Hello - I'm new to the community and would like to share my experience with everyone!

Welcome New Member Introductions
1

Hey guys,

I just wanted to introduce myself and share my story with everyone. I have not yet been diagnosed with EM, and am unsure whether or not I have it. I've been doing some research lately, and some general EM/Raynaud’s symptoms seem to match mine, but others don't. I joined the community because I’d like to share my experience with everyone and hear about others’ as well!

To begin with, I'm a 27 year old male, and ever since I was about 14, I've had this very peculiar circulatory problem related to my hands. Whenever my hands are down at my side, the blood pools in them and they become extremely red (when they're warm, they become beet red; when they're cold, they become a more purplish color). When I raise my hands above heart level, the blood drains downward and they return to a more normal color. The same applies to my feet - when they're warm, they're red; when they're cold, they're practically purple. I spoke to my doctor about this a few years ago and he said my condition doesn't seem to be a real health issue; instead he suggested that because I'm so fair-skinned, the skin on my hands and feet is practically translucent, and my blood vessels are probably just very close to the surface, so the blood shows through the skin (obviously I wasn't very satisfied with this answer, and I've read about similar frustrations with doctors being unable to diagnose these types of EM/Raynaud's/etc.-related problems).

I've done a lot of research on EM and Raynaud's, and the two factors that seem to be very common are: 1) flare ups, and 2) pain. The thing with me is, I've experienced neither of these. I don't have "flare ups" in the traditional sense - for me it's all just about gravity. If the blood can flow down to my hands and feet, it shows through my skin, all the time. I've also never experienced any pain in my hands or feet - they can feel quite warm or cold, but nothing ever close to resembling "pain." This is why I'm so confused about my condition, and was wondering if others in this community had experienced a similar phenomenon as mine, but without the pain. Aside from the pain, I’m also skeptical about having EM because it seems to involve red, hot flare ups, while for me, even when my hands are cold, they are a purplish color when hanging down at my side. And unlike with Raynaud’s, they don’t change colors randomly – they are either “normal” colored when elevated, or red/purple when down at my side… the blood drains in and out within seconds.

Also, one other odd thing that happens with my hands is that, on occasion, I will get these clusters of little red dots on the top of my lower hand/wrist area. They are not raised and are not painful, and go away within an hour or two. It’s definitely another type of blood vessel-related issue beneath the surface. Have any of you experienced this?

All things considered, it’s obvious I have circulation problems, but beyond that, I’m stumped. While, for now, I've been lucky enough to not suffer any pain, my struggle has been with the embarrassment. I'm very self-conscious about my beet red/purple hands and feet, and am searching for some type of solution. If only it were socially acceptable to walk around with my hands up in the air all day, I’d certainly do it!

Anyway, thanks for taking the time to read this rather long-winded post… I just wanted to get everything off my chest to people who can identify with these very strange symptoms! I look forward to getting to know you guys, and would appreciate any thoughts you may have on my condition, and whether this sounds like it could be EM, Raynaud’s, etc…. or something entirely different. Also, while I realize many of you are most likely concerned with the pain first and foremost, has anyone had any success with masking the redness in their hands and feet through some type of cosmetic solution?

Thanks,

Jake

2

HI Jake.

Thanks for sharing your story. You have come to the right place for information, support and very kind people who understand.

First, when I first started having symptoms a number of years ago, they were gravity-based like yours for both hands and feet. I clearly had Raynaud's and the start of EM. It would occur after walking or being in a hot room. When my feet or hands were cold, they would be purplish (which shows a lack of oxygenated blood). Also, I didn't have any pain or burning at first--just a feeling of heat and mostly pressure (like my blood vessels were too full). It was an annoyance at times, but not debilitating.

I now have full blown EM and experience not only heat and fullness, but also the burning pain. I have also developed purple purpura (according to my dermatologist) on my feet and legs--at first they would arise after particularly bad flares just a few at a time. But after so many flares, they now are permanent. I don't know if they are the same little spots that you have, but you can certainly request a dermatological consult from your family doctor. In many countries, dermatology is the medical specialty responsible for treating EM, so you may have the best chance of an early diagnosis from dermatology. And early diagnosis and treatment is vitally important so that nerve damage can be lessened and quality of life improved. I think you might want to read the recent posting by CarterDK who was recently diagnosed with a blood disorder. Early treatment appears to be helping his condition tremendously.

Regarding your embarrassment--I would not recommend that you regularly use cosmetics on your feet as oil-based products that clog pores can make your feet overheat and painful. I know that it is very hard to have such red feet and hands--people wonder what is happening and may ask questions. It bothered me for awhile. Then I realized that I might not be able to change my EM, but I could change my attitudes toward it. Now I choose to look their comments differently -- as concern for me, not because they want to hurt me. I find that I'm no longer embarrassed and realize how much people care and want to help. It is really gratifying. I also use this opportunity to educate people about EM so that more people are aware and hopefully can spread the word. The more people that know--the more people will get proper diagnosis and treatment at an earlier stage. (I have prepared a brief explanation stressing that it is a rare NON-CONTAGIOUS disease that causes too much blood to flow into my feet and this causes the redness and pain). Often people will even offer to help me with carrying things, etc.

Recently, I was able to reap the benefit of sowing these little seeds when when a casual acquaintance said to me that she was so glad that I told her about EM. A friend of hers had the same symptoms and they were getting worse. So, she told her friend who took this info to her doctor and now she is on medication that is helping. It reminds me that we all have the capacity to help change the world----one person at a time.

I wish you the best.

Dragica

3

Hi Dragica,

Thanks for sharing your own experience with me. Your early symptoms of Raynaud's and EM do seem similar to mine. While I do not yet feel any pain or burning, I know what you mean regarding the "pressure" - sometimes when my hands are very warm and not elevated for a while, I feel as if they are packed to capacity with blood.

In the beginning, when you said your symptoms were more gravity-based, was this only during a "flare up" (when you were active or in a hot room)? Or was this all the time? Because as I stated in my first post, I don't have flare ups - my issue is constant. Whenever my hands are down at my side, they always turn a red/purple color. At any given time, even if I'm resting and feeling a cool/comfortable temperature, if I raise one hand up in the air and keep the other hand down at my side, the latter will be markedly redder/more purple than the raised hand.

Also, I appreciate your advice regarding the emotional stress... I'm glad you've been able to come to grips with your EM and have such a positive outlook towards embracing it and educating others. I'm still in the uncomfortable stage where I'd rather hide it than acknowledge it to others, but I suppose that acceptance will come with time (unless I can find a miracle cure).

Speaking of which, may I ask what type of treatment or medication you've undergone to keep your EM in check? Does anything work particularly well?

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HI Jake.

To respond to your questions:

1) I had the full feeling in my hands sometimes when my hands were down even though I was not having a full-blown flare. But was definitely not a constant thing. AT this point in my journey with EM, my feet are always red or purple--there is no remission.

2) SInce you are new to the world of EM, I recommend that you check over several of the discussions and check some of the links, I found Dr. Jay Cohen's online materials on EM especially helpful--just Google his name. He discusses several treatment options as well as a type of protocol to follow. It's important that your doctor rule out any underlying issues that can cause secondary EM----autoimmune diseases, myeloproliferative disorders, blood disorders, etc.l If none of these are present then there a number of options. I have tried several options (starting with the least intrusive and working my way up) and have found that a small amount of 2 drugs taken more frequently is more helpful than one drug. I am on a combo of Lyrica and Cymbalta which seem to act in synergy for me. I still am pretty disabled, but these drugs do allow me to sleep a good 8 hours (as opposed to 1-2 hours night before meds). And if I stay off of my feet, the meds take care of most of the pain except in the late evening. Given your symptoms, I think you might find it useful to read Carterdk's progress report on the discussion titled "One month on: My story with EM" (in yesterday's postings).

There are many resources on this online community that you will find useful--it just takes some time. Also, our wonderful moderators (Alina, Mads and Nel) are very good at summarizing topics periodically or taking questions.

Cheers,


Dragica