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Has anyone been diagnosed with Erythromelalgia?
Hi guys, I have been suffering with weird burning feet when hot the edges are red, and my hands now are also troublesome, pain, burning, swollen and hot. I am so fed up with all this. Anyway out of desperation as I dont usually google symptoms I put in swollen hands, and came up with a site for Erythromelalgia.
About Erythromelalgia
EM is a rare disorder that can occur at any age and affects both genders.
Most cases of EM are idiopathic (cause unknown). Sometimes EM is secondary to other medical conditions including autoimmune, neurologic or blood disorders. Lupus, polycythemia vera and multiple sclerosis are examples.
EM also can mimic other illnesses such as Complex Regional Pain Syndrome.
Infrequently EM may develop following an injury or surgical procedure.
Some people have the inherited or primary form of EM and usually have other family members with the disease. Recently, an EM gene was identified as were several mutations to this gene. Apparently each affected family carries a different mutation.
Both the blood vessels and the nervous system are usually involved in EM.
The name erythromelalgia describes the clinical features: erythros (redness), melos (extremity), and algia (pain). There are other ways to spell EM including erythermalgia, which emphasizes heat (thermos).
Remissions are possible, but infrequent. With the help of the members of The Erythromelalgia Association (TEA), their doctors, and future research, control of EM symptoms is entirely feasible.
Symptoms
If you have been diagnosed with EM, symptoms may include hands or feet that are very red to purple in color, are perhaps swollen, hot to the touch, and have burning pain.
Location
For some, EM symptoms may appear in the face, ears, knees or other parts of the body. The intensity of the symptoms varies from person to person. Some notice a continual burning pain while others are troubled with "flare-ups" or episodes lasting from minutes to days in length.
Triggers
Warm temperatures seem to be the most frequent trigger for EM episodes. Flare-ups are provoked by heat and exercise, and symptoms are relieved by cooling and elevating the affected extremities. Some TEA members have found that foods, spices like MSG, beverages (particularly alcohol) and some drugs can make EM symptoms worse
.................................................. ..........
I am going to mention this on Friday to my GP as I fit the symptoms quite well, and was also thought to have Lupus at the start although my 3rd bloods were negative.
The other thing I note there is a link with multiple sclerosis too.
As this is so rare, some of you could have been suffering these symptoms without any diagnoses, so I thought it was important to share this.
My hands hurt quite a lot at the moment and are swollen and hot. This all kicked off as soon as the central heating went back on.
About Erythromelalgia
EM is a rare disorder that can occur at any age and affects both genders.
Most cases of EM are idiopathic (cause unknown). Sometimes EM is secondary to other medical conditions including autoimmune, neurologic or blood disorders. Lupus, polycythemia vera and multiple sclerosis are examples.
EM also can mimic other illnesses such as Complex Regional Pain Syndrome.
Infrequently EM may develop following an injury or surgical procedure.
Some people have the inherited or primary form of EM and usually have other family members with the disease. Recently, an EM gene was identified as were several mutations to this gene. Apparently each affected family carries a different mutation.
Both the blood vessels and the nervous system are usually involved in EM.
The name erythromelalgia describes the clinical features: erythros (redness), melos (extremity), and algia (pain). There are other ways to spell EM including erythermalgia, which emphasizes heat (thermos).
Remissions are possible, but infrequent. With the help of the members of The Erythromelalgia Association (TEA), their doctors, and future research, control of EM symptoms is entirely feasible.
Symptoms
If you have been diagnosed with EM, symptoms may include hands or feet that are very red to purple in color, are perhaps swollen, hot to the touch, and have burning pain.
Location
For some, EM symptoms may appear in the face, ears, knees or other parts of the body. The intensity of the symptoms varies from person to person. Some notice a continual burning pain while others are troubled with "flare-ups" or episodes lasting from minutes to days in length.
Triggers
Warm temperatures seem to be the most frequent trigger for EM episodes. Flare-ups are provoked by heat and exercise, and symptoms are relieved by cooling and elevating the affected extremities. Some TEA members have found that foods, spices like MSG, beverages (particularly alcohol) and some drugs can make EM symptoms worse
.................................................. ..........
I am going to mention this on Friday to my GP as I fit the symptoms quite well, and was also thought to have Lupus at the start although my 3rd bloods were negative.
The other thing I note there is a link with multiple sclerosis too.
As this is so rare, some of you could have been suffering these symptoms without any diagnoses, so I thought it was important to share this.
My hands hurt quite a lot at the moment and are swollen and hot. This all kicked off as soon as the central heating went back on.
Hi, I've had red swollen feet for about 6 weeks. wondering if it's from having heart blockage removed 2 mts ago? I also have IBS, osterperosis (severe) , some kidney failure. & gerd. ( plus lots of angina) tired of Drs. lost over 40 lbs! ANY SUGESTIONS?
I forgot to mention in my previous post that i also have small fiber neuropathy, peripheral neuropathy, meralgia paresthetica...and i am not a diabetic. I've been tested for amyloidosis as well. I have an abnormal brain MRI with numerous areas of white matter hyperintensities. I know there has to be a vascular component as my fingers have been turning deep purple & going numb. And lately i have been very short of breath very quickly. Anyone else have a similar story???
I have had erythromelalgia for over a yr now & it has gotten progressively worse. I can't go more than 5 min of using my hands wout a flare. I get extremely bad in weather over 70 degrees. I also have fibro, poss RA, poss lupus, poss MS, osteoarthritis; i have also had a TIA 7 yrs ago & i have Horner's Synd, essential tremor...just to name a few. I an only 38 yrs old. Unfortunately i have a large family history of autoimmune diseases. I wanted to get feedback from anyone else possibly going through this. And yes, i also have Raynaud's.
I also suffer from red, hot hands, feet, ears & nose. I was diagnosed with Roscea and given a cream to put on when I had an outbreak. Needless to say it did nothing to help............ The red nose come out when I drink, but the red hands, ears occur whenever it feels like it (it seems). I will agree when I am warm it occurs, but there is nothing I can do to calm it, meaning running hands under cold water or raising my arm above my head does nothing to help. It goes away when it wants......... Sometimes it will last a few hours, and other times 45 min.
I am currently 30 years old, and have been dealing with it for at least 7 years now. I noticed when I was pregnant with my children, I didn't have the outbreaks I currently have. Does anyone know why this may be? My daughter is currently 7 months old, and my outbreaks just started again about 1-2 months ago again. I thought for sure I was better and it was just a phase I was going through in my life. It was said to me when I was 24 that I was pre-menopausal, and had no good eggs to have my own children, and would go through menpause at a very young age, but low and behold I have 2 healthy children. I did use a fertility drug (Clomid)to strengthen my eggs with my first child, after 5 1/2 years of trying to conceive, which worked on the first month, but quickly became pregnant with my second after 8 months of delivery.
I am still currently breastfeeding my daughter and was wondering if anyone had any natural remedies for reducing outbreaks or making them less severe? I would prefer NOT to go on medications or prescription drugs if at all possible. It is an embarrassment to have SUPER red finger tips and palms, but I could care less what people think these days.
It's nice to know that I am not the only one with these symptoms, but feel terrible that other people have to go through what I do through.
Thanks for everyones postings and information!
I am currently 30 years old, and have been dealing with it for at least 7 years now. I noticed when I was pregnant with my children, I didn't have the outbreaks I currently have. Does anyone know why this may be? My daughter is currently 7 months old, and my outbreaks just started again about 1-2 months ago again. I thought for sure I was better and it was just a phase I was going through in my life. It was said to me when I was 24 that I was pre-menopausal, and had no good eggs to have my own children, and would go through menpause at a very young age, but low and behold I have 2 healthy children. I did use a fertility drug (Clomid)to strengthen my eggs with my first child, after 5 1/2 years of trying to conceive, which worked on the first month, but quickly became pregnant with my second after 8 months of delivery.
I am still currently breastfeeding my daughter and was wondering if anyone had any natural remedies for reducing outbreaks or making them less severe? I would prefer NOT to go on medications or prescription drugs if at all possible. It is an embarrassment to have SUPER red finger tips and palms, but I could care less what people think these days.
It's nice to know that I am not the only one with these symptoms, but feel terrible that other people have to go through what I do through.
Thanks for everyones postings and information!
WOW,
I am sorry to say that I didn't read all of the posts because I was too excited to see your question. I have Erythromelalgia and Raynauds - the Raynauds was dx first - and then shortly after the burning and for me severe itching when warmed or lying down. I was sent to Mayo about a year after trying EVERYTHING, including having them numbed and considered amputation. It was thought that's what I had, but was confirmed at Mayo. At that time I was in my 20s and there were only 3 cases per year diagnosed there. That was the beginning of my decline into Systemic Sclerosis, then MS and now Diabetes - thought to be type 1.5, and many other autoimmune conditions. My feet and hands have begun acting up severely just this last month and I'm at my wits end. About ten years after my dx with the Erythro., my symptoms got better and sometimes didn't even manifest themselves. Then back it came! They have to stay ice cold or I'm in trouble, and even then it's iffy. Long ago, I started the habit of putting my feet in ice water so I could sleep. I even slept with them out my sliding glass door with my feet in the snow. As you can imagine, my feet became inflamed and so swollen, my doctor thought I would lose them. I would have welcomed it if I hadn't feared phantom pain/itching.
Anyway - I'll go back and carefully look at each post more thoroughly, but I just have felt so alone in this one - and admittedly still feel alone due to the sheer number of diseases. I now have only my kidneys that are still functioning "normally" for now. The latest is the Diabetes, Atherosclerosis and A-fib - even though I've always been thin with a low fat, low calorie diet, and until the last few years, exercised consistently. I guess sometimes when the body goes haywire, it is like a tumbling avalanche that can't be stopped. The more I research, the more fascinated I become putting the pieces together.
Sorry others have to suffer with this condition and wish you all the best.
Jan
I am sorry to say that I didn't read all of the posts because I was too excited to see your question. I have Erythromelalgia and Raynauds - the Raynauds was dx first - and then shortly after the burning and for me severe itching when warmed or lying down. I was sent to Mayo about a year after trying EVERYTHING, including having them numbed and considered amputation. It was thought that's what I had, but was confirmed at Mayo. At that time I was in my 20s and there were only 3 cases per year diagnosed there. That was the beginning of my decline into Systemic Sclerosis, then MS and now Diabetes - thought to be type 1.5, and many other autoimmune conditions. My feet and hands have begun acting up severely just this last month and I'm at my wits end. About ten years after my dx with the Erythro., my symptoms got better and sometimes didn't even manifest themselves. Then back it came! They have to stay ice cold or I'm in trouble, and even then it's iffy. Long ago, I started the habit of putting my feet in ice water so I could sleep. I even slept with them out my sliding glass door with my feet in the snow. As you can imagine, my feet became inflamed and so swollen, my doctor thought I would lose them. I would have welcomed it if I hadn't feared phantom pain/itching.
Anyway - I'll go back and carefully look at each post more thoroughly, but I just have felt so alone in this one - and admittedly still feel alone due to the sheer number of diseases. I now have only my kidneys that are still functioning "normally" for now. The latest is the Diabetes, Atherosclerosis and A-fib - even though I've always been thin with a low fat, low calorie diet, and until the last few years, exercised consistently. I guess sometimes when the body goes haywire, it is like a tumbling avalanche that can't be stopped. The more I research, the more fascinated I become putting the pieces together.
Sorry others have to suffer with this condition and wish you all the best.
Jan
I have both erythromelalgia and Raynaud's. The Raynaud's is triphasic white, blue and red and triggered by cold. The erythromelalgia is only red, with no preceding white or red phases, and is triggered by heat. This fall I was diagnosed as having limited systemic scleroderma although I do not yet have any skin hardening. I have the anticentromere antibodies and nailfold capillary changes that go with this horrible disease. I had the erythromelalgia for about 5 years before I started getting Raynaud's also. Anyone who has erythromelalgia (and especially if you also have Raynaud's) should get to a rheumatologist and ask for:
An ANA test done by the old "gold standard" IFA method. If that is positive, then:
ENA panel
Anticentromere B test
nailfold capillaroscopy by someone who is practiced at doing it.
An ANA test done by the old "gold standard" IFA method. If that is positive, then:
ENA panel
Anticentromere B test
nailfold capillaroscopy by someone who is practiced at doing it.
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