Erythromelalgia?

Does anyone here also suffer from this? My family doctor believes I have this as well now. I went on that forum and posted a question, but no response. I don't think it's very common. It's basically the opposite of Raynaud's. I seem to have both. My question is - what type of specialist would you recommend for this? Podiatrist, neurologist or vascular? I was given a nice list of specialists in Florida where I live by The Erythromelalgia Association (TEA). I'm leaning towards the vascular specialist at Cleveland Clinic. Any comments? Thank you. Oh, I get the symptoms daily - face and feet primarily.

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  • Yes...SNAP: my version is erythromelalgia simultaneous with raynauds, which is slightly more unusual. But the combo really does happen. My RP & EM flare in a daily cycle all year round. My feet & head are worst affected, but my hands are nearly as bad. I've had raynauds from early childhood, and erythromelalgia for at least 10 years. I'm 63 now, was born in the USA, but moved to the uk at 22 and have lived here ever since, so I'm sorry I can't help you with suggestions re USA clinics, but I've been a member of TEA for years and feel certain they'll be v helpful.

    my version of lupus is infant onset, and my other primaries are vascular ehlers danlos hypermobility & primary immunodeficiency. I mainly lifestyle manage my RP&EM, but feeling is that my daily prescription combined therapy lupus meds are "somewhat" damping the EM down.

    My EM was diagnosed by a rheumatologist whose expertise is immune dysfunction & connective tissue disorders, but I find that consultants in other disciplines sometimes are aware of RP&EM, e.g. A senior prof ortho surgeon I consulted about problems in my legs & feet is prepared to operate because he believes he can cope appropriately with my RP&EM issues whereas he believes other ortho surgeons are unlikely to be willing to cope (e.g. The chief of ortho surgery at the university hospital where I attend lupus & vasculitis clinic said he wouldn't operate on me due to my immune dysfunction & dysautonomia....but I have been operated successfully under general anaesthetic at another NHS hospital where the anaesthetists are used to giving me the special attention I need)

    I gather you're being investigated for lupus. I just read your earlier discussion on this forum (sorry I missed it, but I've been distracted lately) & I see you've also posted on the HU TEA community forum here, but do you know the TEA Facebook group...it may have an even larger following, possibly?

    facebook.com/erythromelalgia

    I hope you'll let us know how you get on

    ๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ€ coco

  • Thank you for sharing your insights and persona l struggle with this. Yes, I am being investigated for lupus, but it seems that at this point, I do not have it. The blood work all came back normal except for my total complement (CH50) being off the charts high again. My neurologist compared my condition to a connective tissue as well, but has not officially diagnosed it as such on paperwork.

    My face is aslo affected - painful and so embarrassing. I look like a have a bad sunburn and it swells. My feet and legs are very painful though and my feet turn such a crazy red if I stand too long or after a shower. It sure would nice to be able to do some normal things without the pain and redness. However, when it's cold my feet get so painful and cold that no matter how many socks I wear, they won't warm up. Crazy stuff.

    I will definitely check out that TEA group. Thank you for the tip. I hope that whatever you decide as far as the operation will be helpful and successful! I appreciate you taking your time to respond.

  • Am glad if anything i offer up can be useful

    Sounds like your medics are doing their best for you. This forum can be v helpful re feedback during the diagnostic process...regardless which country you live in, so I hope you'll let us know how things go

    Another source of excellent erythromelalgia info inc diagnosis & treatment is here:

    rarediseases.org/rare-disea...

    Take care

    ๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ€

  • Hi Goldyukr,

    Barnclown has given you some really great sources of information there, I hope that you find them helpful. Another page which could be useful is nhs.uk/Conditions/erythrome... - It also links to another HealthUnlocked community where you may be able to chat to more people who also have this diagnosis.

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