Hi, I’m newly diagnosed and new to this community. I don’t really know what to expect from this site, but I would very much like to build up a support group with fellow young adults who share this wretched disease.
With this being such a rare condition, most if my family and friends have no idea how to react to such a thing, or what the heck it is for that matter. There is much love for one another, but unless they have experience, it’s hard to relate. The only thing I have to compare it to is hot flashes (then again I have no idea what those actually feel like lol).
I hope to find at least one person on here to bounce our stories, treatments, lifestyles, etc. off of each other. And many thanks for the warm welcome I received when joining this site.
Hi, I can’t imagine what it must be like to have this at such a young age, I was lucky (if you can call it luck) that I didn’t start to get symptoms until I was early 30s so didn’t go through it at an age where you just want to be out having fun with friends. There are some younger people on here. Will prowes & Lauren maybe you could get in touch with them. We have others but I’m sorry and can’t remember their names.
Take care
Laura
Hi - I Just turned 30 so I can relate. Although I should say I’m not 100% sure this is what I have ( rheumatologist said EM but neurologist overturned diagnosis - long story). In any case I know how it feels to deal with the discomfort and uncertainty of distressing systems. I sent you a friend request so we can connect.
Best,
Trevor
Hi. I’m not in my twenties. I’m a bit older but I can understand the cronic sever pain aspect but I didn’t start having problems til. I was in my late 30s. I am sure being so young with this condition posts a whole new set of problems that I might not understand. There are few younger people here and hopefully you are able to connect with them. If you still would like to talk to an old geezer like me( come on 40? That’s not OLD! Please tell me that’s not old:). ) I would love to help you any way I can.i will keep my eye out if I meet any younger people here I will be sure to tell them about you. I wish you well.
Alina
Laura ~ Thank you for the names. I will be sure to look them up. And I have to say you have such a kind heart. Before I joined this site I looked through discussions and what not and you always have words of wisdom and uplifting thoughts to convey.
Trevor ~ Your friend request has been accepted. Thank you for the opportunity to swap stories and connect.
Alina ~ Oh please 40 is not old at all!! Even someone in their 30's/40's is still way too young to suffer from such a disease (really no one should have to suffer the way we do). Thank you for the support and kind words.
Hi. Thanks for saying I am not old. It seems these days when I go to a doctor they say oh that’s just what happens when you get old. I really don’t feel that old. How are you holding up today? In your earlier post you mentioned hot flashes which of corse you haven’t had yet. Nor have I but they be should be coming in the next few years. I have no idea how that is going to go but the thought scares me pretty good. Maybe I should start a discussion and ask about it. It’s great you have the support of your family. I know they don’t understand and probably won’t but at least you have their love and compassion. Some aren’t so lucky. I have the most loving supportive husband but even he messed up last night. I asked him to set the thermostat to start making it cooler earlier because I am laying in bed for hours burning unable to sleep waiting for it to finally cool down to our sleeping temp. He had the nerve to say he didn’t want it that cold that soon and there has to be some compromise. I just started crying. Which made me burn more!if you can try to get a hold on your emotions( takes some practice) but if you do that will help minimize flares caused by emotion. I told him I don’t want to be cold any more than he does. I want to be comfortable just once. No matter how hard I try I am NEVER comfortable. If I get it cool enough I don’t burn I am usually un comfortably cool. I want to be warm and cozy not warm and burning. I told him you get to be comfortable in your car and at work and in stores and everywhere else in this world but your house is a little cool. I struggle all day and night trying my best for just one minute of true comfort. It is like walking a temperature tight rope 24/7. I didn’t say these things meanly. I am not that way but I said them through my burning tears.he never says things like that he usually bends over backwards to help me but inside he will never understand.i am so glad I found this place with such wonderful compassionate people that truly understand. Take care and stay cool!
Alina
Today wasn't a great day for me. As soon as my feet hit the floor this morning I was red, hot, and swollen. I just don't get it? How could I possibly be flaring when I was doing nothing but laying in my bed for the past six hours?? Super frustrating. As is when we have confrontations with the ones we love. I COMPLETELY understand what you went through with the temperature debacle (so sorry to hear that you had deal with it). It amazes me what a difference a couple of degrees can make. The cooler it gets the more clothes and blankets you can throw on; but you can only get so warm before you are striped naked and still boiling from the inside out. I am happy for you that your husband is understanding 99.99% of the time. :) And hey, I saw the discussion board on hot flashes. Hopefully there will be some good news to calm your nerves. Have a wonderful night!
I’m sorry you had such a hard day. I find sleeping actually makes me burn too. I think most people have their symptoms get worse at night. Some people seem better by morning and others tend to not get better till they have been up for a while. I am just sitting here watching tv and it’s just past 10 pm here. My house has been at 63 all day but I put it down to 55 while sleeping. My knees just started burning so I checked the temp and it is 60 degrees. I have been sitting heed in same cloths, same emotions , I haven’t eaten anything. Nothing has changed but the time and it’s actually gotten 3 degrees cooler! When night comes I burn more.its something to do with your autonomic system. It’s very common for EM patients. I actually had a pretty good day. I think I may have figured out a way to go to the store in the winter!!!when you have to wear warm enough shoes to go outside when you get in the store those same shoes are your worst burning nightmare! I was thinking about bringing a big enough purse to put flip flips in then just change shoes when I got in then change back right before going outside. I came up with an even better idea and it worked great! It made my day! I have water shoes. I put socks on then my water shoes. Plenty warm outside then when I was in store I just took off my socks and I was then dressed for summer! It’s nice because the water shoes just slip off and on easily so it’s somewhat discreet. I still couldn’t stay for more than 10-15 minutes but the times I tried to shop at all this winter I was in severe pain within 5 minutes of being inside with tennis shoes on.by the time I left they had started burning as to be expected so I just left my socks off and the winter air made my feet feel better in no time! I’m sure you have already tried puting your feet out of the covers when you sleep. Quite a few people get help from having a fan on them too. If they are ever at their worst and even a fan doesn’t help I use chilli pads. You wrap them on your feet and they stay cool for hours. You should check them out they are an invaluable part of my arsenal. I hope your night and morning are a little easier on you. Hang in there.
Alina
Hi Fire & Ice (clever name),
My name is Sean, 30yrs, I've had EM for a little over two years and would be happy to share some dos and donts. I tend to focus on the positive so lets talk do's.
1) For starters, if you aren't aware, Dr. Cohen is a rockstar when it comes to EM advise and I would encourage you to check out his page of info on EM - http://www.jaycohenmd.com/erythromelalgia.html (also, these documents help educate family and friends who are trying to understand)
2) Medications & Supplements- keep at at, trail and error till you find some assistance (lots of suggestions are listed on the site above)
3) Compression Socks- These thing are outstanding when it comes to EM. Basically they are tight socks that promote circulation and minimize swelling. That said, I am able to go out at night because I know the EM socks will prevent major flare ups. I dont wear them 24/7 just during times I know I will likely get a flare up and will have to push through it. I purchase 30-40mmgh from Jobst - http://tinyurl.com/jvj8s65
4)Cooling techniques - elevation is good (90 degree angle for my feet) however to cool I typically keep my compression socks on and use frozen bags of corn. Also I have cold towels as previously mentioned. For showering, I stand in a lg plastic bucket with slightly cool water.
5) Also, regarding flare ups first thing in the morning, when i get out of bed I typically slide out to the ground then after putting my shoes on stand up. For whatever reason this helps prevent an instant flare up.
Alina ~ Very clever on the shoe shopping techniques. And I do wish I could keep my feet out from under the covers at night, but I also have Raynauds. So instead of exposing my feet, I make a sideways "u" shape with my blanket and keep my knees uncovered at night. I have heard of the chili pads and will have to get my hands on one or two to keep me cool throughout the day!
Scanfield1 ~ Thank you for the link to Dr Cohen's site! I have been wondering if there was a practitioner who had first hand knowledge of what it is we go through on a daily basis. The compression socks I've been a little iffy on because anything too tight or clingy and cause me to flare. And it would be nice to just slide out of the bed in the morning, but my mattress is a good three feet off the ground. I'd probably fall rather than slide out of bed lol.
hi!
Im 25 and was just diagnosised with em. I have had it for at least 7 years now and understand in every way all about your pain.
how old are you?? and where are you from?
I live on Vancouver Island in British Columbia and i dont know anyone else in my area that has this. finding someone who truly understands is hard.
Hi fire and ice. Funny you say that about the Reynolds. I too get Reynolds,pernio and levido reticularis. Some times my feet will be so numb I have to take my shoes off to drive! That way I can feel the pedal on the lower arch closer to my heel. Every thing up is useless. Before I ever had a bout of EM I had the cold side of the neurovascular stability. My symptoms seem to wax and wain. My EM will be worse and the cold problems only happen when it is quite cold and when my EM is better (not gone just better) my cold issues will happen even in the 60s! Then there is the transition period as one severity is switching for the other. At this time anything goes! I can have Reynolds hands and burning feet of vice versa. I have even had my hands that had both at the same time before! That’s why I call it walking a temperature tight rope because it is not as easy as just getting colder. There is a small 2 ,3 if you are lucky temperature range where you don’t suffer from one or the other. It’s not even as easy as setting the room at that magic temp you find because that temp seems to vary day to day. When you do have a temp with no problems then you have the nerve to move ! Maybe pick something up or do a dish or two then your magic comfortable temp doesn’t work anymore when combined with that light activity! Describing it makes me want to scream! I am glad you found a way to sleep. It took me a bit of figuring out what you were talking about with The U shape you make but I think I’ve got it. It is interesting how many of us have Reynolds too. When I saw dr Davis at the mayo clinic he said he thought I brought on the cold side problems myself from cooling myself too much and to stop it!!! For one thing I had the trifecta of cold problems before EM and I don’t just make myself as cold as I can. Being cold is uncomfortable too. Just not excruciating like EM. I only cool myself enough to try and stop the excruciating pain. Furthermore there seems to be a link between the two because there are so many of us here with both. I hope you are doing ok today. Take care
Alina
Hey there,
I am 28 and started having EM symptoms at 25. I also get too cold easily and constantly struggle to find middle ground. Gah, so frustrating! I live in Minnesota, and I have been doing exactly what someone else here described - I carry flip flops in my purse and swap footwear as soon as I go indoors. Mpls has skyways, so I take long walks indoors without it being boring like a track. I still flare after a while, but it's better than no exercise (and there are benches and coffee shops galore for resting). Flip flops help a ton - you just have to find ones that are very soft and won't rub your flaring skin (I just ordered some flip-flop style slippers). It's getting slushy outside, so now I'm going to have to carry boots around when indoors, but you gotta do what you gotta do. I guess I'll be swapping my purse for a backpack now.
Have you tried swimming? If you can find a pool with water that's a comfortable temp for you, you may be able to swim without flares because water regulates skin temp much better than air. My building just decided to turn the water temp down to that used for swim teams, so it's now too cold for me to use without shivering. That's been a huge bummer.
I often sleep with only the thin sheet over my feet, with the rest of me under my warmer blanket. It's all about balance... a balance that sometimes seems not to exist.
I feel the same about talking with friends and family - they are so kind, but just don't understand. They are playing the role of sympathetic loved one just fine, but, frankly, it gets old. It's refreshing to talk to someone who "gets" it - I have a friend with MS who understood the loneliness perfectly, as well as the new outlook this gives you. Sometimes you have to be selfish. Your priorities change when something like this takes over your life. But you have to be strong and keep on trying to find ways to live with it without crumbling. It's a private battle that your loved ones don't realize they only see the surface of. You have to own it.
hi! my name is Katy, I am actually 21 as of now but I was diagnosed when I was 20, but my symptoms began when I was 19. it progressively got worse until I decided to take a break from college to try to figure this out, and I was diagnosed this past January. my symptoms were very horrible at first,I could barley walk due to the swelling last winter. I now attribute this to being put on massive amounts of steroids to try to get it under control, so please think twice if any doctor wants to put u on steroids cause that was hell and I will be honest I didn’t want to live during that time.
however I feel I have improved dramatically since that time! I went to Virginia mason in Seattle and a rheumatologist put me on a calcium channel blocker called Mexilitine. slowly my pain was dulled and my feet do not swell as bad as they used to. it’s still an annoying disorder and I wish I could express my young fun loving self to its fullest but I do the best I can! I can actually even drink alcohol again with this med in moderation, which was a huge no no before.
I used to run in cross country and I got a foot injury when I was 17, and it never fully healed than one evening I started getting the symptoms of em a few years later. life is so random and I don’t know why these things exist but I have learned so much about myself, and learned who my true friends are as well, in a sense thishas a blessing because I only have true l oving relationships in my life now, no fake people.
so hang in there, and I pray that you, and everyone else on this site or who has this can find the moderate relief that I have, and hopefully one day a complete cure. just never give up and keep searching for the combination that will work for you, and stay true to what you are passionate about in life!!
Welcome! I am new to this site myself. I have never been formerly diagnosed with EM but every symptom seems to point to this. I have been dealing with this since I was in my teens. When my face, ears, and chest turns red, I feel like I'm on fire and have to put myself in front of a fan. My mom tells me that hotflashes feel sorta like this. I have recently seen a rheumatologist because my pcp thought I may have lupus, which tests have turned out negative for this. He has since referred me back to my pcp and I am just so tired of all the dragging around. What kind of physician diagnosed you if you don't mind me asking?
I find the neurologist to be the most helpful with autonomic dysfunction. If it is secondary to an autoimmune disease then a rheumatologist might be your best bet. In most cases, it won’t be your PCP. It might be worth seeing a derm too, just to rule out other conditions of the skin.
Elizabeth - the distinction between sensory nerve dysfunction and autonomic dysfunction is something I have been trying to find more about. I have blood pooling, which seems to be causing me problems, but I do not have the pain associated with flushing. this makes me think my problem may be purely autonomic and not so much sensory due to a sodium channel mutation or something along those lines.
Everything really got worse for me at 21 right after my daughter was born. She also gave me hand food and mouth disease and basically my body really didn't overcome it. Blisters went away but that was it. It is hard being young and having people say you look fine to me. Well thanks but that doesn't make me feel "fine". It was so frustrating. I still get that a lot I'm 33 now but i've gotten used to peoples ignorance on the subject.
I'm so sorry that you're dealing with this disease! Hopefully with knowledge you will be able to better control symptoms and/or progression if that is something you're dealing with. If you have secondary EM your options may be better for treatment, it seems to respond better for some than others. However, it sounds like you have Raynauds, too? If so, it gets a bit trickery, sadly. Mitigating symptoms is the only thing I've found to be helpful at this time.
Just to tell you a little about my situation--I'm 25 years old, I live with my mother and three younger brothers, ages 22, 16, and 11. I have Raynauds and Primary Erythromelaglia, had it since I was 11 years old, but did not get diagnosed till the week before I turned 18. When I was 14 my symptoms really became more apparent when I joined a running club since I had always been an active child. I was stopped dead in my tracks, and my disease has greatly affected my life ever since. I was diagnosed at the Mayo Clinic in Rochester, along with my mother and later, my three younger brothers. It took us years to find out what we had because no doctor knew, so for many years we suffered without a name for our pain syndrome. It has been ruled as Primary, or genetic. Because of this I have chosen to not have natural children, which is heartbreaking for me. I am not able to work, and my world is perhaps confined to a few cool places and my home, but when the weather is just right I take advantage of it and sit outside or take a very slow walk if I can. If I have a foot injury or my feet are flushing too badly and in too much pain to walk, I am pushed in a wheelchair.
My Raynauds and EM affect my face, ears, back of the neck, knees, ankles, feet, hands, and a bit on my arms. My symptoms are bad enough that I experience heat stroke and other autonomic problems after one hour at a doctor's appt. where the office is 72 degrees. I have tried many medications, but with Raynauds and Erythromelalgia together I have had no success. Each drug I took made the pain and disease worse. Because of the Raynauds being so severe I cannot take channel blockers, and have found asprin to do nothing. It's like popping sugar pills. I've also tried neurontin and had a severe reaction, so Lyrica is not suggested for me. I've tried SSRI's with bad reactions also. Ketamine cream made symptoms way worse and caused itching and allergic skin reactions, as did the Lidocaine patches. I have tried numerous vitamin supplements and other holistic approaches with zero success. The only thing that I can do for my complicated situation is to stay in a constant, controlled environment of 58-62 in the winter, 58-68 in the summer . For now it helps me control the pain and I'm thankful for it, as I know many who suffer pain with absolutely no relief.
I'm sorry that you're dealing with this; there are many stages when coming to grips with what this means for you as a young person, so be patient with yourself and your body. It's not its fault that it is sick. Sending warm thoughts to you!