Hi Guys, my hands and feet go between pale, blue and red. I am guessing I have both raynauds and EM. In the cold Raynauds and as soon as it gets hot or I step into the heat, I get flares. Even if I am sitting down without a flare my feet would sometimes be like ‘purply’.
A bit of context, I am a 23 year old male, I developed EM probably about 2 years ago. Like many it started gradual (started first in my hands) and had developed slowly becoming more severe. I think I developed Raynauds around the same time. As things have developed I have noticed that my hands and feet are becoming less and less often their “normal” colour, they just switch between like purply blue and red when flaring. They are always a mottled color. Is this normal for EM sufferers?
As regards what I am doing. I have been working with a dermatologist. We have tried antihistamines/aspirin. Usual stuff. We have been following the the PCDS (Primary Care Dermatology Society) guidelines, it is a great source for EM. We will start some new treatments in the New Year. I have done blood tests to test for other issues, all came up clear. From what I have read, my main interest is in taking mexilitene, from what I have read about EM, sodium channel blockers seem to be a good choice. However, I know my dermatologist wants to start elsewhere. I will keep you all updates on my progress!
Yes I understand the different color variations you are speaking of. I have been informed in the past that I may have not only EM but raynaud’s and Acrocyanosis. Though who knows but my feet are hardly ever their normal color. They are either purplish, almost black or red when flaring. My legs are also almost always mottled. Unfortunatly no medication has resolved this as to date. I hope you find a medication that helps you. Here is a rather grotesque picture of my purple foot. Warning!! Lol…
Yes. This was how my EM symptoms presented. What you are describing does not necessarily sound like Raynauds to me. Remember, EM is caused by blood vessels that are episodically blocked. Having feet that are sometimes cold and then flare is consistent with EM itself and does not necessarily mean you have both EM and Raynauds.
EDIT: for Raynauds affected tissue needs to blanch and be painfully ice cold. Blood flow is completely blocked to the area for an extended duration.
It is hard to tell, but I think you may be right. As I don’t know exactly what Raynauds feels like I am not sure, like in the cold my hands definitely go blue and cold, but I feel like it comes with the EM, they both developed at the same time. But the cold definitely effects me. Did the cold not bother you?
Also my dermatologist has decided to approve my request of being putting in mexiletene. I won’t start until February, but we will begin with 100mg, three times daily. I am just not sure what to expect, I feel afraid that I have put my hopes in one thing and I am not sure what I will do if it doesn’t work out.
Don’t lose hope. I had an appointment with my doctor this week, my first with him in 5 years, and we discussed the years long decline in my symptoms. He said younger patients sometimes recover from the nerve issues that trigger erythromelalgia and ultimately it just goes away, whereas with patients over the age of 40 it typically doesn’t. I currently am taking 150mg of mexiletine once a day, having reduced from three times daily. That is apparently not a large enough therapeutic dose to typically make a difference. As a result, he said I could try stopping mexiletine altogether.
I hope you follow a similar path. It’s important to find something, even if it’s not mexiletine, that will help you remain active. I’m fairly certain exercise was integral to my recovery.
I preferred when my EM affected areas were cold. The cold was not painful. The erythema from the erythromelalgia flares was quite painful. As long as the areas remained cool and weren’t flaring, I was satisfied with that.
What is the difference between Acrocyanosis and Raynauds? I thought they were the same thing (raynauds is an underlying condition which causes acrocyanosis)?
Pub Med states:
Acrocyanosis is rarer than Raynauds syndrome, and contrary to the latter, is characterized by nonparoxysmal, in most cases persistent, painless bluish-red symmetrical discolorations of the hands, feet and knees. It is more frequent in women than in men and becomes manifest before the 25th year of age
Key word “persistent” - which is why I am unsure I have this. Also this did not manifest until after my EM symptoms and I was age 42 at onset.
I have tried various compounding creams, aspirin, lidocaine patches, Amitriptyline, Gabapentin, Lyrica, Antihistamine’s, and Melixetine. Currently on LDN 4.5 once a day. The LDN helps slightly.
Hopefully for your younger age, you will find medication to help eradicate your EM!
That is great to hear your story and how you have made such a great recovery.
Yes, even if mexiltene does not work I will try to be as proactive as possible in trying to find some relief. As regards with remaining active, this is what I find very difficult. I was actually an international athlete throughout my teens in track and field and received a sports scholarship to University. However, a mixture of injuries and developing more interest in my studies made me decide not to pursue the Olympics, I prefer sport as a hobby rather than it being the centre of my life. That being said, I do miss being fit. The past two years or so I have been swimming most days, however since pandemic I have stopped, I now just walk daily with my dog. I can get in the pool but I just flare afterwards and I hate it. Before EM I would spend lots of time in the sauna after the pool just stretching etc and I miss it.
I plan on just keeping walking daily until I try mexilitene, fingers crossed it brings some relief and I am able to return running/swimming/gym etc,
As regards the cold, yes I definitively prefer it to the hear, last summer was not too pleasant (used to be my fav time of the year). Problem is just when you go from the cold outside into a warm house and then flare. But my hands are definitively becoming more sensitive to the cold.
But look, I can only be patient and wait and see. Once I start mexilitene I will update everyone here on how it is going!
Your symptoms sound quiete similar to mine. It is hard to tell if my bluish-red discolorations is persisten or transient. Like I feel it’s transient but those periods when I have it are becoming more persistent. But again I feel like you that it is so mixed with my EM that its hard to tell.
I am sorry you have not found any relief, it seems that you have tried many of the treatments I had planned to try. As regards mexiletene can I ask about your experience on it. For how long did you take it? What was your dose? Side effects? And you felt no relief?
I agree our symptoms of EM are very similar. Summer used to be my favorite time of year, I absolutely loved being in the heat. Now winter is quite horrible as well, as you state from cold to warm can induce a flare. If I’m moving the purplish/mottled goes away but is there when I am not.
I took 150mg 3x a day (slow ramp up). You can check out my experience with Melixetine here:
I hope for you it’s as simple as taking mexiletine and getting back to living. Fitness is very important to me too and I gave up on it for a long time. I’m now back to being in phenomenal shape and very much enjoy training again. It can happen! Please keep us updated on how things are going. I’m rooting for you.
Hi Anthony! My symptoms are very similar to yours- you replied to one of my earlier posts Because of covid, my meetings with Drs have been postponed so I am yet to get medication. But something I have done in the meantime that seems to help:
-CBD oil. I take this orally, usually at least one dropper a day but I don;t schedule my doses. Sometimes I take a few droppers because it also helpes with stress, and it seems to help me if I take it when I am having a flare. I also use CBD topical ointment, or apply the oil directly to my hands/feet. This actually does seem to help too.
-Aspirin. I have been gettin fewer flares in respnse to being cold outside and then coming in to a warm indoors since taking aspirin. Though it’s not 3easy to tell how effective this is because it hasn;t been too cold here in the UK lately. It will be getting chilly from now on though…
Also, I did a course of accupuncture over the summer and I think that really really really helped with my circultaion. I’ve had accupuncture before though and it was completely ineffective. I think it’s important to find a good accupuncturist- if you feel it doesn’t work the first time, try a few other well reputed clinics before concluding that it cannot help you.
Do let us know if you try any medication. I will also post when I finally see the Dr in February (if I do) .