Erythromelalgia/Mitchell's disease

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Hi I am a 34 year old and was diagnosed 2year ago with Erythromelalgia. I was wondering if they was any other suffers of this horrible un-researched disease. Has anyone ever even heard of the disease. As they is only a few doctors know of it. I feel so alone and with no treatment management and certainly no cure, I finding it hard to except and deal with.

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  • Posted

    Hi

    Yes I have Primary Erythromelalgia

    I was diagnosed back in 2007.

    Feel free to ask me any questions you may have

    Viv

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  • Posted

    Hi Donna.  I have just noticed your post.  I was diagnosed recently with erythromelalgia by a vascular consultant.  He has prescribed Nebivlol (beta blocker) and an antidepressant that helps with pain called Duloxatine.  I have taken the Nebivolol for 3 nights now and will continue with this alone to see if I get relief from the burning toes.  If not I will add in the antidepressant to see if a combination of meds will help.  I think you will definitely need treatment to get relief from this awful condition.
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  • Posted

    This condition is aggravated by warthm, on ambulation with closed shoes, under bed covers.  It is due to excessive vasodilation (widening of the blood vessels) in the toes and feet.  The buning pain episodes may las for minutes or hours, or remain constant for a long period of time.  

    Relieving factors: wear open toe shoes, exposing the extremity to cool air, ice water or elevation may help to provide some relief.  However, symptoms may response to taking an Enteric coated Aspirin  325mg twice daily.  Do not take any aspirin if you have an history of GI bleeding or GI ulcers.   

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