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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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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.
Helpful - 0
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
Helpful - 0
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.
Helpful - 0
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
Helpful - 0
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.
Helpful - 0
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.
Helpful - 0
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