after 3 horrible days on effexor… i was given clonodine. i took one pill and within 2 hours my raynauds came on hard, i had a burning flush and was covered in hives.

i took 2 benadryls and headed to emergency where i was welcomed with a confused look - as they had no idea what erythromelalgia is

i’m back to square one.
my 3 rd appt within 2 weeks with my derm on monday.

feeling very hopeless.

Hi there

I tried clonidine as well, wasn’t the best for me either. My experience was it helped the EM in the short term, but over time it made my raynaud’s worse and worse. I didn’t even realize it was the raynaud’s – I thought it was the progression of the EM!! It was horrible to taper off of - rebound anxiety/hypertension/flaring until things could stabilize…

I know how hard it is but I have hope that things will improve for you but it does take time. One thought - Have you tried a rheum?

Best wishes

thanks for the response

saws rheum 3 years ago. i was gabopenten and she kept increasing it as it did not work. eventually i ended up falling into a clothing rack in a store - it made me so dizzy

the rheum herself was very dismissive. didn’t like her bed side manner. basically told me ‘life is pain’.

thanks again

Wow that’s amazing for a doctor to say.
I said this is another post, but my mom’s derm told her just simply not to mention her EM again he was done talking about it. Maybe consider getting another rheum - doesn’t sound like a real doctor to me.

i’m in canada. one cannot be too picky about a doctor. no real choice in the matter

Cherry, Seenie here from Moderator Support.

I’m sorry you’re feeling so negative about what’s happening with your erythromelalgia. It’s a mysterious and difficult condition to manage, and unfortunately there are lots of doctors who probably know less about it than you do. That doctor’s response is outrageous. Move on, find someone better.

When you have a rare disease that’s just the way it is. I suffer from a rare disease too (although not erythromelalgia) and one of the things I’ve learned is that we rare-diseasers need to become our own best advocates. Yes, when you feel like carp it’s not easy to do, but you have the power of the internet at your disposal. You can learn as much as possible about your condition, and you should start looking for the best doctor that you can find to help you with it. There are no guarantees of success, but if there is a way to find a solution, or at the very least, some relief, that is the most likely way that you are going to find it.

I know, it doesn’t seem fair or right that a person who is feeling down and defeated by some horrible (but not life-threatening) rare condition, needs to take control and work so hard to find help. If you have a heart attack, chances are you’ll get pretty good care once you get to the ER, without having to advocate for yourself. But unfortunately, when it’s a rare disease, even one that may be totally debilitating, patients are very often left to fend and fight for themselves. It sucks, but that’s just the way it is. Does that make you angry? Good! Channel that anger into finding a doctor who knows this condition and who cares. They are out there somewhere, even in Canada.

I think that you need to put your battle gear on and start looking for a decent rheumatologist. The one who treated you that way is not good enough: you deserve better. How about starting right here on this page? Click on the magnifying glass icon near the upper right. Key in … oh, let’s see … how about doctors Canada? Or take a look in the “Recommend a Doctor” section of this site. Post a thread asking for leads. Just do it.

The ball’s in your court.

Seenie from Moderator Support.

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