I had the most frustrating visit to hospital today. I have long understood that there is only one set of EM experts in England and they are at a Dermatology Raynauds clinic in one of our major London hospitals. After seeing the consultant I was sent to a clinic which I saw when I arrived is a nurse led Raynauds clinic. I said that my concern was my EM and not my Raynauds which I have had for over 50 years and was sent home with literature outlining treatment, all of it for the Raynauds. On a return visit today I saw the same nurse and again said I was there for the EM. She began to explain that EM and Raynauds are two sides of the same coin, Raynauds in the Summer and EM in the Winter. I protested that my EM is far worse in the Winter and that I get reactive flares when my feet/hands get too cold. What’s more the Winter flares last longer and are harder to deal with. She told me that she is currently writing a paper about EM and expressed bewilderment that I believe my EM is worse in Winter. She said she sees large numbers of people with EM and none of them declare themselves worse in Winter.
Am I really so unusual? Of course I flare in Summer but it is Winter that I dread though I don’t wear shoes or extra clothing.
I have to admit that I am far worse in the summer than the winter. Today it's been 22 degrees here and I am worse than I have been for a while. I must have had to use 10 bowls of water this afternoon and that's including topping up with water out of the fridge. Mind you, I don't get flares now it's all the time, unless I cool them in my bowl of water. In the winter I never wear shoes, always sandals.
I agree that my flaring is much worse in winter. It is so bad that I dread winter. I feel it has something to do with the fact that we heat our home and everything is warm inside in winter, whereas in summer we use air conditioning and everything has a cool feel to the touch. Partly that could also depend on the fact of wearing fewer clothes and footwear in summer. Also, has enyone noticed that flaring tends to be worse after eating a meal?
Maybe the difference with me in that I don't have air conditioning, it's not common in the UK. I did think about it once and it could be a possibility now. My husband was always cold and so he didn't even want the windows open to get a blow through in the hot weather. He passed away last November and so now I am on my own. As for clothes, I wear the same sort of clothes winter and summer. I haven't noticed it worse after eating but then again as I said previously it isn't flares it's constant so I might not.
Oh gosh, Nel, that is SO frustrating for you! You'd have hoped that if she's writing a paper on EM she'd be more interested in the patients who don't fit her model. Open minds make medical breakthroughs not the opposite!
No mine is worse in summer...heat aggravates it....although winter is no picnic either...I no longer wear any shoes,,,I wear moccasin style slippers...cannot handle any shoes...I first developed symptoms in 1995. Was working at a fast food place and my feet started to burn...for a time I would go to the washroom and soak my socks in cold water and put them back on. Saw many many specialists over the next few years here in the Toronto area,,but none knew what I had. My mother did a lot of online research and believed that I probably had EM. initially my EM was in my feet and legs.for about the first 8 years. Now it is visible just about everywhere hands, arms body face although feet still the most effected. Hands too..I stopped going to doctors for a long time as none were doing anything. I talked to someone on this site who gave me her doctor and my mother got in touch with him and he has been treating me for the past three years, got me on disability and finally diagnosed me with EM. Try and talk to people in your area who are being treated and see if someone can give you a contact other than the ones you are currently seeing, So far I have not found much that helps with the pain...personally I smoke marijuana...will be going on medical one soon....
Your story sounds exactly like mean and I really mean that, incredible how similar to mine. The only difference is that as yet I haven't been officially diagnosed. I am hoping that I will be soon got a couple of appointments coming up one next month and another in August.
The nurse is right about Raynaud's and EM being two sides of the same coin, but she's wrong about separating them as to season. Trust me, you can have flare-ups of either one at any time of the year. The way that they are related to one another is that they are both neurovascular conditions.
I think my EM is probably worse in winter too, because I get so cold that I break down and put on socks or put the blanket over my feet, then I live to regret that decision. I am from California so I didn't used to experience much of a winter, but I now live in Idaho. Even so I have been known to wear open toed sandals in the dead of winter (in snow) just because of the severe reaction I get when covering up my feet.
During summer I keep a fan blowing on my feet 24/7, I guess that's why I don't get as many flare-ups in hot weather. I don't spend much time outside, not just because of EM but I have lupus and a lot of other conditions that cause me to avoid the sun and heat.
Yes - so much yes!
I thought i must be crazy…
I get flares during summer and winter - but have always thought it seems worse in winter.
I have dx of raynauds - but yet to find someone who knows about EM.
I find, like JoAnn mentioned, that I will, at some point have to rug up in winter with warm socks, sweater etc. I then very quickly overheat and flare so i remove the layers, but the raynauds comes in to compensate, but then as my body re-adjusts to room temp that is a big enough temperature change to trigger yet another flare.
It seems i get a lot more see-saw’ing in colder weather. Going between two extreemes so often damaged my skin and nail beds last winter.
In summer i do flare too of course but raynauds seems less of a problem - even if i have a fan blowing on me.
I also get blood pooling in limbs due to Dysautonomia and Ehlers danlos syndrome. Whilst i can tell the difference between blood pooling and EM … i feel like blood pooling can occasionally set off EM due to heat from blood flow being stuck around limbs; the redness and hot weather probably make EM less noticable at times.
Also - another thought,
I often get raynauds and EM flares at the same time or one after the other - cycling fairly quickly in winter.
perhaps the raynauds being more active during colder temps might mean that some people are more likely to have not only the heat and pain but also increased swelling and pressure in affected areas - e.g. fingers… just a thought, but seems like it might hold true for me. The swelling subsides as the episode goes away.
Yes! I've actually had BOTH Raynaud's and EM active in my feet at the same time. I have seen bright red (hot) toes and dark purple toes (cold) on the same foot! So weird. This has happened mostly in winter, as MeowMachine mentioned.
HI i am also in england and im under professor denton at the royal free hospital,london.Is this where you go ?
I suffer from both em & raynauds and i am up and down with both all year round. So to say what they have said to you i believe is wrong,we are all diff and all suffer and no two of us are the same. In winter we have heating on so even tho its cold we use our heating systems to warm our houses,and this makes me worse i find,
Hello, since I live in Southern California, I'm worse in the summer but it's really based on the temperature. Anything above 75 degrees get my feet burning. The past two winters have been the warmest on record, almost like "endless summer", which has been no break for me. I live inland, away from the ocean, and I wish I could afford to move to the coast where it usually 10 degrees cooler. This past winter we visited Flagstaff, Arizona, and it was cool and even snowed one day. I wore jeans with leg warmers under them and flip flops. A few people commented "Aren't your feet cold?" It felt pretty good to me. I don't think I have Raynauds because I do not flair when my feet are cold (which rarely happens where I live!).
I am not really well up on Raynauds. From what you said jewels does that mean that if you don't flare in the cold then it is definitely not Raynauds? The reason I ask is that one doctor once said to me does that mean you have Raynauds when I was talking about EM. If my feet are cold I never have a problem and when I could walk there was nothing better than going out in the winter with just my sandals on when it was cold. I am dreading the next few months as it's summer. The thing that gets to me is when people say to me "Isn't this weather wonderful!. I never really know what to say as I hate it. I am not one for telling strangers that I have a problem in hot weather due to my health and so I tend to just go along with them.
Winter is my worse time. We do not keep our home over heated due to heating cost we just add a sweatshirt.But I can not add sweat pants because my legs get warm and I will flare.
Summer time we keep our A/C turned up but at night it goes down. We can not sleep if it's warm and it brings on flares. We have extra fans in the house to move the air.
We also noted thatthe pressure is higher in the summer IF that has anything to do with it.
Not to be misunderstood I still get flares but less often and less severe.
We are in Tennessee USA at this time it is mid 90's. I could not stay outside very long in the heatso I out early to check out the garden and flowers. Our small doxies have a small wading pool in the back yard and if I start to flare I step in their water.
Winter time I am home bound.
BUT I can not wear shoes or socks winter or summer. I wear Reef's Flip Flops.
Thanks for the replies. I suppose it is a given that people living in very hot climates are going to suffer more in the summer. We have 22degrees today which is as hot as we are likely to get and it has been very difficult but still better than a Winter flare.
I am now wondering how atypical I am and why!
So far my EM is much much worse in the winter. I've wondered if those of us with primary EM and raynauds don't struggle more in the winter? I suspect my EM is it its worse after I've experienced many Raynauds events. However, many of the Raynauds treatments (medical, preventative, and otherwise) will not work due to the EM. The ultimate catch 22.
mine is primary and summer is still worse for me...winter is no picnic ..the shoes is the big thing....I only wear moccasin type slippers or those rubber clog type shoes...and wear them in a much bigger size than I wore prior to developing EM...I also have another condition that effects the blood vessles in my legs that they are working on diagnosing...my doctor is at a teaching hospital so I get to see lots of interns and residents who are always very interested in my illness. My EM is not genetic so how I got it is still up in the air..no history of anything in my family like it.