I am new to his site and have never posted before. I am a bit hesitant to ask, but I am in desperate need of advice. My EM has worsened in the past month, and in the last two days my arms began stinging and burning. It feels as the EM is gradually moving up my arms. My doctor, who is not familiar with EM, gave me a steroid pack, prednisolone. Have any of you tried this regimen of treatment? Is it harmful to try? I don’t know what to do and am so afraid. Also, I need a doctor in Georgia or Alabama with EM knowledge, if anyone has a recommendation. Thanks for any help 
Hi Karen, I'm sorry you have EM. It isn't easy finding a doctor who has heard of EM - that's for sure. I'd try just getting on the phone and making calls. Try dermatologist and neurologists especially. My dermatologist is the only one I've met who heard of it (in fact, she told me it might be EM - which at the time I never heard of). She didn't want to deal with it, but at least she recognized it. If I were you, I'd ask the University of Alabama Medical School Hospital (there should be one) and ask if any of the Derm's or Neuro's have heard of it.
Also get some printouts of EM info, what it is, how to diagnose it, and what meds are being tried for treatments, and take them to a Dermatologist or Neurologist, and tell them you really need their help figuring it out. A doctor at the university of Alabama Medical School might be especially interested in something unusual. The Government National Institute of Health has some good stuff you can printout. It's at this website:
rarediseases.info.nih.gov/gard/6377/erythromelalgia/resources/1
A page on "overview" pops up, with more info to click on in the left column.
I hope this is a useful idea for you. I live in New Mexico, so that's of no use to you. I know the Mayo Clinic in Rochester MN has a research team doing some investigation, but there are no absolute answers yet (unless you have the inherited gene mutation form - which is being investigated at Yale University).
Check out TEA - The Erythromelalgia Association. It costs $20/yr. It's got some pretty interesting research articles.
I hope it all goes well for you.
Jane
Dear KarenV,
Bless you. How very hard for you. EM is such a disturbing distressing disease. Generally, no one experiences it exactly the same way, and trying to managing symptoms is not a one size fits all. At present there is no known cure but many of us EM'ers try to manage the symptoms using a polypharmacy approach - ie: using a variety or package of treatments, therapies, tactics to minimise flaring. OK, saying that ,yes EM can be progressive , and can rapidly worsen .Many of the symptoms are shared by all such as the characteristic burning hot poker flares- lobster red skin but in varying degrees, and edema (swelling) Other symptoms, however, are more individualised and greatly vary such as allodynia ( painful to touch skin), formication (tingling like ants crawling over you), numbness, tremors/twitching , muscle weakness etc... I can only speak from my experience ( full details are on my profile), but briefly I was struck down and totally disabled - bedridden and need of a carer within two months of my first symptoms. It seemed to just attack and spread like wildfire.12 months on it has spread to my eyes, ears, vaginal area and internally. My symptoms have mostly intensified in frequency/acuteness.However, this is an extreme case of widespread chronic EM.
That said there are many tactics you can adopt to help minimise flares, a range of medications that may help make symptoms more manageable for you, self help treatments like vitamins supplements etc...
Basically - Dr's favour two main treatment routes 1. serotonin therapy, 2. sodium channel blocker therapy . Most EM'ers are also on lyrica/neurotonin (pregabalin/gabapentin) for neuropathic pain. It helps some , not others.. so as I said EM is not a one treatment fits all. Its really a case of trial/error.
There are certain things you can get yourself trying straight away in order to see if it helps you.Ive added some research/information from Dr Cohens work here for you. It also gives some idea of possible treatments that your Dr could try you on.
Re:prednisolone research for you
Steroids, to my knowledge ,and in my experience ,do not help EM- but you may have underlying issues.Read the link and make an informed decision. They are used in arthritis and rheumatology with amazing results but EM is not an 'imflammatory' disease.
Re:steroids
www.mayoclinic.org/steroids/art-20045692
I am going to attach quite a lot of information.Its imperative you get yourself informed I would also advise that you take photos and start to catalogue your daily symptoms, flares, what medications you are taking etc.... Keep a pain diary too.... I find it helps to grade my pain out of 10. All of this will help you get the proper diagnosis and give you fuel to fight your case. Most Dr are not knowlegeable about EM- many have never heard of it- let alone have any inkling of how to treat it. Re: Dr............. A Pain specialist is usually the best bet - at least in UK.
The good thing is that you are now with us on the site , and we are extremely helpful and supportive
Give a shout out on another post with the area you are looking for Dr . Someone will know .
Stay strong my friend
God bless
mads
377-TEA2012BROCHURE.pdf (1.65 MB)More attachments lol!
God bless
mads
375-TEABROCHURE.pdf (130 KB) 376-em.clinicalstudy87cases.pdf (141 KB)Hi, I think you have come to a great support site! I do hope and pray for you whatever path you chose to follow. The decisions are hard.
Here is my recent post.
My sister, Valerie, has a very bad condition of EM with extra complications for over 15 yrs now and it seams that another sister and I have been battling for 5 to 7 yrs now. I have been keeping it less troubling than my sisters through diet but with the move to France I ate all the normal french things and have gone into decline. We each live far from each other and have different approaches.
My two sisters have been taking lyrica and lots of other stuff. One is a junk food lover the other very balanced eater. Valerie, who has been 15yrs with it, moved to a wheel chair many years ago and gets herself to the swimming pool a lot. She is lucky that the pool she goes to has minimal chlorine and is salt water mainly (because I break out in rashes when I try to go 5 times a week like her). She mainly does treading water in the deep end and is now up to spending over an hour in the pool. We lived in Australia many years and now they live in Canada and after 12 yrs in the USA I live in France now.
I have also the EM very clearly last summer and fall. I am going through a great period right now where I think it is clearning up. I am doing many things to help. Deep breathing excercises (pranayama Yoga). Needing an expert to privately teach you if group classes don't work. Also some good u tube videos.In fact I have decided to become a teacher as it is helping me so much.
I am eating all evening meals vegetarian with legumes and mainly animal proteins at lunch (vegetables improve blood alcalinity and that helps fight disease). I am trying to eat several forms of probiotics, a capsule, soya yogurt and will soon try another (this is as of 1 month they told be I had a very bad immune system). My big problems started 7 yrs ago when I had a terrible sinusitus and this required several months of antibiotic treatment!!!. I did not know at the time that I was supposed to re establish a healthy stomach flora (known as your immune system). Since then my feet and other problems got worse and worse. Plantar facciitis turned into EM plus more...
Recently I found a doctor willing to do deeper tests and I showed her the photos of my feet and the EM photos from this site. Here in France she is a general practictioner doing homeopathy. In any case I had some immune systeme blood work she ordered for me that was not covered by insurance but showed high levels in my blood of dangerous bacterias (mononucleosis, past, and micoplasma pulmonary) and not enough of good bacteria. I am taking her prescritions methodically and no longer have pain keeping me up until 5 am and I am no longer taking pain killers. I am still hot in my feet but not as intense. I am also following the advice of a shiatsu practitioner and doing a helbal treatment to repair nerve tissues.
I know this is a lot of changes for most people but please give it a try. It will take 3 months to see results and must be continued for a while. The pain killers can be eased off later as you get more confidence.
Best wishes to you,
Lorna King
Hi Karen,
To answer your question, my primary Dr., prior to diagnosis of EM, tried treating my symptoms with Prednisone and shock therapy for my lower back. It didn't work because it was an EM flare. It may work differently for others but it didn't help me.
I am in Upstate NY and was diagnosed by a Rheumatologist and was told by a Neurologist that a Rheumatologist would be the Dr. to go to for treatment. Unfortunately the Rheumatologist in my area won't treat it because she says there is no treatment.
I have had EM for over 8 years (without knowing) and was finally diagnosed last year. The EM symptoms will spread and worsen. The more active you are and the warmer you allow yourself to get will cause flares. My EM started in my lower back, then in about a year it spread to my hands and feet, and within a year from that it spread to my lower legs and arms. The only treatment I am on now is for pain. With more and worse flares I am going back to my primary Dr. because it has now spread to my neck and head. I am no longer able to do any activity, even typing is very painful (hence the reason why I am not on here posting too much). If I don't take a luke warm shower or colder I get dizzy and get blurred vision. It also causes a lot of pressure in the head like it does with the hands and feet and is constantly there. My balance is also now off.
In the beginning the only blood vessels that were flaring were the capillaries (the vessels that feed the tissue) and now it affects all of them.
I'm sorry to hear you have EM. I would not wish it on anyone. I will share whatever information I get. I was told there may be a Dr. in Rochester NY, but it is a Dermatologist. I don't quite understand how a Dermatologist would be the Dr. to treat a blood vessel disease?
Good luck!!
KAY
Hi Karen
As others have posted you may not find a doctor familiar with EM but you can find a doctor willing to be educated on it and willing to help you experiment in finding a treatment that works for you. IT is helpful to print out information on EM and treatments available as well as keeping a photo/pain diary for your doctors. Don't hesitate to change doctors if they aren't willing to learn about it and try different methods of treatment.
When you stated that the stinging burning sensation seems to be spreading up your arm are you referring to a pressure like sensation with burning stinging needles? Kind of feels as if they will literally explode if you don't stop it from happening? Does it help it to raise your arms above your heart? It won't stop the burning but will stop the pressure/ Burning needle sensation.
I remember when mine first started it was just in my hands then just in my feet. As time passed that sensation would spread further and further up my arms and legs. I became afraid if it continued to spread up my arms and make it to my heart something terrible would happen. I also thought there was a real possibility my blood vessels may burst. It was not only excruciating but scary too. I don't have any type of panic disorder or anything like that but when that happens it sends me in a panic to make it stop. If it is in my hands and arms it is not as big of a deal I just raise my arms up ( my surgeon hands) but if it happens in my feet/legs I can stress out trying to find a place to get my legs up!
It has been a couple of years and it hasn't spread past my elbows and knees. I know everyone's EM is not the same but I wanted to set your mind at ease that other than pain and pressure nothing has ever happened as a result of what ever it is that is happening causing that sensation. It is definitely not a sensation I can tolerate or ignore. Now that I am no longer working and spend 99 percent of time at home I can avoid it most of the time by limiting my activity and keeping my house cold.
Hang in there Karen. I wish I had known about known about this site when I was first going through this. It is comforting to know others are going through the same and to have some idea of what to expect. Take care,
Alina
Hello, I’m sorry u may be suffering from EM, but if u can find the right treatment u can live a relatively normal life with some adjustments. I just wanted to mention that yes prednisone and other steroids can really help if u have an inflammatory disorder behind this, but if u don’t I find prwish u theednisone to be harmful. My doctor also but me on a very high dose of steroids when I first got the disorder to see if it would force it into remission. At first it seemed to help, but after I began to lower my dose it seemed as if my em spread quickly up my legs and the flats were constant and my legs were twice the size. So if it seems like while u are in the steroids it is making your em spread faster I would try to talk to your doctor about weaning off it because I believe it can make em spread.
I hope this helps and I don’t mean to frighten you, because even though it spread and I went through the worst find if my life I got much better with a medicine called Mexilitine a calcium channel blocker, but it doesn’t work for everyone, you have to find the right treatment combo for you. I wish u the best of luck on what could be a difficult time, but a lot of people on this site have learned to manage their em with time and patience.
And I’m sorry for all the errors. I’m on my phone and it would not let me go back because it always freezes on this site 