I haven’t been diagnosed with EM yet, instead I have been diagnosed with Raynaud’s by two doctors. But after finding out about EM and reading about all the various symptoms and with its link to Raynaud’s, I couldn’t help but consider EM as a possibility.
Some background info - I’m 20 years old, male. I suffered from chilblains last winter in Edinburgh (where I study) when my toes got really cold one day to the extent where I couldn’t feel them. The I made the classic mistake of heating them up too fast. Anyway, once I had them, I got all the symptoms one does with EM - hot burning feeling on my toes whenever I put my feet under the blanket at night, whenever I walked into a warm room, drank alcohol etc. I only got relief from the burning by cooling my toes. That continued throughout the winter. I was prescribed Nifedipine by my GP which helped quite a bit. Whenever I took the pill I felt a lot of blood going to my extremities but it wasn’t painful - sort of like an EM attack without the burning (just slightly itchy and red), but I suffered far fewer attacks in general. And whenever I took Nifedipine before sleeping, I managed to avoid the usual night time attacks while lying in a warm bed. My toes started looking normal again, the swelling was reduced.
However, I noticed that I didn’t suffer from any attacks when I came back to India for the winter and the summer holidays. So basically I’m worse when the weather is cold and even worse when its cold and damp outside (which sums up Scottish weather perfectly) which is not common with EM sufferers. This summer I played football in the evening in hot and humid weather and I still didn’t suffer an attack. I also immersed my feet in warm/hot salt water which didn’t trigger an attack either. So while I have many of the classic symptoms of EM, there are some noteworthy contradictions too. And by the way, I dont get the usual Raynaud’s symptoms either. my fingers and toes do get colder than other parts of my body but not to the extent where I can visibly see them become white/blue. And I have never sought relief by heating up my toes/fingers. When I think of an “attack”, I think of flare ups, hot burning toes etc, I never think of cold, white, numb toes. For all I know I could have both EM and mild raynaud’s.
To conclude, I would like to put my mind at rest with this whole issue by seeing a doctor who knows about EM and has diagnosed at least 2/3 people before. I would like to be sure if I have it or not. Can anyone recommend a reliable, helpful, experienced doctor for EM in the UK? Preferably in Scotland? Since I to and fro between New Delhi and Edinburgh, a good doctor in New Delhi would also be great. Please give me some names because I have been really stressed out by the possibility of having EM, it frightens me. This fact that a disease like this exists is beyond me.
Sorry I am in the UK but in Cornwall England. To be honest I don’t know a good one here I diagnosed myself from reading about it and had to take my iPad with me and show the doc this place he read it and admitted he had never even heard of it. I have been to several ones since and never found one that had heard of it.
One problem is knowing the cause if you do then at least you would know which type to see. Mine was originally put down to neuropathic problems but that was incorrect it’s rheumatoid vasculitis and since being treated for that my EM is not as bad as it was.
Thanks for replying soon I guess I’ll have to meet a specialist to discuss the possible cause of it, I don’t think I’ll be able to figure that out with my local GP. I don’t think I’ll manage to get his attention to a disease he hasn’t heard of, let alone talking about it in detail. I have sent an email to a vascular specialist in Dundee (Jill Belch) whose name was mentioned in some thread.
Good luck I agree you will get nowhere with your GP.
I hope you get a response to your email. I have a friend who lives in Melrose and from what she tells me the hospitals in Scotland are far better than here.
Luckily I haven’t had the chance to visit an NHS clinic in England so I wouldn’t know, but I have heard that NHS Scotland is better. I guess the ratio of doctors to patients in scotland is probably better, considering the country has all of 5 million people
I don’t really get attacks like the red feet that others get because my redness is on the soles and my toes. I don’t really flare, I am constant although the pain/redness worsens at night caused by wearing shoes, standing, etc… I thought I had Raynaud’s at one point in both my feet and my hands but the Neuro said he thinks the hands are Erythromelalgia although the pain in my hands and fingers when they are cold is excruciatingly painful, so much that I feel crippled until they warm up. Not my feet though. I could stand in snow with my feet and be in heaven. My hands never get that white/blue look, although they are very red when cold. But they get red when warm too.
Hi Jacob,
I’m so sorry you’re going through this. I too have had Raynaud’s since I was about 19 years old. My fingers would turn blue and freeze then my feet started to do the same. In recent years I started with freezing feet at night even though in warm temps and it then worked it’s way up the leg, maybe half way to the knee. I am 64 now. About 4 or 5 years ago my toes started to hurt and swell. About then year and a half ago
I started to get symptoms of EM.
I have learned that there’s no specific doctor for EM. I use my neurologist, I have MS. I also use my rheumatologist. I take Gabapentin for the MS so they both agreed to up the dosage. It has helped so much. I’m on 900 mgs a day. I break it up 300 mgs 3 times a day.
Everyone’s EM comes from a different reason. It’s rare, they say to have Raynaud’s and EM simultaneously. Some doctors think it’s all one disease. I don’t know about that.
I hope this has helped. Oh, I forgot to tell you I also take one coated aspirin with my dinner every night. My rheumatologist suggested the aspirin as she said it doesn’t really thin the blood. She claims it helps the platelets stick together. Not sure if that’s correct but it seems to help.
Funny thing though, most doctors have never heard of this condition. Some say, you’ve taught me so much. As I have researched now for over a year and a half. Good luck, Jacob.
Hi Anna, yeah its been quite hard to come to terms with the whole ‘Raynaud’s with the possibility of EM’ scenario. University has started now and I have to start worrying about work instead
As many people have mentioned, EM can be caused by all sorts of things and can be treated by all sorts of things too, which makes it even more irritating. I’m planning on going to my local GP and asking him to refer me to either a good vascular specialist, dermatologist, or a neurologist. I have heard there are one or two doctors at the Royal Infirmary in Glasgow and Edinburgh that have treated patients with EM so I might try that out. I’ll try the aspirin. Hang in there! xx
Sorry, it’s not the heart doctor who helped me, but rather the rheumatologist, Dr. McRorie at The Western General Hospital, Crewe Road West, Edinburgh, Lothian, Scotland.
This is really great - I’m Edinburgh-based and GP knows nothing of EM…just says it’s “hyperaemia” reacting to my Raynaud’s. Unfortunately I was discharged by Rheumatology in the last six months - Dr McRorie didn’t see me, only the practicioner who consulted with him
Worth trying again if EM continues to worsen - thank you so much!!
Eira
Hi I suffer from both EM & raynayds. I’m in ayrshire scotland. Saw a Dr in ayr. He was fantastic I have to say. A Dr Shetty. Based out of ayr hospital. Don’t know if that’s of any help to you. If it is. Insist you see him. not one of his under staff though.
I guess I’ll have to meet a specialist to discuss the possible cause of it, I don’t think I’ll be able to figure that out with my local GP. I don’t think I’ll manage to get his attention to a disease he hasn’t heard of, let alone talking about it in detail. I have sent an email to a vascular specialist in Dundee (Jill Belch) whose name was mentioned in some thread.
