raynaulds and erythromelgia and menopause

Hello Britty, I have Raynaud's and scleroderma but also suffer from hot flushes due to the menopause. The flushes come on so suddenly and one minute you are cold and the next second you are boiling hot. I can't wear heavy sweaters as i can't get them off quick enough to cool down. I tend to wear layers so that i can peel off quickly. I cool down quickly and then have to put everything back on again as my Raynauds's kicks in. It's a constant juggling act that most women will eventually have to face. I personally did not want hormone replacement and try to stay healthy as possible. I exercise daily by walking and eat plenty of fruit and veg and don't smoke. It's the same at night time as well, the duv.et is on and then the duvet is off! It's great being a women!! Good luck

Hello britty

Sounds positive that you have the feb appt. I totally feel for you. What you describe is all hard stuff, but it sounds as if you've figured out good coping strategies.. I've been living with similar stuff for years too and know what it's like to go through this constant juggling act. I've sorta learned to take it one day at a time, keep calm & carry on etc. but it's not easy and I'm lucky to have understanding family support, and now to be retired.

As with so many of us, my experience of this sort of mixture of problems has been complicated, and the greatest thing has been finally getting the attention of a good medical tem that found the underlying cause, instead of just treating the many individual aspects separately. That you have various diagnoses makes me think you already been getting thoughtful attention from the NHS, but, i'm interested: when & where we're you diagnosed with erythromelalgia? I ask cause having been diagnosed with erythromelalgia this time last year by one nhs rheumy, I then was referred to another NHS rheumy who is a big expert in autoimmune conditions, and she is more inclined to think it's a sort of vasculitis, not erythromelalgia at all. Like you, I've had the erythromelalgia-like symptoms all my life to a relatively bearable degree, but these got a lot worse with perimenopause and really crazy bad with menopause. I spent years ith my gp trying HRT etc which was useless but at least made me feel as if I was doing something other than following ll the usual lifestyle advice out there: diet, exercise etc

Like you, my most troubling erythromelalgia symptoms i guess have lways been in my hands and feet which do the burn thing like crazy, but yes I go vvvv cold deep inside all over my body and then go very very hot, pretty much as you describe. And then there is also the raynauds: The rheumy last winter made me try nifedipine which was a disaster cause it made the erythromelalgia a million times worse

Happily my 2nd rheumy chose to look deeper for an underlying cause, and diagnosed lifelong systemic lupus last June, which at least helps make more sense of my 101 secondary conditions (lifelong raynauds, the erythromelalgi/vasculitis, sicca symptoms, early menopause, hypermobility and lots of other stuff etc). I've been on plaquenil since June which has slightly damped down the erythromelalgi/vas symptoms. And my rheumy wanted to try short phases of prednisolone, but we've had to postpone this until a big infection in my jaw/sinus gets sorted out

Anyway, hope this is some help. Sorry to go on so long. Am no good at briefness on this subject!

Take care

I hope this helps you a bit

hi does anyone know if a sauna makes the raynauds worse I feel like I am in a sauna all the time with em and menopause but I used to love the sauna and and at least there you can relax I did however find aromotherapy rooom amazing and foot spa at local gym which I went to on a three day pass? Thanks for replies about seredrin am now on day three of ginko biloba at the moment despite all my exercising i feel exhauseted due mainly to the attacks of em and menopause I see the Royal free hosp at end of month and hope they continue with the illoprost the attacks still happen and are horrible but not as frequent as every half hour like before that drove me mad so i feel the treatment has benefitted me ???