Erythomelalgia

[Roselda]

Hi, I would be very grateful for any help you can give me regarding Erythomelalgia. I have all the symptoms from above my knees down to my feet. There are times when I get the feeling of freezing cold or the feeling of burning hot. I have Scleroderma (tight skin and restricted movement in my joints.) Has anyone any advice or has been given meds. to help. I don't see my Rheumy until February and I've still to convince him that there's this problem. Thank you

[EOLHPC]

Hello roselda. I was diagnosed with simultaneous raynauds & erythromelalgia in 2011, although i’ve had raynauds since early childhood & the symptoms of erythromelalgia began in the late 1990s. Am 64 and my primaries are systemic lupus & hypermobile ehlers danlos.

The best info i’ve found re the diagnosis & treatment of eythromelalgia is at this official link:

rarediseases.org/rare-disea...

There is a facebook support group i visit sometimes:

facebook.com/erythromelalgia/

Wishing you every best wish

🍀🍀🍀🍀 coco

[Roselda in reply to EOLHPC]

Hi Coco, thank you for your reply and the link for Erythomelalgia which I have read. Have you had any treatment and did it help? I would be very interested to know. Have a good Christmas. Roselda

[EOLHPC in reply to Roselda]

This is vvvv hard to explain...basically, intensive moisturising several times a day (feet & hands & face) is key...i use shea butter from l’occitane. Also i am exteremely careful to wear layered clothing inc footwear i can strip off & add back on 24/7. I think my combined lupus meds damp the EM dosn a bit, and i know i’m licky my RP/EM are secondaries not my primaries...because secondaries tend to be more responsive to lifestyle management.

Inavoid vasodilators like nifedipine: even 3 days in this made my EM permanently worse, but my rheumy is trying me on low dose losartan now as an alternative to IV illoprost because my RP really does need treatment...so far this is making th3 EM flare, but not as badly as nifedipine did...and my RP does seem to be respinding positively.

Basically: no 2 cases are totally similar...and my feeling is that EM info on the official rare diseases website is BRILLIANT: am gkad you’re reading it throughly...really this is about trial & error, both re self help techniques & prescription treatments...as you can tell from this document, EM is NOT well understood by anyone yet. Wish i could be more help...good luck

[Roselda in reply to EOLHPC]

Thanks for the information. I think my EM is secondary to my Scleroderma as my skin is very tight and may be restricting the underlying vessels. I have also read that asprin helps and also cutting out dark blue fruits and I eat a lot of blueberries. I moisturise continually because of my skin condition and I'm hoping I can get my Rheumy to take notice of me in February. I'm grateful to you for taking the time to reply - hoping for a better New Year. Regards, Roselda

[EOLHPC in reply to Roselda]

Sounds spot on! Seems to me you are v well informed, self aware and proactive. Am sure you’ll find a regime that really helps. Wishing you a Merry christmas & happy healthy 2018 XO