So we have been told that the autonomic nervous system controls our blood vessel activity and that too much vasodilation causes the redness, swelling, burning pain of EM, in other words, our system is out of whack and that is part of what EM is. Supposedly the blood vessels constrict when we are up and busy (that would ease our EM symptoms) and they expand in the evening when we settle down, which causes us to have increased pain and swelling.
So far that makes sense.
But why are the symptoms already way down early in the morning, a few hours before I get up? I am still in-active in bed - shouldn't the painful swollen condition, that started late in the evening and increased before I even went to bed, still be there? I would understand if the flare started to go down AFTER I get up - but not before? That sounds like the nervous systems orients itself not by my activity but by the local clock - when it gets dark it starts to dilate my blood vessels and stops when the sun comes up. And that sounds ridiculous.
So how does the nervous system control constriction and dilation of the blood vessels in a healthy person? By activity? Or by the clock?
great question but not so simple an answer.... we are not just looking at vasodilation in EM. Research by Belch et al suggests 3 sub types of EM - vasodilatory, vasoconstriction, and thrombocytosic - hence subsequent known difficulties in actually treating this thing. We also need to know what type we have - plus whether primary or secondary. According to Belch theory vasoconstrictive Em ers should respond to infusions/invasive approaches ie: sodium channel blockers such as lidocaine - mexiletine(note i say should lol!). We all know that despite certain shared triggers most of us also have no rhyme or reason for our flares. This is a wicked wicked disease!
Your autonomic system question - well both is the answer. However Cohen is great explaining this on this http://www.medicationsense.com/erythromelalgia.html. Biorythmns - metabolism are both natural and induced - malleable, and function on both conscious/unconscious levels - thus the importance of trying to reduce fatigue, stress, depression.
If your EM displays a biorhythm (mine doesnt and my EM symptoms dominate 24/7)- it could be used to tailor treatment - coping mechanisms
I have several research papers if you are interested or would like to discuss. I apologise for not being well enough to sit/type and further elaborate here.
Hope you are 'comfortable' at the moment dear friend
Domina, it's really interesting that your flares have stopped before you even wake up. Mine seems to make more sense with what you were saying. I am in full flare mode from nighttime to about 30 minutes to 1 hour (sometimes longer) after I wake up. I also think that body heat has something to do with it. When I wake up my body is nice and warm from sleep, but as I drink my morning smoothie my body cools down and so does my flare. I let myself get to the point where the icy smoothie is making me shiver, and I think being that chilled helps my flares come down faster in the morning.
I have no idea if that's a thing or just my body acting weird again, but I thought I'd throw it out there in case anyone else has a similar after-wakeup response like me.
Domina, it's really interesting that your flares have stopped before you even wake up. Mine seems to make more sense with what you were saying. I am in full flare mode from nighttime to about 30 minutes to 1 hour (sometimes longer) after I wake up. I also think that body heat has something to do with it. When I wake up my body is nice and warm from sleep, but as I drink my morning smoothie my body cools down and so does my flare. I let myself get to the point where the icy smoothie is making me shiver, and I think being that chilled helps my flares come down faster in the morning.
I have no idea if that's a thing or just my body acting weird again, but I thought I'd throw it out there in case anyone else has a similar after-wakeup response like me.
right now the temperature in my place is around 55-60 degrees in the morning when I get up - I put on a warm robe, drink 3 or 4 cups of hot strong coffee while sitting at the computer and guess what? - Nothing happens until I start to move around, get dressed, fix breakfast ........ - than the soles on my feet start to burn a little and my left hand (that one is my biggest problem) starts to hurt - actually it gives me the feeling during the day that the pain and redness is more due to touching things than anything else. I have done mornings totally without coffee and there is no difference.
great question but not so simple an answer.... we are not just looking at vasodilation in EM. Research by Belch et al suggests 3 sub types of EM - vasodilatory, vasoconstriction, and thrombocytosic - hence subsequent known difficulties in actually treating this thing. We also need to know what type we have - plus whether primary or secondary. According to Belch theory vasoconstrictive Em ers should respond to infusions/invasive approaches ie: sodium channel blockers such as lidocaine - mexiletine(note i say should lol!). We all know that despite certain shared triggers most of us also have no rhyme or reason for our flares. This is a wicked wicked disease!
Your autonomic system question - well both is the answer. However Cohen is great explaining this on this http://www.medicationsense.com/erythromelalgia.html. Biorythmns - metabolism are both natural and induced - malleable, and function on both conscious/unconscious levels - thus the importance of trying to reduce fatigue, stress, depression.
If your EM displays a biorhythm (mine doesnt and my EM symptoms dominate 24/7)- it could be used to tailor treatment - coping mechanisms
I have several research papers if you are interested or would like to discuss. I apologise for not being well enough to sit/type and further elaborate here.
Hope you are 'comfortable' at the moment dear friend
Thank you mads, that reply was very nice - I'll have to think about everything a little bit more and would love to read the research papers that you have but I don't want you to go through any trouble especially not if you are not feeling well.
It's amazing how different everyone's EM is. Even when my feet have stopped burning in the morning, if I walk around they start up again, though I don't think that has to do only with time of day (though obviously night is worse across the board) but maybe severity of EM? Maybe flares don't let up as soon in the morning as EM progresses?
Domina said:
Tracey,
right now the temperature in my place is around 55-60 degrees in the morning when I get up - I put on a warm robe, drink 3 or 4 cups of hot strong coffee while sitting at the computer and guess what? - Nothing happens until I start to move around, get dressed, fix breakfast ........ - than the soles on my feet start to burn a little and my left hand (that one is my biggest problem) starts to hurt - actually it gives me the feeling during the day that the pain and redness is more due to touching things than anything else. I have done mornings totally without coffee and there is no difference.
It would be great to be able to map individuals to either the 3 sub types of EM as above - vasodilatory, vasoconstriction, and thrombocytosic.
I assume there isn't any method in doing this? (would people slot into only one sub type during their EM 'lifecycle'?) How did they come to these 3 sub types?
'Thinking out loud' here - if there is a defined sub type for the 'EM lifecycle' then effectively people could be medically categorised.
Eg: If the members here could look up experiences with lifestyle, medications, etc based the sub type, it might help to reduce the trial and error significantly...
But I am also assuming I am making some rather large assumptions! :)
It would be great to be able to map individuals to either the 3 sub types of EM as above - vasodilatory, vasoconstriction, and thrombocytosic.
I assume there isn't any method in doing this? (would people slot into only one sub type during their EM 'lifecycle'?) How did they come to these 3 sub types?
'Thinking out loud' here - if there is a defined sub type for the 'EM lifecycle' then effectively people could be medically categorised.
Eg: If the members here could look up experiences with lifestyle, medications, etc based the sub type, it might help to reduce the trial and error significantly...
But I am also assuming I am making some rather large assumptions! :)
It would be great to be able to map individuals to either the 3 sub types of EM as above - vasodilatory, vasoconstriction, and thrombocytosic.
I assume there isn't any method in doing this? (would people slot into only one sub type during their EM 'lifecycle'?) How did they come to these 3 sub types?
'Thinking out loud' here - if there is a defined sub type for the 'EM lifecycle' then effectively people could be medically categorised.
Eg: If the members here could look up experiences with lifestyle, medications, etc based the sub type, it might help to reduce the trial and error significantly...
But I am also assuming I am making some rather large assumptions! :)
Hi, this is my first comment - I'm a new member. My EM is also 34/7 (sorry, a typo - but then that's how it feels, right?) in my feet, and also worse afternoon, evening, wee hours of morning. As "MADS" mentioned above, Dr. Cohen says the sympathetic and parasympathetic nervous systems normally switch control days and nights - vasoconstrictive in the morning to get going for the day, and vasodilating in evening to allow relaxation and sleep and repair. Maybe when EM is not too advanced, these systems are still somewhat effective, improving morning symptoms temporarily.
I just read about EM, in an article by the National Organization for Rare Disorders, Inc., under "causes" (I don't know how to give you a link), that some EM sufferers, when NOT having a flare, actually have cooler skin temps than normal, implying possible temporary abnormal vasoconstriction, until once again with flaring, they go into abnormal and sustained vasodilation (which the Norwegians say might be due to vaso-tunneling into surrounding tissue, like little swamps in the feet).
I'm confused by "3 Sub-types of EM", vasodilation, vasoconstriction, and thrombocytosis. I thought (as the article I just mentioned says) the vasoconstriction aspect was not a "sub" type, but sometimes a part of the mainly vasodilating type. Can anyone give me some articles to explain this further?
I'm so glad this site, and this discussion, are available! Thanks,
Hmmm, I may have just gotten my answer to the "3 sub-types" of EM. I read a post by Gossie, in 2012, with a comment by Starsmurf that makes me think Em with just vasodilation is one type, while EM with vasoconstriction followed by vasodilation is a second type. And then there's the thrombocytosis type. Is this it?
I have no clue and this is the first time I heard about sub-types of EM. Frankly, I don't really care anymore. There is no cure and all I can hope to accomplish is to find relief - either by reducing the number of flares or the severity and that seems to be something where we are all different. Trial and error and find support in a few Internet groups to talk about what somebody has tried and whether it worked or not or to read about what is available for cooling down (like chillows or cool pads). Unless somebody can come up to say that the different reasons for EM (if there are any, other than that some people have inherited it) make a difference in treatment I'll just stumble along with the rest of you all.
Do you have any info on the different types of EM? Bcs I think I’m one to need vasodilators to help now that I’m trying some other natural vitamins… and find antihistamine doesn’t work at all.