What type of doctors treat Erythromelalgia?

What type of doctors treat Erythromelalgia?

HA! That's been the $10,000 Question! In my experience, the short answer is NONE! In just this past year I have been to several Internists, a Podiatrist, a Neurologist, Acupuncturist, Hypnotist, and not one of them had ever heard of this condition, were willing to work with me on a treatment plan or were successful with pain control. I am sorry this is probably not what you want to hear. I can share with you one recommendation that I have not tried. There was a Dr. with the Franciscan Medical Group in Tacoma who, after admitting he could not help me, told me to see a Hematologist. I was not able to question him about this recommendation since he had his nurse call and leave me a message, Hematology is the treatment of disorders/diseases of the blood. The redness we experience with Erythromelalgia is from excess blood to the area ie; feet, hands, etc. I am not sure, since I have no formal training or education, that this would be considered a "blood disorder", Although, for those of us who suffer with this, it is certainly not normal. If you can find a Hematologist to treat you, please post your experience here.

Which doctor? - DOCTOR GOOGLE !!! and the help of people who are also EM-sufferers - find them in groups on the Internet.

Google can give you whatever is known about EM - more than the doctors know, because too many haven't even heard of EM. If you join some groups of people who have EM, they can share their experience about doctors and treatment and again you can Google to find out about the medications that they are taking and decide for yourself what you may want to try. Hopefully you have a good GP and can take your knowledge to him/her, discuss medications with him/her and consider whatever recommendation he/she is giving you. Since EM is a rare disease and there is no know cure for it, we can only hope to find medications to reduce the flares in frequency and severity.

Dr. Cohen from San Diego has helpful info on the Internet, The Erythromelalgia Association could be of help , there are groups on Facebook. Good luck.

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Ditto Domina! For me, my dermatologist, who said she had never seen it (but must have read about it in a dermatology magazine or website), first just looked at my feet and seemed puzzled. After checking out my overall skin, she said, "I just had a thought about your feet", and went to a file cabinet and pulled out a one-page handout on EM. She said "I can't say, but it sounds a lot like this. Ask your PC." Of course the PC knew nothing. But I, going then onto Dr. Google, as Domina says, realized EM fit like a glove. I am in New Mexico, but I told my aunt in Florida, who asked her dermatologist if he had heard of it. He had read about EM, and told her to tell me to get a board-certified dermatologist. Only , mine isn't interested!

I noticed the Rochester Mayo research on EM has on its teams dermatologists (EM occurs mainly in tissue in and just under skin), neurologists (studies usually seem to associate it with a small fiber unmyelinated nerve problem), and vascular doctor (yeah, blood vessels probably over-dilated - which the studies suggest (???) might be due to the small nerve fibers, that control blood vessel dilation and constriction, having their firing signals messed up and signalling the vessels to stay dilated?

I'm looking for a neurologist, because I'm pretty sure mine is secondary to peripheral neuropathy, which is secondary to cervical stenosis. All this is based by me on the order in which they appeared. But EM has so many possible causes, you have to kind of look at your personal case.

Take some research papers along to whomever you see, so they can get ideas. My PC was very open to that. Great stuff on TEA website.

Good luck to us all, Jane

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Thanks for the Info that TEA has a list of doctors, but even so I am a member with a username and password I cannot see a list of doctors. It seems to be that only people that send a contribution are *full* members with access to everything If that is true, I find it rather irritating that there is no information about that . Don't know whether I am correct, but I can't find a list of doctors when I go to the TEA webpage. Maybe you can tell me where I can find this list dkel. And talking about a list of doctors they promised to have such a list available on this website, but that was MONTHS ago. I am not going ask again, because I was already told that since only volunteers work on this webpage it would take a few weeks

Stay cool.

Domina

I had the same experience looking for this elusive "list" on TEA's website. I sent an email requesting the info, as it says to Contact Us. The email was never responded to. Very frustrating just trying to find a Doctor!

I actually asked TEA for that doctor list about three days ago (email) and was told it's "not ready yet".

I was told that it would take a few more weeks in early August. I have to say I do not care for TEA. It is like they try to lurk you into their Association by making a contribution so you can see all they have to offer. Like the Single Clubs that advertise you can JOIN for FREE but then if you really want to use it you have to pay a fee. Anyway, they don't mention the fact that only with a contribution can you see and read everything and that leaves a bad taste in my mouth. They claim to be a none-profit organization but if they take my money I want to know how it is spend. They claim only volunteers work the website , so it shouldn't make any difference whether I make a contribution or not. Of course if they want to give money to research they would need contributions but I would think that most of us having EM have a *burning* interest to find help and would gladly give money to an Association that is engaged in finding help.

I was also promised on this website that a list of doctors who treat EM would be forthcoming - that was also a few months ago and I haven't seen anything. So the admins of these websites are big on words and small on action - we are on our own and can only try to help each other. I don't have enough computer knowledge or I would start to collect and publish doctors.

there is a lot of good information here too. http://www.livingwitherythromelalgia.org/forum/categories/recommend-a-doctor-therapist-or-clinic-positive-review-only/listForCategory

What I have learned over the years and all the research on individuals personal case of Erythromelalgia is that doctors massively vary! The main common ones seem to be under fields: Neurology, Rheumatology and Dermatology (me personally I see a neurologist who diagnosed me and treats me still 7 years on). I’ve seen people who have even been diagnosed by podiatry! So it really does varies… Some even get diagnosed by GP if the right info comes forth. I highly recommend neurology -from my experience - although like other fields, not everyone has as much success with a field you may have had success from, that’s the tricky part in EM. If you can find a pacific doctor who has known to have dealt with an EM case before OR is knowledgable in EM… Best option! As mentioning a field of doctor is difficult as it may be the same field- but it’s going to be a different doctor… One who may not be willing. Good luck!

I have had the greatest help with a dermatologist. Although she got in trouble for prescribing something for me "outside her field." 25 days ago I went to a Traditional Chinese Medicine doctor in Chicago. I call him a quack doctor. He seemed to know what I have (in Chinese). He said he will make me well and I will see betterment in 30 days. That has been about 25 days ago. I am now completely off of Western medicine (Took me 14 days) and am not worse. It is possible that I am a very very little bit better but not sure. I am currently in Bogota Colombia and back in the US on January 1. I have heard of one person being "healed" by such a quack doctor. So what the heck....I am going to give it a try. The herb medicine and the doctor visit and the acupuncture and the tea....does cost me about $300 per month. I have paid for 2 months. I am going to continue down this Chinese quack doctor path for 6 month or so. If no real improvement....then will try the next thing. If this really helps....I will let everyone know on every EM site. You can count on it. Jim

I found a Dr. here in NH that had heard of EM. A dermatologist and I am working with him. We are starting with aspirin and if that doesn't help, will go to RX drugs. I am taking 2 full strength aspirin a day. Not sure if it is helping. Will try for another 2 weeks. I am also watching what I eat. No food preservatives. They really make me flare.

Pat in NH/US

Dear Everyone:

In response to this thread regarding doctors, I wanted to provide the following information about TEA and the doctors' list that is being discussed here and other issues regarding TEA that have been brought up:

TEA does have a list of doctors that were recommended to TEA members from other TEA members.

The list is fairly small at this point and does not cover all geographic areas - this is because TEA is listing only those doctors specifically recommended by helpful TEA members.

The doctors on the list are not necessarily experts in EM (most are not) - but have either seen at least one EM patient in their practice and were helpful to the TEA member who recommended them.

In most cases, the doctors on the list were not experienced with EM but were willing to learn about it along with the TEA member.

If there is not a doctor on the list in your area, that does not mean there are no doctors near you that will help you. You should be looking for a doctor who is willing to take the time to read articles describing EM and listing treatments that have been successful in at least some EM cases. The doctor that is your ideal candidate would be willing to work with you to safely try different treatments on you until you find something that gives you improvement.

For many years, TEA has kept this list of recommended doctors next to our computers and our phones so that as soon as an inquiry comes in, we can look to see if a doctor is in the area of the person inquiring. There is no holding back of information on the part of TEA - I can certainly assure you! The volunteers at TEA all suffer with EM symptoms and desperately want to help any others whenever possible.

Currently, the TEA website does not have the doctors listed. TEA has not published this doctor's list because there was concern that the information on the list was not up-to-date and would just be sending members on a wild goose chase. There are people working to call each doctor on the list to verify their contact information.

In the meantime, any email or phone inquiry will be answered. We respond to every inquiry within a very short period of time.

TEA files a form 990 with the IRS every year. For the year 2012, TEA received $21,261 in individual contributions and $9,868 in membership dues. In the same year, TEA contributed $40,000 to research, spent $7,550 on newsletter printing and mailing, $958 on insurance for the organization, $2,057 on the website and $175 on office supplies (paper and ink). In the 990, it is required that the organization list all board members and their compensation. All is $0, as there were no salaries paid. TEA board members and other generous volunteers give whatever spare time they can while managing full lives hampered by the pain of EM. You can see all 990s filed by TEA at guidestar.com – more specifically if you put this in your address bar you can see the 990 from 2012 - http://www.guidestar.org/FinDocuments/2012/911/950/2012-911950872-09403519-Z.pdf

There just is not enough funding to employ an executive director. If there was, we would be able to have more services and greater growth.

TEA is on your side - but certainly limited due to financial constraints and physical pain! Work with us - if you don't hear back from us, contact us again and tell us about any lack of response. We will work on it!!!

Beth Coimbra, President

TEA

Hi! Boy I sure hope you are near CA, since I am a patient of the Stanford Pain Clinic at Stanford, and my pain doctor is actually am EM specialist. She’s fantastic. I used to see an EM specialist at UCSan Francisco’s neurology dept, but he retired a while back. I’m happy to forward my EM doctor’s info if needed.
Although, I still come here to see if you guys have had success with other treatments than I have already done : ).
Be well and STAY COOL!!!
Pesto



Pesto said:

Hi! Boy I sure hope you are near CA, since I am a patient of the Stanford Pain Clinic at Stanford, and my pain doctor is actually am EM specialist. She's fantastic. I used to see an EM specialist at UCSan Francisco's neurology dept, but he retired a while back. I'm happy to forward my EM doctor's info if needed.
Although, I still come here to see if you guys have had success with other treatments than I have already done : ).
Be well and STAY COOL!!!
Pesto
Pesto,
Could you give us the name of your "fantastic" doctor? I, for one, would be willing to travel from Seattle to see someone with that glowing recommendation! Especially since my luck up here has been horrible. Part of the difficulties I have encountered are seeing any of these Specialties (Rheumatalogy, Dermatology, Neurology) require a referral from a Primary Care before the Specialist will make an appointment. Since I do not have a Primary Care, I am out of luck. I tried t explain my lack of a PC is WHY I NEED TO SEE A SPECIALIST, but that's my problem. They don't want to waste their "special" time with someone that may or may not require their help, a screening process, if you will.
Jim, your so called "quack doctor" may have you singing a different tune before all is said and done. I hope that is the case for you. Unlike western medicine that is also hit and miss, the side effects are not an issue. I am wondering how your travel to Columbia has affected your symptoms? Assuming you flew there ( is there any other way) did the lack of leg room, pressurized cabin and "please return to your seat, keep the aisle clear, fasten your seat belt FAA regulations, create havoc for your symptoms? How do you manage them when flying? I had an awful time on just a short 2 hour flight recently that a trip to the east coast is out of the question for me unless I figure out a way to manage. Thank you for sharing your info and good luck with your quack!

Look up Jay Cohen. He’s a doctor that has it and there is a lot of useful information on his EM information pages.
Also, Mainstream medicine views EM as a pain disorder. But I think it is primarily a circulatory condition that causes real pain and the fact that people can both see and feel the heat in my hands and feet is a major reason it should not be classified as a pain disorder. I am looking at EM in a holistic manner so I can maybe figure out the root cause. I definitely will tell all here if I come across anything new or significant.

I see a Rheumatologist. He diagnoised it immediately. He highly recommended aspirin for the temperature in my feet and also put me on Gabapentin for the nerve pain. I am also seeing a Neurologist who has ruled out neuropothy, diabetes but thinks the pain is coming from my spine as I have severe back pain too. The redness went away after the aspirin was used but there are times when my feet literally turn dark purple. I am on 600 mg of Gabapentin 3 x day and I keep my feet elevated and sit almost all day long. Walking or standing is difficult. The Gabapentin makes me very sleepy and I am dizzy and have blurred vision so don't drive very much. I have been laid up with this since April of this year. There are days when I feel my active life is over. I try not to complain but it is difficult not to whine. I am very religious, so I do a lot of praying. I hope this helps someone. God bless all of you, Myself

Gabapentin causes swelling of the extremities. It is the primary reason I stopped taking it. There was no guarantee it’d help, and it was making things worse while I was “giving it a chance”.

I was once active, too. This video helps me remember that pain can be pushed through.



http://youtu.be/wXKqniqDEhU


This woman inspired me to push myself. She is amazing.
I try to remember that I can still do anything. It may hurt like crazy, but I can still DO. I am tired of EM ruling my life and dictating to me what I can do. Yes, I often let it have it’s way, but I choose to. I am going to hurt no matter what. I may as well have fun at the same time. You’d be amazed at how much pain you can push to the back of your mind. It’s when you stop going that you have no choice but give full acknowledgement to the pain.

I think Cheshyre is right, as far as it goes, on the circulatory problem, but that doesn't explain why one foot is suddenly red and hot, then an hour later, it clears and in minutes the other foot is flaring. I think, from reading, that the circulatory problems are initiated by nervous system problems. The genetic version is a protein sodium channel in nerve tissue stays open too long, allowing the electrical potential needed for nerve firings to get stronger and stay open longer. Somehow (I'm still reading and trying to understand) that stimulates dilation or contraction of muscles of capillary walls (and I don't know how or which).

I'm thinking that if that's (sort of) the mechanism for the inherited version, and most types seem to ACT the same, it may also be related to non-inherited forms of EM. Makes sense to me for EM secondary to neuropathy, at the very least.

Which makes me think having a Neurologist's in-put might be useful.

Jane

Jane, I have the same thing. (one foot is suddenly red and hot, then an hour later, it clears and in minutes the other foot is flaring.) Walking sets off my EM. Too much standing as in cooking. Grocery shopping. I came home from shopping and my left foot flared for 5 hours and then went away. Then later that night my right foot flared. One day I had a flare which came on gradually and lasted for a few hours and then just stopped like turning off a switch. I have found a doctor in my area that has heard of EM and is working with me. I want to ask about genetic testing for EM. I have granddaughters that complain about their feet being hot at night. When I was in my 30's my feet would be hot at night also. Hope they aren't getting EM.

Pat in NH

Jane said:

I think Cheshyre is right, as far as it goes, on the circulatory problem, but that doesn't explain why one foot is suddenly red and hot, then an hour later, it clears and in minutes the other foot is flaring. I think, from reading, that the circulatory problems are initiated by nervous system problems. The genetic version is a protein sodium channel in nerve tissue stays open too long, allowing the electrical potential needed for nerve firings to get stronger and stay open longer. Somehow (I'm still reading and trying to understand) that stimulates dilation or contraction of muscles of capillary walls (and I don't know how or which).

I'm thinking that if that's (sort of) the mechanism for the inherited version, and most types seem to ACT the same, it may also be related to non-inherited forms of EM. Makes sense to me for EM secondary to neuropathy, at the very least.

Which makes me think having a Neurologist's in-put might be useful.

Jane