I am new here and to EM. I have many other diagnosis and I feel I have spent the last year trying to figure out what illness is causing what pain. EM seems to be the main couprit. I have read there can be two types of EM. I do not understand how to find out which type I have. I have not spoken to a doctor in the rural area I live in who knows about or has seen another case. My face and head get as hot and red as my hands and feet? Has anyone heard of this?
I am a bit lost and in pain. Any info or comments would be much appreciated.
Dizzy, This is the first time I have heard anyone mention that there can be two types of EM. My wife has been suffering for the past 5-6 months so we are new to this disease. If by chance I do hear anything I will surely let u and the others know.
There are two ways EM presents: a genetic form; and as a secondary condition to other diseases. You can obtain more information on this from The Erythromelalgia Association. Here is a link: www.erythromelalgia.org. Also, it can affect your face. I have done a lot of research on the disease, trying to find as much information as I can. From what I have read, you may be able to find out if it is genetic by consulting a geneticist.
I have never heard of 2 types of EM either. I highly recommended The Erythromelalgia Association that Cindy H. suggested.
I have been struggling with this since a year this past fall. When it all started I got red ears sometimes one & then the other and when I had a very bad crisis of it I was red all over head, ears, chest & back. I haven't had any red in head area for 9 months & then yesterday out of the blue off & on red ears & red on face. There doesn't seem to be any rhyme nor reason for this.
I have Fibromyalgia/CFS which presents itself differently in every person & I'm finding that it is the same with the EM. For instance my inner knees feel like they are on fire a lot but they are never red. My hands & feet get red with use but yet usually don't burn but have a lot of pain.
Hang in there. The best we can do is try & take it one day at a time. I know easier said than done. :)
Hi Cindy, There is a third type of EM called idiopathic EM. That is one of those big medical words which I have been introduced to the last couple of years. The definition from Wikipedia....."arising spontaneously or from an obscure or unknown cause".....And my paraphrasing is.....They don't have a clue where it comes from.
And idiopathic EM happens to be the kind I have. I am 100% healthy except for EM. However, with the taking of the medicine and the staying in the house and the lack of exercise, that will change and there just isn't much I can do about it.
And someday "I think" it will be further broken down into sub-groups. Some medicine help one person but not another. In fact that same medicine will make it worse. Some lift up their feet and it is better and some not. I sleep with my feet up and wake up in total agony. I will never do that again.
Could there be a capillary EM? Maybe a vein EM? How about a arteries EM? While I am brainstorming (more storming than brain) how about 50% capillary and 20% vein and 30% artery. Could this be why some medicines help some hurt?
hi everyone, thank you for all the responses. I have read there is no "blood test" per se for EM and also that diagnosis of EM can proceed more serious conditions by about 2.5 years. My doctors have never seen this disorder before so I have started talking to the Mayo Clinic and Stanford. I was just wondering if anyone eles had "issues" getting diagnosed and then having to fend for themselves for info?
Also, with anyone who has duel dx for FMS/CFS, along with other medical dx's, do you find depression/anxiety exasperate or cause flare? Kinda like a jumbled mess sometimes.If I go down, for either pain or depression everything seems to flare.
I think I might be the only one on this site that has primary em. I was diagnosed by a genetics specialist when I was 4 but my parents knew when I was about 6 months old. My dad was one of the first people to be diagnosed with em in the late 50's when he was 9 at the mayo clinic. I have about 40 family members that have primary. I have never had a blood test but I am going to perticipate in a clinical research trial at the end of the month and i go for a blood test on friday. i know there is a test to check for the genetic mutation, but i know nothing about secondary em. i hear that it works the same way but i have never met any one in person that has it that i wasnt related to. ill ask on friday if there is a test for secondary and get back to you.
I have primary erythromelalgia too so you're not alone! I don't have other family members with it but it looks like the family Raynaud's disease took a much more severe mutation in me. I am now awaiting genetic confirmation, but I know that it is a genetic mutation, probably due to X-ray damage just before I was conceived.
Emily said:
I think I might be the only one on this site that has primary em. I was diagnosed by a genetics specialist when I was 4 but my parents knew when I was about 6 months old. My dad was one of the first people to be diagnosed with em in the late 50's when he was 9 at the mayo clinic. I have about 40 family members that have primary. I have never had a blood test but I am going to perticipate in a clinical research trial at the end of the month and i go for a blood test on friday. i know there is a test to check for the genetic mutation, but i know nothing about secondary em. i hear that it works the same way but i have never met any one in person that has it that i wasnt related to. ill ask on friday if there is a test for secondary and get back to you.
Unfortuately, I think your situation is not uncommon, I've had EM since I was seven and it took almost two years to get a diagnosis, despite my dad being a doctor. EM is so rare that there is very little information out there for doctors and even less for patients. For that kind of information, I recommend www.erythromelalgia.org as they have lots of articles and information for patients and doctors. It is groups like this and The Erythromelalgia Association that are starting to change that.
My doctor is considering FMS/CFS for me, as there is no test they can do for either it is difficult to say which you have, or if you have both.
Any negative emotion will trigger and/or worsen a flare. I have had to train myself over the years not to feel anger, grief, sadness etc while I am in a flare. I'm not always successful in doing so but at least I try.
I'm really glad you're finding the support you need here, I find it great to be able to say "I'm in the middle of a flare" and have people understand what I'm going through.
dizzy said:
hi everyone, thank you for all the responses. I have read there is no "blood test" per se for EM and also that diagnosis of EM can proceed more serious conditions by about 2.5 years. My doctors have never seen this disorder before so I have started talking to the Mayo Clinic and Stanford. I was just wondering if anyone eles had "issues" getting diagnosed and then having to fend for themselves for info?
Also, with anyone who has duel dx for FMS/CFS, along with other medical dx's, do you find depression/anxiety exasperate or cause flare? Kinda like a jumbled mess sometimes.If I go down, for either pain or depression everything seems to flare.
Your ideas are really interesting. I have been told that aside from primary, secondary and idiopathic EM there are three basic subtypes: thrombocytic, vasoconstricitve and vasodialatory.
The first is the one that responds to aspirin, I think because it's caused by tiny bloodclots (I'm going by the name and treatment on that).
Vasoconstrictive is caused by your blood vessels being closed down too much, which causes blood to flood into other blood vessels causing a flare.
Vasodialatory is caused by the blood vessels being too open and letting too much blood into the area.
I hope that this is helpful to you.
Jim Weed Alaska said:
Hi Cindy, There is a third type of EM called idiopathic EM. That is one of those big medical words which I have been introduced to the last couple of years. The definition from Wikipedia....."arising spontaneously or from an obscure or unknown cause".....And my paraphrasing is.....They don't have a clue where it comes from.
And idiopathic EM happens to be the kind I have. I am 100% healthy except for EM. However, with the taking of the medicine and the staying in the house and the lack of exercise, that will change and there just isn't much I can do about it.
And someday "I think" it will be further broken down into sub-groups. Some medicine help one person but not another. In fact that same medicine will make it worse. Some lift up their feet and it is better and some not. I sleep with my feet up and wake up in total agony. I will never do that again.
Could there be a capillary EM? Maybe a vein EM? How about a arteries EM? While I am brainstorming (more storming than brain) how about 50% capillary and 20% vein and 30% artery. Could this be why some medicines help some hurt?
Thank you. Yeah I had a volatile Thanksgiving (my family is pretty dysfunctional) and I have been in pain ever since. May I ask how you have been able, or what outlets you use to get rid or reduce your stress. Everyone tells me to exersice, but with EM, FMS/CFS I kinda laugh at them. I do what I can, walking, PT ect. But the whole go run a mile on a tread mill just isnt going to happen lol ya no?
Anyway thanks for you thought they are appreciated! Mshell
starsmurf said:
Hi dizzy,
Unfortuately, I think your situation is not uncommon, I've had EM since I was seven and it took almost two years to get a diagnosis, despite my dad being a doctor. EM is so rare that there is very little information out there for doctors and even less for patients. For that kind of information, I recommend www.erythromelalgia.org as they have lots of articles and information for patients and doctors. It is groups like this and The Erythromelalgia Association that are starting to change that.
My doctor is considering FMS/CFS for me, as there is no test they can do for either it is difficult to say which you have, or if you have both.
Any negative emotion will trigger and/or worsen a flare. I have had to train myself over the years not to feel anger, grief, sadness etc while I am in a flare. I'm not always successful in doing so but at least I try.
I'm really glad you're finding the support you need here, I find it great to be able to say "I'm in the middle of a flare" and have people understand what I'm going through.
dizzy said:
hi everyone, thank you for all the responses. I have read there is no "blood test" per se for EM and also that diagnosis of EM can proceed more serious conditions by about 2.5 years. My doctors have never seen this disorder before so I have started talking to the Mayo Clinic and Stanford. I was just wondering if anyone eles had "issues" getting diagnosed and then having to fend for themselves for info?
Also, with anyone who has duel dx for FMS/CFS, along with other medical dx's, do you find depression/anxiety exasperate or cause flare? Kinda like a jumbled mess sometimes.If I go down, for either pain or depression everything seems to flare.
Your ideas are really interesting. I have been told that aside from primary, secondary and idiopathic EM there are three basic subtypes: thrombocytic, vasoconstricitve and vasodialatory.
The first is the one that responds to aspirin, I think because it's caused by tiny bloodclots (I'm going by the name and treatment on that).
Vasoconstrictive is caused by your blood vessels being closed down too much, which causes blood to flood into other blood vessels causing a flare.
Vasodialatory is caused by the blood vessels being too open and letting too much blood into the area.
I hope that this is helpful to you.
Jim Weed Alaska said:
Hi Cindy, There is a third type of EM called idiopathic EM. That is one of those big medical words which I have been introduced to the last couple of years. The definition from Wikipedia....."arising spontaneously or from an obscure or unknown cause".....And my paraphrasing is.....They don't have a clue where it comes from.
And idiopathic EM happens to be the kind I have. I am 100% healthy except for EM. However, with the taking of the medicine and the staying in the house and the lack of exercise, that will change and there just isn't much I can do about it.
And someday "I think" it will be further broken down into sub-groups. Some medicine help one person but not another. In fact that same medicine will make it worse. Some lift up their feet and it is better and some not. I sleep with my feet up and wake up in total agony. I will never do that again.
Could there be a capillary EM? Maybe a vein EM? How about a arteries EM? While I am brainstorming (more storming than brain) how about 50% capillary and 20% vein and 30% artery. Could this be why some medicines help some hurt?
Great info from you both!! thx BTW this is must be why it took Stanford five days to find a doc who new what EM was. The doc is a vascular surgeon and will see me so it looks like I am on the right track!!
starsmurf said:
Hi Jim,
Your ideas are really interesting. I have been told that aside from primary, secondary and idiopathic EM there are three basic subtypes: thrombocytic, vasoconstricitve and vasodialatory.
The first is the one that responds to aspirin, I think because it's caused by tiny bloodclots (I'm going by the name and treatment on that).
Vasoconstrictive is caused by your blood vessels being closed down too much, which causes blood to flood into other blood vessels causing a flare.
Vasodialatory is caused by the blood vessels being too open and letting too much blood into the area.
I hope that this is helpful to you.
Jim Weed Alaska said:
Hi Cindy, There is a third type of EM called idiopathic EM. That is one of those big medical words which I have been introduced to the last couple of years. The definition from Wikipedia....."arising spontaneously or from an obscure or unknown cause".....And my paraphrasing is.....They don't have a clue where it comes from.
And idiopathic EM happens to be the kind I have. I am 100% healthy except for EM. However, with the taking of the medicine and the staying in the house and the lack of exercise, that will change and there just isn't much I can do about it.
And someday "I think" it will be further broken down into sub-groups. Some medicine help one person but not another. In fact that same medicine will make it worse. Some lift up their feet and it is better and some not. I sleep with my feet up and wake up in total agony. I will never do that again.
Could there be a capillary EM? Maybe a vein EM? How about a arteries EM? While I am brainstorming (more storming than brain) how about 50% capillary and 20% vein and 30% artery. Could this be why some medicines help some hurt?
I use a prayer technique that a nun taught me, a simple form of it would be to think of a word (it doesn't have to be "religious") and simply repeat that word quietly in your mind every two or three seconds. The aim is to reach God in your soul, think of it like reaching the very centre of your being. You ignore all thoughts, what ever they are. I do this for 20 minutes, morning and evening. It gives me a basic level of calm that helps to lower my stress levels. If you are interested in learning more about this prayer technique, feel free to ask me.
I really sympathise with the stressful Thanksgiving, family gatherings can be so difficult if your family is anything like mine.
I share your problems with exercise. I am trying to do some very gentle stretching exercises to give my muscles and joints some help. I seem to remember reading about an stretching routine for CFS sufferers. I will investigate and get back to you.
dizzy said:
starsmurf,
Thank you. Yeah I had a volatile Thanksgiving (my family is pretty dysfunctional) and I have been in pain ever since. May I ask how you have been able, or what outlets you use to get rid or reduce your stress. Everyone tells me to exersice, but with EM, FMS/CFS I kinda laugh at them. I do what I can, walking, PT ect. But the whole go run a mile on a tread mill just isnt going to happen lol ya no?
Anyway thanks for you thought they are appreciated! Mshell
starsmurf said:
Hi dizzy,
Unfortuately, I think your situation is not uncommon, I've had EM since I was seven and it took almost two years to get a diagnosis, despite my dad being a doctor. EM is so rare that there is very little information out there for doctors and even less for patients. For that kind of information, I recommend www.erythromelalgia.org as they have lots of articles and information for patients and doctors. It is groups like this and The Erythromelalgia Association that are starting to change that.
My doctor is considering FMS/CFS for me, as there is no test they can do for either it is difficult to say which you have, or if you have both.
Any negative emotion will trigger and/or worsen a flare. I have had to train myself over the years not to feel anger, grief, sadness etc while I am in a flare. I'm not always successful in doing so but at least I try.
It's taken me a bit of time to double check this, but idiopathic and primary EM are the same thing.
Jim Weed Alaska said:
Hi Cindy, There is a third type of EM called idiopathic EM. That is one of those big medical words which I have been introduced to the last couple of years. The definition from Wikipedia....."arising spontaneously or from an obscure or unknown cause".....And my paraphrasing is.....They don't have a clue where it comes from.
And idiopathic EM happens to be the kind I have. I am 100% healthy except for EM. However, with the taking of the medicine and the staying in the house and the lack of exercise, that will change and there just isn't much I can do about it.
And someday "I think" it will be further broken down into sub-groups. Some medicine help one person but not another. In fact that same medicine will make it worse. Some lift up their feet and it is better and some not. I sleep with my feet up and wake up in total agony. I will never do that again.
Could there be a capillary EM? Maybe a vein EM? How about a arteries EM? While I am brainstorming (more storming than brain) how about 50% capillary and 20% vein and 30% artery. Could this be why some medicines help some hurt?
I'm not sure if I speak only for myself but I am terrified of the EM dx partly as I have no idea which type I have. I know EM can often (or so I have read) proceed serious blood disorders, of which I cannot spell right now, by about 2.5 years. That couples with clueless doctors lets one's mind wander....
Also, before I found this website I found The EM Organization and tried to sign up but never heard back??
I'm sorry to hear that you didn't hear back from The EM Association. I know they have some great people on the board, as I have just been introduced to several of them. I think they have been a little short on volunteer help and have not been able to respond as expected. I have just joined their volunteers to help respond to emails. If I can help in any way, let me know. I also had some difficulty with a response in the beginning, but I hope we can change that now. It is so important to have an outlet for needed information, such as TEA, but equally important to have a place to share our battles, triumphs, and experiences, like here.