I'm new to this site and to figuring this all out. I just joined the site and have already received 3 warm welcomes. I must admit a wonderful welcome.
Here's a little background on my situation... I'm a 31 year old woman, generally healthy, active and confused :( I began having symptoms in the Fall of '10 and Winter of "11. Symptoms included really hot hands, hence the name "hot hands". My finger tips would feel like they were filled with blood that didn't have anywhere to go, I used to call them sausage fingers. They would radiate heat, turn bright red and the only way to eliviate the pain was to run my hands under cold water, or squeeze my fingers :) I also noticed the hot feet, my toes would burn and I couldn't wait to get out of my shoes. Among the other symptoms, my body didn't feel like it was regulating heat well. I've learned to ALWAYS dress in layers.
I have been to my regular doctor and she didn't have a clue. I've been to a rheumatologist, who also didn't see anything. They tested me for everything else under but they found nothing (luckily). But now i'm beginning to feel a bit crazy. I mentioned it to my dermatologist who seems to think that this is what it is.
But now what????
Where do I go from here? Is there any particular doctor that I should go to in order to help me figure it out or get diagnosed?
It's nice (for a lack of a better term) to hear from somebody who also experiences a lot of issues with their hands. Just like you, my fingers feel like they're full of blood, and get really hot (or at least feel hot to me), with my fingertips having a propensity to sting like crazy, making resting them down on certain surfaces really difficult. That's not to mention my feet as well.
Believe it or not, it was a cardiovascular specialist at the Cleveland Clinic that diagnosed me with EM based upon my past history. This condition is difficult, because there is no real definitive test to confirm it except for a genetic test, but that's only if your EM is primary. The best you can do is to find somebody who is familiar with it and try to do what they tell you...but, you can also do research yourself and try to find some solutions that work for you. You are your best resouce; just don't overdo it. It will drive you nuts.
Don't feel crazy - we have all felt crazy at one point because of this, but now people are starting to understand that EM is out there. Keep trying to find a solution, and find somebody who has experience with EM patients. Good luck.
Welcome! This is a great site to get information on EM. At least you know that you aren't crazy and you're not alone.
I have no problems with my hands, just my feet. I have had polycythemia vera for 33 years. I feel PV has a lot to do with the problems that I now have with my feet. It started a few years ago when I felt like I was walking on stones under my left foot. Within 6 months, my feet would get icy cold, burning hot, feelings of electrical currents in them & sometimes all at once. The right foot also became involved and progressed the same way.
I take either a Celebrex or two Aleve in the morning. I have pain & discomfort during the day but I don't notice it too much & it's very tolerable. About 5:00 pm the pain increases. About 8:30 I usually have 1/4 of a pot cookie, which eases the pain. At 9:00, I take a tramadol, a baby aspirin, a Lorazepam and an Advil PM. The pain usually subsides enough for me to fall asleep by 11:00 - 11:30 pm. A few nights a week, I am up for hours and nothing helps. The drugs eventually take effect.
This is a really miserable condition that has affected my daily activities to the extent that there are some things I can no longer do, like my afternoon workouts, running, walking for over 1/2 hour. I still do an early morning 1hr, 20 min. workout at least 5 days a week, but the mornings are the only times I can tolerate this kind of activity.
I hope that you too kind find some relief and a good routine. Keep moving, it's very important.
I began having symptoms around the same age...I am 37 now and disabled. I have FMS and well as sensory neropothy in my extremities. I burn hot and cold in my hands, feet, face and scalp. I have been searching for seven years for a proper diagnosis as Docs just blow EM off. Try to see a neurologist. I have been to Stanford but I understand the Mayo Clinic is familiar with EM. Good luck to you!!!! Oh, and I was diagnosed crazy before the docs figured it out so stay true to yourself...YOU ARE NOT CRAZY!!!! <3 Also, getting a routine is good advice. My FMS wants to move for relief but the EM wants to rest. Listen to your body and your will find out what works for you. All of my best.
Hi and welcome. It's so hard to find a doctor knowledgable about EM that you aren't likely to find one locally. So, you may want to read old posts here to educate yourself about supplements and meds that may help and even clothing/shoes and such that may help. And consider joining TEA (The Erythromelalgia Association) to get to the research articles, newsletters and member survey results so you can share those with a good doctor who is willing to help you. Many different types of specialists CAN treat EM, but they have to be willing to learn about it and most are only willing to look it up once somethere and go by whatever that resource says and it's often wrong (for a particular patient) because we all respond to different forms of treatment. BTW - TEA is not a support community, but there's great info there that is not visible on the website unless you join.
Another option is to travel to see an EM specialist, but they are few and far between.
Meds/Supplements that help me most are magnesium supplements, at a properly high (but safe) dose and treatment for my Mast Cell Activation Syndrome (Zyrtec, Zantac 150, oral Sodium Cromolyn). But those don't work for everyone.
Your story mirrors mine, except my redness started in my toes, then my hands. Occasionally, it shows up in my ears and face. The description of stinging pain is a good one. I keep trying to tell my husband that it feels like my feet and hands are very badly chapped and raw. I keep them "lotioned up" continuously.
My situation is further complicated in that I also have Raynaud's Disease so winters are a crazy balancing act where I try to stay warm so my toes/fingers don't go numb without getting overheated and setting off an EM flare.
I have seen more doctors and had more lab work done in the last year than I have in the last 15 years. I got the diagnosis early, but have been seeking an underlying cause. Nothing has ever shown up in the blood work until recently. I am now starting the diagnostic process over now that I am now (finally) showing positive for an autoimmune disease. Hopefully by treating the underlying cause, I will get some relief on these other issues.
The advise you have been given so far rings true with me as well. My doctor hadn't heard of it and it was first suggested as a possibility by my neurologist (I have epilepsy), who didn't know a lot about it, but had heard of it. After I researched the condition and took the findings to my regular doctor, he educated himself and sent me to a surgical dermatologist, who was knowledgeable.
Hi my names Danny, I'm a 34 year old male living in the northeastern US. I started coming down with symptoms like yours in my feet 4 years ago. I won't repeat what you said but yes, very much the same. This past year it showed up in my hands and has progressed up my legs and arms. This past month I feel it in my face. The worst is it feels like someone is putting my head in a vice. Don't give up yet, take care of yourself, know what sets off the triggers, if you plan on over doing it one day, plan on resting the next, and don't beat yourself up if you can't do something you want to do, try to find a different time or way of doing it. So far I've been my own doctor with this disease, as my doctors have been slow to move and only this year diagnosed me. Well be prepared for a lot of different doctors and a lot of blood work but don't take what any one of them say to heart - go back and do your own research so you feel confident in the direction your doctors are going. Always speak up and let them know exactly how you feel. Keep coming back here when you need support from people who know what your going thru! Peace and Love
btw I got diagnosed by a neuroligist also saw a hematoligist to rule out blood diseases, but you want to see as many doctors as you can to find the underlying cause...skin biopsy, bone marrow biopsy, etc...I think if i could find whats causing this I could treat it and it would go away, so I know what it is, I don't need the doc to tell me, I just want to know WHY it's happening and if their is anything I can do to reverse it.
NiceGuyDanny said:
Hothands -
Hi my names Danny, I'm a 34 year old male living in the northeastern US. I started coming down with symptoms like yours in my feet 4 years ago. I won't repeat what you said but yes, very much the same. This past year it showed up in my hands and has progressed up my legs and arms. This past month I feel it in my face. The worst is it feels like someone is putting my head in a vice. Don't give up yet, take care of yourself, know what sets off the triggers, if you plan on over doing it one day, plan on resting the next, and don't beat yourself up if you can't do something you want to do, try to find a different time or way of doing it. So far I've been my own doctor with this disease, as my doctors have been slow to move and only this year diagnosed me. Well be prepared for a lot of different doctors and a lot of blood work but don't take what any one of them say to heart - go back and do your own research so you feel confident in the direction your doctors are going. Always speak up and let them know exactly how you feel. Keep coming back here when you need support from people who know what your going thru! Peace and Love