Discussions By Condition: Muscle conditions

Mixed connective tissue disease

Posted In: Muscle conditions 9 Replies
  • Posted By: Anonymous
  • September 16, 2006
  • 08:26 PM

My daughter has been struggling with mctd for 17 years. She has mood swings, Cronic fatiuge, Pain daily in her joints, Strange skin eruptions and breakouts, She has run the gammit of drug therapy. At 20 years of age she chose not to take anymore drugs. She only take ibuprofen 800mg. three times daily.She is spiraling down, I think she is depressed. Im worried. She refuses to talk to any one about she if feeling. she refuses to go to anymore DRs. I need some help in finding her help. Does anyone have any sugestions? Even though she is 26 now, She is still my little girl and I want to help her.

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  • Tammy, I know you must be very worried about your daughter. My baby turns 30 this year and it is hard to let him take charge of his life. I believe my son has lupus if not MCTD but he hasn't talked to a doctor about his symtoms yet. The other side of the coin is that sometimes we have to let go and ask God to talk to them. I quit talking about his medical issues and now he has an appointment Oct 26. I know it is the hardest thing to do is quit talking about what you are most concerned about. If she has dealt with this for 17 years she knows that the treatment can sometimes cause as much damage as the disease. If she brings it up the best thing to do is maybe mention that they are coming up with new medications everyday. I think the only thing worse than having this disease would be to have a child with it. I only find comfort in GOD, I hope you can too. KATELYN
    Anonymous 42789 Replies
    • September 20, 2006
    • 02:21 PM
    • 0
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  • Tammy - I agree with Katelyn about letting go. IF you've been nagging, your daughter will notice and that might get her thinking. My baby just turned 19 and is a sophomore at Bard College and (as Katelyn also said) the only thing worse than me having MCTD would be if she had (which I hope never happens). Also, just getting her "out", if you live near her, is helpful even if it's just a drive in the country, out to lunch or whatever might cheer her up. I spent too much time lying on the couch being morose and it's not a good thing. Stay strong - Sue
    Anonymous 42789 Replies
    • September 22, 2006
    • 10:52 AM
    • 0
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  • Tammy, Please. Go to http://roadback.org/ and follow the directions. You daughter is young and will respond, I think, to this therapy. There is nothing to lose. Just do it. Mark
    Anonymous 42789 Replies
    • October 21, 2006
    • 01:32 AM
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  • I completely understand how your daughter feels. Read my post called "I have been misdiagnosed twice" and you will know why. My mother also has Scheroderma and Fibromyalgia. I am close to the same age as your daughter, and it sounds like our problems both started around the same age. I know it is very difficult for anyone to deal with a chronic illness, like lupus, RA, fibromyalgia, MS, etc., but it is difficult in a different way for the young ones. Here you are just entering the adult world with you whole future to look forward to, and you start feeling like an 80 year old woman. Your body, mind, spirit, and everything is just giving out on you, and you don't know how you are going to deal with this. You just want to find a doctor who can tell you what is wrong with you so that you can go on with your life and marry the love of your life, have babies, have a carreer, and just do some exciting things before your youth is gone. The problem is that these diseases are hard to diagnose, and even harder to treat. There is no cure, and no two people have the same exact symptoms or test results. It is very understandible that your daughter is ready to give up and go into a type of denial (like if I don't think about it, it will go away). The problem is, that is just a temporary fix. What she needs to know is that there is much research going on about all of these diseases right now, and if you catch them early, you can prevent further damage from occurring and thus greatly increase your quality of life. Most people in her situation get very frustrated because she probably looks healthy and young, and no one believes her when she says that she is hurting or not feeling good. I know that feeling too. I have a mother-in-law who is a hypochondriac and has self diagnosed her having fibromyalgia and osteoarthritis, even though she has gone to doctors who say she just has age related osteoporosis, and that it is very normal for her age. I will talk to her on the phone, and she will say she is having such a bad fibro day and jsut can't get out of the bed. She says that she must hurt more than me because she is 50 and I am 29, so she has a reason to complain. Then, when I go to the doctor or am having a bad day, she thinks the doctors are making up things that aren't really wrong with me, and that I probably am not as sick as I really think. These are times when I just want to choke her, but I would probably get arrested and divorced! I have to learn that noone is ever going to understand the pain and fatigue I am feeling unless they feel it for themselves. It makes you just want to pretend there is nothing wrong with you, and sometimes you even start thinking that maybe you are crazy and making all of this up, but your not. What she needs right now from you the most is your love and support. Check into some local support groups in your area. That can become a lifesaver for some people. Let me know if she would like to talk with me. I would be glad to try and help her out. My daughter has been struggling with mctd for 17 years. She has mood swings, Cronic fatiuge, Pain daily in her joints, Strange skin eruptions and breakouts, She has run the gammit of drug therapy. At 20 years of age she chose not to take anymore drugs. She only take ibuprofen 800mg. three times daily.She is spiraling down, I think she is depressed. Im worried. She refuses to talk to any one about she if feeling. she refuses to go to anymore DRs. I need some help in finding her help. Does anyone have any sugestions? Even though she is 26 now, She is still my little girl and I want to help her.
    jenn38018 7 Replies
    • October 28, 2006
    • 08:01 AM
    • 0
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  • I completely understand how your daughter feels. Read my post called "I have been misdiagnosed twice" and you will know why. My mother also has Scheroderma and Fibromyalgia. I am close to the same age as your daughter, and it sounds like our problems both started around the same age. I know it is very difficult for anyone to deal with a chronic illness, like lupus, RA, fibromyalgia, MS, etc., but it is difficult in a different way for the young ones. Here you are just entering the adult world with you whole future to look forward to, and you start feeling like an 80 year old woman. Your body, mind, spirit, and everything is just giving out on you, and you don't know how you are going to deal with this. You just want to find a doctor who can tell you what is wrong with you so that you can go on with your life and marry the love of your life, have babies, have a carreer, and just do some exciting things before your youth is gone. The problem is that these diseases are hard to diagnose, and even harder to treat. There is no cure, and no two people have the same exact symptoms or test results. It is very understandible that your daughter is ready to give up and go into a type of denial (like if I don't think about it, it will go away). The problem is, that is just a temporary fix. What she needs to know is that there is much research going on about all of these diseases right now, and if you catch them early, you can prevent further damage from occurring and thus greatly increase your quality of life. Most people in her situation get very frustrated because she probably looks healthy and young, and no one believes her when she says that she is hurting or not feeling good. I know that feeling too. I have a mother-in-law who is a hypochondriac and has self diagnosed her having fibromyalgia and osteoarthritis, even though she has gone to doctors who say she just has age related osteoporosis, and that it is very normal for her age. I will talk to her on the phone, and she will say she is having such a bad fibro day and jsut can't get out of the bed. She says that she must hurt more than me because she is 50 and I am 29, so she has a reason to complain. Then, when I go to the doctor or am having a bad day, she thinks the doctors are making up things that aren't really wrong with me, and that I probably am not as sick as I really think. These are times when I just want to choke her, but I would probably get arrested and divorced! I have to learn that noone is ever going to understand the pain and fatigue I am feeling unless they feel it for themselves. It makes you just want to pretend there is nothing wrong with you, and sometimes you even start thinking that maybe you are crazy and making all of this up, but your not. What she needs right now from you the most is your love and support. Check into some local support groups in your area. That can become a lifesaver for some people. Let me know if she would like to talk with me. I would be glad to try and help her out. My daughter has been struggling with mctd for 17 years. She has mood swings, Cronic fatiuge, Pain daily in her joints, Strange skin eruptions and breakouts, She has run the gammit of drug therapy. At 20 years of age she chose not to take anymore drugs. She only take ibuprofen 800mg. three times daily.She is spiraling down, I think she is depressed. Im worried. She refuses to talk to any one about she if feeling. she refuses to go to anymore DRs. I need some help in finding her help. Does anyone have any sugestions? Even though she is 26 now, She is still my little girl and I want to help her.
    jenn38018 7 Replies
    • October 28, 2006
    • 08:02 AM
    • 0
    Flag this Response
  • Hi am New to this site. I was just online searching about this desease cus i was diagnose 6years ago, i wanted to find a support group us this so i'll know am not in this alone and seek adive . Living with MCTD is very hard, i had it when iwas 18 right after i finish high school am now 24 years old. when i first had it, Doctors couldn't diagnose what i have they told me they don't no whats wrong with me, then finally said i have mctd i asked the Doctor if it can be cure, she told me no, on the other hand they don't even no what course this desease but with the help of medicin they can prevent it from getting worse. I had all my plans made up to be a nurse, but i couldn't get anywhere due to this illness. Its a struggle when you have MCTD you always tired, all u want to do is sleep, pain everywhere you don't feel like eating all doing anything, hands swollen and etc. i used to weight 125 i was a very healthy person, but now i weight between 105 to 110 i feel like my whole body image have change. Sometimes you just wish you dead, so u don't have to go through all this pain. Sometimes getting into my car is a problem is just hard. Due to this desease that i have, my parents dont want me to be far from them cus they always worried something is going to happend to me. Am seeing Doctors constantly for checkup, and you got to be on your medicines to keep you going, Eventhough the medicines don't cure the desease, but afterall it help reduce the pain down a little worse can happend if you don't get help. And To all the mothers out there who's daughters and sons have been diagnose with this MCTD please tried to understand them, and give them all the support that you can, leaving with this desease is the worse thing that can happend to anybody and we struggle everyday to live. so please be there for them. And by the grace of God everything will be OK. God is in control
    Anonymous 42789 Replies Flag this Response
  • Tammy- I know exactly how your daughter feels. I am a 20 year old young women and I was diagnosed with rayniods and R.A. at the age of two, at the age of 12 I was diagnosed with scleraderma and the later came MCTD. It has been very hard growing up with this disease because I have always been categorized as "different". I am always getting sick and i am always tired. I have always hated taking meds everyday, when no other kid has had too. When I would go to spend the night at other girls houses, my mom would make my friends mom make me take the meds. Currently I am taking 7 medications, and I too, go through spurts of not taking my meds and not going to the dr's. I just get sick of "knowing" that i am ill, and my body is literly fighting itself....It totally wears me out...So, step back and put yourself in her shoes. She is tired of hearing about her illness, and just needs a break. I know you love her and by reminding her to take her meds or go to the dr is your motherly job, but that too is also tiring. In time, she will feel bad enough and go to the dr, trust me, things will pan out. And like someone else said, you can always turn your thoughts and concerns to God because he will help your child the best he can. I hope your year goes well, and I hope she gets back to remission. - Cheslee from Omaha, NEb
    Anonymous 42789 Replies Flag this Response
  • FIrst of all I know this thread hasnt been used for a while but I googled connective tissue disease and depression and the results were here.Tammy, I know how your daughter feels. Not exactly but nearly the same. For the past few years my tiredness has been getting worse..I went to one specialist and he did tests on me for a year and a half and then when nothing was found out he says to me..Look I know somethings wrong with you but I dont know what it is..come back in a year. I was very disappointed so i went to my gp and he got me in to see an immunlogist who has done so much for me. I still feel crappy but he is on the right track he said that I hve some form of connective tissue disease but there are a few more things..My Ena keeps changing negative to postive. Anyway Im rambling. I am tired all the time and I have been on anti depressants for nearly 2 years and I know thats a short while for a lot of people but I really hate being on them. So i took myself of them and I feel really bad but at least I feel something right. Then I read the words here "Here you are just entering the adult world with you whole future to look forward to, and you start feeling like an 80 year old woman" by jenn38018I know whats that is like. I never had alot of energy as a young one but I really do feel like my life is flying by. what If I never have the chance to live like a normal human. I have just turned 26. and the birthday marked my 3rd birthday in which I havent felt normal....I have lost a lot of friends..infact majority of them. I only have a few that I really care for and I know care for me but its hard because they dont understand fully what you are going through. I feel alone and I dont know what to do. I am tired of being tired. Its really frustrating...Is there ever a light at the end of the tunnel.
    Roshimitzu 1 Replies
    • December 8, 2008
    • 05:54 AM
    • 0
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  • Tammy - I agree with Katelyn about letting go. IF you've been nagging, your daughter will notice and that might get her thinking. My baby just turned 19 and is a sophomore at Bard College and (as Katelyn also said) the only thing worse than me having MCTD would be if she had (which I hope never happens). Also, just getting her "out", if you live near her, is helpful even if it's just a drive in the country, out to lunch or whatever might cheer her up. I spent too much time lying on the couch being morose and it's not a good thing. Stay strong - SueI am interested in your situation. What was your story and your symptoms?
    Anonymous 42789 Replies Flag this Response
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