Hi, I am new here, but I have a couple questions that I want to ask everyone.
First off, I have rheumatoid arthritis and it's been a few years since I was diagnoised with it. My condition was under control until two years ago I started to experience pain in my feet. All my test results show that my RA is still under control and all my doctors can't seem to find anything else wrong with me that should be causing this burning pain.
I have seem a few different doctors since and no one can really tell me what's wrong until I stumbled on some info about EM online. Even though many symptoms match, still none of the doctors can confirm it. I just want to know how are people usually get diagnosed with EM? which specialist should I see? and anyone else that has RA as well as EM? is it possible??
Many times you have to be your own self advocate and tell the doctors what you think it is . Then they will try to disprove you. After all of the testing done on you (& money spent) they give in and realize that you were right after all. That is what happened to me and I'm sure some other people.
I have heard of people getting diagnosed with EM from a dermatologist, and a rheumatologist. Many times EM is secondary to such conditions as RA or MS along with others.
RA can cause secondary EM, so there are other people out there who have both. It is more than possible. I have mild RA, although it developed long after my EM.
As EM is so rare, not every rheumatologist or dermatologist will recognise EM, although I would have hoped that they had heard of it. I was formally diagnosed by a vascular medicine specialist (make sure they don't give you a vascular surgeon!). I only ended up seeing that doctor after a medical physicist told my parents that it was EM (I was only 8 years old at the time) and suggested that I see this person The best way to get properly diagnosed is to ask if anyone knows of a doctor who is knowledgable about EM in your area. It's awful that you've had to do all the research yourself but is not uncommon.
My gp sent me to a Neurologist 6 years ago. EMG testing showed I have nerve damage to the sensory nerves… Took roughly a year of her testing, looking for answers when she stumbled across EM… I googled it and it was all my symptoms. There’s only a test for genetic EM…that’s just a sample of your blood that gets sent off to Germany, sometimes somewhere else also. With me in Scotland, that test took roughly a year to come back… It was negative of genetic EM, she consulted in top EM specialists in London and agreed it was certainly EM. A few see dermatologists, in my experience with them all they could supply were lotions and posions! Which sadly, y feet can’t tolerate as it makes my EM flare tooooo much!! They being dermatologistß ‘skin specialists’ couldn’t understand this at all, and actually wrote down on file ‘refused any help of creams’ the cheek of them! But for me a neurologist did it, I attend her for 6 years until she recently dumped my ass! But hey, atleàst she diagnosed me!.
karenatl that's totally what's happening to me, my family doctor and rheumatologist don't know much about EM and can't really say if I have it or not. Family physician sent me to a neurologist who did a EMG test but the results show no verve damage. So now I really don't know if I am just being paranoid about this.
My main problem is constant foot pain that's like a burning sensation which gets worse when I walk around too much. My foot gets red and swollen if I stand or walk. It's so annoying and upsetting that no one can tell me what's really wrong.
Some of my relatives with EM also have RA. However, some of us have EM but not RA and some of us have RA but not EM. In my family it seems to be coincidental when they occur together. Or else RA is one possible trigger for those in the family that are predisposed to EM, but there are other triggers for the onset also.
I was diagnosed with Ankylosing Spondylitis prior to being diagnosed with EN. My first doctor couldn’t figure out why my feet were hurting so bad & not responding to any of the standard Rheumatology meds! My feet were so bad, I could barely walk & they would turn bright red & purple right in front of him. Since he couldn’t figure it out, he said it was depression from my illness! Ha, never seen depression perform magic tricks! So, went to a different Rheumatologist who saw my feet & came with the diagnosis pretty quickly.
I also have AS and am currently in the diagnostic process with an openminded doctor who is familiarizing herself with EM--she feels it is the right dx for me; my legs, feet and hands are effected (sometimes my face as well). Because I am overweight and my legs are swollen and red (feet, ankles and about 3" above ankle) vascular doc diagnosed me with lymphedema. Though they could not explain how compression was not working to reduce swelling and how the compression was severely painful to me and seemed to create more issues. Just having an answer will be mentally relieving!
correen said:
I was diagnosed with Ankylosing Spondylitis prior to being diagnosed with EN. My first doctor couldn't figure out why my feet were hurting so bad & not responding to any of the standard Rheumatology meds! My feet were so bad, I could barely walk & they would turn bright red & purple right in front of him. Since he couldn't figure it out, he said it was depression from my illness! Ha, never seen depression perform magic tricks! So, went to a different Rheumatologist who saw my feet & came with the diagnosis pretty quickly.
I am sorry you have to go through this on top of your RA. I know RA alone can be difficult to live with.
Autoimmune diseases are one of the many causes of EM although it is still possible for them to be separate issues. I don't have RA but I do have an undifferentiated connective tissue disorder . We have yet to figure out exactly which kind or kinds it may be. My symptoms of both came on about the same time so I am convinced they are related although my Rheumatologist isn't willing to say for sure either way. I have been treated with immune suppressing drugs and all of my other symptoms are not gone but under control for the most part but my EM still persists. From what I have read supposedly if the underlying condition causing your EM is treated it is supposed to get better but then again they really don't know enough about EM to say anything for sure.
Many different types of doctors can diagnose EM although so few doctors know about it that ONE doctor can be hard to find if there is even one in your area. Please see the doctors tab above to see if we have one on the list in your area. Sometimes the best course of action is to print out info on EM and take pictures of your flares if your doctor hasn't seen them in person already to a doctor you trust. Most cases of EM are diagnosed from clinical presentation because other than genetic EM there is no real test for it. In a few specialized hospitals such as the Mayo clinic in the US they have some tests that they can do that suggest that it could be EM but not that it is. In the end it is still diagnosed by symptoms and ruling out other causes.
I hope you get a diagnosis soon because there are treatments available that can help with your symptoms. My best advice is don't give up on getting that diagnosis and the help you need. If one doctor wont listen or believe you just go to another and bring all of your info and photos and try again. If that one doesn't listen jut move on to the next one. I had some difficulties and had to go to several doctors but then again I didn't have a good relationship with one before I started my quest so hopefully it will be easier for you .
Just a quickie reply to something you mention. The swelling that accompanies EM is often misdiagnosed as 'classic lymphedema'. With heat and pressure being two main triggers (alongside fatigue, stress) compression generally worst thing to do. I totally empathise as the very same situation happened to me. Bless you - how could you tolerate that added pain!
I found that my swelling eased overtime with MLD- (manual lymphatic drainage) ,which may sound a contradiction to what i have just written but the gentle light comforting movement boosting circulation and immune system ie: elimination of toxins, did and does help . Link to post on MLD/research articles http://forum.livingwitherythromelalgia.org/forum/topics/lymphatic-dra....
However, for me, heavy dose antihistamines have been a saviour in much reducing my swelling -my legs/ankles were the size of an elephants( itching is slightly more tolerable ,too). Attach link to post/research articles http://forum.livingwitherythromelalgia.org/forum/topics/antihistamine...
As Alina says - do not give up! .Most EM'ers see on average 5 Dr's and spend many years chasing the correct diagnosis especially with so many differential diagnoses like CRPS , for example. Now with sites like Bens Friends you have help,support and an arsenal of information which can help speed this exhausting upsetting process up . We know how that is dearest K-ren - please be comforted in that we are here to help and guide you as best we can :-). Access our 'toolbox' tab for lots of information to print off. Take all this information, daily photos, pain/symptom diary with you as 'evidence' to show your Dr.http://forum.livingwitherythromelalgia.org/page/information-new-membe.... EM diagnosis is based on clinical presentation and patient questioning (profile). All diagnostic tests are to eliminate differentials or, as in the case of thermoregulatory testing , cold water pressor test etc.. to guide diagnosis. EM is often called SFN by any other name but only 40% of EM'ers show SFN - majority do not. No known diagnostic test exists for EM.
Regarding Dr, we are currently compiling our Dr directory list so please let us know if you want us to check for PA names. K-ren or Wen , if you have found a good EM Dr or proactive Dr (which you seem to have - hurray!), please share those details with the moderator team. Its only through sharing that we can facilitate help to the EM community.
With the right multidisciplinary poly pharmacy approach , lifestyle changes and minimisation tactics we can better manage EM. :-)
The gentle lymphatic massage did help my swelling, so does elevation. I have not tried antihistamines.
The doctor who is helping me is a friend of a friend, she is very open minded and I just saw her yesterday. Though I had to drive two hours to get to her. She said EM fits with my clinical presentation and my symptoms. I have been taking photos and sending them to her as well as symptom lists and family history (my grandmother had the same thing burning, swollen, shiny, red legs and feet which they called "edema" back in the late 1970s early 80s). One of the reasons I sought treatment so aggressively for myself is that I remember how she suffered and what it looked like. When my legs starting looking like hers it scared me to death. That is how I first was (mis) diagnosed with lymphedema. When the treatments did not help (made worse actually) I moved on. My current doctor is going to start me on lyrica as a first try at management. I'm dropping of the script today. Swelling reduction would be a godsend-- I might send her the antihistamine information. She said it may take a combination of things/strategies to manage all my symptoms and bring relief. She is amazing and I am thankful I found her.
mads said:
Dearest K-ren,
Just a quickie reply to something you mention. The swelling that accompanies EM is often misdiagnosed as 'classic lymphedema'. With heat and pressure being two main triggers (alongside fatigue, stress) compression generally worst thing to do. I totally empathise as the very same situation happened to me. Bless you - how could you tolerate that added pain!
I found that my swelling eased overtime with MLD- (manual lymphatic drainage) ,which may sound a contradiction to what i have just written but the gentle light comforting movement boosting circulation and immune system ie: elimination of toxins, did and does help . Link to post on MLD/research articles http://forum.livingwitherythromelalgia.org/forum/topics/lymphatic-dra....
However, for me, heavy dose antihistamines have been a saviour in much reducing my swelling -my legs/ankles were the size of an elephants( itching is slightly more tolerable ,too). Attach link to post/research articles http://forum.livingwitherythromelalgia.org/forum/topics/antihistamine...
As Alina says - do not give up! .Most EM'ers see on average 5 Dr's and spend many years chasing the correct diagnosis especially with so many differential diagnoses like CRPS , for example. Now with sites like Bens Friends you have help,support and an arsenal of information which can help speed this exhausting upsetting process up . We know how that is dearest K-ren - please be comforted in that we are here to help and guide you as best we can :-). Access our 'toolbox' tab for lots of information to print off. Take all this information, daily photos, pain/symptom diary with you as 'evidence' to show your Dr.http://forum.livingwitherythromelalgia.org/page/information-new-membe.... EM diagnosis is based on clinical presentation and patient questioning (profile). All diagnostic tests are to eliminate differentials or, as in the case of thermoregulatory testing , cold water pressor test etc.. to guide diagnosis. EM is often called SFN by any other name but only 40% of EM'ers show SFN - majority do not. No known diagnostic test exists for EM.
Regarding Dr, we are currently compiling our Dr directory list so please let us know if you want us to check for PA names. K-ren or Wen , if you have found a good EM Dr or proactive Dr (which you seem to have - hurray!), please share those details with the moderator team. Its only through sharing that we can facilitate help to the EM community.
With the right multidisciplinary poly pharmacy approach , lifestyle changes and minimisation tactics we can better manage EM. :-)
I was diagnosed by a vascular diagnostician, 9 years ago. He knew the first day I saw him that it was EM. A few consultations later he also disgnosed POTS, a form of dysautonomia. Although my neorologist thought I had another form known as PAN - which actually does seem to fit a bit more with the EM, at least in my opinion. My allergist sent me to the vascular diagnostician as she thought 'something else was going on.' I was overwhelmed at the time and nearly didnt go see this doc but am so glad I did. Not that he has been able to do anything to treat EM. I was already doing the things like showers,fans running constantly etc. I had cut out any foods that trigger sone of my flares. I saw him a few months ago and he still had nothing new to offer me. I do take opiates for chronic daily migraine and this helps a little with EM. A lot of the meds that seem to be used for EM are also used for chronic migrsine so I have pretty much tried most of the meds offered already. I did have some success with an antihistamine - cyproheptadine - which treated both my migraines and EM to a fair degree. But it did stop working. I stopped it and some months later started it again and it worked for a few months and then stopped. I am about to try it again soon..
anyway, my guy was a vascular diagnostician, not vascular surgeon.
