What's going on?

I'm new here, and I appreciate the welcome! As you may have read on my page, I haven't been diagnosed with EM, but when I learned about it, it fit me pretty well, and I've been trying to figure more out about it!

One of the things that can be frustrating about stuff like this, especially for me, is so much of what you find on the internet is more serious cases. But for me, it's not as debilitating or constant as others (and I am thankful for that). I have a lot of different medical issues, all of which tend to be on the milder side of the spectrum, which is good, really, but harder to connect when everyone else I come across has a much more severe case! I can't relate to many of their pains, frustrations, or struggles, and I worry that others will "blow me off" because of it.

I don't really know when these things started happening to me. It seems like around 17 or so, things just started to change (just in general). As college progressed, I just learned to get used to it. Joint pain, IBS, Raynaud's, etc, etc. It was just .. there. No one understands, and it's hard to make it seem like it's a big deal when it's not "in your face", so to speak. I was at one point diagnosed with fibromyalgia, but then had that "revoked" last year by a rheumatologist, who said I have "benign hypermobility syndrome". I don't really know if either fit me well. Just another thing to add to the pile, I guess. But, as I said, it's just "not that bad" - or maybe it's just that I've accepted it and ignore it as much as I can. I take meds to control my joint pain (mostly my hips), so I don't notice it much anymore, but if I run out of meds it comes back quickly. It's just, I don't know... strange. I really do tend to overlook a lot of things now - it's life as I know it, I deal with it as I can, and I move on.

When this EM thing started, that was odd. I don't really know how to even explain it to people (especially before I even heard EM). People always ask if I have "circulation problems" - I don't know! It just... happens. I remember over the summer my class took a trip to the beach and as soon as we finished setting up my feet were red, and someone told me to put on sunscreen (as if I was already burning), and I said that's just normal. My feet are hot, and they hurt, but it just happens (and yes, I did put sunscreen on my feet!) The hands can really suck - I get swollen so easily in both my hands and feet, and then you put this red, hot, "tight" feeling and it makes it harder to write or type. But I'm a student, and I have to keep pushing through it. Eventually, it will go away. There's no rhyme or reason to it. When it happens, I just wait it out.

Something that has bothered me, particularly with the "official description" of EM is that elevating my legs does not alleviate my foot symptoms. Actually, having my legs up can be a trigger! One of the times I notice it most is when I'm sitting up in bed, with my legs out in front of me. It only takes a few minutes and I'm kicking off the blanket and "airing out" my feet because they're hot and red and swollen. It's so strange! But because being up can be a trigger, there's really no good way to make it go away!

For some reason, I'm not sure why, I get swollen really easily. I don't know if it's from this, Raynaud's, or something else. But man, it is so annoying! I can't sit in barstools or any kind of chair that has me elevated, even if there is a foot rest. I will, guaranteed, develop swelling in my feet, fairly quickly. When we're place with seats like that, I'll sit for a little, and then stand for a long time. And standing is just as bad at times, but it's better than the sitting. When I walk, I hold my hands in a strange "fist" that, while it may not prevent swelling, feels the best when it happens. I start off with my hands like that, because they will get swollen and uncomfortable, and for some reason that fist position feels better!

I guess the last thing I have to say for now is that the last 3 nights I have had hand flares. I don't know if it's just something I'm paying more attention to or what, but it's been every night! Last night took a while to go away, but I was writing for school so I just had to push through it. It's funny, every time it happens and I show my husband, he tells me how hot my hands are! It's like he's surprised every time! Hahaha! Although, I can't entirely blame him, normally I'm a cold person, so it is quite a temperature change!

Well, that's probably enough babble for now. I think this ended up being kind of disjointed and rambly, but it will have to do!

Thanks for allowing me to join! I'm hoping I can learn more and just connect with people who experience something similar!


Your experience is very similar to my own. Years ago when my symptoms first started my doctor tried to convince me that it was all in my head and my feet weren't really burning hot although I would sometimes have to sleep with ice packs to try and cool down my imaginary burning feet

. I believe I have secondary EM, possibly brought on by another underlying health problem that turned out to be lung cancer. It could be totally unrelated but before my diagnosis of LC I had lots of weird things going on in my body. I know what you mean about elevating your feet not always giving relief, sometimes my flare ups start before I even get out of bed in the morning. There's no rhyme or reason to it.

I'm so happy to have found this site. I'm looking forward to connecting to other people with EM and picking their brain about their experience with this odd disease. I hope to chat with you more.



Hi leelee,

I am probably at the "severe" end of the EM scale, but I can relate to a lot of what you are saying. I also have Raynaud's, problems with swelling (more on that later) and my joints, skin and muscles are loose. BTW, if people ask if you have circulation problems, say "yes". They can understand that and it's a good starting point. I imagine that most of us have been told that it is all in our heads or that we are faking the pain to try and get drugs.

Your health problems may not be at the "severe" level individually, but taken together, they do restrict your life and cause suffering. I get annoyed at those who tell others that "your suffering isn't as severe as mine", that's rubbish. We are all suffering, while the severe and mild are useful labels for the extent of our EM, that doesn't automatically apply to the level of suffering. Sorry, that's my rant for the day!

I was a little concerned about the swelling, have they ruled out something called lymphodema? I have that, it is where the lymph vessels are either damaged or didn't form properly, and cannot drain the lymph (fluid in the tissue) from your limbs very well. Otherwise, if your bloodflow is affected, then the production of lymph can be affected too.

I hope that you get a diagnosis soon, perhaps ask on here for a recommendation to a consultant. Also look at the erythromelalgia association website (www.erthromelalgia.org or www.burningfeet.org) as they have leaflets and articles to print out and take to your doctor to get a diagnosis. Good luck and let us know how it goes.