom and blush

Why, I do declare!

My PN has been kicking my butt the past few weeks, and its affecting both feet and now my hands as well.

Oh well, sh*t happens.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Online Jeff G

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Re: A bit more about neuropathy
« Reply #14 on: February 26, 2010, 01:57:09 AM »
I hope you feel better and get some relief mark .

 


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