Hi everyone, I am new to this site, but not new to chronic illness. Two and half years ago, I had a number of triggers in a short period of time that set in motion a series of health issues that took over my body like a runaway train. I had a spinal fusion; a car accident; a revision surgery; black mold exposure; and then fell very, very ill. I was diagnosed with Undifferentiated Connective Tissue Disease, Raynauds, SICCA, Gerd, Failed Back Syndrome, and Radiculopathy. Somewhere along the way, I developed EM, but the doctors kept telling me it was part of my Raynauds. After self-diagnosing, now my Rheumy, a dermatologist, and an Oncologist/Hematologist agree it is EM. One of my rheumatologists is not convinced that I have a connective disease, and when she realized that I have EM, she sent me out looking for another cause to the EM, mainly some kind of blood cancer. The cancer doctor has kicked back over to rheumatology and says the EM is likely coming from a rheumatic disease. So my question to all of you is what type of illness is causing your EM? Thank you for your time and support. Blessings on your day.
Hi laughalittle.
quick note to let you know I too have an undifferentiated connective tissue disorder and will right in more detail in a few hours. I have company coming over but will write more soon.
take care
Thank you Alina.
Hi!
I'm from Sweden and has just been diagnosed. I have diabetes sdean 22 years but never had any problems with it and been good in my values. I have also fibromyalgia. EM broke out after I have been burned at the foot care of hot water even though I told them.
Thank you Lena. How awful for you to have been burned with hot water. You poor dear, that must have been so painful. So it sounds like your EM is connected to diabetes. Thank you for responding. I wish you the best.
I have been told that my EM is associated with SLE Lupus, I have had EM symptoms for almost40 years…
I wish I knew! Could be because of the Raynaud’s.
laughalittle said:
Thank you Lena. How awful for you to have been burned with hot water. You poor dear, that must have been so painful. So it sounds like your EM is connected to diabetes. Thank you for responding. I wish you the best.
Thank you, yes but its so strange beacuse the doctor says that he dont think it is beacuse the diabetics, but maybee i have got it later on even if I waswnt burn wirh tha water.
Thank you Jon and Nel.
Hello again laughalittle.
I’m sorry it took so long to get back to you.
My story is somewhat similar to yours with many different symptoms at first thought to be independent of each other till finally seeing a Rheumatologist that said allthough your blood tests don’t show any specific Rheumatologist disorder this must be a connective tissue disorder because it effects my entire body. All of my symptoms come and go except now the EM that seems here to stay. I have neurological symptoms , gastrointestinal , joint pains , extreme pain and stiffness after rest , rashes , sores on/in nose , mouth , scalp , vaginal and 2 unexplainable blood clots in arm once with leg the second time oh and we must not forget EM , Raynauds’s , pernio and Levi do reticularis. Surely there is more but who can remember it all. These all came on within a year of my first symptom being unexplained severe back pain and DVD in leg that started at the same time. Except for intermittent elevated SED rate that the doctors dismissed saying it could be anything all of my other tests were normal. After a couple of years of being dismissed as crazy and seeing at least 30 different doctors ( no exaggeration it was probably more) I was first diagnosed with EM then shortly after found a Rheumatologist that diagnosed undifferentiated connective tissue disorder.
she won’t / can’t say this is the cause of my EM and there is no way to know for sure. She says it’s possible yet it is also possible that I have 2 separate conditions. I feel they must all be related. How could they not??? They all started within the same year so that would be quite a coincidence.
After being on immune suppressants my other symptoms have gotten better although they still rear up. The only thing that hasn’t seen any improvement is my EM. This is another reason she thinks they may be spate conditions because of my lack of improvement with treatment. I’m still not sold however because what ever happened in my body to start the EM in the first place may have caused irreparable damage and once it’s done is done.
Long story long I think it is my connective tissue disorder but there is really no way to know for sure.
I wish I could of been more help.
I was diagnosed with Multiple Sclerosis and Raynaud's in 1992. Red, hot, burning feet began in 2000 with the EM diagnosis coming in 2008. I'm not sure if or how they are related, but I feel my EM is secondary to my MS.
Thank you Alina and Mike. It's very helpful to hear your stories. I believe mine is related to a connective tissue disease as well. My story has a lot of similarities to Alina's. What has me asking is that my rheumatologist had a big concern when she realized that I have EM - she was worried that I have been misdiagnosed with a connective tissue disease and that perhaps I actually have some type of blood cancer. She said that EM is more common in people with blood/bone marrow diseases. She sent me to a hematologist/oncologist who did a bunch of blood work, and he concluded that my EM is probably related to a connective tissue disease and has sent me to another rheumatologist. I guess the bottom line is that many doctors just don't know much about EM and are doing the best they can to figure it out along with us. It all gets so confusing and overwhelming. Thank you for your feedback.
You hit the nail on the head laughalittle. It just comes down to the doctors just not knowing much of anything about EM and they ate just doing their best to figure things out. I too was sent to hematology checking for blood disorders and some cancer testing all came back normal. The hematologist couldn’t even find any cause for my multiple dvt’s. It’s interesting that write a few but not all of us have normal or inconclusive test results despite being tested with just about every test by most every different specialty doctor there is. …very strange.
I wish I knew if my EM was connected to something else. I acquired it in January of 2000. It started with my hands. Prior to it in 1998 & 1999 I had carpal tunnel surgery. I remember after the surgery my hands would burn & swell if I used them too much. Then it seemed it stopped & got better. But, soon after my hands started my feet started up. My primary doc thought my shoes were too small & were rubbing on my toes! It had actually started on my toes first & very soon after the bottoms of both feet. Then my hands started up again only on the insides. Then my doc ran blood tests for Lupus & RA & blood work was negative. Then a few months later I went to a dermatologist & he knew it was EM. He told me all I could do was make myself comfortable & he was right. Each year it progressed & got worse. Now my feet will burn, swell, get red all the way up to mid calf. My hands burn, swell, get red all over. This year it started on my face & ears. And last winter & this winter I have suffered with Pernio. In fact, I’m battling it as I write. I started seeing a Rheumy in 2012. He said even though it doesn’t show up in my blood work he said he thought I have RA. Tried 4 drugs. All made me ill & now just on an anti-inflammatory. But, get this, I saw him last week & now he says he doesn’t think I have RA but my EM is an auto-immune problem. ??? I have been wanting to see another Rheumy & I think now I will at least to get another opinion. I haven’t done it sooner because it’s about a 90 minute drive because my Rheumy is the only one in town. I have to go over the stateline & to another city to see someone else. Also, my Rheumy has prescribed a patch for pain. I don’t think it will help my EM but having terrible low back pain for over a year so will wear it for that until I get the upcoming blocks in my back. It’s been so helpful being a part of this group! I have learned so much!
Thank you for your reply Miss Patti. I'm sorry to hear that you have been suffering with this for so long with out much help or any clear answers. It does sound like it would be worthwhile for you to see another rheumy. As I have been finding out as well, autoimmune conditions can be so difficult to diagnose. And they don't alway show up in our blood work. It is possible to be sero negative and still have an autoimmune disease. I'm wondering if you have Raynauds as well. I really would encourage you to make the trip and get a second opinion as to what is going on in your body. It sounds like it's probably autoimmune related. It's no fun having chronic illness. Blessings on your health.
Hello Misspatti.
I second laughalitles opinion that it's worth while to get a second opinion. My Rheumatologist tol me as much as 20% of patients with a connective tissue disorder have negative blood results like myself. She says if it looks like a duck and quacks like a duck it is probably a duck. Other doctors don't believe an illness exists unless it shows up in blood work. This is why this condition is so hard to diagnose! There isn't a test for this let alone one that is only 80% accurate as She says the connective tissue disorder testing is.
I feel your pain in the long drive department I saw everyone in my area for help and all of the doctors in my area just thought I was crazy. I now drive over an hour with no traffic if I am lucky but it's worth it if you can find someone that is willing to help you.
I too get horrible low back pain and have found a back brace to be really helpful in minimizing this pain. You can pick one up at any drug store.
I hope you get the help you need soon.
Hi Laughalittle,
My dermatologist is still working with me to confirm whether what im experincing is EM, but it's looking that way.
I have a similar story to Alina actually :)
I have a connective tissue disorder - but mine is Ehlers Danlos Syndrome.
I also have other conditions including Raynauds and Fibromyalgia. I have quite strong livedo riticularis too.
My GP swears I must have some autoimmune issue because I get run down very easily, and get cold like symptoms last a day or two until I rest. I also get mouth ulcers, and occasional sores in nose / mouth / scalp. That said, my bloods (including thyroid, ANA, ESR, CPR and all the more detailed autoimmune bloods) come back fine.
Hi MeowMachine,
I understand the frustration of trying to figure out exactly what is going on when blood work comes back normal and symptoms continue to progress. I too have been diagnosed with fibro and Raynauds, and doctors are looking at connective tissue diseases. I am thinking that my EM comes from a connective tissue disease, but I'm still in the process of working with doctors to figure it out. If it is confirmed that you have EM, it sounds like it's probably related to a connective tissue disease as well. Thank you for responding. As I imagine you are, I'm trying to make sense of all of these crazy symptoms, and connect the dots to how they are all related. I hope you get your EM confirmed soon. Somehow, it gives us peace of mind when we can move from trying to diagnose something, to trying to treat a confirmed diagnosis. It feels that way for me anyway. I wish you well. Blessings.
Hi,
I to developed a host of issues- including EM- after a significant mold exposure. I am a nurse practitioner and couldn’t shake the idea that the mold was contributing. I did a bunch of research and was finally diagnosed with Chronic Inflammatory Response Syndrome (CIRS) due to genetic propensity combined with living in a water damaged building. I am almost without EM symptoms now that my CIRS has been treated. It seems for me that was the game changer. About 25% of the population has the genetic propensity for CIRS, meaning their immune system doesn’t tag and remove mold like it should. The mold circulates in the blood system and bile creating massive inflammation. I greatly improved when I got out of the environment and used prescription binders to remove the biotoxins from my body. I know our stories all vary but this is mine. Hope it is helpful to someone else.
In finding ways forward together,
Lauren S