I think I know what caused my EM

About 7 years ago I had a very bad anxiety panic illness which I was hospitalised for in the end. Iwas on lots of meds but one if them was propranolol. I was on high dose of it for years in the end I developed raynaulds which didn’t both me that much… However when I managed to withdraw from all meds propranolol being the last I noticed that my feet sometimes burned for no reason. It got worse then about 3 years ago I was diagnosed with em and now and pretty much housebound relying on my mum and partner for almost everything. All I can say is before propranolol my feet were ok . …Then came raynaulds… …Then EM ,So all I can think is that it’s messed up something with my nerves or something?! The funny thing is propranolol is sometimes used in em and was actually thinking of trying it again!
The only other thing that happened in my life at the same time as this was that I had an operation to straighten hammertoes (which has gone terribly wrong, and am due to have another operation this year) after the operation I noticed the burning too. So maybe it had something to so with the operation maybe it altered nerves in my feet or something? I don’t know?! Anyway I just wanted to share this with everyone incase anyone had experiences anything similar to this? Xxxx

Hi Kate,

Again just a quickie. EM and Raynaulds tend to co exist. Em'ers can oscillate between the burning hot 'on fire' sensation with swelling and lobster red flaring and the burning hot frost bitten frozen numb sensation with pale- white flares. Obviously not all sufferers experience this but to my knowledge majority with time do.

(See attachment )

Wishing you a 'comfortable' day

God bless


367-75emEMandraynauldssclerodemaassociation.pdf (936 KB)

Not the same drugs, but I always wonder if my teen years full of antidepressants could have played a role in my later (off the meds, mid-twenties) developing EM (since antidepressants are sometimes a treatment for EM).


I have no ides if the meds could of caused it. I guess anything is possible. I had one thought after reading about getting it after surgery. It seems stress or a stressful event may kick start it if you already have it to a very mild degree or if it is somewhat lying dormant. Even if a surgery doesn't make you stress out your body is going through stress. I don't think it causes it just possibly gets it going. I had such a mild case I didn't even know at the time it was EM but It was so mild I didn't worry about it or even know it was an actual medical condition. My veins in my hands would swell but they didn't hurt and I didn't know temperature was relevant. After 10 years of this I had a stressful life event and that is when I really started to get sick. I have been over that even for over 4 years but I am still getting worse and am now house bound.

It seems as if my body was successfully fighting it off and when I had a lot of stress some of that energy my body used to fight it off had to be spent on my stress leaving my body vulnerable to attack. Just a theory.

Take care


I have spent so much of the last four years casting around for a reason for acquiring EM. I had parathyroid surgery shortly before I began a slow warm up, always a cold person needing hot water bottles and hand warmers I turned into someone who couldn’t tolerate more than a light blanket at night. Weeks before the burning began I had a very stressful life event, not that I hadn’t had others along the way by the time I reached my late 60s, but I was extremely angry for a month or so and a young doctor at the time spoke to me about the changes in our bodies when under extreme duress. It sounded daft to me - after all look at the terrible stresses millions of people are under in war torn areas of the world - but maybe the release of high levels of cortisol and adrenalin really can wreak havoc on our systems.

A Chinese herbalist I consulted (after homeopathy and acupuncture) was convinced it was caused by the anti-inflammatory medication I had taken for 20 years for osteoarthritis.

But there again I have had Raynauds since I was 20 something and EM can follow Raynauds and I have a bunch of other autoimmune diseases.

And I remember my father suffering badly in the heat and my daughter also has EM so is there an inherited element there…

Or is it all of those things and it took the stressful episode to kick start the worst of EM?

All I know is that I will never know and I just have to get on with managing it.

One thing I do know is that when I was blaming myself for this, that and the other thing I did which could have brought it on I felt much worse and less able to cope.

Good luck with trying to make sense of it all.