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

.................................................. ..........

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.

[doni54]

Well, like you needed anything new to happen, huh?  I'm so sorry that you are having to deal with this and thank you for posting about this condition.  There might be others here who are suffering from this also.

Luckily I don't have this going on.  I have a similar problem when I get too warm, mine is itching, both my feet and hands will drive me crazy (short drive...haha).  

I am glad that you will be seeing your dr so that you can let him know this is going on.  Let us know what he says.

Take care and I hope this symptom will ease off for you soon.

doni

[MrsAristotle]

yes burning feet and hands are the pits arnt they. The problems with these symptoms is that many things can cause them which makes it very hard to diagnose the cause.

I will let you know how i get on with the GP tomorrow, probably a waste of space as usual. x

[doni54]

I am curious to know what your GP will say about this symptom.  It still may be another MS symptom.  It is so hard to know what symptom fits what, isn't it?

Have a good dr appt and let us know how it goes.  

doni

[Quixotic1]

wow, now that is a disorder I had not heard of.  I also found the TEA site and learned a whole lot.  I, too, saw the association with MS.  Interesting.

http://www.erythromelalgia.org/tea/skins/cms/viewpage.php?pname=What%20is%20Erythromelalgia?

They have a picture on this page of a person who has BOTH Erythromelalgia and Raynaud's (the two not uncommonly occur together) who has both things happening at the same time!!  I recommend that people look at these pictures.  They are very enlightening.

Not long ago we had a poster here who asked about Raynaud's syndrome and, if I remember correctly, she had hot, burning redness of her hands occuring immediately on getting into the shower.  We need to find out who that was and try to get in touch with her about Erythromelalgia.  Was it you?

Quix

[Quixotic1]

I found her.  It was Tot Teacher (Alisa) from Nov, 6th.

q

[MrsAristotle]

well saw the GP, she was concerned at the state of my swelling hands, and believes it could be Erythromelalgia and is writing to my neuro for advise.  My feet burn and go red if I stand on them for very long.

QUIX. My daughter who has been diagnosed with M.E. and has similar symptoms to me gets Raynaurds disease.  I am going to send her this link, as she also suffers red and burning feet too.

I spoke to several people on another forum and there are 3 of them diagnosed with Erythromelalgia and all 3 have MS.

2 are from the states and 1 from UK.  It is rare though as I have posted on several forums and so far have found little about this disease. Very interesting isnt it.

[doni54]

I'm glad that your dr is going to get you the answer you need.  It does sound like you are suffering from Erythromelalgia.  Gosh, how smart of you to find that on your own!!!

And, something Quix hadn't heard of?  That's a first, huh?

I will pray that you will get your answers quickly and that the flare ups don't happen often.

Hugs
doni

[tot_teacher]

Hey -

It's me Tot Teacher (Alisa).  I find it interesting that there is actually a name for that reaction to warm ... it wasn't making sense for Raynaud's to me because it doesn't seem to react to cold.  I have downloaded the TEA site info and added it to my reference notes.

Thanks, that's one hurdle crossed ... only a hundred to go!

- Alisa

[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.

[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.

[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.

[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

[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 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

[xani]

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

[sandie490]

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

[MonteCanfield]

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)  

[Alison1954]

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.

[moggyuk]

" 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!

[bbd4u]

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?

[HJane]

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.

[BOK2Bjan]

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

[littlemrspro]

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!

[lowone]

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.