I recently was told that I have “autoimmune overlap syndrome.” This is exactly what it sounds like. Whereas most people have 1 or 2 autoimmune conditions, I, like many other “spoonies” out there, have been dealt a whole slew of them.
Basically, what this is, is when you have one “primary” condition and a few other accompanying or overlapping conditions that are all autoimmune in nature. It also can mean where you have a couple of primary conditions but then “symptoms” here and there from other autoimmune conditions. (My opinion is that you just have a lot of stuff going on, and they just don’t know what else to tell you! 🙂 )
This “disorder” or “syndrome” is so confusing that there isn’t even one standard definition of what it truly is. According to Wikipedia (not the best source, I know) Overlap Syndrome is: “an autoimmune disease of connective tissue in which the patient presents with symptoms of two or more diseases. As much as 25% of all patients with connective tissue disease show signs of an overlap syndrome. Examples of overlap syndromes include MCTD and scleromyositis, but the exact diagnosis depends from which diseases the patient shows symptoms. In overlap syndromes, features of systemic lupus erythematosus (SLE), systemic sclerosis, polymyositis, dermatomyositis,rheumatoid arthritis (RA) and Sjögren’s syndrome are found often.“
According to a document published by the department of health, “The etiologies of all autoimmune connective tissue diseases are unknown and diagnosis has had to depend on patterns of symptoms and signs. The problem is heightened by the tendency for one disease type to merge with another, resulting in a continuous spectrum of clinical features among the rheumatic diseases, with the traditionally accepted entities such as systemic lupus erythematosus (SLE) or systemic sclerosis occupying only part of the continuum with the overlap syndromes lying between. To identify an overlap syndrome it is necessary to identify a constellation of distinctive features which constitute a true syndrome. Historically, this has been achieved in two ways; on the basis of clinical involvement and by the detection of autoantibodies. Raynaud’s phenomenon, sclerodactyly and alveolitis are common features of a number of autoimmune rheumatic diseases and cannot be used on their own to define a syndrome. Other features, such as thickening of the skin proximal to the fingers in scleroderma or the articular erosions in rheumatoid arthritis (RA) are sufficiently disease-specific to suggest that a patient having a combination of both have a true overlap. This may be the basis of the early descriptions of RA/systemic sclerosis overlaps and RA/SLE overlaps or ‘rupus’. Before regarding these as distinctive syndromes it must be remembered that RA is a somewhat common disease and could occur by chance in a patient with systemic sclerosis or SLE. Some studies have highlighted a second consideration; namely that erosive arthritis may occur in SLE and systemic sclerosis, thus suggesting that RA-like features can, in some patients, be a feature of the disease itself.”
As someone who has rheumatoid arthritis, autoimmune iritis, celiac disease, many allergies, a possible form of dermatomyositis, and now possible lupus – maybe drug-induced, maybe the aforementioned, “rupus,” I can attest to the fact that autoimmunity can take over your body.
But why?
The key to figuring out overlap syndrome is figuring out how at least ONE of the 100+ autoimmune conditions out there works. If we can figure out one, then, hopefully, a cure – or at least better solutions – for the others will soon come!
How many of you have multiple autoimmune conditions or have been diagnosed with overlap syndrome? We’d love to hear your stories and how you are positively managing your life! Please share by leaving a comment!
Stay well,
Ashley Boynes
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My little girl has MCTD. She developed JA symptoms very young, Raynauds in 2008, followed by scleroderma features. 2009 was quiet but 2010 brought Dermatomyositis & a diagnosis of MCTD. IF I am right, looking at labwork from 2007 before she was diagnosed or treated for JA, her muscle enzymes were elevated, so I suspect that was brewing for a while. She developed full-blown Dermatomysitis last October. She had the classic heliotrope rash, the paupules on the hands, the red knees & elbows combined with a fever & severe weakness. Too tired to roll over in bed or brush her hair, she was crawling to the bathroom. I think that her myositis features came with her MCTD, but I suspect the DM is also a seperate disease. Ashley, I pray you don’t have DM. From a mommy’s standpoint, (Em is now 9) DM is even worse than RA. And the treatment is hell. God bless you!
Thank you for sharing this information I got diagnosed last year with this disease and Ive been trying to find out more about it many people feel that I’m making it up but If they were to read your page they would understand a lot more. Thank you so much for putting it out there maybe I can direct more people to your site so they will understand this painful disease. keep up the great work and research.
Hi Ashley!
Much like you, I was diagnosed with overlap syndrome about 4 months ago. I am nearly 17 years old and haven’t fully understood how to cope with this newfound disease. How do you cope with this? I have symptoms of RA, lupus and scleroderma. I am taking lots of medications for my disease…what are you taking?
Thanks!
Emma
I just found out today after years of may questions and tons for confusion that I have overlap syndrome. I’ve been diagnosed with having Polymyositis, Dermatomyositis, Raynauds and skin thickening. (although the skin thickening I also just learned today.) I’ve been battling most of these conditions since I was 17yrs and I’m turning 27 this year. I must say its been a long road for me, I’ve been on many medications and tried LOTS of experimental treatments with no luck as of late. However, despite all my trials I’ve got a great support system in my family and boyfriend. They are the ones who get me through the bad times and I don’t know what I’d do without them. I hope that some of the new meds I was put on today will have a positive outcome on my many numerous issue.
Take care everyone and good luck!
Melinda
hey,
so cool to hear from other people going through similar things. I’ve had JA for 3 years and for around 2,5 months I’ve had overlap sydrom (or at least it’s been very noticable for the past few months). It has spread to my muscles (don’t quite know if there’s a extra name for that) and my muscle enzyms have also been really high for the past few months and my allergies have been getting worse since febuary.
I love your comment “My opinion is that you just have a lot of stuff going on, and they just don’t know what else to tell you! :)” sometimes you really do get that feeling when you go from doctor to doctor and no one has a really good answer.
I hope you can find the right medication that will help you feel better.
God bless,
Susan
I have overlap syndrome too! I have been diagnosed with dermatomyositis (which is the worst pain I’ve ever felt, and yes I have had babies), RA, Raynauds, Sjogrens with skin thickening. To top it all of the autoimmune issues caused me to have pulmonary hypertension and ILD. I was first diagnosed at 34 years old (2 years ago) after always being a very healthy person, it just came out of nowhere. I went to several doctors before I could find 1 to really give me an idea of what was going on and get me feeling better. Good luck to all of you!
Diagnosed with MCTD few years ago. I had never been diagnosed with the initial disease. At age 51, I think back when the symptoms first started in my 20′ and how I went from doctor to doctor without finding any thing The doctors told me over and over again I was making up the illness for attention, or have a mental illness causing me to seek attention for illness, I’m a bored housewife, I must be addicted to the attention doctors gave or doctor shopping for drugs. The sad thing Is I started to believe them, what else could it be. Not only did I waste alot of money on dr visits, I spent alot on money on surgeries. Still doctors didn’t want to admit I could have a health problem. . just a coincidence that the major surgeries hit at onece.
Frankley, I lost all faith and respect for the medical community as a whole. over 30 years later, a positive test result for MCTD and of cours the pain I’ve always had brings me where I am today.
If I had known I had a disease many things would be different. First I would hope I would get the medical treatment needed. Things you will not have to deal with because you’ve been correctly diagnosed. I definatley wouldnt have been so hard on my self about feeling pain, or exhausted or spent so much time with mental health professionals trying to wash the pretend pain out of my body . I wouldn’t have employers harrass and humiliate me because I’m exhausted, and not workikng fast enough. Also my marriage of 22 years may have ended differently if I knew. Some of the major problems in our marriage had to do with my “pretend” sickness. He threw it in my face all the time I was making it up.
I can’t do anything about the past, but I do have today. What I can do today is learn as much information on this disease. Today, I’m can see I’m not a bad person because I hurt so bad and the drs don’t see it,. Don’t have a panic attack when seeing a doctor because they have proof something wrong and most of all the pain is real. If a doctor reads this I have one request. If you don’t have the experience to help a patient like me, don’ t blame your patient and accuse them of anything. Perhaps science has reached the point where the disease is easily diagnosed. This message is not meant to be a downer, just want anyone who finds them self in my situation not to think or a minute your faking. Sandy
Wow Sandy, what you just wrote could have described my experiences perfectly. It took me so many years to finally find a Dr who believes I’m in pain and helps me. I hope you have found a good dr. God bless! Teresa
Hi all,
I have a great doctor now, he literally wrote the book about lupus….he’s in Los Angeles….Dr. Daniel Wallace, he confirmed that I have MCTD. If you can’t get to him, ask your doctor to at least check your ANA, that’s what I did and that’s when things started to make sense and then I knew for sure that I wasn’t imagining things.
Goof luck to all,
Priscilla
OK, I have a suggestion for you all. Have your doctor check for Selective IgM Deficiency, aka SigMD, a supposedly rare condition that I believe is much more common in the general population than currently documented. My mother had “overlap” disease way back in the 70s (Sjogrens, lupus, RA). Eventually they diagnosed her with celiac disease as well, which was believed to be quite rare at the time (we all know today that isn’t true). I am in my 50s now and was recently diagnosed with SigMD because of recurrent respiratory infections. Now my mpther’s illness finally makes sense. They didn’t know about SigMD then.
What to do for all this? First, get off gluten! I know you are sick of hearing about gluten but there really is a strong connection between gluten and all this autoimmune stuff. Worth a try (and I mean a REAL tr for at least a couple of months, not just a day or two). It’s easy these days to be gluten free, given all the publicity it’s been getting and all the products out there.
Good luck–I’m happy to provide details if you think they might help you.
Hi my name is Barry and I have Rupus ( Sle and RA ) I was told that I don’t have all of one but I have them both as one strand. I was told eventually I will get every arthritis know to man. So far I haven’t found any medicine that will work. I am currently trying Benlista and prednisone. I am on my 5th treatment but no changes yet. I am starting to feel like I need to give up and just let my body shut down. I get up everyday and go to work. I work any where from 40 to 80 hrs a week. It is hard there are days when I can barley get around and it feels like my legs are crushing my chest is about to explode. But I know I have to keep moving if I don’t my body will get week and I will die so I keep pushing forward. I can’t give up hope that one day I will get better.
Hello! My name is Rita. I have alopecia, primary sclerosing cholangitis, and now interstitial cystitis. Crazy right!? The thing is that I’m 19, I’ve been dealing with alopecia since I was around 4, and the other two diseases have come around in the past 6 months. I’m just wondering if anyone out there has had any similar diseases and/or have had them diagnosed so close together! Back in the winter of 2012, I started feeling excruiating pains for DAYS. So I started by going to the ER, they found ‘nothing’ in my CT scan, I think they were just trying to rule out appendicitis to get me out of there. I finally saw a GI a few weeks later, had a HIDA scan done, and BAM my gallbladder was only functioning around 8%. Got that taken out in December of 2012, but I kept feeling pain, I kinda just put it off to post-op pain. 9 months later, same pain I felt almost a year ago started coming back. I went to go see another GI, and found the PSC through a MRCP. Recently I started having ‘female troubles’ around that time of the month so I informed my OBGYN and he suggested getting a hysteroscopy, D&C, and a cystoscopy. My uterus was fine, but my bladder was severely inflamed! Just had this done today. So I guess here goes another round of craziness of treatments and never ending rounds of bloodwork.
I wish you guys all luck!