My doctor believes I have erythromelalgia, but I'm not sure because I'm not experiencing the pain like the rest of you. I have red palms and feet, intense heat...causing me to sleep with a frozen ice pack in my hands; tingling in the tips of my fingers and my fingers are incredibly dry and cracked... but I can't say I have pain. Its very uncomfortable, but painful, no. Is this EM? He's prescribed Amitriptyline HCL 25 mg. What do you all think?
causing me to sleep with a frozen ice pack in my hands
And why? If not because of pain, its proly bcuz of the discomfort the heat causes you, right? As you can read in some previous discusions, EM can be also pain-free (wish I had it ;)) Did you seek the doctor because of the discomfort? Does the heat bother you? If yes, then I'm sure your doc was right with the diagnosis. You can try Amitriptyline and see if it helps.
Good luck and welcome :))
xoxo, Liz
Ah...so EM can be pain-free. I've searched and searched and haven't found that little tidbit of info. Yes, it is uncomfortable, but I can't say painful. My feet and hands feel like they will explode (thus the hot packs), but not because of pain...because of the heat. I also don't get alot of swelling...just bright red skin on palms of hands, knuckles and feet... dry, cracked fingers...and lots of heat. Yes, after reading on this forum, I feel blessed. Could the no pain be because I'm just starting out with EM...like a first stage? Do I have pain to look forward to??? =/ I've had the symptoms since the summer. Sorry for asking so many questions. I just really want to be convinced that I have EM before I start medications for it. Like I said, I'm cautious. Thanks for the info, Liz!
liz said:
causing me to sleep with a frozen ice pack in my hands
And why? If not because of pain, its proly bcuz of the discomfort the heat causes you, right? As you can read in some previous discusions, EM can be also pain-free (wish I had it ;)) Did you seek the doctor because of the discomfort? Does the heat bother you? If yes, then I'm sure your doc was right with the diagnosis. You can try Amitriptyline and see if it helps.
Good luck and welcome :))
xoxo, Liz
Hello Cindy Lou
Please be careful with the ice packs, if your skin is damaged already with the heat and swelling you are going to make it worse with the ice. At least cover the pack with a cloth. If you get ulcers they will take a long time to heal and will cause you pain. I didn't have pain at first with the EM but sorry to have to tell you that I do now. Wish I could go back to just the heat.
I hope you don't develop worse symptoms, I really do.
If your doctor has heard of EM then count yourself one of the lucky ones. So many doctors have never heard of it or refuse to believe such a thing exists.
Good luck but please look after your skin.
Tilly
thanks, Tilly. Yes, I usually put the ice pack in a pillow case. Thanks for the concern. I went to four doctors before being referred to a dermatologist who practices at a hospital associated with a university. He took a biopsy and more blood work and told me he believed it was either dermatomyositis or erythromelalgia. The biopsyy and blood results ruled out the first so that's why he's settled in on EM. We actually discussed the results and diagnosis over the phone, so I didn't get much info on the disease. He wants me to take 25mg of Amitriptyline and if nothing happens after 5 days, double it to 50mg. Atfter three weeks I'm to meet with him again. He also said there are several ways to treat this and its different for each person. Because I don't know much about EM, I'm trying to learn about it on my own. Google pointed me to this site and I appreciate any little bit of information I can glean. I'm starting to find out that this isn't going to go away forever...I'm basically trying to manage flare ups. Thanks for your response. I hope to get some more information to convince me that this is definately the correct diagnosis.
tillyp said:
Hello Cindy Lou
Please be careful with the ice packs, if your skin is damaged already with the heat and swelling you are going to make it worse with the ice. At least cover the pack with a cloth. If you get ulcers they will take a long time to heal and will cause you pain. I didn't have pain at first with the EM but sorry to have to tell you that I do now. Wish I could go back to just the heat.
I hope you don't develop worse symptoms, I really do.
If your doctor has heard of EM then count yourself one of the lucky ones. So many doctors have never heard of it or refuse to believe such a thing exists.
Good luck but please look after your skin.
Tilly
Sounds like an EM to me, really. Ppl here experience various symptoms, I never had probs with dry cracked skin, but lotta ppl here do. About the pain, in my case, I have had very bad pain in my fingers months ago before I experienced the first heat attack. From what I've read there are two types of EM, one with pain and the other is pain-free. I'll try to search for the discussion where we were talking about that. Btw its good to read some of the discussions here, i found that very helpful and inspirative. Different ppl have different stories and you can get some useful informations of it :)
Thanks, Liz. I appreciate the help.
liz said:
Sounds like an EM to me, really. Ppl here experience various symptoms, I never had probs with dry cracked skin, but lotta ppl here do. About the pain, in my case, I have had very bad pain in my fingers months ago before I experienced the first heat attack. From what I've read there are two types of EM, one with pain and the other is pain-free. I'll try to search for the discussion where we were talking about that. Btw its good to read some of the discussions here, i found that very helpful and inspirative. Different ppl have different stories and you can get some useful informations of it :)
Hi Cindy Lou, I am glad I just found your other post. The more I am reading this, the more our symptoms sound similar. I am just wondering how old you are? And how long you have been experiencing symptoms? I am just curious, trying to figure out the similarities between me and other people that don't experience pain with what is most likely EM. (I am 23, and have had Raynaud's for 15 years and have been experiencing EM like things on and off since then, but worse for the past maybe 4 years or so).
Well, our symptoms are similar but that's about it. I'm actually 53 and have been having issues for a few years. The first symptoms started a few years ago...my toes would turn purple when I would sit down with no shoes or socks on. It was odd and my kids noticed it and seemed alarmed. My GP doctor dismissed it. Then this summer my hands started getting very dry and cracked and wrinkly, like they had been in water..constantly. Then the heat started in my hands and feet and now my hands and knuckles are continuously red, with cracking and tingly fingertips and my feet flare when I am on them alot. I live in Michigan and don't wear socks, despite the cold temps. I don't have pain, and for that I'm thankful! My mom has Reynaud's...so I'm guessing heredity is involved somehow. So sorry you have to deal with this at such a young age. I was blessed to have 50+ very healthy years. =/
. aftertheteacups said:
Hi Cindy Lou, I am glad I just found your other post. The more I am reading this, the more our symptoms sound similar. I am just wondering how old you are? And how long you have been experiencing symptoms? I am just curious, trying to figure out the similarities between me and other people that don't experience pain with what is most likely EM. (I am 23, and have had Raynaud's for 15 years and have been experiencing EM like things on and off since then, but worse for the past maybe 4 years or so).
Hi Cindy Lou, the feet thing is definitely alarming looking. I had to take my shoe off at work once (due to something different actually), and while I was sitting for a few minutes with it off my foot turned blue and my coworker was so weirded out by it that she actually told other people, "The other day Sarah was just sitting there and then her foot turned blue!" Haha. Oh well. I'm sorry about the cracking in your fingers, that sounds really frustrating. I know what you are talking about with the prune-y look though.
I consider myself blessed though, because even though I am young I experience no pain with either the Raynaud's or what might be EM 99% of the time. I have experienced painful Raynaud's but it is not the norm. Mostly my symptoms are just uncomfortable. And they go through periods of being worse in intensity. Also, and this sounds weird, but since I have had Raynaud's since I was 8, I feel like I am used to my hands and feet feeling weird...I kind of can't remember what it is like to go a whole day without having my hands and/or feet feel too hot or too cold.
I'd say that "very uncomfortable" means you are experiencing pain, just not the very severe nerve pain that can go along with EM. I had that type of pain, just hands feeling uncomfortably hot, for about 6 years before the severe stuff started. Like you, I had asked doctors about it and I did use ice to relieve it (wrapping my hands around a glass of ice). If you truly were not experiencing any pain, your hands/feet would only be red, not uncomfortably hot.
I'm impressed that your doctor is knowledgeable enough to get that EM can just cause that level of pain, not necessarily worse pain, and that he's trying to come up with a solution. I hope he's also looking into whether it's secondary to another undiagnosed condition for you. It's possible the ami may help. It helped me for a few years, but then I had side effect problems (dryness, daytime grogginess) that bugged me too much for the mild pain relief I was getting.
This is the medical definition I see most often when googling "pain medical dictionary definition": It just says "unpleasant", so I think that fits you:
"Pain is an unpleasant feeling that is conveyed to the brain by sensory neurons."
Good luck with your treatment.
Cindy Lou, you said you are in MI. I am too. What doctor or doctors have you seen? How are you doing now and what meds, if any, are you on?