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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.
One more thing and I'll stop with my posts. I agree with the aspirin. It will help but I too have IBS and it's terrible on the stomach. You can use baby aspirin as well if aspirin is okay with your stomach. I asked my neurologist if there was a medication that would keep my hands warm, not hot, but warm because if I keep my body temperature moderate and away from getting really cold, it keeps the erythro at bay. Someone above mentioned amitriptylline and that is exactly what my neuro prescribed when I asked him for a medication that would keep my hands warm. I also end up with terrible muscle spasms if I get too cold and that makes everything worse. I got sick around the time I was supposed to start the amitriptylline, so I never did start it, but I thought I would mention that since another poster brought up the amitriptylline helping her.
Excellent comment Jane. I just recently had a mole removed because of previous melanoma. The mole was atypical but not cancerous. What surprised me is the wording that they saw "focal dermal sclerosis" in the dermal layers of the skin. Guess I'm going back to the rheumatologist now because scleroderma/limited scleroderma has always been one of those things that fit my symptoms but I didn't have enough symptoms for a diagnosis. I appreciate your comment because I have had erythro for four years now and just this month received that pathology report on the mole with the comment about the sclerosis. I am sick of doctors at this point, but your comment is definitely making me think twice about going back to the rheumatologist.
My Lyme treatment did improve my erythromelalgia though I still have episodes. Just for those who have family members with it, these are some of the things that help me during the episodes. Popsicles really help, believe it or not, because if you cool your whole body down the hands and feet follow. Walking on the cold tile floors are amazing when the feet are hot and burning. I was given Levaquin as part of my Lyme treatment and that did wonders for the erythromelalgia. I found out Levaquin is also used with some heart conditions so perhaps it helps circulation and that is one of the reasons it helped, not sure. The heat is unbearable when you are suffering with erythro. Anything over 71 degrees at nighttime when sleeping will almost always cause burning. Leave the covers off their feet at night. Don't make your child wear socks or anything that is going to restrict air flow on hot days. It will not only bring an episode on, it will make it really bad. I found this thing at the store that you can put in the freezer and then pop it under your pillow case at night to keep you cool. I can't remember what it is called but I'm sure you can find it on the internet. I saw someone's idea on the show "Katy" today and I realized it would be great for people with erythro. She made these large necklaces that could be put in a cooler and then menopausal women wore them to help them cool off. Genius and it would definitely help with erythro because it helps you cool off. If I focus on cooling my entire body, not just the feet/hands/ears, the burning pain subsides much faster than if you just cool the area where it's burning. Don't put your feet/hands/ears near a heater vent in the winters. It exacerbates the problem for me personally, but if I'm at a good distance from the vent, it is usually fine. A good way to cool their feet is to get the socks wet under cold, not freezing, water and ring them out, then put them on.
Walking a lot when erythro acts up will make it worse. You have to sit down and rest. You would think circulation by walking would help, but it doesn't. Lyrica was a huge help for me as well. I just started Gabapentin so can't say for sure on that one yet. Insurance wouldn't pay for Lyrica...pfffft. Oddly enough I am worse if I allow my hands to get too cold because it's often on the warm up that the blood gets trapped and then the burning begins. Video games can bring on the burns if they cause stress. Stress alone can trigger it, but I don't know why. I avoid stressful situations as much as possible because you literally can't control the body's reaction even when your brain says you're fine. Anyway, maybe that will help some of you. I really do keep popsicles in my refrigerator for flares but I'm sure you can use ice cream or frozen yogurt and get the same effect. Ice cold drink water may help, but I don't think it works as well as the ice cream and popsicles. Hope that helps a little.
Walking a lot when erythro acts up will make it worse. You have to sit down and rest. You would think circulation by walking would help, but it doesn't. Lyrica was a huge help for me as well. I just started Gabapentin so can't say for sure on that one yet. Insurance wouldn't pay for Lyrica...pfffft. Oddly enough I am worse if I allow my hands to get too cold because it's often on the warm up that the blood gets trapped and then the burning begins. Video games can bring on the burns if they cause stress. Stress alone can trigger it, but I don't know why. I avoid stressful situations as much as possible because you literally can't control the body's reaction even when your brain says you're fine. Anyway, maybe that will help some of you. I really do keep popsicles in my refrigerator for flares but I'm sure you can use ice cream or frozen yogurt and get the same effect. Ice cold drink water may help, but I don't think it works as well as the ice cream and popsicles. Hope that helps a little.
Hello, I just read your post about having EM, I live near Albury/Wodonga and my 7year old daughter has been diagnosed with EM in the genital area!! She is on Gabapentin, Tegretol and Endone. Its very frustrating as her dr in Melbourne knows nothing about EM and got the diagnosis from USA!!!
Hi if you or anyone else is interested then my daughter has set up a group on facebook called
Erythromelalgia- A helping hand
It is an active group with members suffering from this terrible illness who have discussions and tips and also a friendly ear to listen to when you are feeling down and need someone to talk to.x
Erythromelalgia- A helping hand
It is an active group with members suffering from this terrible illness who have discussions and tips and also a friendly ear to listen to when you are feeling down and need someone to talk to.x
Hi, I am a 29 female from NSW Australia (1+1/2 hrs South Sydney). I have recently been diagnosed with EM after a 8 week dibilatating flare up which i spent most of the time hospitalised- unable to walk etc.
This was not my first flare up- First attack was when i was 12, was struck down with aching burning joints in my toes, feet, knees and fingers. My initial response was to put my feet in cold water- which i did for 3 weeks, every couple of hours when needed. After weeks seeing doctors and specialists they suggested all sorts of things from growing pains, mosquito borne viruses and finally Reflex Sympathetic Distrophy which is now known as Complex Regional Pain Syndrome which was not caused by an injury. The pain seemed to be easing (it seemed to run its own course) and the doctors recommended hydrotherapy in a heated pool. Eventually after 5 weeks the pain was gone and i began to gain my strength back and walk properly again.
I have since had two more flare ups both of which only lasted a few days, which i tried to mentally block the throbbing burning pain.
My last flare up was the end of last year which started after symptoms of a cold/flu, i felt a little run down and had been stressed and tired from work. After a few days the aching started in my feet. The unmistakable throbbing and burning of the joints, basically feels like some one is stabbing the bone with a hot needle. This continued to get worse over the next week- more intense pain on both feet and hands. I went to the dr who tested bloods for lupus etc. Rhumatoid factor was slightly up and white blood count but not enough for Lupus etc. Was sent to a Rhumatologist and he was unable to find anything in bloods.Was given anti inflammatories to no help.
After a few weeks of intense pain, no sleep and only relief from cool water/ice packs i eventually admitted myself to hospital. At this stage i was obviously unable to work, look after my 2 small children, sleep or even walk and had a very noticeable droopy eyelid- (Horner Syndrome) I was then put trialed on Endone, Amytriptiline, Carbemezapine, Mistopristol, Prednislone, Asprin, Pregabalin, and then Oxycotin, Temazapan , Emla Lignocane patches etc. None of the treatment seemed to work and basically i took the Endone and Temazapan and tried to sleep most of the time. By which time the pain seemed to be easing. I was then given a Lumbar Sypathetic Block which did seem to relieve the rest of the pain. I eventually discharged my self as i couldn't stand being away from my children any longer and had lost 20 kilograms through not eating at hospital and was wasting away. I stopped taking all medication that day and had weird pschological effects which lasted for about a week. I have then spent the last 6 months regaining my strength and muscle and weight. I am still unable to wear shoes or socks for more than an hour or exercise ( i was previously quite fit and healthy) My feet still feel puffy and warm if i cover them with anything, I have very limited feeling/sensetivity in my feet ( i imagine from the damage cold water had done).
I had blood tests taken back in December which was sent to the Netherlands for Gene Testing. The results came back a month ago, which showed a mutation in the Gene- SCN9A Sodium Channel, and a report is now being written up to document it.
I am constantly thinking of if and when the next flare up will be and i'm trying to take best precautions as not to cause another attack.
I would love advice of people with similar situations and how to cope. Thanks Lou
This was not my first flare up- First attack was when i was 12, was struck down with aching burning joints in my toes, feet, knees and fingers. My initial response was to put my feet in cold water- which i did for 3 weeks, every couple of hours when needed. After weeks seeing doctors and specialists they suggested all sorts of things from growing pains, mosquito borne viruses and finally Reflex Sympathetic Distrophy which is now known as Complex Regional Pain Syndrome which was not caused by an injury. The pain seemed to be easing (it seemed to run its own course) and the doctors recommended hydrotherapy in a heated pool. Eventually after 5 weeks the pain was gone and i began to gain my strength back and walk properly again.
I have since had two more flare ups both of which only lasted a few days, which i tried to mentally block the throbbing burning pain.
My last flare up was the end of last year which started after symptoms of a cold/flu, i felt a little run down and had been stressed and tired from work. After a few days the aching started in my feet. The unmistakable throbbing and burning of the joints, basically feels like some one is stabbing the bone with a hot needle. This continued to get worse over the next week- more intense pain on both feet and hands. I went to the dr who tested bloods for lupus etc. Rhumatoid factor was slightly up and white blood count but not enough for Lupus etc. Was sent to a Rhumatologist and he was unable to find anything in bloods.Was given anti inflammatories to no help.
After a few weeks of intense pain, no sleep and only relief from cool water/ice packs i eventually admitted myself to hospital. At this stage i was obviously unable to work, look after my 2 small children, sleep or even walk and had a very noticeable droopy eyelid- (Horner Syndrome) I was then put trialed on Endone, Amytriptiline, Carbemezapine, Mistopristol, Prednislone, Asprin, Pregabalin, and then Oxycotin, Temazapan , Emla Lignocane patches etc. None of the treatment seemed to work and basically i took the Endone and Temazapan and tried to sleep most of the time. By which time the pain seemed to be easing. I was then given a Lumbar Sypathetic Block which did seem to relieve the rest of the pain. I eventually discharged my self as i couldn't stand being away from my children any longer and had lost 20 kilograms through not eating at hospital and was wasting away. I stopped taking all medication that day and had weird pschological effects which lasted for about a week. I have then spent the last 6 months regaining my strength and muscle and weight. I am still unable to wear shoes or socks for more than an hour or exercise ( i was previously quite fit and healthy) My feet still feel puffy and warm if i cover them with anything, I have very limited feeling/sensetivity in my feet ( i imagine from the damage cold water had done).
I had blood tests taken back in December which was sent to the Netherlands for Gene Testing. The results came back a month ago, which showed a mutation in the Gene- SCN9A Sodium Channel, and a report is now being written up to document it.
I am constantly thinking of if and when the next flare up will be and i'm trying to take best precautions as not to cause another attack.
I would love advice of people with similar situations and how to cope. Thanks Lou
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