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...
Hello fellow MCTD sufferers
I am working in a high stressed job (run a team of 25 people with 236 apartment blocks) and I am solely responsible for budgets, finances, etc. and all decisions are made by me. I have to run the department like my own business. I love my work and I thrive on stress, but I realise it is time to take another look. 6 months after I was diagnosed, I took a leave of absence and it took 3 moths to get my drugs right and me feeling better so I went back to work. This was four years ago. My daily meds are: cortisone 10mg, Plasmaquin, celebrex (anti inflammatory),Trepiline (also know as amitriptyline...it is for depression, but I use it as it helps better for pain than depression) 4 tabs a day, Calciferal 1000mg per week, Patocid (to prevent stomach ulcers), 6 pain pills for the MCTD and then easy 6 for the headaches. My neurologist has given me Aspen Trazodone (anti depressant) as they think it will help with my frame of mind as I am exhausted (the more I tell them its part of the disease, the more they tell me to eat more protein in the morns and afternoons, or prescribe pills for my frame of mind because the headaches and exhaustion could be as a result of depression). I must say, I am by good doctors, I just think there isn't enough patients around with MCTD for them to really look into it. They have diagnosed - Lupus - the rashes are getting worse / Sjorgens - my eyes and eye lids are on fire. I cant speak 2 words without having to drink water / RA / Dermatomyositis / Fibromyalgia. I cant climb 5 stairs, my knees and ankles and toes are hurt when I walk. No muscles strength, cant handle people touching my arms, back, ribs and legs...it feels like I am bruised, my memory is a problem - I forget peoples names who I work with, have to make notes on everything, my eyes are giving me a hard time, I cant exercise as I have no strength and if I do (light pilates for 15 min), I pay the price at night, I hardly do anything week-ends otherwise I cant make it through the following week and I am at night, peaceful on the couch. I have not dated in 2 years as I don't think that me passing out on the couch or when we visit friend and it is hard work to go for dinner, it isn't fair to another person, etc etc etc....you all know the drill. Over the past 3.5 years my meds have just increased, I use to go for a Cortisone drip and infiltration (injections into my joints) for 3 days every 6 months, then every 3 months and I have now official given up because it helps for inflammation for maybe 6 weeks if I am lucky and it use to help for the pain and exhaustion. Lately it helps a little for the pain and to pump my body full of cortisone only for it to reduce my pain for 2 weeks, it really isn't worth it. My question to you all....I know stress is very bad for you, but I am not sure if stopping work is the answer. In SA if you are lucky and work for a company who have a pension fund, it sometimes include disability. If you are boarded by your doctors, the fund pays 70% of your salary every month as well as your annual increases. I am on my own, so I cant just stop work as I am responsible to take care of myself. The catch with the boarding....you have to apply every year for the next and I am scared that staying at home for a year will 'fix' me and then they wont board me for another year. I go on holiday because I am exhausted, only to return exhausted. You 'oldies' who have had the disease a long time and have stopped working, please give me advise as I am petrified to stop working, however I know it will improve my quality of life. I am seeing my broker today to start the process (takes about 6-9 mths to get it through), but I still want to hear from you. Sorry the question is so long, but I had to give you an idea of the meds and symptoms I have, for you to give me your honest opinion. Hope to hear from you soon.
I am working in a high stressed job (run a team of 25 people with 236 apartment blocks) and I am solely responsible for budgets, finances, etc. and all decisions are made by me. I have to run the department like my own business. I love my work and I thrive on stress, but I realise it is time to take another look. 6 months after I was diagnosed, I took a leave of absence and it took 3 moths to get my drugs right and me feeling better so I went back to work. This was four years ago. My daily meds are: cortisone 10mg, Plasmaquin, celebrex (anti inflammatory),Trepiline (also know as amitriptyline...it is for depression, but I use it as it helps better for pain than depression) 4 tabs a day, Calciferal 1000mg per week, Patocid (to prevent stomach ulcers), 6 pain pills for the MCTD and then easy 6 for the headaches. My neurologist has given me Aspen Trazodone (anti depressant) as they think it will help with my frame of mind as I am exhausted (the more I tell them its part of the disease, the more they tell me to eat more protein in the morns and afternoons, or prescribe pills for my frame of mind because the headaches and exhaustion could be as a result of depression). I must say, I am by good doctors, I just think there isn't enough patients around with MCTD for them to really look into it. They have diagnosed - Lupus - the rashes are getting worse / Sjorgens - my eyes and eye lids are on fire. I cant speak 2 words without having to drink water / RA / Dermatomyositis / Fibromyalgia. I cant climb 5 stairs, my knees and ankles and toes are hurt when I walk. No muscles strength, cant handle people touching my arms, back, ribs and legs...it feels like I am bruised, my memory is a problem - I forget peoples names who I work with, have to make notes on everything, my eyes are giving me a hard time, I cant exercise as I have no strength and if I do (light pilates for 15 min), I pay the price at night, I hardly do anything week-ends otherwise I cant make it through the following week and I am at night, peaceful on the couch. I have not dated in 2 years as I don't think that me passing out on the couch or when we visit friend and it is hard work to go for dinner, it isn't fair to another person, etc etc etc....you all know the drill. Over the past 3.5 years my meds have just increased, I use to go for a Cortisone drip and infiltration (injections into my joints) for 3 days every 6 months, then every 3 months and I have now official given up because it helps for inflammation for maybe 6 weeks if I am lucky and it use to help for the pain and exhaustion. Lately it helps a little for the pain and to pump my body full of cortisone only for it to reduce my pain for 2 weeks, it really isn't worth it. My question to you all....I know stress is very bad for you, but I am not sure if stopping work is the answer. In SA if you are lucky and work for a company who have a pension fund, it sometimes include disability. If you are boarded by your doctors, the fund pays 70% of your salary every month as well as your annual increases. I am on my own, so I cant just stop work as I am responsible to take care of myself. The catch with the boarding....you have to apply every year for the next and I am scared that staying at home for a year will 'fix' me and then they wont board me for another year. I go on holiday because I am exhausted, only to return exhausted. You 'oldies' who have had the disease a long time and have stopped working, please give me advise as I am petrified to stop working, however I know it will improve my quality of life. I am seeing my broker today to start the process (takes about 6-9 mths to get it through), but I still want to hear from you. Sorry the question is so long, but I had to give you an idea of the meds and symptoms I have, for you to give me your honest opinion. Hope to hear from you soon.
Did you feel better after your 3 months off? It sounds like you have a lot to do at work and a lot of health issues. I am not sure I could work and be that sick. It sounds to me like the disability would be a good thing for you. But remember, it is a huge change and you have to figure out how to make it work. Good luck.
Mary Ann
Thank you for replying. I hope you are feeling a little better. I did feel bette after the 3 months, however by then they had me on a cocktail of meds that worked. Since then the have added and my doctors are at that stage where I think they don't know anymore. There isn't really a MCTD chat group in South Africa. I am a very strong person and don't complain a lot and I think they don't realise how bad it is. But I do think its time to cut out the stress. I have no quality of life. Thank you so much for chatting to me. I felt like I was loosing a limb to even consider stop working. Have a fab day. Noline
The difference between being able to work 50 hours a week and being able to work 25 is a very fine line. At the wrong job, when the symptoms were bad, 45 hours a week was literally killing me; I couldn't have worked 30 hours. However, symptoms decrease a bit, find a better job, and whoa-- I can work 55 hours every now and again, and average over 40.
The smart thing your doctors have done is NOT put you on SSRIs-- Prozac or Paxil or Citalopram or Lexapro-- so that's really good. Trepilene and Trazodone are probably a lot safer for most people, and fortunately, you can go off them without completely baking your synapses once you're through the roughest patch.
One big priority is preserving neurological function, so I would think about easing off those when your psychiatrist and doctor think it's appropriate. They will probably make the brain fog worse, they will definitely make memory worse over time. This is why I stopped drinking alcohol and smoking marijuana-- sure, the MJ helped with the pain, but it was not worth the tradeoff. I need to be able to make good decisions. And man-- being able to find my frickin' car keys? That improved my mood more than any drug, more than geting rid of the pain.
Yes, I forgot a co-workers name just this morning, a guy I work with every day. Sure, parts of my hippocampus and amygdala have taken some kind of a hit. But some days, they're almost normal, and the rest of my prefrontal cortex is pretty damn good. And I remembered the guy's name in about 25 seconds. I can find my glasses in 90 seconds, and it used to take me 15 minutes.
Also, think of what is your most dangerous symptom, and learn which ones are dangerous and which are just a pain in the ass. If you've got lung problems or cardiac issues or erosive joint problems, scleroderma, those have to be treated. But many of the others you can adapt to. If I were dating, I would absolutely go on dates even if I had to take naps. Naps, meditation, and twilight states of consciousness, sort of self-hypnosis, are a big part of coping with this illness. When I go camping, I take naps. When I go to New York, I take naps on my ex-roommates couch all the time. I don't think of this as something about me that's defective, I'm just more dog-like in this respect.
Then again, most of my symptoms now are not dangerous. I've had two blood clots (massive ileofemoral DVT) in the past seven years, one episode of pericarditis as a teenager, and mostly now just have fatigue, headache, bad eye problems, brain fog, joint and muscle pain in the morning and sometimes throughout the day, and serious trouble swallowing. I take blood thinners, two pain pills once a day (in the evening), occasional tylenol during the day, can't take Ibuprofen. I do kind of avoid eating out because of the trouble swallowing, but I make myself eat our with close friends. I work over 40 hours a week and exercise four times a week, though often briefly. I don't find that exercise always makes my symptoms worse-- never understood that. Sometimes it makes them worse, sometimes better, no pattern I can determine.
I'm sort of an anomaly, though-- I'm a man, for one thing, and sometimes (not always) our symptoms are less severe or we have more frequent remission. Also, I've been able to change my career several times. If I were stuck in the same gig I was doing in 2004, I'd definitely be looking at disability or early retirement.
Change, though, is good. MT is right--- new activities are very important. So often, we get caught in the trap of thinking, "Oh, wow, I can't do the things I used to do, this sucks." Well, maybe it sucks and maybe it doesn't. In a weird way, I'm glad I got my first blood clot-- I might never have left that job if I hadn't.
I really appreciate your reply....you are always willing to help, I keep an eye on you :) as you have dealt with MCTD for a long time and you are always willing to share your experience.
Hope all of you have a fabulous week-end.