Comments on: Rare Disease Day – My Erythromelalgia Story

By: Pippa Stacey

Pippa Stacey — Thu, 06 Mar 2025 14:33:42 +0000

In reply to Helen.

Ahh thank you for sharing Helen and I’m sorry to hear you’re suffering with it too – you’re not alone! I’ve recently started using Capsicolle cream (purchased myself) as the Capsaicin still isn’t available on prescription – too early to say whether it’s making any difference but here’s hoping!

By: Helen

Helen — Sat, 01 Mar 2025 07:22:49 +0000

Thank you for sharing this. I experienced severe episodes of Erythromelalgia after I was diagnosed with long Covid. I was trying to very gently exercise to help with my pots when my hands and feet would swell and burn and turn bright red. I posted in a PoTs chat thinking it was blood pooling but someone replied saying- it looks like Erythromelalgia. Like you, my GP had never heard of it, and unfortunately I wasn’t referred any further. A rheumatologist diagnosed it by letter but didn’t see me. It’s only now a few years on I’d like to re look into it, and see if there’s anything I can do to help it, and rule out any other causes. It’s definitely worse in the winter! The slightest drop of alcohol, or even the most mild exercise, or the heating being on flares me up.

By: Pippa Stacey

Pippa Stacey — Tue, 27 Aug 2024 10:10:09 +0000

In reply to Cynthia.

I’m so sorry, but I don’t think I have much helpful I can share! The only treatment that was ever suggested for me was Capsaicin topical cream but I still haven’t been able to get hold of this in the UK due to shortages, so I mainly just try and manage my internal temperature as best as I can and limit the movement/actions I know can trigger a flare-up when it’s hotter outside or I’m feeling particularly exhausted. I’ve just come back from a holiday in a hot country and keeping in the shade definitely helps but isn’t necessesarily preventative. But I believe my case is very mild in comparison to others and it’s not something I have ongoing support/care for, so I only have limited info myself – I think somebody once told me to look at the lifestyle guidance for an autonomic condition called POTS, so perhaps there are things in there that might feel helpful. Really sorry there isn’t anything more practical I can suggest, but I really hope you find the answers you’re looking for and manage to enjoy some sunshine. Sending love x

By: Cynthia

Cynthia — Tue, 20 Aug 2024 15:35:39 +0000

In reply to Pippa Stacey. Hi Pippa, thanks I have but there doesn’t seem to be anything for the UK. May I ask how you manage the sun with EM? I miss being outside! Do you have any treatments or doctors you recommend or that work for you?

By: Pippa Stacey

Pippa Stacey — Mon, 12 Aug 2024 13:50:43 +0000

In reply to Cynthia.

I’m so sorry you’re feeling alone Cynthia – sending all my love and empathy. It might be worth having a look at The Erythromelalgia Association if you haven’t already, I think they might have member link-up groups and support directories on there! X

By: Cynthia

Cynthia — Tue, 06 Aug 2024 12:50:51 +0000

In reply to Trinity Yamanaka. Hi all - I have recently been diagnosed at 32. Is anyone able to join a support group or a zoom call to run through help and strategies. Feel very alone and would love to hear from young people with this.

By: Trinity Yamanaka

Trinity Yamanaka — Thu, 25 Apr 2024 16:37:45 +0000

I was misdiagnosed for over 20 years with Raynaud’s. I always told people I have Raynaud’s but the opposite – I get hot, and finally this year I was properly told I have erythromelalgia. Symptoms started for me at 10 years ago, and now I am 33. For me, it has gotten more severe as I have gotten older. It used to just affect my hands and feet and face, but now it is my upper arm, forearms, and knees. It is so nice to feel seen since we are a part of this rare disease club. Hopefully EM gets talked about more so kids with EM don’t feel ostracized like I was.

By: Pippa Stacey

Pippa Stacey — Sun, 20 Aug 2023 14:09:46 +0000

In reply to Lisa. Thank you reading Lisa! My thoughts are with you - really hope you can snap the pics you need and finally find the answers you're looking for!

By: Pippa Stacey

Pippa Stacey — Sun, 20 Aug 2023 13:47:14 +0000

In reply to Suzanne Hardy. Thank you so much for reading and sharing your tips Suzanne, much appreciated! All the best to you too, hope today is a kind as possible!

By: Suzanne Hardy

Suzanne Hardy — Wed, 16 Aug 2023 20:01:49 +0000

Hi Pippa! Thank you for sharing your story and articulating some of the peculiarities that accompany EM so well. I’ve lived with EM since I was in my early 20s, affecting my hands and arms, but now it has begun to affect my feet, sadly. I found the only thing that worked to keep it vaguely in check was environmental control. Fans are my saving grace… if I’m anywhere where the air is still, you can see the weird discolouration over my whole arms and it will kick off a flare… it looks horribly bizarre. I very much feel you on the self-consciousness part. Moving air seems to help with the general allodynia too… it feels like still air burns my skin almost.

There is definitely a lack of patient voices, and so little knowledge about it, or reasonable treatments. Finding your blog was heartening, and I wish you all the best going forward!