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Scleroderma & Raynaud's UK (SRUK)

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Erythromelalgia &RAYNAUDS

carolanntwin profile image

Hi,been on this site a few times had great advise over the last year wonder if anybody has got any advise on this problem i've had these last couple of months,whether its the mild weather or not the raynauds&erythromelalgia is driving me into depression, the deep burning thobbing pain starting from my feet through the legs and giving me headaches and sore eyes all the time ,can't do much of any thing because it generates heat and makes anything worse.l take aspirin & antidepressants but nothing helps,not got a appointment at the royal free till April becausei had to cancel the last one due to illness. any advise or tips would be appreciated thanks.

11 Replies

Hi carolanntwinn,

These might seem simple, but try them.

Drink chamomile tea 3x a day.

Take 10,000-20,000 sublingual B12 a day

3000 units D3 a day

500mg B2 a day

Iron, every day to once a week, depending on how old you are

Zinc once a day

Multi vitamin once or twice a day

B-complex once a day

I have found coconut oul on the skin to be cooling. I don't know about eating it, I haven't yet.

Have your thyroid checked by an endocrinologist. I felt like I was burning up for months, and it turned out it was because I was hyperthyroid. (Sorry, I forget what Reynaud's is, and I can't look it up just now.)

You might also want to check out everything bee related. One site is Bee Pollen Buzz.

It took me over 3 years on supplements, and even though I still have things wrong with me, I feel pretty good, lighthearted, and more like my old self, so hang in there.

Hope some of this helps.

carolanntwin profile image
carolanntwin in reply to 2Old

Thanks 2old for your help much appreciated will try them.

I haven't fibromyalgia...but I do have secondary Raynauds and it is just as bad when your extremities are freezing but I can start 'burning up'...feverish like even though my hands and feet are frozen...most weird! The burning sensation only lasts about 5mins or so ..and no it is not hormonal or menopausal as it happens after I have done something taking the bin out or making the bed...I have lung damage so this causes a lot of problems. No solution for your problem but I honestly don't believe it is Raynauds connected but I am not a doctor so I do hope you get some relief soon as it sounds like you are having a rough time of it just now. Get better soon pet.

Sorry...meant to type 'erythromelalgia' NOT fibromyalgia! apologies!

Thankyou msrilynmci

I too suffer from terrible raynauds, freezing extremities and having erythromelalgia which is the opposite its going to be hard to find anything to work tryed most things.been to the doctor she's going to write to the royal free to see if there's anything else i can try.thanks again

Do hope you get an answer to your problems with of luck

Hello there, I am sorry to hear that you are suffering. I don't think people appreciate how bad pain this type of pain can be! It sounds to me that you are having a flare up of your erythromelalgia. I would recommend that you go to your GP if they are the ones who generally manage it. You don't say what antidepressants you are on? Are you taking amitriptyline? That is often helpful for this type of pain...or you might find that gabapentin or pregabalin would help. Anything soothing you can put on your feet and legs is going to help. Keep your moisturiser in the fridge to cool it.

Do you have artificial tears to put in your eyes to soothe them? There are lots on the market that your GP can prescribe you.

If the Royal Free are the people who normally manage then I would give them a call. I am sure they must have Nurse Practitioners who can advise you even if you can't physically have an appointment, but I would hope that if they knew of your suffering that they could squeeze you in somewhere. It was hardly your fault that you couldn't attend you scheduled appointment.

I hope that you get things resolved really soon. All my best. Lucy

Thanks lucyjean

Been on amitriptyline, and a few other antidepressants, gabapentin, iloprost, dr writing to the royal free for me.thanks again.

Hi there, I too suffer with erythromelalgia so I know just how tricky life can be with it and because we mostly look normal people find it hard to understand we are so unwell. I was prescribed Pregabalin for the pain and it helped so much I had forgotten what it was like until I had to switch meds recently. So I would without a moments hesitation recommend taking something for neuropathic pain.

I hope this helps and that you find something that suits you. Ax


yes erythromelalgia is very tricky, it affects everything you do,people do look at you and they don't see anything wrong with you and you are in agony. but its rare like a lot of diseases. Tried gabapentin and most meds but not found any that helped yet but keep trying.ts nice to come on this site and write to people who understand. Thankyou

75mg Venlafaxine 4 times a day eased my Erythromelalgia by at least 70% and my eyesight improved 100%. Sadly 4 years on and it seems my body is becoming used to the Venlafaxine and it's not working nearly as good as it first was.

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