Yes, I am 53 years old and, although I have just been recently diagnosed, I have had EM for a couple of years. It appears I have the primary form, but not hereditary. I have often wondered if there could be a relation with menopause, because the EM seemed to show up when I started getting menopause symptoms. I have really bad hot flashes at night and my feet also burn a lot then, which means I get very little sleep at night. I've often wondered if there was a link. It would be interesting to hear from other women on this.
ebakos said:
Hi, Not sure if anyone else has this, but I find that mine has been made worse or even brought on my menopause. Something with the hot flashes, which in turn make my hands/feet hot/red/burn even more..... any "woman" experience this??
Yes I hope any other women that are going thru menopause and have started symptoms or like libbyk had hormones issues, will respond..... i have been taking bio-identical hormones, which i think helped somewhat, but last while i went off of them to get new dose, and my em symptoms have been worse. Also i am going back on no gluten/dairy diet, and will do a "gut" cleanse. Seemed to have helped last year....
And yet best for me is to keep COOL!!!! I am glad i am still living in the mountains, and still skiing, in fact just got off the mountain! Its good for my soul :)
Yes I hope any other women that are going thru menopause and have started symptoms or like libbyk had hormones issues, will respond..... i have been taking bio-identical hormones, which i think helped somewhat, but last while i went off of them to get new dose, and my em symptoms have been worse. Also i am going back on no gluten/dairy diet, and will do a "gut" cleanse. Seemed to have helped last year....
And yet best for me is to keep COOL!!!! I am glad i am still living in the mountains, and still skiing, in fact just got off the mountain! Its good for my soul :)
I have had EM for a couple of years now and we do not know why although I am fairly certain it is not heriditary. I went back over my whole history so many times and kept coming back to menopause. I suffered such horrible hot flashes that it's hard to describe. They came every few minutes 24/7. I never met anyone that had the symptoms that I did. I never felt that I got through menopause even though I was 65. The hot flashes improved over time but certainly did not go away. I just kept saying that my thermastat was hotter than everyone else. I just reallyl had no explanation and truthfully I don't think any of my doctors even understood the severity of my menopause symptoms. They were off the charts and now I think I know why although it can't be proven. I share your concerns that this is all "menopause" related.
The question is what can be done even if the two are tied together? I took estrogen for a couple of months but I didn't show any improvement. Did I give up too soon? or is there some other imbalance?
ebakos said:
Yes I hope any other women that are going thru menopause and have started symptoms or like libbyk had hormones issues, will respond..... i have been taking bio-identical hormones, which i think helped somewhat, but last while i went off of them to get new dose, and my em symptoms have been worse. Also i am going back on no gluten/dairy diet, and will do a "gut" cleanse. Seemed to have helped last year....
And yet best for me is to keep COOL!!!! I am glad i am still living in the mountains, and still skiing, in fact just got off the mountain! Its good for my soul :)
My symptoms were pretty severe few years ago, and at the same time I was under extreme stress. My hot flashes were so extreme i would feel like i was having a seisure, and at their worse i would have one every hour to 90 min. apart all the time. And then when they were at their worse my hands would flare, yet i didnt have a clue what was going on. Went to neurologist and he had no clue, and was useless. Said oh its likely menopause/thyroid/fibromyalgia all together. I finally had my hormones tested by saliva, and ended up using bio-horm. which i feel have helped alot..... when they are in proper balance, as well as keeping cool!!!!!!!!! Like you i feel like my thermostat is broken or out of whack. With having no thyroid, i have that to put into the mix of things too........
haha the insurance companys and pharmacy companys control health care in the USA money my Doctor called all over the USA looking for someone to do a gene test Yale was the only one doing any resrarch but only if there are two or more people in the family which have em
mbaGG said:
Thank you everyone for your comments and empathy. I'm wondering why we are not being tested for this gene. Wouldn't a geneticist do that kind of work? Seems to me there should be some pretty good geneticists in this country. But even if we find we have the gene, does it change the treatment?
I am also on 3000mg of gabapentin and asprin but I can no longer work.So I spend alot of time looking for answers I am not giving up yet but have also found out in the process there are some great caring doctors out there but also some who only care about the money so just keep looking Dr.Ringle AND Dr graham at uch are great doctors
lauraflora1 said:
Sorry you are feeling so desperate Laurie... I am on 3000mg Gabapentin daily plus aspirin to thin blood. I do still get flares but nowhere near as bad. I found the Gabapentin really hard to get used to but it seems to have settled somewhat, this being said I often sleep straight after work until next morning.
I am curious as to what you use to help your EM. I have had it for a couple of years and it is not as severe as most on this site. I am pretty much on my own, no help from doctors, and would like to try something natural before I turn to meds. Any suggestions would be appreciated.
karenatl said:
I had a rhuematoglogist tell me the same thing 7 yrs ago. that was after he agreed with my self diagnosis after many tests to try to rule EM out. He told me. :You are on your own. There is nothing I can do for you. Try going to a learning hospital where they have younger doctors studying rare diseases." That is when I decided to use natural, alternitive medicines & doctors instead.
Sometimes I can stop it from getting worse when I feel a flare coming on like by cooling them down right away. Other times no matter what I do can't stop it from getting full blown out excruciating.
I was always thinking that it's not fair that the studies seem to be for those who have Hereditary EM. What about the rest of us?
the most help i got was from claritin which is not exactly natural but not a prescription either. i have taken many things and do take gabapentin and nortriptyline for pain but it wasn't until i added the claritin that i had ANY relief from the horrible flares. because claritin helped me the most my doctor added another antihistamine which is hydroxyzine. i wasn't sure if the hydrox was working until i ran out a while back and didn't take it for a week. my flares increased at night to moderately severe so i started taking the hydroxyzine again and within a few days things had settled down again.
To summarize, antihistamines have given me the most help. I continue to try different things with the hope that ALL the flares will subside but so far nothing expensive or cheap has helped like the claritin.
good luck.
Claudette said:
Hi,
I am curious as to what you use to help your EM. I have had it for a couple of years and it is not as severe as most on this site. I am pretty much on my own, no help from doctors, and would like to try something natural before I turn to meds. Any suggestions would be appreciated.
karenatl said:
I had a rhuematoglogist tell me the same thing 7 yrs ago. that was after he agreed with my self diagnosis after many tests to try to rule EM out. He told me. :You are on your own. There is nothing I can do for you. Try going to a learning hospital where they have younger doctors studying rare diseases." That is when I decided to use natural, alternitive medicines & doctors instead.
Sometimes I can stop it from getting worse when I feel a flare coming on like by cooling them down right away. Other times no matter what I do can't stop it from getting full blown out excruciating.
I was always thinking that it's not fair that the studies seem to be for those who have Hereditary EM. What about the rest of us?
Thanks Norahs.That is really interesting. I never would have thought of antihistamines but I will be putting it on my list of thing to try. I'm trying to get at much info as I can about various methods before I even consider pain medication. I have tried the low dose aspirin for about 3 months now and it doesn't appear to work for me as I haven't noticed any change. I think I will try Magnesium next. If anyone out there has any recommendation regarding type or dosage I would welcome them.
Claudette
Norahs said:
the most help i got was from claritin which is not exactly natural but not a prescription either. i have taken many things and do take gabapentin and nortriptyline for pain but it wasn't until i added the claritin that i had ANY relief from the horrible flares. because claritin helped me the most my doctor added another antihistamine which is hydroxyzine. i wasn't sure if the hydrox was working until i ran out a while back and didn't take it for a week. my flares increased at night to moderately severe so i started taking the hydroxyzine again and within a few days things had settled down again.
To summarize, antihistamines have given me the most help. I continue to try different things with the hope that ALL the flares will subside but so far nothing expensive or cheap has helped like the claritin.
good luck.
Claudette said:
Hi,
I am curious as to what you use to help your EM. I have had it for a couple of years and it is not as severe as most on this site. I am pretty much on my own, no help from doctors, and would like to try something natural before I turn to meds. Any suggestions would be appreciated.
karenatl said:
I had a rhuematoglogist tell me the same thing 7 yrs ago. that was after he agreed with my self diagnosis after many tests to try to rule EM out. He told me. :You are on your own. There is nothing I can do for you. Try going to a learning hospital where they have younger doctors studying rare diseases." That is when I decided to use natural, alternitive medicines & doctors instead.
Sometimes I can stop it from getting worse when I feel a flare coming on like by cooling them down right away. Other times no matter what I do can't stop it from getting full blown out excruciating.
I was always thinking that it's not fair that the studies seem to be for those who have Hereditary EM. What about the rest of us?
Regarding the best dose of Magnesium to try, I've never heard of anyone with EM starting at less than 400 mg as a therapeutic dose, but it should be based on body weight and it should also be tapered up (I've heard). I started at 400 mg twelve years ago and didn't know to titrate up. I read a lot of websites and talked with other EMers before chosing a dose and I checked with my doctor also first.
Due to weight gain and also thinking maybe a higher dose would help more anyway, I went up to 500 mg a few years ago and I'm now closer to 600 mg/day, divided into 3 doses at mealtime. I also take Calcium, which is important if taking Mg. The calcium makes me slightly drowsy so I take it in the evening.
I used to take the oxide form, which is easy to find and cheap, but due to GI side effects I eventually switched to Magnesium Citrate and have no problem with it. I tried a couple of other forms which were far more expensive but they didn't work any better for me.
Thanks for the advice. I appreciate it. I will definitely start at a lower dose. My weight is about 125 lbs. Do you take the calcium separately or is it combined with the magnesium?
Kentuckian said:
Regarding the best dose of Magnesium to try, I've never heard of anyone with EM starting at less than 400 mg as a therapeutic dose, but it should be based on body weight and it should also be tapered up (I've heard). I started at 400 mg twelve years ago and didn't know to titrate up. I read a lot of websites and talked with other EMers before chosing a dose and I checked with my doctor also first.
Due to weight gain and also thinking maybe a higher dose would help more anyway, I went up to 500 mg a few years ago and I'm now closer to 600 mg/day, divided into 3 doses at mealtime. I also take Calcium, which is important if taking Mg. The calcium makes me slightly drowsy so I take it in the evening.
I used to take the oxide form, which is easy to find and cheap, but due to GI side effects I eventually switched to Magnesium Citrate and have no problem with it. I tried a couple of other forms which were far more expensive but they didn't work any better for me.
Yes, I know, but I'm willing to give it a try. That is what is so frustrating about this disease. There is no single solution and it's just all over the map with respect to meds and solutions.
karenatl said:
When I tried magnesium it made my EM worse. So you just have to try it & see if it doesn't cause a flare.
I know...it IS frustrating...What will work for one person doesn't work for the next person . It's just trial & error for each of us and to listen to your own body & what it's telling you. What it likes and what it has a bad reaction to.
For sure what works for one does not necessarily work for another. I try one new thing at a time so I know quickly if it works or not. Besides the claritin being a huge blessing I have just recently gone gluten free ........ it has made a huge difference with regard to fatigue and lack of energy. I feel 100% better as far as energy level and my arthritis is much better, does it help with EM?, not sure but since I feel better it helps mentally which in turn makes my EM a little easier to deal with day to day.
I am very careful what I eat. I don't drink alcohol anymore, that was a big trigger for me. I also don't eat out nearly as much and cook almosts everything from scratch. I try to eat only fresh foods and nothing prepared. It's all those pesky additives that get you. No chinese food unless I know for sure there is no MSG (big trigger) and I avoid heavily salted food (another big trigger). I used to have really bad flare ups after a meal out so I try to eat only at restaurants that are fresh and organic with their food prep.
Have you checked.......... erythromelalgia.org..?............lot's of information is offered as well as people sharing their stories, it helped me a lot. I am so happy to have found this site as well, everyone has been so welcoming and warm. You truly have to have EM in order to understand the pain, it is not something you can explain to even your closest family member.
Please share any new findings and I will do the same. I continue to look for the magic cure...........Hope is my middle name now.
have any of you read the research by dr jay cohan (not sure on spelling of last name). He is a doctor that actually has EM himself. he found himself in a situation much like a lot of us, no answers anywhere. He has done a lot of research on EM and has published his findings. i dont actually have the links but will try to find them in the next few days and post them. he has a lot of good suggestions and does have an understanding of what we are all going through.i also have been convinced over the last several years tha t somehow EM is hormone related. mie also seemed to start aroundbthe time of menopause and the symptoms of menopause make EM even harder to deal with. i noticed several of u take aspirin and i'm wondering if those of you that do know if you have primary or secondary EM? i have been seen by a dr at huntsman cancer institute here in utah that treats secondary forms because he can generally treat the underlying condition ' which he said is a lot of the time related to the bone
one marrow and platelet counts. i was told by him if you have this form of EM that taking aspirin for two weeks
sorry that uploaded before i was ready. anyway he told me that aspirin taken daily for two weeks would almost certainly take care of the pain if it was the secondary form. obviously not permanently, tnat would be too easy. it did however identify there was an underlying condition that could be looked for, if aspirin did not offer any relief it was almost certain you had the prinary form. anyone else ever heard anything similar?
I was told that the asprin was taken to thin the blood hence less swelling… Not sure if this is completely correct because it was a gp who knows very little and had just tried researching EM for me…!