Hi, My my name is Jen and I have recently been diagnosed with EM. I have a history of Raynouds and other than that was healthy. I recently had major surgery and than everything went down hill from there. My legs, toes, feet and hands intermittently get red, hot, warm and change colors all day. Elevation and Lyrica have become my life. All the doctors were puzzled and I was originally diagnosed with RSD. Until I went to Pain Management and was diagnosed with EM, which actually makes more sense because I have text book symptoms of this. Would like to know if anyone else had this happen to them.
Yes, following knee replacement surgery with kidney failure, I had a severe exascerbation of Erythromamelalgia. Hospital doctors were "sure" this was Deep Vein thrombosis and sent me for scanning three times. During these times I can get no shoes, slippers etc. on.
Since having an Aortic Valvuloplasty have had a long exacerbation which just will not die away and again this was thought to be DVT - which again it was not. Am struggling on, using Boots skin cooling preparation, can't get stockings or shoes on .Katriona
Yep- Had raynauds forever and EM came after surgery on my feet for Morton's neuroma. It was bad, though I didn't know what it was, right after the surgery for months. EM then came back with a vengeance 7 years later.
Hi Katriona,
Yes they originally thought I had a DVT also, but I had a DVT 23 years ago and I knew this was not the same. The odctors thought I had everything ranging from DVT to Carcinoid Syndrome. Needless to say my anxiety level was through the roof!! Now the EM totally makes sense.
Katriona said:
Yes, following knee replacement surgery with kidney failure, I had a severe exascerbation of Erythromamelalgia. Hospital doctors were "sure" this was Deep Vein thrombosis and sent me for scanning three times. During these times I can get no shoes, slippers etc. on.
Since having an Aortic Valvuloplasty have had a long exacerbation which just will not die away and again this was thought to be DVT - which again it was not. Am struggling on, using Boots skin cooling preparation, can't get stockings or shoes on .Katriona
Hi Dorothy,
I also have had Raynauds for years. About 10 days after my surgery my symptoms had manifested. But strangely it started in my legs and feet. Because of my legs and feet, all the doctors were thinking I had DVT,s. I have noticed that my Raynauds is also worse after the surgery. My fingers are extremely sensitive in the cold and during the winter I was wearing 2 pairs of gloves on each hand and I was still getting white numb fingers! So I am now dealing with both issues. Has either of these ever settled down for you? I see you replied it came back 7 years later, was it because of surgery again?
Dorothy in Michigan said:
Yep- Had raynauds forever and EM came after surgery on my feet for Morton's neuroma. It was bad, though I didn't know what it was, right after the surgery for months. EM then came back with a vengeance 7 years later.
Hi Jen . I know we spoke before but just wanted to come in here as well. I didn’t have Raynauds’s at first but ever so mild it wasn’t a problem EM in hand’s but didn’t know. Right after a surgery my EM came full force and all over my body. A couple of months later the Raynauds’s showed up and a pretty bad case of it including pernio in my feet and Levi do reticularis all over my body ( like Raynsud’s , pernio , EM caused by a circulation problem).
It's a frustrating disease. After hip replacement surgery my symptoms disappeared for three months. My neurologist has no idea why although I was taking oxycodene, especially during my rehab period.
Hi Alina,
Is it a circulation problem? I saw a vascular surgeon before I was diagnosed with EM, his words after doing numerous tests, doppler etc were " You have the circulation of an 18 year old." lol But he said he suspected nerve damage from my operation and to go to a neurologist. Hence many doctors afterwards and I feel like I'm getting bounced back and forth, the neuro said its another type of pain syndrome involving blood vessels and inflammation, but he does not treat this either because all my tests coming back normal, no nerve damage. Who actually treats this? NYU in New York City does not. I am waiting to see if blood test my pain management doctor has ordered will be approved from insurance. So still feeling in limbo.
Alina Delp said:
Hi Jen . I know we spoke before but just wanted to come in here as well. I didn't have Raynauds's at first but ever so mild it wasn't a problem EM in hand's but didn't know. Right after a surgery my EM came full force and all over my body. A couple of months later the Raynauds's showed up and a pretty bad case of it including pernio in my feet and Levi do reticularis all over my body ( like Raynsud's , pernio , EM caused by a circulation problem).
Hi Jen,
I attributed what were mild flares to my raynaud's for years. Not sure why it came on with vengeance this past year (no new surgery) but am just now experiencing relief. Just yesterday, I posted on the alleviation of symptoms & am really trying to tease out the cause (maybe the post will show up if you click on my name?). I kinda suspect the EM is my body overreacting to the raynauds. Wishing you luck and relief.
When I looked up RSD it referred to excessive sweating - the opposite of EM. But, to get back to your original question, it is my understanding that in numerous cases - EM is greatly exacerbated by a major physical incident. For me, it was a car accident in 1998. After that my symptoms were off the chart. This is when I could not manage my symptoms under any condition. I had surgery two years later to correct my herniated and bulging disks but that had no effect on my EM. I take Ritalin now which takes care of my EM symptoms so well that no one would know I have EM other than me.
I think at least a few autoimmune diseases seem to onset after a trauma of some kind, surgery, pregnancy, major illness, car wreck... Celiac disease, at least, many people can point to something they suspect triggered their disease.
Hi,
Yes, RSD I read that also and I also read that with RSD it is usually on 1 side whereas EM is bilateral. Which had me puzzled when the neuro originally diagnosed me with RSD. I have no sweating and do have bilateral redness, heat and burning which feel better with elevation. The pain management Dr. diagnosed EM within 10 minutes in his office. I am happy to hear that you have this under control because I hope I get there also. Totally feeling like my life, at the moment, is revolved around this.
NotSuffering said:
When I looked up RSD it referred to excessive sweating - the opposite of EM. But, to get back to your original question, it is my understanding that in numerous cases - EM is greatly exacerbated by a major physical incident. For me, it was a car accident in 1998. After that my symptoms were off the chart. This is when I could not manage my symptoms under any condition. I had surgery two years later to correct my herniated and bulging disks but that had no effect on my EM. I take Ritalin now which takes care of my EM symptoms so well that no one would know I have EM other than me.
Hi,
I have been reading so much stuff and I read this as well. Because with the world wind of doctors I had been seeing to figure out what was wrong with me, lupus was one thing that came up, which I don't have, but heard that surgery, trauma etc brings out underlying illnesses. Wish I knew I had EM before I was operated. Honestly, never gave the Raynaud's, that I have, much thought.
sunshinentrees said:
I think at least a few autoimmune diseases seem to onset after a trauma of some kind, surgery, pregnancy, major illness, car wreck... Celiac disease, at least, many people can point to something they suspect triggered their disease.
jenl20102010 said:
Hello again Jen. funny thing is I had a full body ultrasound of my veins and they said the same thing about me! Veins of a 20 year old! I too saw a vascular surgeon and he said it wasn't a problem in my larger veins but with my capillaries. He didn't know if the capillaries were the problem on their own or if it had more to do with them receiving the wrong signals from my brain or misinterpreting them. He said unfortunately there arent any doctors that specialize in the capillaries and that very little is known about them in general. He said my best bet would be to try and find some research studies involving capillary studies but I have yet to find one. I have seen a few neurologists and had 3 different nerve conduction studies. My first one was done because I was having daily numbness in my hands and arms. This one indicated carple tunnel in both my arms even though I had no reason for this. They said wear wrist braces on my arms when I slept. They didn't do my feet at the time. This same doctor dismissed all of my other neurological symptoms such as the EM strange smells and tastes as well as weird water droplet sensations in various parts of my body. He actually said " that's just too much" and didn't feel I needed forger tsets or treatments. I wasn't a big fan of him so I booked an appointment with a different one. By the time a got to see her 4 months later all of these symptoms were gone except the EM which was much more mild. I went anyway because the first appointment always takes longer to get and I have had these symptoms come and go before. She did the nerve conduction study on my hands and feet while I wasn't symptomatic and they all came back normal. I asked could the neuropathy be intermittent as mine comes and goes and she said it was impossible and the previous doctor obviously messed up on my last nethe conduction study. She said I have nothing wrong with me and sent me on my way. Sure enough my symptoms came back which brought me to my 3rd neurologist. Same study on hands and feet along with autonomic testing. These results showed nothing in my hands possible small fiber neuropathy in my feet and my autonomic testing showed all normal except I want sweating. She confirmed there is no such thing as intermittent neuropathy which is a problem with the nerves themselves but this could be the result of the nerves intermittently receiving the wrong signals or not receiving them at all. She said unfortunately this was beyond her scope of knowledge and I was better off seeming help from someone else. I know long story long but I wanted you to know that just because your tests results are normal which a great number of people here have doesn't mean there isn't anything wrong is just beyond the scope of knowledge most doctors have. A great many doctors unfortunately think if they can't see something in tests or they don't know what is wrong there is nothing wrong except your crazy!!!!!! Almost any doctor can treat this from neuro, pain, rheumatology, dermatologists, or general practioner. It's just difficult finding one worth knowledge of this or at the very least one that is willing to learn about it. That's where I am at. I found a doctor that agrees this is EM but she doesn't know how to treat it. She helps by reading the research papers I bring in regarding various treatments and if she feels is worth a shot she prescribes me that treatment. We are still in the process of finding one that will help unfortunately but at least she is still trying. I hope you get some help soon Jen. Take care.
Hi Alina,Is it a circulation problem? I saw a vascular surgeon before I was diagnosed with EM, his words after doing numerous tests, doppler etc were " You have the circulation of an 18 year old." lol But he said he suspected nerve damage from my operation and to go to a neurologist. Hence many doctors afterwards and I feel like I'm getting bounced back and forth, the neuro said its another type of pain syndrome involving blood vessels and inflammation, but he does not treat this either because all my tests coming back normal, no nerve damage. Who actually treats this? NYU in New York City does not. I am waiting to see if blood test my pain management doctor has ordered will be approved from insurance. So still feeling in limbo.
Alina Delp said:Hi Jen . I know we spoke before but just wanted to come in here as well. I didn't have Raynauds's at first but ever so mild it wasn't a problem EM in hand's but didn't know. Right after a surgery my EM came full force and all over my body. A couple of months later the Raynauds's showed up and a pretty bad case of it including pernio in my feet and Levi do reticularis all over my body ( like Raynsud's , pernio , EM caused by a circulation problem).
Hi Alina,
I am beginning to realize that we have to be our own advocates with this. I am awaiting to hear back from my pain management doctor as he is naturally on vacation this week (UGH) But I am also going to try to get an appt. with one of the dermatologists I have found on this site. I really feel like I have been thrown from one doctor to the next because nobody wants to deal with this. Having been diagnosed with a rare illness is scarey not finding a doctor who wants to take care of you is beyond frightening to me.
Alina Delp said:
jenl20102010 said:Hello again Jen.
Hi Alina,Is it a circulation problem? I saw a vascular surgeon before I was diagnosed with EM, his words after doing numerous tests, doppler etc were " You have the circulation of an 18 year old." lol But he said he suspected nerve damage from my operation and to go to a neurologist. Hence many doctors afterwards and I feel like I'm getting bounced back and forth, the neuro said its another type of pain syndrome involving blood vessels and inflammation, but he does not treat this either because all my tests coming back normal, no nerve damage. Who actually treats this? NYU in New York City does not. I am waiting to see if blood test my pain management doctor has ordered will be approved from insurance. So still feeling in limbo.
Alina Delp said:Hi Jen . I know we spoke before but just wanted to come in here as well. I didn't have Raynauds's at first but ever so mild it wasn't a problem EM in hand's but didn't know. Right after a surgery my EM came full force and all over my body. A couple of months later the Raynauds's showed up and a pretty bad case of it including pernio in my feet and Levi do reticularis all over my body ( like Raynsud's , pernio , EM caused by a circulation problem).
funny thing is I had a full body ultrasound of my veins and they said the same thing about me! Veins of a 20 year old!
I too saw a vascular surgeon and he said it wasn't a problem in my larger veins but with my capillaries. He didn't know if the capillaries were the problem on their own or if it had more to do with them receiving the wrong signals from my brain or misinterpreting them. He said unfortunately there arent any doctors that specialize in the capillaries and that very little is known about them in general. He said my best bet would be to try and find some research studies involving capillary studies but I have yet to find one.
I have seen a few neurologists and had 3 different nerve conduction studies. My first one was done because I was having daily numbness in my hands and arms. This one indicated carple tunnel in both my arms even though I had no reason for this. They said wear wrist braces on my arms when I slept. They didn't do my feet at the time. This same doctor dismissed all of my other neurological symptoms such as the EM strange smells and tastes as well as weird water droplet sensations in various parts of my body. He actually said " that's just too much" and didn't feel I needed forger tsets or treatments.
I wasn't a big fan of him so I booked an appointment with a different one. By the time a got to see her 4 months later all of these symptoms were gone except the EM which was much more mild. I went anyway because the first appointment always takes longer to get and I have had these symptoms come and go before.
She did the nerve conduction study on my hands and feet while I wasn't symptomatic and they all came back normal. I asked could the neuropathy be intermittent as mine comes and goes and she said it was impossible and the previous doctor obviously messed up on my last nethe conduction study. She said I have nothing wrong with me and sent me on my way.
Sure enough my symptoms came back which brought me to my 3rd neurologist.
Same study on hands and feet along with autonomic testing. These results showed nothing in my hands possible small fiber neuropathy in my feet and my autonomic testing showed all normal except I want sweating. She confirmed there is no such thing as intermittent neuropathy which is a problem with the nerves themselves but this could be the result of the nerves intermittently receiving the wrong signals or not receiving them at all. She said unfortunately this was beyond her scope of knowledge and I was better off seeming help from someone else.
I know long story long but I wanted you to know that just because your tests results are normal which a great number of people here have doesn't mean there isn't anything wrong
is just beyond the scope of knowledge most doctors have. A great many doctors unfortunately think if they can't see something in tests or they don't know what is wrong there is nothing wrong except your crazy!!!!!!
Almost any doctor can treat this from neuro, pain, rheumatology, dermatologists, or general practioner. It's just difficult finding one worth knowledge of this or at the very least one that is willing to learn about it. That's where I am at. I found a doctor that agrees this is EM but she doesn't know how to treat it. She helps by reading the research papers I bring in regarding various treatments and if she feels is worth a shot she prescribes me that treatment. We are still in the process of finding one that will help unfortunately but at least she is still trying.
I hope you get some help soon Jen.
Take care.
Alina and Jen,
When yall say the docs said yall had circulation of a 20 yr old, what exactly do you mean by that? Like low blood pressure? Pulse? Just wondering! Thanks 
jenl20102010 said:
I am beginning to realize that we have to be our own advocates with this.
Yes. Yes. Yes. No one knows your body better than you. =)
Hi Audrieann
My doctor was not referring to my blood pressure or pulse. He was referring to the results of the various tests that were done by his office to rule out a blood clot, which is what they originally believed that I had. My symptoms started in my leg and foot.
audrieann111 said:
Alina and Jen,
When yall say the docs said yall had circulation of a 20 yr old, what exactly do you mean by that? Like low blood pressure? Pulse? Just wondering! Thanks :)
Hi audrieann111.
I have actually had 2 blood clots since I’ve stared having health issues but I want to stress this is rare in this group. I posted some time ago asking if others had too and I didn’t get a single response saying they did too. My EM is probably caused by whatever unknown condition also causes me to get blood clots. I am now on blood thinners for life and have not had another DVD while on them.
they ran every test in the book trying to find out why I was having them and they were all negative. They performed an ultra sound of my arms and legs so they could see my veins thinking maybe there was a, problem with narrowing of my veins causing clots. After the test they said there was nothing wrong with them and I had veins of a 20 year old meaning there was little to no narrowing such as those caused by build up from cholesterol Which happens more with aging.
Does that make better sense now?