raynaulds and erythromelgia and menopause

[britty]

I have suffered with raynaulds for over 20 years now and mild Erythromelgia about 6 since my hysterectomy last year I now have an added nightmare of the menopause and I believe the erythromelgia has become severe and not alot of people understand that is why I am so glad to be able to chat with you all as you know what I mean. Since the op I have had continuous flushes and my hands going red and swelling my whole body most of the time on fire and then just as much I can be ice cold I have at long last been referred to the royal free hospital in feb I am nervous but really hope they can finally help me does any one else have these symptoms also now most of the time especially at work I am totally reliant on a fan and then when it is so severe i have to take my fleece of asap and then after the attack I have to then wrap up again also lately due to the severity of the attacks I collapse to the floor as this head rush makes me giddy.

[Hidden]

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

[britty in reply to Hidden]

Hello nuala thanks for your reply it makes me feel like I am not alone in this hell. Yes I wear layers now no sooner are they on when they are off again. I don't smoke either I do it fruit and veg and am trying to have fish more often I am 46 now. For the last couple of months I have switched to alpro soya and taking usual medication and now evening primrose and cod liver oil and recently trying out red clover. Are you in the uk?

[Hidden in reply to britty]

Hello Britty, I also live in the uk. I am also 46yrs. I am taking a flush as we speak! Or should i say type. I was taking evening primrose and also like the soya yoghurts. Hope you are feeling better. Nuala

[Barnclown]

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

[britty in reply to Barnclown]

Hello Barnclown. Many thanks for your reply before the menopause I struggled with the temp but not to the degree that it is now so then I learnt to have coping strategies and was amazed when I received a leaftlet from the Raynaulds society which I have been a member for a long time with . I think it was then that I learnt about Erythromelgia then a doctor said I have it mild and if syptoms get worse there was talk of ilprost infusion. Apparantely this treats both raynaulds and Eyrthromelgia together. I just learned to live with it as I said other people think it is just in your head. Now i fear I may have to get this as I feel the Eyrthromelgia is as bad as the raynaulds now or even worse since the op. I have never heard fo vasculitis but I do remember when first diagnosed with raynaulds about 20 years ago I think I was prescribed nifidipine and I flushed from head to foot total nightmare then I was put on hypovase until I became immune to it and when tested my heart showed signs of a murmur which went away after time. Now I am taking lercandipine and fluxeotine and serederin. Are you from the uk ?it is good to finally have support and be able to hopefully help other sufferers like us.

[Barnclown in reply to britty]

Hello again

Glad my probably typically overlong reply was some support. Yes, this forum and the lupus uk forum have given me great encouragement & inspiration over the past year since my lupus diagnosis. I totally agree with you: it is good to have support and meanwhile maybe even be able to help others a bit

Yes I am British & have lived all my adult life in the uk, but was mostly in the usa while growing up. Last year after my lupus was diagnosed, my 90 year old mother fessed up that several times as I grew up, drs told her I had lupus. For whatever reason, she never told me this, so all my life I've been managing secondary conditions with the help of various NHS depts and no one connecting up the dots. but, with menopause, things generally turned so much worse that finally my pain specialist & my gp got rheumatology to wheel into action looking for an underlying cause, and the systemic lupus got figured out....which gave my dear old mother a chance to fess up. Stranger than fiction. But I do feel better able to cope with my health generally now I know more about why I am predisposed to all this stuff, and now that I have the full attention of really good specialists at one of the uk's leading regional teaching hospitals. And the support of these 2 forums make all the diff

Your reaction to nifedipine sounds pretty much like mine. At least we know that's not the stuff for us! So much of treatment seems to be trial & error. Sounds as if the meds you've been on and are on are helping some aspects. I hope you'll let me know how you get on at your appt. maybe we could use the forum message system to keep in touch with each other, as we have things in common? But totally up to you, no hard feelings. It's just that very few on the forum seem to have erythomelalgia and even the online erythromelalgia organisation site is only helpful up to a point.

I know what you mean about other people thinking stuff is all in your head. I spent years trying to believe they were right, but after a while I realised that of course they really weren't right!! But even so, i'm a lifelong fan of meditation, and, over the decades, when I feel I'm not coping as well as I might with stuff, I have a few sessions with my dear psychosynthesis therapist, who is also my Alexander technique teacher. These things, plus an antiinflammatory diet and supplements (recommended would you believe by my NHS pain specialist) working long side NHS treatment seem to mean at 58 I'm doing a bit better than I might be. But my husband, my hero, has lived with serious crohns disease all his life, which helps me keep my stuff in perspective!

Take care - best of luck at your appt: I'll be thinking of you

[britty]

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 ???

[Holiday12345 in reply to britty]

hi I know this is a very old post but wondering how you got on with the EM and what helped If anything. Thanks