Has anyone been diagnosed with Erythromelalgia?

[MrsAristotle]

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

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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.

[JaniG]

Hi there,

I was put on Gabapentin initially for the pain in the my feet.  After a couple of months I have noticed a difference in the shooting pains, but not the heat and swelling and the pain that accompanies that.

Maybe ask your doctor if the shooting pains are a problem for you too.


Good luck x

[JaniG]

Sorry to hear about your daughter hun, but please don't immerse her lil feet in cold water, that is the worse thing you can do.  I did it for many months and I was told by the Specialist that it eventually breaks the skin down.

The only relief I get is to wear no socks, flip flops, so no closed in shoes, elevate your feet, and keep the room cool.  Air conditioning in the bedroom or a fan should help.

Good luck.

[JaniG]

Hi Ma'am,

After 16 months of extreme pain, heat, swelling, sleepness nights, I was diagnosed with EM on Monday.  The Doctor had looked at my blood tests and they were normal, so all he did was exam me.  Well after 1 hour he had 2 diagnosis for me, EM and FM.  The relief that there was an actual name for the conditions I had been suffering was immense.

He has prescribed Naproxen for me (anti inflammatory) and said I should see a marked improvement in just over a week!!!! way to go Dr. Lillicrap!

Please, if anyone reads this, don't suffer in silence, go to your GP and ask to be referred to Rheumotology.  


Good luck xx

[pyt327]

My 2 year old daughter was diagnosed with EM about 2 months ago. I'm still trying to understand it. She's had an MRI done and everything came back normal. The specialist told me to take her home and just give her motrin as needed. It seems there should be more to it than just take her home and give her some motrin. Also she doesn't like her feet to be emersed in cold water. It's like a shock to her system, she prefers luke warm water and me to rub them with lotion. Its strange, can anyone help me because I just don't know what to do to help her.

[Weesy68]

I also was diagnosed with Erythromelalgia.  However, unless you've had it your whole life, it is secondary to another condition.  Mine just so happens to be Lyme Disease.  Don't overlook Lyme disease if you have erythromelalgia.  I live in a state considered to have low to moderate risk and had plenty of doctors say we don't have Lyme.  Do not let that sway you from looking for a Lyme Literate Medical Doctor (LLMD) and being treated should you have Lyme disease.  Lyme disease is debilitating and many many people do not notice a tick bite or a rash.  It can start out with the erythro and then you find as months go on that more things are starting to occur.  I recommend watching "Under Our Skin," a movie that was released on DVD just this month.  It is very informative on Lyme disease and the current political controversy in Lyme disease.  Many physicians have been kept in the dark about what is going on with Lyme disease.

[hkotroy]

Hi my name is Helen and I believe I have EM not diag. by Dr. yet. Face and hand, arms, legs, feet and ears get red and burn and feels hot to the touch. Geting worse. Any advice to help with this problem. Currently on neurotin and cymbalta don t see any improvement.