I have Raynaud’s disease along w/ EM in my hands primarily (see attachment), although I have only been diagnosed w/ Raynaud’s so far and not EM as of yet, but the handful of doctors I have visited believe me to have EM as well. It appears the major symptom that differentiates me from most EM sufferers is that I don’t have this burning intolerant pain people describe. I definitely still get the lava colored red hands when I get the flare ups, and they throb/tingle/shoot and have a light burn feeling to them (pain of 1 on a scale of 10), but it is not like this stove top burning pain many people state they are having. The only somewhat annoying pain can be when my hands are very cold.
1) With that being said, I am wondering what type of drug I could take to alleviate or rid flare ups that create that awful redness?
2) I’ve research a lot of medications. Many of them would address the pain. Since I don’t have that intolerable pain and want to address the visible flare ups, does anyone have any suggestions as to what drugs might improve or rid those?
3) A recent neurologist I visited with was very interested in magnesium for my needs. Any thoughts on that, what type of high dose I should take, and whether that will address what I am looking to address with my hands?
a) Do I need to take a lot of calcium supplements as well if I am taking a high dose of magnesium?
b) How do I find pure magnesium without the Oxide form of magnesium that many have referenced to avoid? I’ve looked at GNC and Swanson Vitamins websites, but those magnesium supplements all have the oxide form of magnesium.
Any insight to all my thoughts are truly appreciated.
I'm glad you posted this because my EM (at this stage) is mild like you describe rather than what I've read about. It's been progressing little by little, but so far I'm lucky enough to not have the terrible pain as others describe. (I also have Raynaud's, although I had the EM first.)
In my research, I have also seen others mention taking magnesium to help. I'll be watching replies to this one.
My pain managment specialist mentioned Magnesium too, but didn't mention how much to take. I will ask my gp when I next see him because I have heard that it needs to be taken in high doses but also that too high a dose can cause nasty side effects.
You might find the TEA website helpful (The Erythromelalgia Association. Dr Jay S Cohen tells of his total remission of EM with the use of high dose magnesium treatment. To get there go to:-
http://www.erythromelalgia.org = on the Home Page you should find recent news dated Jan 10th 2012 - Dr Cohens latest e newsletter with a link to www.medicationsense.com then click on erythromelalgia at the L/hand side under Specialities and then scroll down to the article - Cohen J.S High dose oral magnesium in the treatment of chronic, intractable erythromelalgia.
That's interesting that you don't experience the pain either. We are definitely in the minority here. I think I'm going to give magnesium citrate a try. That seems to be the consensus magnesium type that can help those with EM. Let's just hope it isn't a supplement solely addressing the pain but rather the flare ups too since we aren't experiencing any pain yet.
-Mike
kruizerchick said:
Mike,
I'm glad you posted this because my EM (at this stage) is mild like you describe rather than what I've read about. It's been progressing little by little, but so far I'm lucky enough to not have the terrible pain as others describe. (I also have Raynaud's, although I had the EM first.)
In my research, I have also seen others mention taking magnesium to help. I'll be watching replies to this one.
Yeah, I think I'm hearing anywhere from 800 mg to 1200 mg, but your blood levels should be monitored at that high of a dosage. I'm going to go ahead and give magnesium citrate a try since that seems to be the consensus form of magnesium to take. Let me know what you here from your GP.
-Mike
lauraflora1 said:
My pain managment specialist mentioned Magnesium too, but didn't mention how much to take. I will ask my gp when I next see him because I have heard that it needs to be taken in high doses but also that too high a dose can cause nasty side effects.
Thanks for that information. Yeah, I stumbled across Dr. Cohen's site before, read through it quickly, bookmarked it, and told myself I'd go back to it but I never did. There's a lot of good information on there. I think I'm going to give magnesium citrate a try. I really wish I could talk to Dr. Cohen, but I heard he charges $250 for an hour long phone consult and $140 for 30 minutes, which is just totally insane if you ask me.
tillyp said:
Hello Mike
Re the magnesium therapy question
You might find the TEA website helpful (The Erythromelalgia Association. Dr Jay S Cohen tells of his total remission of EM with the use of high dose magnesium treatment. To get there go to:-
http://www.erythromelalgia.org = on the Home Page you should find recent news dated Jan 10th 2012 - Dr Cohens latest e newsletter with a link to www.medicationsense.com then click on erythromelalgia at the L/hand side under Specialities and then scroll down to the article - Cohen J.S High dose oral magnesium in the treatment of chronic, intractable erythromelalgia.
