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Erythromelalgia, any suggestions?


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5 replies to this topic

#1 Amanda Thorpe

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Posted 02 September 2008 - 02:30 PM

Hello All

I have Interstitial Cystitis, SSc, Raynaud's and Ethromelalgia and it's the EM I am seeking advice for.

It effects my hands, feet and thighs, you can feel the heat coming off my legs as they burn and itch. My feet are either blue with Raynaud's or bright red with EM.

During an attack at night the feet can be exposed from the warm bedcovers to the cold air in the bedroom but it's hard to do with the thighs without including the calves and the hands without including the arms and shoulders!

I take aspirin and was taking low dose prednisilone which I have now stopped to avoid side effects. Any other suggestions how to manage/minimize symptoms?

The itching/burning is driving me mad and I know I am supposed to keep warm for the Raynaud's but don't know what else to do other than to expose myself to the cold during an EM attack.

Please advise/any suggestions welcome! :lol:

Thanks.

Amanda
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#2 canon

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Posted 02 September 2008 - 04:07 PM

Hi ohboyoklahoma,

I am so sorry you are so uncomfortable and hope some one can help you out.

Judy
A happy heart is good medicine.

#3 Sweet

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Posted 03 September 2008 - 07:05 AM

Hi Amanda,

I'm sorry to hear about your issues with EM. I'm going to give you a link that will discuss some treatments that may work for you. Hang in there!
Warm and gentle hugs,

Pamela
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#4 Amanda Thorpe

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Posted 07 September 2008 - 01:26 PM

:) Thank you Canon and Sweet for the replies.

Sweet the link to TEA is very useful. :)

Thanks again and take care.

Amanda
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#5 ozzy69

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Posted 08 September 2008 - 02:27 AM

Hi Amanda,

I too have IC, Bad Raynauds and I believe I also have Ethromelalgia. I am in the middle of trying to get dxed with some CTD. I have been dxed with raynauds for about 7 years. I Have it bad, but I am just like you. When they are not cold & blue , my feet and hands are hot and burning. At night I battle my covers. My feet get hot and I throw them off, then I get cold and I put the covers back on. It is driving me crazy at night. I prefer the cold over the hot, at least they go numb.

I wish I could help, but I am in the same boat.

How long have you been dxed with IC and what kind of treatment do you do for it?

Hope it gets bette
Hugs
Nina Lynn

#6 Amanda Thorpe

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Posted 08 September 2008 - 03:51 AM

Hello Nina,

Thanks for the reply.

I was diagnosed with IC in 2005 (37 years old), finally! I remember at 19 being told by a Urologist I had an "unstable" bladder which actually means "I have no idea or interest in what is wrong with you so go away because I have lots of other patients to dismiss out of hand as well."

I had instillations via cathater of Cystistat weekly for 3 months then monthly then every couple of months but how long and at what interval initial treatment is depends obviously on the individual. The idea is that once the lining is restored you go back for top up treatment when you have a flare up. Urasyst is the other drug commonly used but that did not work for me although they both rebuild the lining of the bladder which in IC becomes damaged.

I last had an IC flare up in 2006 and after a few months of Cystistat was fine again. :)

There are oral treatments such as antihistimines Atarax (hydroxyzine) and pain relief from Trammadol. I have not had a flare up since having SSc (2007) and it must be because I already take both of these as part of the SSc treatment.

You'll know what a misery it can be having to visit the ladies every 20 minutes day or night when the IC is acting up :angry: so I hope this helps you.

Please feel free to PM me if you wish.

Take care.

Amanda
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)