ERYTHROMELALGIA advice: I've found another good link

[Barnclown]

Hello all. Ever since my diagnosis in 2010, I've been trying to keep up to date on info about erythromelalgia (the burning syndrome). over the years, I've been suggesting here on forum that the Erythromelalgia Association website & Facebook page are probably the best place to go:

erythromelalgia.org

facebook.com/erythromelalgia

But recently, I decided to check out what wiki has now...over the years, I haven't felt the info there was all that helpful, but GOSH 😀 it's improved recently...and I'd recommend anyone managing erythromelalgia takes a look via this link which includes REALLY REALLY good up to date explanations & advice re treatment:

en.m.wikipedia.org/wiki/Ery...

Maybe some of you have been there recently too?

Wishing you all the very best with your EM...am almost glad summer is drawing to a close...my erythromelalgia is simultaneous with raynauds and this summer has been one long nightmare 😨 of bedsocks + leg warmers + sandals + bare feet + loads of shea butter moisturiser all within the same 24 hours according to which of the 2 conditions is flaring at which point in the day...

[soul22]

Thanks for sharing this ive been expericning burining in muscles tendons for some time my diagnois is uctd and fibro arthritis.

[Barnclown in reply to soul22]

You're welcome soul. I think the burning in muscles & tendons you're describing is familiar to me too. My impression is that there are quite a few conditions etc that can give various types of burning sensations.

the burning we get with erythromelalgia is very specific & idiosyncratic, tending to be in the feet primarily (and some of us get EM burning in ankles, knees, hands, face, ears). I've seldom found this described as well as in this wiki link...and also the various treatment options are also v well described.

[windless22 in reply to Barnclown]

Hi thank you for replying,

I get burning in my feet,hands knees face and sometimes ears.

are there any tests done to confirm this erythromelalgia?

i also have raynaunds syndrome yes the wiki link was very detailed.]

[Barnclown in reply to windless22]

Sounds as if yours could possibly be EM (Erythromelalgia)....but I'm not an expert

my impression is that there are no widely accepted diagnostic tests : the wiki section on diagnosis says there are no specific tests available, but mentions microscopically observed capillary density etc.

My impression is that diagnosis boils down to finding a rheumatologist who is experienced in EM, and actually willing to take a shot at diagnosis. My simultaneous RP (raynauds) & EM was diagnosed clinically over 5 years ago by a rheumatologist who is on various lupus specialists lists, so he should have significant experience of autoimmune issues. (I didn't continue with him...only saw him that once). He seemed to base this diagnosis on physical examination, my GP's observations and my photos.

Over the past 5 years, this diagnosis has been corroborated by my own research and more importantly by various other medics, including a top expert in CRPS (a famous UK prof ortho surgeon surgeon) I was referred to by my Pain Consultant for CRPS in my right forefoot. The other corroboration has been in the way my RP+EM responds to lifestyle management & to my rheumatology treatment plan.

NB My case of CRPS was complicated, due to the complexity of my long term multisystem autoimmune conditions including simultaneous RP & EM co-existing with the CRPS (the EM wiki link does. FAB job of differentiating between CRPS burning & EM burning....I know the diff, because I've got both types of burning and am well aware of their characteristics, having lived with severe cases of both for 10ish years)

Sorry for going on at such length: I've given you this detail to kind of illustrate the complexity of both EM & CRPS diagnosis....I'm hugely impressed by how well this complexity is explained in the wiki EM article

Am wishing you all the best with this...I guess that, if I were you, I'd start by reading the wiki info over again several times (my husband found it hard going...I've read it 3x and sort of feel I've got it now) and also read some of the erythromelalgia association website info...plus I'd go to the EM assoc Facebook page and chat a bit there about diagnosis (all those links are in my post above). Also, if you haven't already, visit the HU raynauds & scleroderma community forum here, where I've met up with several other EM patients over the years and found chatting helpful. Meanwhile, take pics of your EM symptoms & keep a log of how they behave over time. Then discuss all this with your GP & rheumatologist &, if you have one, your Pain consultant

Hope you'll let us know how you get on

🍀🌻

[windless22]

Thanks for reply details x