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551343 tn?1506830518

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.
44 Responses
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Avatar universal
Xani, I sent you a comment a while ago.  I meant I'm sorry for your daughter's suffering.  I am wondering if any doctors mentioned Lichen Sclerosis to you.  My sister had it and it burned itself out as she got older.  
Many good thoughts and prayers for her and you as her mommy.  My heart goes out to both of you.
Helpful - 0
Avatar universal
Dear Xani,
I just found this site, I am so sorry for all your suffering. I have MS and suffering from foot problems and now Erythromelalgia.  It hit me like a ton of bricks as well. I hope you are doing better. Sincerely, AAA7353
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Avatar universal
Just for the record,
I was diagnosed with MS over 23 years ago.  Over 40 years with Raynaud's and some other autoimmune conditions have popped up through the years including, Hashimoto's Thyroiditis, Relapsing Polychondritis, Arthritis, etc.
I have been having problems with my feet for 5 years now, neuromas, bursitis, arthritis in both feet, very painful.  If that wasn't enough,
for two months now am suffering from red, raw painful feet. Went to GP who sent me to cardiologist who then said speak to your rheumatologist  who said speak to your neurologist.  (had testing by each doctor).
My neurologist thinks that it is Erythromelalgia, I do too.  
The only difference in my life when this all happened was that I started using an electric blanket because my feet were so cold at night I couldn't stand it and also the doctor changed my Copaxone injects from 20 mgs daily to 40 mgs 3x a week.
So he told me to stop the Copaxone, as a tool to see if the problem is coming from the medication.  I have been off the meds now for about a week. I feel a little better but not much.  I think maybe I'm getting used to the pain just like all the rest of the pain I'm in.  I used to have such a bad back, before my diagnosis.  After my diagnosis of MS one of my bad disks ruptured completely.  The doctor wouldn't operate, said that the surgery would impact the MS negatively.  He said just wait, the vertebrae will fuse by itself.  It did and my back is significantly better but very sensitive.
I see you are all suffering too.  These rare illness get no recognition in the research world but I think it's going to be a mystery, especially the secondary EM.  I will get another Lyme test, I have one every year.  Thanks for letting me tell my saga. Good luck to all of  you.
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Avatar universal
i am having the same problem, which was red, itchy, swollen and warm toes for two days, which i believe was relevant to erythromelalgia. And it drives me crazy every night, since it was too painful and itchy, i couldn't sleep..... i need help....please?
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Avatar universal
i am having the same problem recently, which was red, itchy, swollen and warm toes for two days, which i believe was relevant to erythromelalgia. And it drives me crazy every night, since it was too painful and itchy, i couldn't sleep..... i need help....please?
Helpful - 0
Avatar universal
I am looking at the same thing right now. It's been happening now for months hot red swelled hands and feet! Grr So fun
Helpful - 0
710547 tn?1295446030
I was diagnosed with erythromelalgia in the late 80s. I went to Mayo Clinic when my doctors suspected it but weren't sure. I had already been dx with raynauds earlier when the symptoms of EM started. I was really desperate. I didn't wear shoes for years and was in bad shape. I slept with my feet hanging off the bed in a bucket of ice water or would lie on the floor by the sliding glass door with my feet in the snow in winter. I was so desperate I strapped ice oacks to my feet with velcro and you name it - I did it.

I had a podiatrist totally numb my feet (horrible procedure) to see if a nerve block would help. I tried to stand up and fell. I ended up still having hot red itching burning feet but couldn't walk. It wasn't the answer. Then I thought about amputation but was too worried the same thing would happen - and I'd have phantom limb pain but no feet.

It lasted for about ten years and still is a bit of a problem but nothing like it was. I went on to develop multiple autoimmune diseases such as Systemic Sclerosis and MS. I have type 1 diabetes and pulmonary hypertension, as well as scleroderma esophagus and Barretts esophagus, heart problems bowel problems, and pancreatic and multiple duct failures. My list of diagnosed diseases is so long I dont even bother to keep up. I also have degenerative disc disease and cysts in my spine that totally block the foramen causing terrible pain.

Didn't mean to launch into a medical autobiography but erythromelalgia is so rare that when I hear of anyone who has it I have to respond. All of the hell I go through including almost dying a few times due to respiratory failure from aspirating gastric contents when I sleep (happens all the time even though I sleep sitting up) etc., EM was one of the worst things I've ever been through.  My feet became so swollen and ulcerated from all the ice water and blood vessel problems that my dr thought I might have to have them amputated.  They were purple and just gross. Any heat or lying down or activity made them get hot and red and itch in a way I couldn't explain. It made me a cripple for some time.

Very interesting about the MS link. I've had a lot of things happen that are all linked to basic autoimmune diseases.  I would love to hear more from you. Thanks for sharing and blessings to all.
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1843107 tn?1318796493
I totally understand your frustration with this horrific pain syndrome. What is currently providing me with some relief... especially during the wee hours of any given morning, when I am awakened with unbelievable burning pain in both feet... is we've set up a pan of water on the floor by my side of the bed. That allows me to quickly sit up and place both feet in the water for several minutes until the burning pain eases enough to a more tolerable level. I keep a hand towel on my nightstand, and after the episode is lessened (not gone mind you), I do my best to try to fall back to sleep. It helps some nights. Sending you compassion and understanding energies Perusue. <3
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5112396 tn?1378017983
Hi there. This is an oldish thread. The participants are no longer active on the forum. For your protection (these posts are publicly searchable by anyone in the world with an internet connection), your email address has been obscured.

It sounds like you're dealing with some very unpleasant symptoms. We are not doctors here, just patients with a common experience with MS or in the midst of the diagnostic process.

It sounds more likely that you may be dealing with a circulatory issue. Are you able to speak with a medical doctor or access a clinic? They would be able to conduct some testing and perhaps provide some symptomatic relief as the cause is tracked down. I'm so sorry you're in distress.
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Avatar universal
well at the end of the rope my hands  and feet  go from cold to burning so much have decided i am able normal need  some help please if any body is out there my email is silly_cowsue***@****  this is not a wind up i need help please
Many thanks
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Avatar universal
I've just been diagnosed with EM, after a year of daily flare-ups although after reading some of these posts they are fairly mild.   My GP in insisted it was Raynauds to begin with, he even prescribed nifipidene a treatment a treatment for Raynauds, but within 30 mins of taking it my feet were bright red.
I've had most secondary conditions ruled out with blood tests. my GP saw the flare-ups first hand because I  don't need to be hot to get a flare up, just on the warm side of comfortable and my GP's waiting room is warm.
While I waited to see a dermatologist he prescribed beta-blockers I'm currently taking propanol twice a day and taking an extra tablet if I know I'm going to be in a warm environment.  This does reduce symptoms, although it doesn't eradicate them. His thinking for prescribing beta blockers was that people who have Raynauds can't take them.
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500238 tn?1255131214
I'm sorry, meant to add this to my "last" post.  I read somewhere about crushing up aspirin and combining it with a lotion and then rubbing it into the burning hands/feet/ears.  You should ask your doctor first, but it did sound like a good idea and I'm wondering if it would bypass the stomach so you don't have to worry about upset.  I also read some research regarding treatment with Lidocaine, which is what dentists use.  You'll have to search the internet regarding that, but it was a very interesting study.
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500238 tn?1255131214
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.
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500238 tn?1255131214
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.
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500238 tn?1255131214
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.
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Avatar universal
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!!!
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Avatar universal
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
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Avatar universal
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
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Avatar universal
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?
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Avatar universal
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???
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Avatar universal
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.
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1566027 tn?1295295179
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!

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710547 tn?1295446030
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

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Avatar universal
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.
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