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pinnygig

Anyone else have Erythromelalgia (EM)?

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Hi all,

 

There are so many overlaps but I haven't seen anyone else mention this. Although it's likely my clinical diagnosis will ultimately be Scleroderma, it's still UCTD as far as I can make out. However I do have EM (it was responsible for everything else finally being treated with some degree of seriousness instead of the usual fobbing off of weird symptoms).

 

:flowers:

 

Pinnygig

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Hi Pinnygig,

 

I do not have erythromelalgia but I have thalassemia minor. This is microcytic anemia which means my erythrocytes are small and not of full capacity. Iron is sufficient but hemoglobin is not. Therefore I have developed compensation in number of them. My blood picture shows always more than 5.6 million erythrocytes. I have had this for more than 20 years and I believe it is not related to my colagenosys. It is hereditary but I do not know anyone in my family to have that. I am special!

 

Best regards,

 

Erika

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Hello Pinnygig

 

I have erythromelalgia, basically blood vessels over dilate and you get that lovely burning and redness in the feet, hands and/or legs. You can actually feel the heat coming off my legs when I am having an episode. Bizarrely you can have EM and Raynaud's and indeed I have both! I take an anti depressant that has really helped reduce symptoms which of course is great!

 

Take care.


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)

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Hi Amanda,

 

Wow! Hi! I've lived with EM for about 15 years and wasn't able to get anyone to listen to me until I happened to have a flare when I was at the doctors for something else. That's what finally led to the rheumatology appointment and subsequently the piecing together of all the other problems I've been having.

 

I too have both EM and Raynaud's although my Raynaud's rarely goes to the blanching level. The EM is much worse as a general hindrance than the Raynaud's. Isn't it strange how strangely comforting it is to share with someone who has the same?

 

:VeryHappy:

 

I had an episode of anxiety depression for which I was given Citalopram. I noticed that a side effect appeared to be the lessening of my EM symptoms. I've actually gone back onto it purely for that effect now. Is that the same anti depressant you're on?

 

Pinnygig

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Hello Pinnygig

 

Yes I also found that my EM was worse than my Raynaud's and that my Raynaud's seems to be much milder than most, I wonder if it has anything to do with also having EM? Might ask my rheumatologist next time round!

 

Take care.


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)

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Hi

I also have both EM and Raynaud's, for me my Raynaud's was the worst but during the last year the EM side of things has got worse. So I either have dead hands or they're bright red and burn! I also take an anti depressant for it.

 

Buttons

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