Aa
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.
I was also wondering if anyone whom has EM has had family DNA testing done i have seriously been thinking about having it done the doctors in Marshfield WI told me that my symptoms matched this in which they do i came across this word back in July and 2 doctors about it and both said i dont know and i dont think thats what you have and then yesterday the doctor took pics to show someone and came back in the room and said "we looked it up and your syptoms fit and IT SAID to treat with asprin 81mg a day" so i dont know were they looked something up but they obviously dont know a lot about this in my family history many have diabetis my uncle passed from MS and diabeties he didnt get MS until he was in his late 30s and MANY in my family have rosea does anyone else have simialr family history issues?
" I also was diagnosed with Erythromelalgia. However, unless you've had it your whole life, it is secondary to another condition "
Im sorry to disagree with you, but that statement is incorrect!
You are specifically referring to familial adult onset, however like me, there is also sporadic adult onset.
After a couple years of severe symptoms which affected my ability to walk, lasting from a week up to 3 months a time, I was finally diagnosed at hospital with EM.
I was also diagnosed with hidradenitis suppurativa (verneuil's disease) and secondary lymphedema caused by the EM. I have been prescribed 60mg of Duloxetine and 75mg of aspirin daily, which has helped elevate the heat/redness/burning pain. However, I still have crippling stabbing and throbbing pains that makes it next to impossible to walk, and is not helped much my elevating my legs as the pain in constant (although much worse when I walk).
I find it interesting people have mentioned a link with MS - could someone provide a URL or quote about this because ive not seen/read this before?
Also, how would you know if you had raynaud's syndrome too, as my toes are a different colour (white), always very cold although my feet/ankles are very hot and they go numb/tingly. Not a single doctor has mentioned it and obviously im concerned if it goes untreated.
Thanks!
Im sorry to disagree with you, but that statement is incorrect!
You are specifically referring to familial adult onset, however like me, there is also sporadic adult onset.
After a couple years of severe symptoms which affected my ability to walk, lasting from a week up to 3 months a time, I was finally diagnosed at hospital with EM.
I was also diagnosed with hidradenitis suppurativa (verneuil's disease) and secondary lymphedema caused by the EM. I have been prescribed 60mg of Duloxetine and 75mg of aspirin daily, which has helped elevate the heat/redness/burning pain. However, I still have crippling stabbing and throbbing pains that makes it next to impossible to walk, and is not helped much my elevating my legs as the pain in constant (although much worse when I walk).
I find it interesting people have mentioned a link with MS - could someone provide a URL or quote about this because ive not seen/read this before?
Also, how would you know if you had raynaud's syndrome too, as my toes are a different colour (white), always very cold although my feet/ankles are very hot and they go numb/tingly. Not a single doctor has mentioned it and obviously im concerned if it goes untreated.
Thanks!
I was diagnosed with MS nearly 20 years ago with a sort of tingling in my legs and paresthesias in my feet. Over that time what has evolved is that just my hands and feet are involved and the dx was erythromelalgia secondary to MS. I have never taken any medication other than vitamins even though the Neuro would like me on daily Copaxone. I have adopted a very healthy diet with no alcohol or coffee, no red meat, mostly grains, vegies and fruits. I live in temperate San Diego. I wear open toed shoes and really try to get a good arch support. I massage my arch everyday after I get up as the skin seems tight. I gave up wearing my wedding rings many years ago as my hands would swell after eating and they would get stuck on. I have recently found that acupuncture has helped. The Dr is always going for the Chi so it is painful esp when she puts the needles into the soles of my feet but I will do anything for relief. Overall I manage well. I get daily exercise by biking-it is the only 30 min of the day that I wear a sneaker with a sock. After that it is strictly sandals-even in winter. Feet swing from pretty cold to roasting hot with that sort of achy burning feeling -like frostbite burn. The way I describe how my feet feel to my family is to picture how you feel after an intense day of Christmas shopping when your feet are just killing you and then put them into a pot of boiling water. Yikes! But all in all at least I don't have the MS fatigue and for that I feel blessed. Funny though, I used to be a flight attendant walking all over the world, and my favorite vacations were hiking in Nepal and New Zealand. Now the thought of taking a walk around the block gives me pause.
Hi, just noticed this community. I am a 71 year old male, and have had, since Mar. 2008, erythromelalgia, Raynaud's, small fiber neuropathy and vasculitis. I work with the Rheumatology Dept. of the Cleveland Clinic, strictly pallative treatment to help with the pain, since there is no cure and they are just guessing at what can get relief, and this is one of only three major hospitals in the US that know much at all about EM! Long story short, I have written about my experiences on my blog if you would like the details.
http://open.salon.com/blog/monte_canfield/2009/01/02/my_medical_condition
Presently I am on 1800 mg gabapentin for pain and two .6 mg colchicine a day for the vasculitis. I just added oxycodone, 10mg, when needed every 4 hours. So far I only take it at bed time since I have a flare up every night shortly after going to bed. The oxycodone helps a lot more than anything else I have tried, but I am reluctant to take too much of it.
I get relief in the daytime by elevating my feet to waist level, blowing a fan on them and keeping the room air conditioned to between 65 and 70F. It is a hell of a way to live, but it is what it is.
I do not wish it on anyone.
If you all would like more info, or just to talk with another sufferer of this rare mess, please email me. ***@****.
God bless you all,
Monte
(The Rev. Dr. Monte Canfield)
http://open.salon.com/blog/monte_canfield/2009/01/02/my_medical_condition
Presently I am on 1800 mg gabapentin for pain and two .6 mg colchicine a day for the vasculitis. I just added oxycodone, 10mg, when needed every 4 hours. So far I only take it at bed time since I have a flare up every night shortly after going to bed. The oxycodone helps a lot more than anything else I have tried, but I am reluctant to take too much of it.
I get relief in the daytime by elevating my feet to waist level, blowing a fan on them and keeping the room air conditioned to between 65 and 70F. It is a hell of a way to live, but it is what it is.
I do not wish it on anyone.
If you all would like more info, or just to talk with another sufferer of this rare mess, please email me. ***@****.
God bless you all,
Monte
(The Rev. Dr. Monte Canfield)
Do you also get any kind of itchyness along with this burning and swelling? I can't take hot showers, it burns my skin. I mostly get this burning swelling, and also itchyness in my hands and occasionally my feet. But is the itchyness part of it too. I am in the process of getting to a dx of ms, it looks like it will be ms, but we'll see.
The burning is awful. my hands swell so bad I can barely bend my fingers. I also get this burning on the back of my neck. It's not as extreme though. It lasts for a few days, then eases up. I also have Lupus,(in remission), and Fibro, and Epstein-Barr, Diabetes.
Sandie
The burning is awful. my hands swell so bad I can barely bend my fingers. I also get this burning on the back of my neck. It's not as extreme though. It lasts for a few days, then eases up. I also have Lupus,(in remission), and Fibro, and Epstein-Barr, Diabetes.
Sandie
I have been suffering from Erythromelalgia for 2 years now. I am a 30 year old female and live in Sydney, Australia. I am trying to find a doctor or specialist that knows about this condition, however it is extremely difficult.
So here is my story:
I was diagnosed about 18 months ago after months of suffering from burning feet and hands and stabbing, zapping pains. About 6 months before the onset of the symptoms I noticed that my heels were achy and the arches of my feet were slightly achy as well. I saw a Podiatrist who then made me new orthotics for my shoes which helped. Then 6 months later, one day just sitting at my desk in my office, my feet swelled in my shoes and i felt extreme heat and zapping pains in my feet. My feet felt like they were on fire. The pain was so intense that I was crying and trying to find something cool to apply to them to relieve the burning & stabbing sensations. I saw my physio and he initially thought i had Plantar Fasciitis. They treated my feet with hot packs and strapping, and even though i was screaming for them to stop, they continued the treatment. I then sufered a few more days to a week of restless nights, painkillers and ice packs to help me to sleep. I then consulted with my GP and he didn't know what it was who then referred me to a Rhumertologist who also didnt know what to do for me. He put me on to high dosages of Naprosen (NSAIDs), 1000mg to 1750 mg per day. It helped with the swelling and the burning pains, however I did not feel that it was giving me great relief. My Neurologist then tried me on Neurontin 300mg (Gabapentin) 2 tabs, three times of day which helped with the stabbing pains, however did not help with the burning. He then also put me on Endep 10mg (Amitriptyline hydrochloride) and Catapres 10mcg (Blood pressure tablets), I found the Catapres 10mcg did help with the overall feeling of throbbing in my body, however the Endep made me extremely sleepy and dizzy. I was then tried on Topomax 50mg twice daily and that seemed similar relief as the Naprosen, however not as effective. I was then tried on Asprin 300mg, 2 tabs twice a day then increased after 2 weeks to three times a day. I felt the best relief was with aspirin, however it was harsh on my gut. I was then put back on to Naprosen 750mg per day, which was at a lower dosage. I felt about the same relief as when I was initially presribed the 1000-1750mg. This dosage was then lowered to 500mg per day, and still I felt about similar relief. After being on Naprosen for another 6 months I then developed a stomach peptic ulcer and was immediately taken off the Naprosen and put back on to Neurontin 300mg two tabs three times a day. I found that I was having side effects with Neurontin 300mg so I was then tried on Indocid suppository, as I injured myself and suffered from tendonitis in my foot and required NSAIDs as part of my treatment. Initially I felt the same relief as to being on Naprosen, however that did not last long, as my gut reacted again and felt extremely sick. I was then put back on to Neurontin 300mg, one tab twice a day and two tabs at night. I am still currently taking this medication along with Endep 10mg and Catapres 10mcg. I now believe that I have Erythromelalgia in my jaw/face. I have been diagnosed with 'phantom tooth syndrome' from root canal treatment that has been done too many times (5 times) on two teeth. However I do know that the symptoms in my jaw/face are the same or similar to my hands and feet.
So that is my story so far. If anyone has any information on doctors in Australia that I can contact to help me with my condition I would really appreciate it.
Thank you
Xani
So here is my story:
I was diagnosed about 18 months ago after months of suffering from burning feet and hands and stabbing, zapping pains. About 6 months before the onset of the symptoms I noticed that my heels were achy and the arches of my feet were slightly achy as well. I saw a Podiatrist who then made me new orthotics for my shoes which helped. Then 6 months later, one day just sitting at my desk in my office, my feet swelled in my shoes and i felt extreme heat and zapping pains in my feet. My feet felt like they were on fire. The pain was so intense that I was crying and trying to find something cool to apply to them to relieve the burning & stabbing sensations. I saw my physio and he initially thought i had Plantar Fasciitis. They treated my feet with hot packs and strapping, and even though i was screaming for them to stop, they continued the treatment. I then sufered a few more days to a week of restless nights, painkillers and ice packs to help me to sleep. I then consulted with my GP and he didn't know what it was who then referred me to a Rhumertologist who also didnt know what to do for me. He put me on to high dosages of Naprosen (NSAIDs), 1000mg to 1750 mg per day. It helped with the swelling and the burning pains, however I did not feel that it was giving me great relief. My Neurologist then tried me on Neurontin 300mg (Gabapentin) 2 tabs, three times of day which helped with the stabbing pains, however did not help with the burning. He then also put me on Endep 10mg (Amitriptyline hydrochloride) and Catapres 10mcg (Blood pressure tablets), I found the Catapres 10mcg did help with the overall feeling of throbbing in my body, however the Endep made me extremely sleepy and dizzy. I was then tried on Topomax 50mg twice daily and that seemed similar relief as the Naprosen, however not as effective. I was then tried on Asprin 300mg, 2 tabs twice a day then increased after 2 weeks to three times a day. I felt the best relief was with aspirin, however it was harsh on my gut. I was then put back on to Naprosen 750mg per day, which was at a lower dosage. I felt about the same relief as when I was initially presribed the 1000-1750mg. This dosage was then lowered to 500mg per day, and still I felt about similar relief. After being on Naprosen for another 6 months I then developed a stomach peptic ulcer and was immediately taken off the Naprosen and put back on to Neurontin 300mg two tabs three times a day. I found that I was having side effects with Neurontin 300mg so I was then tried on Indocid suppository, as I injured myself and suffered from tendonitis in my foot and required NSAIDs as part of my treatment. Initially I felt the same relief as to being on Naprosen, however that did not last long, as my gut reacted again and felt extremely sick. I was then put back on to Neurontin 300mg, one tab twice a day and two tabs at night. I am still currently taking this medication along with Endep 10mg and Catapres 10mcg. I now believe that I have Erythromelalgia in my jaw/face. I have been diagnosed with 'phantom tooth syndrome' from root canal treatment that has been done too many times (5 times) on two teeth. However I do know that the symptoms in my jaw/face are the same or similar to my hands and feet.
So that is my story so far. If anyone has any information on doctors in Australia that I can contact to help me with my condition I would really appreciate it.
Thank you
Xani
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
