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Old 07-20-2004, 02:05 PM   #1
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rekha HB User
do I have PN? or RSD?

Hello to everyone. My name is Rekha. I am new to this board. I thought I would check this board out and get some input from some of you because my dr's are starting to doubt I have RSD and so am I....I dont know if that is good news or not...because then it means I have Peripheral Neuropathy bodywide....and there is not cure for either.

let me explain my 6 months of descent into burning hell !

February 2nd 2004 I found out I was pregnant after several years of fertility treatments...I broke into a new pair of orthotics since I suffer from plantar fasciitis and was worried the extra pg weight would aggrevate my foot pain. Well two days later I started experiencing burning pain in forefront of my foot...my podiatrist suggested over the phone that I ice it....since cortizone shots are contraindicated in pregnancy...well....the icing made the burning worse and worse it spread up my leg and to the other leg!! to my arms hand.....my body got chills! At the time I thought I must be losing it! my family and dr's didnt belive me....I was so cold at nights...I couldnt even take a shower I was so cold the burning pain was so horrible I couldnt sleep...The dr's ran test after test....

I knew I wasnt crazy...I went to a pain clinic....and the dr told me I had the begninnings of RSD. (i lost the baby in march)

however now the Dr's are not so sure anymore...they think I might just have some sort of poly neuropathy...

I know RSD can be spread by ice. can neuropathy be spread by ice? have any of you heard of such a thing? I have severe burning pain in my eyes and scalp and head.....all over my body really...I cant even imagine living my life like this forever.

 
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Old 07-21-2004, 06:15 PM   #2
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sugarleaf HB User
Re: do I have PN? or RSD?

Hi rekha

You mention doctors and tests. Have you seen a neurologist yet? Also what tests have you had ?

No I have never ever heard of neuropathy being caused by ice.

I look forward to hearing from you

Take care, Jake

 
Old 07-24-2004, 03:11 AM   #3
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Join Date: Jun 2003
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riceneuroni HB User
Re: do I have PN? or RSD?

Hi rekha.

I'm so sorry you lost the baby. My deepest sympathies are with you.

I started with RSD a couple years ago and when it spread the doc's renamed it neuropathy. The spreading seemed to be the defining point between the two as well as the pain level. The pain was worse when it was all contained in my left foot and ankle. As it spread, the pain seemed to diffuse a bit.

Now the good news - I'm all better. I did it through research and trying everything everyone said worked for them. You'll find lot's of folks on the web telling folks how they got better. I believed every one of them and tried their advice figuring if it worked for them it might work for me. But it took LOTS of research and hope on my part.

What finally worked for me was getting on a strict diet and swimming. I'm not overweight, I'm talking about a diet that cut out foods known to cause ailments - wheat, yeast, and dairy mostly. Look into gluten intolerance. It can cause malabsorption and that can cause body-wide pain like yours. Not too many things can.

Talk with folks who support your efforts to get better. The others can be a real downer - in your personal life and on the web. Even my doc's laughed at me for trying to find my cure because they actually believed it was hopeless - they've stopped laughing. Good luck and keep us posted on what you're trying.

 
Old 07-24-2004, 12:06 PM   #4
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TUBA HB User
Re: do I have PN? or RSD?

Hi Rekha

I have RSD in my upper body, and I have polyneuropathy, mine is called painfull small fiber neuropathy, in my lower body. My dr seemed to be happy for me it was not the RSD spreading to my feet after the QST -Quantitative sensory test which told her what was going on in my feet's
The RSD is "complex"- because it is affecting blood, skin, muscle the sympathetic nervous system which controls our internal system"- and what we feel all the time PAIN.

The pheripheral neuropathy is painful or to some numbness or no feeling at all. And it can be diabetic- check your sugar-levels. It can be lack of B12- have you had this checked? And Gluten-intolerance (Celiaki?) And for me it is probarly from hypo-thyrodism.
And yes RSD can spread from ice due to vasoconstriction and sympatethic something, I am not a DR., but have read alot and do not remember it all,sorry.
My feets is oversensitiv to cold, and this is from the destroyed small fiber nerves. So you see there is a difference here.

Hope some of this make sence to you

I can't really tell you what it is in your situtuation, but do the research and ask your dr's.


 
Old 08-24-2008, 03:46 PM   #5
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viewdapro HB User
Re: do I have PN? or RSD?

Hi,
first of all my sympathy for loosing your baby.
I have had burning feet 2 months ago htat I had to dip my feet in ice off and on for 12 days until doctors believed me that I have so much pain and I need to be admitted for pain control. I've been on dilaudid iv pump for a couple of days to be able to fall asleep.
I am home now and just a little bit better but I am in pain all the time and have already tried neurontin, lyrica and I take a good dose of oxycontoin. Now I take prednisone as the last resort for SFN. It did not spread.
I am so tired and lost weight and muscle from not moving.
I have no appetite.
I wonder, and no doctor knows, if I've caused or made this worse with icing my feet. They told me I had first degree frostbite.
I've been in denial that this may be permanent but now I\'m realizing that the pain will last a long time and I want to get my strenght back.
I just wanted to know how you are now after a few years and if you found out anything new and if you think the ice made it worse. Thank you! Rae

 
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