EM associated with Raynaud's

General Articles and Research
1

I'm posting this here cuz discussions are more read than blogs and gotta say I found this very interesting. Obviously my case. :)

"It is interesting that most sufferers of erythromelalgia also
suffer from Raynaud’s. In Raynaud’s, the digits become
cold and painful due to a tightening or constriction of the
arteries which normally supply blood to the affected parts.
In erythromelalgia associated with Raynaud’s, the sufferer
does not necessarily notice the blanching of the digit or
limb but is merely aware of the hot burning extremity. It
would therefore appear strange that treatment for this
form of erythromelalgia is to dilate the blood vessels.
Superficially the symptoms of Raynaud’s and
erythromelalgia appear to be opposite i.e.
vasoconstriction in the case of Raynaud’s and
vasodilation in erythromelalgia. It has recently become
apparent that this may not be correct and the evidence for
increased blood flow as a cause of erythromelalgia is poor."

from: http://www.raynauds.org.uk/images/stories/75-em.pdf

2

now I know why sympatectomy helped me. What a pity it had not permanent effect for my hands. But who cares & thanx God for the feet! Hopefuly they gonna stay this way :)

again from: http://www.raynauds.org.uk/images/stories/75-em.pdf

"

A mild vasodilator (to
prevent the original Raynaud’s phenomenon) or
analgesia can help some patients." (EM patients)

3

In my lupus groups, especially in the lupus community on Ben's Friends, people tend to ignore me when I say that they should explore the possibilty of EM when they experience redness and burning pain in their extremities. I'm the only person who mentions EM, everyone else always attributes these symptoms to Raynaud's, "Oh, my Raynaud's is all different colors, white, blue, and red.... it's just Raynaud's".

I get frustrated with this attitude, and the way that people aggressively try to shut me down by completely ignoring me and making statements in direct opposition to the medical facts I post about EM. Does anyone else relate to my experiences with trying to raise awareness of EM in communities that have a high incidence of Raynaud's?

JoAnn

4

Hi! Maybe it's just that I've had a long day at work and am having trouble focusing, but I don't quite understand what this passage is saying (I looked at the rest of the link too). Are they saying that EM and Raynaud's are not related to vasodilation/constriction? And if not, what are they proposing is the answer?

Thanks for posting the info, Liz!

5

I have both conditions

6

So first to JoAnn, ppl never pay attention about anything until they dont have to deal with it on "their own skin". So, I'm not surprised about what you're saying of ppl on forums. :)

Now to my post. From my understanding, the article is saying that superficially EM and Raynaud's may appear like completely different (oposite) conditions. One caused by vasodilatation and other by vasoconstriction. BUT that in cases when ppl having BOTH conditions, they don't stand like two different things, but are related. Means the worse your Raynaud's is, the worse will your EM get, simply like if the body is trying to "fix" the extreme cold by making it hot, but it kinda overreacts. That in these cases when patiens dealing with both conditions (EM is the more annoying one, no doubt about that) it helps (in my case it definitely does help) to treat the Raynaud's as a primary condition by using vasodilatators and that it simultaneously improve the EM. As they wrote "A mild vasodilator (to
prevent the original Raynaud’s phenomenon) can help some patients." (patients with both conditions)

It sounds very logical to me, tbh I always felt it this way, so for me the words I read were just reassuring information that I understand by body well.

Simply, if you have Raynaud's, Erythromelalgia can be just secondary to it. If you treat Raynaud's your EM goes away.

That's why my sympatectomy surgery (which dilates the small vessels) has such a possitive effect, despite I was more bothered by EM than Raynaud's before. "In erythromelalgia associated with Raynaud’s, the sufferer
does not necessarily notice the blanching of the digit or
limb but is merely aware of the hot burning extremity."

Using vasodilatators is definitely helpful in these cases. Let's call it EM secondary to Raynaud's.

I hope I wrote this at least a lil bit understandable, I'm not native English speaker, so sorry for this. :)

This all also means when you have EM secondary to Raynauds that every cooling down your extremities during the EM flare makes it all only worse, putting you into the vicious circle. The more cold the more hot follows. :)

For me this works on 100%. And dont forget it doesnt have to be just getting really cold and feeling really bothered by Raynaud's, in EM secondary to Raynaud's just chilly feet one day usually means burning feet in a close future. (the same day, the other, or even the next week.)

xoxo, Liz

7

Liz, I think you're absolutely correct in your interpretation of the article. And your English is superb! :)

That's very interesting that treating your Raynaud's has helped your EM.

I rarely have Raynaud's flares anymore, it's almost all EM now. But if my feet do turn cold and blue, I don't try to warm them as much as I might have in the past, because it triggers an EM flare down the road, as you say. And I never use extreme methods of cooling (such as ice), rather just leave feet uncovered as much as possible. I have noticed that ice or even cold water triggers worse EM later.

Thanks for all the info!

xoxo

JoAnn



liz said:

So first to JoAnn, ppl never pay attention about anything until they dont have to deal with it on "their own skin". So, I'm not surprised about what you're saying of ppl on forums. :)

Now to my post. From my understanding, the article is saying that superficially EM and Raynaud's may appear like completely different (oposite) conditions. One caused by vasodilatation and other by vasoconstriction. BUT that in cases when ppl having BOTH conditions, they don't stand like two different things, but are related. Means the worse your Raynaud's is, the worse will your EM get, simply like if the body is trying to "fix" the extreme cold by making it hot, but it kinda overreacts. That in these cases when patiens dealing with both conditions (EM is the more annoying one, no doubt about that) it helps (in my case it definitely does help) to treat the Raynaud's as a primary condition by using vasodilatators and that it simultaneously improve the EM. As they wrote "A mild vasodilator (to
prevent the original Raynaud’s phenomenon) can help some patients." (patients with both conditions)

It sounds very logical to me, tbh I always felt it this way, so for me the words I read were just reassuring information that I understand by body well.

Simply, if you have Raynaud's, Erythromelalgia can be just secondary to it. If you treat Raynaud's your EM goes away.

That's why my sympatectomy surgery (which dilates the small vessels) has such a possitive effect, despite I was more bothered by EM than Raynaud's before. "In erythromelalgia associated with Raynaud’s, the sufferer
does not necessarily notice the blanching of the digit or
limb but is merely aware of the hot burning extremity."

Using vasodilatators is definitely helpful in these cases. Let's call it EM secondary to Raynaud's.

I hope I wrote this at least a lil bit understandable, I'm not native English speaker, so sorry for this. :)

This all also means when you have EM secondary to Raynauds that every cooling down your extremities during the EM flare makes it all only worse, putting you into the vicious circle. The more cold the more hot follows. :)

For me this works on 100%. And dont forget it doesnt have to be just getting really cold and feeling really bothered by Raynaud's, in EM secondary to Raynaud's just chilly feet one day usually means burning feet in a close future. (the same day, the other, or even the next week.)

xoxo, Liz

8

thanks everyone for reactions :)

btw i just got home from a walk with my dogs, its horribly freezing there, so my hands and fingers were all red and frozen and painful and now as rewarming they on fire... oh wanted to say, never rewarm your extremities too fast or by using too warm water, it causes chilblains. the best thing is to squeeze em

9

Thanks for the info liz.

10

That's so intense. I mean that information about the cycle. I'm like the queen of self-discipline, so if this is the case, I wonder if I can do something to at least calm down the cycle of EM flaring. Here I am with an ice pack (not direct contact) on my feet , possibly just enabling the problem further. I guess I can try an experiment and just avoid this "treatment," see what happens. Yes, for the EM is so much worse to live with and it's so constant in this weather. Trying to keep it comfortable in the house, but once my body flares, it's just in a state until morning.

11

Of the folks who have responded on this thread, which of you have no diagnosed underlying cause of your EM?

12

This is my first winter flare . Not sure if this makes any difference because this condition is so hard to peg down. But from information gathered from people on this site, my experience and my sister’s experience (she suffers with it as well as raynauds and als)I found moderation may be the key. Otherwise you start a trigger wich bounces back and forth between the two. It might just simply be because my last flare up was in the winter months, but I found it much easier to manage because I was in control of temperature. But I did find myself saying bugger it and got my feet cold so my whole foot was turning blue and purple. But then I’d suffer worse it seemed when they warmed even a little.

13

Hi everyone! I have been diagnosed with both Raynauds and EM for years. I recently changed rheumatologist and this one says that with raynauds your fingers turn white first. I have not had a problem with my feet or hands turning white but they do change colors like blue, purple, red when they are cold. Also when my legs are down the colors change in my shins, calves and feet. When I put them up the color goes away. Does this happen to anyone else? With the EM my hands and feet are red and hot and they stay that way. I also have lupus and fibromyalgia.

14

@Karrick I am so sorry to hear you have all of those horrible conditions. Hang in there and don’t give up!