MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
I have been dealing with severe shoulder pain in my left shoulder for 20 years. My first episode 20 years ago was so intense I would lay in a fetal position and cry. I ended up having a cortisone shot and it helped. The pain never went away and would vary from dull to intense over many years. Dr.'s would say it is bursitis or tendinitis.
About 5 years after that my hips, knees, back and neck started to ache. I was told the same diagnosis. Over the next 10 years things slowly became worse and I was told there was probably something else going on.
Last year the pain in my shoulder was pretty bad and it was also in my right shoulder. I had a MRI and was told there was nothing wrong with my shoulder. I was given a second cortisone shot which did no good. They took an X-ray of my neck and said I might have something going on with my neck.
I had a stressful year with many deaths in my family. Things started to get out of control. I was having pain everywhere. I had trouble concentrating and with memory. Anxiety increased as well. Then my arms and hands started to throb and go numb and my hands and feet were very swollen.
I decided to see a chiropractor for help thinking it's my neck and back. It seemed to only help a little. I had steroid shots in my neck and things got worse. I was getting very frustrated at this point. I asked for a MRI of my neck and was told there is nothing wrong with my neck also.
By this time I'm at my wits end. I was referred to physical medicine. After examination he told me I had fibromyalgia and thought I also had Lupus. He referred me to a rheumatologist. After blood work and examination I was told I had MCTD. I am kind of in shock, but glad to have a diagnosis after all these years. He started me on Plaquenil twice a day and 200mg of Lyrica. He also added sulfasalazine to take with the Plaquenil. I also take Tramadol for pain, but it doesn't help that much. Some symptoms have gotten better and some not. I also have pain and a bump on my right heel. I had it X-rayed and saw a podiatrist 2 days ago. He then tells me my muscles are seperating from my bones. He taped up my foot, told me to avoid stairs, drink muscle milk and vitimin D supplements. I could have serious injury to my foot if I'm not careful.
I'm feeling really down at this point. This is all new to me and I don't know much about this disease. If anyone has any information they would like to share on the disease, medication recommendations for pain and MCTD or any other information that would be helpful I would greatly appreciate it. Thank you for your time and thank you for listening to me ramble.
Paula
About 5 years after that my hips, knees, back and neck started to ache. I was told the same diagnosis. Over the next 10 years things slowly became worse and I was told there was probably something else going on.
Last year the pain in my shoulder was pretty bad and it was also in my right shoulder. I had a MRI and was told there was nothing wrong with my shoulder. I was given a second cortisone shot which did no good. They took an X-ray of my neck and said I might have something going on with my neck.
I had a stressful year with many deaths in my family. Things started to get out of control. I was having pain everywhere. I had trouble concentrating and with memory. Anxiety increased as well. Then my arms and hands started to throb and go numb and my hands and feet were very swollen.
I decided to see a chiropractor for help thinking it's my neck and back. It seemed to only help a little. I had steroid shots in my neck and things got worse. I was getting very frustrated at this point. I asked for a MRI of my neck and was told there is nothing wrong with my neck also.
By this time I'm at my wits end. I was referred to physical medicine. After examination he told me I had fibromyalgia and thought I also had Lupus. He referred me to a rheumatologist. After blood work and examination I was told I had MCTD. I am kind of in shock, but glad to have a diagnosis after all these years. He started me on Plaquenil twice a day and 200mg of Lyrica. He also added sulfasalazine to take with the Plaquenil. I also take Tramadol for pain, but it doesn't help that much. Some symptoms have gotten better and some not. I also have pain and a bump on my right heel. I had it X-rayed and saw a podiatrist 2 days ago. He then tells me my muscles are seperating from my bones. He taped up my foot, told me to avoid stairs, drink muscle milk and vitimin D supplements. I could have serious injury to my foot if I'm not careful.
I'm feeling really down at this point. This is all new to me and I don't know much about this disease. If anyone has any information they would like to share on the disease, medication recommendations for pain and MCTD or any other information that would be helpful I would greatly appreciate it. Thank you for your time and thank you for listening to me ramble.
Paula
Mary Ann
Thank you for responding. Sounds like you've been through the ringer as well. I'm glad your in the hands of a rheumy now. Hopefully you can get SOME relief. I tested positive for ANA and ENA SSA. My RNP was negative though. And my C-reactive protien was 9.0. I was only on prednisone for a 5 days and it seemed to make my symptoms worse so I stopped. He first started me on plaquenil 2x daily in April and 50 mg of Lyrica. Since then he has increased the Lyrica to 200 mg daily and added sulfasalazine 2 twice daily with the plaquenil. I have to say since he added the sulfa I notice some changes. Slowly feeling better. Plaquenil can take several months to work so try to be patient. My rheumy told me it has the least side effects. He wants to avoid methotexate if we can. Higher doses of Lyrica has also helped me with pain. Fatigue is a problem just like you. I was very active as well and now feel like a 90 year old cripple. I'm only 47 so it's kinda depressing. I just try to make the best of the hand I was dealt and stay positive. Keep me posted on your progress.
Paula
I was thinking I was just getting older. Aches and pains are normal. When things started to get worse and worse I would think to myself if your 47 now what are you going to be like at 57? I'm hopeful my meds will continue to improve my quality of life. I realize now I'll never be the same, but I'm just taking it day by day. Thanks for your input. I hope you are doing well.
Paula
I have learned to live with most of this and to accept a lot of my limitations. I take steroids which I have found to be the answer and the devil I have to pay. But they keep me on my feet and really help the pain at a very low dose. I still and limited by fatigue but have many reasons for that, not all MCTD. People are still surprised that I have MCTD. Someone told me the other day that they thought I was healthy. LOL! Guess I can still fool some of them!
Mary Ann
For pain, frankly, I think the only thing that works is narcotics. I've been on the same dose for about 10 years now (Norco) and at least I can get some work done in the evenings. I've never had issues with tolerance, never needed more and more or anything like that. Of course, I can only take it at night when I'm not driving or working. And I stopped drinking six months ago. I'm sure I am dependent on it, but... who cares?
Knowing what I know now, I would probably have quit booze and reefer sooner. I never smoked a lot of weed, I used very small amounts just a few times a week, and it did help, but I can't be confident that it didn't cause problems, just like MT says about prednisone. (And she's dead-on, as usual, about prednisone.) The brain fog is harder to manage when you're older, though it still clears up pretty good when it does clear up-- thank God. How-- or if--I'll pass my licensing exam, I have no idea.
I have heard a rumor about a type of marijuana called Charlotte's Web. Very high in cannibinoids, which reduce inflammation, but very low in THC. Believe me, if I find it and try it, I will report back, but I probably won't dare risk it before my exam.
As for wondering what it will be like at 47? Hey, I'm 58. Life is very good. The pain and exhaustion bother me sometimes more than others. Some nights, I wake up every hour, and in the mornings, I cry from exhaustion. Some days, I'm scared driving home because of the brain fog.
Here are two things to remember:
* Not many people die from this disease, or at least not that many we've seen here. It sucks, but it's not cancer.
* Remission of months or even years does happen.
* Some people have excellent interepisode recovery. (I am one of them, fortunately)
* A lot of people are able to work part time or even full time and most have good interpersonal relationships.
* You do adapt to chronic pain. I mean, pain still hurts after 40 years. And sometimes it hurts a lot, but... it becomes more like just another weird sensation. The neural pathways just seem to get kind of worn out. You don't focus on it as much. It becomes less distracting.
* The same thing is true of fatigue. Forget everything anyone ever taught you about not taking naps. I find a hybrid of meditation and napping works very well for me-- I hallucinate and everything. No, I do not wake up refreshed, yes, I do wake up feeling worse... for an hour or so. Then, the day may resume somewhat as normal. And without the naps? I'd be totally debilitated.
The most important thing to remember early after diagnosis is simply Contain The Panic. You are allowed to freak out, but it's better if you try to pick and choose the moments when you freak out. Still, I have weeks where my main goal is just managing the fear-- and if I can do that, it's a good week.
Oh, yeah, and you'll probably have all kinds of issues with your family and employers. We've got a lot of threads on that.
We've been here a while. And we'll be here a while.
--Cat
* Th
Your story is very much like mine except I was not ill nearly as long as you. I don't know how you and other dealt with the pain and just overwhelming feelings of exhaustion for so long. I had a high ANA 1:2560 and high RNP...swollen fingers, rash on eyelids, allover joint and muscle pain along with Raynauds...classic MCTD. My provider sent me to every specialist all the while I asked to see Rheum. I have finally seen my Rheumatologist and was put on Prednisone, plaquenil and Amlodipine (for bp and raynauds). I've beenon Prednisone for 2 weeks and I feel MUCH better but I worry very much about side effects from it. I am trying to not overeat and up until recently exercise was nearly impossible. Plaquenil can take 3 months to kick in...I hope it does and I can get off the steroids.
I hope you feel better soon.
Paulalou
I have dermatomyositis since 2012, but have also been told I have MCTD by neurologist. So, not sure which one, or both, but I have had tendonitis of both shoulders really bad. Have had steroid shots also, which help to a certain degree. Also have bursitis of knees, shoulders, I really cannot keep track.
Was told I had asthma for 21 years, now I dont have it,? The only difference is that despite my dx, I remain ana neg. I did show pos. to myositis autoantibody. I am seronegative. Believe it or not, cannot wait for my blood to show markers. Something, anything. I quit work as the fatigue too much to bear. Lost 36 lbs. I have Raynauds, swallowing issues when I flare. This is a great site, have been a stalker for a while, everyone here so helpful.
I'm so glad I found this web site. Everyone is so nice and helpful. I'm trying to find a local face to face support group in the Seattle area, but no luck yet..
Paula