Was wondering if anyone else had similar symptoms to mine? I have no pain or burning but have very red fingertips, bright red feet and my fingertips are super sensitive to touching dry things, particularly paper which is massive issue for me, being a medical secretary. Dermatologist has diagnosed EM purely because she can’t fit me into any other box.
Heidi,
Even when I dont have pain I still have redness to my hands/feet and have sensitivity to touch. This term is called allodynia, and means just that, sensitivity to touch. At times, I can not type or even hold my cell phone due the sensitivity.
Also, I had redness before the severe pain was triggered. Still sounds like EM to me.
If you are unsure about yoou diagnosis, I would ask you doctor to refer to to Dr. Davis and Dr. Sandorini at Mayo Clinic. They are the go to docs in the US for EM.
T
NP2010 said:
Heidi,
Even when I dont have pain I still have redness to my hands/feet and have sensitivity to touch. This term is called allodynia, and means just that, sensitivity to touch. At times, I can not type or even hold my cell phone due the sensitivity.
Also, I had redness before the severe pain was triggered. Still sounds like EM to me.
If you are unsure about yoou diagnosis, I would ask you doctor to refer to to Dr. Davis and Dr. Sandorini at Mayo Clinic. They are the go to docs in the US for EM.
Thanks for that. I’m living in New Zealand and no one seems to know much about it here. Is it a progressive thing? Ie will it eventually turn into a pain issue?
Hello Heidi.
I have pain worth mine but it varies greatly from discomfort and warmth to screaming, crying , praying for relief pain. I’m not a doctor and can’t confirm any diagnosis but I just wanted to add that every ones EM is different. …some with pain some without. It’s also not uncommon to have wildly varying symptoms within one person. I would just work with your doctor on treatments for EM if you feel it needs treatment. A major clue is to weather your redness responds to temperature change or activity. If it gets worse worth warmth or activity even mild warmth can induce it or better with rest and cooling it is more likely your doctor is on the right track. I hope whatever it is is continues to be pain free for the most part.
Take care
Heidi, my symptoms & signs are simular to yours, and i have been diagnosed with EM. I have went to various kinds of specialists: Dermatologists, Neurologists, Rheumatologist, they all said i have EM. I have permanently red fingertips like you, my feet are bright red (mainly the bottoms and the behind the ankle). I have ZERO pain like you. Its all a warm flare for me which is extremely irritating and feels awful. Where i have a different symptom is that my veins in my forearms bulge out during a flare, it feels as if someone has put a rubber band cutting off circulation from my elbow down and all the blood is just pooling in my lower arms/hands. If i dont watch my diet i also get the occasional flare in my feet, knees, ears, but for the most part its all in my hands. I am on no medication, im still figuring that part out. Ive tried gabapentin (didnt work cause i have no pain, and it made me sleepy). Most EM medication is for Pain, i have heard a guy using Ritalin as a vasoconstrictor to reduce flares but i have yet to try that. Right now i just watch my diet and what temperature my house is, and it helps alot. I have had EM since 2011 but i just got diagnosed this year.
HI! I thought I'd chime in here! I'm new to this group and am self-diagnosed. I've had episodic red hands and swelling since my 20's (I'm now 54.) About 15 years ago, I developed Reynaud's (again, self diagnosed) which became especially horrible during chemotherapy for breast cancer. The severity of the Reynaud's has diminished and I'm only bothered by it sporadically. But my hot, red hands have persisted. Recently, it seems only one of my hands is symptomatic and the redness is especially bad. I walked into a store today and the change of temperature turned my hand bright red. How EMBARRASSING! I have no real pain- just discomfort. I also have to say that I am a personal trainer who absolutely loves hot (Bikram) yoga. The bad hand does react to the temperature of the hot yoga room, but not any worse than any time I experience a temperature change. Can you, or anyone, speak to the this? Is it harmful for me to continue with hot yoga? Are there any suggestions for relief of the red hands? Also, is it imperative to get a formal diagnosis from a medical professional? I am not experiencing pain, at this time and my symptoms have been around for over 30 years, and while the redness is worse in the one hand right now, I'm still managing without much pain. Thanks so much for this wonderful resource and community. I look forward to any information and suggestions.
Hi Nutrionut! Since I’ve only been diagnosed ten days ago Im not in a position to offer any advice, only can offer support. Still trying to understand what all of this means. All I can say is I used to be on a tricyclic (imipramine) for PTSD and when I finally got off it in November, I developed symptoms. Back on the tricyclics for last week or so and feet and fingers are still totally red, but the sensitivity has reduced to the point it’s manageable. But no idea if that will keep it at bay!! It feels like a wait and see game!! So sorry you have it too. I think it’s a good idea to see a specialist for your own sake of mind but I’m sure others in this group are more knowledgeable than me to offer advice. X
Hi Nutrionut. I am so glad you ate not is very much pain! I can’t speak to weather it is harmful or not to continue your activities. So little is known about this condition I’m not sure if you could be doing damage to your body if you aren’t experiencing pain or not. It’s always a good idea to seek out a diagnosis in my opinion. It is frequently a long road to diagnosis and should it become painful some day ( I hope not) you would have already found a doctor that could help you instead of spending a few years in pain as you search for someone that will believe you. I hope this isn’t the case and very well may not be but I believe better safe than sorry.
Take care
Hi again Everyone, I wanted to write in again and say thank you for the responses. I'm also hoping for some psychological support! I am a person who has had many medical issues to deal with the last 25 years. While I hate saying this, I will here: WHY THIS NOW? It's a question I ask the universe! I am a personal trainer. I exercise, I eat well, I try to be a good person- etc., etc.! My husband just left here exasperated with me as, once again, he is having to deal with a wife who is dealing with another "health issue!" I have two youngish children (17 and 12) who need me to be their "mom," not someone who needs taking care of. How do you all do it? I'd love to hear from those who remain positive, productive and happy? How do you not ruminate about the progression of this "disorder?" I'm totally pain free right now- How do you deal with the hideousness of the way your hands or feet look? I am 54 years old and I know sound like I'm 12. Very childish, indeed! Anyway, maybe some of you have been in my "head" and can offer some advise??? Thanks so much.
Hello again Nutrionut.
I’m am so sorry it has just been one health issue after another for you. I am grateful to have been healthy and active till my late 30’s. At least I got to do so many wonderful things before I was struck down. I know many have had to deal with this or other conditions starting at a much younger age or its all they have ever known.
I’m lucky to have a supportive husband through this. It’s been about 5 years for myself.
I wish I had helpful advice about how to deal with the appearance of this but mine was so painful from the get go that this was quickly the least of my worries.
As far as how to stay positive this was a struggle at first but after finding out I may live with this the rest of my life I just had to make a decision to be positive to the best of my ability knowing being negative won’t help matters and often it makes things worse. It makes things worse both physically for me and emotionally for me and my husband.
physically any strong emotion good or bad such as stress, crying , laughing or excitement all cause me to burn more.
it took practice because I have always been an emotional person from crying at the drop of the hat at a Comercial with no depression to blame or getting so excited by the simplest thing. I had to make a choice to calm myself to stop the burning that is sure to come if I don’t. At first I found myself crying about the fact I couldn’t even cry anymore!
Now if I feel emotional I just stop close my eyes and take deep breaths till I have control again. I have found this easier to do with negative emotions. It’s much more difficult for me to stop laughing.
I try and figure out what I can do instead of dwelling on what I can’t. Some things I can still do if I stay in my cold home and only do them a few minutes at a time with rest in between. It can take me a day to do what used to take me an hour but I feel so much more accomplished when it’s done.
I make days where I only do things that bring me joy because there is never anything left in me after doing things that need to be done even though I only do a quarter of those things anymore if that. I let my dishes stay in the sink and order pizza for dinner and use what I have to just try and enjoy myself.
Strangely I have found out I am not so bad at making cakes and I love doing this!
I know many people might think how on earth can you make a cake??? I Just do this as I do every thing slowly. It takes me about a month to make one that most could do in a day or two. I set things up so I can do most things such as making decorations while in my recliner And I make sure to bake the cake when it’s colder. In the winter no problem but with summer on the way I will bake them in the middle of the night.
Instead of just thinking you can’t do something because you can’t do it all at one time be creative about how you can do things and do them slowly over time in small increments.
I know what I am saying is easier said than done but the effort is well worth it.
I can honestly say I am happy. Do I have bad days too of course! I just try and make the effort to make more of them good ones.
I hope you are able to still find happiness and fulfillment regardless even through this.
Take care
Hi there. Sorry to hear you have been going through so many health problems and getting frustrated with the new health problem. I too was feeling pretty overwhelmed when I joined this group but after reading how much pain some people are suffering it has put things into a healthier perspective for me. Suddenly how my feet and hands look aren’t so important because for now I can only feel relieved that I have no pain, because I’m a bit pathetic at dealing with pain. Like many people I just “don’t do suffering” . Unfortunately life equates to suffering often. So for now I feel grateful. I guess for me I can deal with the look of it for now and if the pain arrives I will be seeing any specialists I need to and try whatever I can. I certainly am not in a situation at all to give up working, so fingers crossed! I wonder if there have been posts on the psychological impact this disease brings, depression, anxiety, frustration, etc. I think suffering is what has brought this group altogether and I’m so thankful to the others who are in a much worse situation, that they are so gracious in their support. Perhaps helping others helps our own suffering. I guess there’s other forms of help too like psychologists etc that can help with teaching coping skills. Joining this group is certainly a great start. Thinking of you. Heidi
nutritionnut said:
Hi again Everyone, I wanted to write in again and say thank you for the responses. I’m also hoping for some psychological support! I am a person who has had many medical issues to deal with the last 25 years. While I hate saying this, I will here: WHY THIS NOW? It’s a question I ask the universe! I am a personal trainer. I exercise, I eat well, I try to be a good person- etc., etc.! My husband just left here exasperated with me as, once again, he is having to deal with a wife who is dealing with another “health issue!” I have two youngish children (17 and 12) who need me to be their “mom,” not someone who needs taking care of. How do you all do it? I’d love to hear from those who remain positive, productive and happy? How do you not ruminate about the progression of this “disorder?” I’m totally pain free right now- How do you deal with the hideousness of the way your hands or feet look? I am 54 years old and I know sound like I’m 12. Very childish, indeed! Anyway, maybe some of you have been in my “head” and can offer some advise??? Thanks so much.
Hello Heidi.
I couldn’t have said it any better. Helping others with their suffering helps significantly with mine.
Just a couple of months after I lost my ability to work and I was lost…why even exist??? I can’t work , play , have children. What Left TV??? I was in this place and I received an email from Living with Erythromelalgia asking for volunteer moderators. I signed up here when I first got diagnosed and looked around a bit but never got involved. I was still struggling to maintain my life and felt I could get passed this so I don’t need to learn to live with it . After a couple of years of medication trials medical leaves mixed with the least work I can do and still maintain my job.
When I lost everything and was at my lowest with no purpose in life I got this email. I thought …iI could do that! Something I can actually do!!! I asked to be considered and when they said yes I had excitement and joy for the first time in months. Helping others has helped me probably more than I have given.
I will keep my fingers crossed for you heidi.
Alina I am in awe of your strength and totally inspired. I always feel less of a victim in life when I help others. It’s very empowering and gets me out of feeling sorry for myself and out of thinking it’s all about me. As I said, I think it is through suffering we all become united. Both on this site and in life generally. I read of your difficulties and this … If Alina can manage then so can I. So keep up the good work all of you. It doesn’t go unnoticed or unappreciated. X
Alina Delp said:
Hello Heidi.
I couldn’t have said it any better. Helping others with their suffering helps significantly with mine.
Just a couple of months after I lost my ability to work and I was lost…why even exist??? I can’t work , play , have children. What Left TV??? I was in this place and I received an email from Living with Erythromelalgia asking for volunteer moderators. I signed up here when I first got diagnosed and looked around a bit but never got involved. I was still struggling to maintain my life and felt I could get passed this so I don’t need to learn to live with it . After a couple of years of medication trials medical leaves mixed with the least work I can do and still maintain my job.
When I lost everything and was at my lowest with no purpose in life I got this email. I thought …iI could do that! Something I can actually do!!! I asked to be considered and when they said yes I had excitement and joy for the first time in months. Helping others has helped me probably more than I have given.
I will keep my fingers crossed for you heidi.
Thank you both for taking the time to reply. It's much appreciated. I suppose time, reflection on the "good" things I have in my life and, for me, a big dose of not caring what others may think or say about the look of my hands is in order. One last question: does anyone know of a doctor that you can recommend in the northern New Jersey, New York City area? Again, thank you for all of your very strong and inspirational attitudes.
Thank you both so much for your kind words.i am blessed to work with such a good mod team and to have all of you to keep me going. I wish it was just me alone in this but if it has to be I am grateful to have such a kind and supportive group to go through this with.
Nutrionut, have you checked out the member services and found the doctors tab? We add to it as we get more so is always growing. If you can’t find a doctor there you can stay a new discussion and ask the members here if they know of one.
I how you find a good one soon.
Dearest Nutritionut( Jen), I sent you our list of drs for NJ and NY the day you joined our EM community. Its on your profile page lol!
Remember to take lots of photos, keep pain diary and print off some research ( under the toolbox tab at top of page). Go prepared with.plenty of evidence. Sounds awful warning you but we all find we end up having to be our own advocate.
I do hope you are having an easier week. I have finally managed to catch up on everyones posts/emails , so look forward to touching base with you properly :).
God bless
X