MCTD (Mixed Connective Tissue Disease)

Posted by EllashaB @ellashab, Oct 3, 2011

Ok, here goes my story….4 Weeks ago I was diagnosed with Mixed Connective Tissue disease…I am normally a busy busy person, I work full time as a police officer, volunteer at my church, work a lot of off duty, and I have Three Boxer Dogs that I show, and I’m married…so I have a lot going on and this has pretty much put a stop on everything…I’m on 30mg of Prednisone, Plaquenil, Imuran, and Amitriptiline (for depression, anxiety), and Nexium twice a day…Some days I’m fine and other days I can’t get out of bed either because I’m so tired or I’m having a flare. I would just like to talk to other people who have this disease and who can relate to me. I feel like I’m losing my mind and body for that matter…..Is it always going to be like this? How do I slow myself down? The concept just seems so alien to me….HELP

@abviolinboy

I don't really know how to start this so I am just going to jump right in. I am a 23-year-old Male who was diagnosed with MCTD when I was about the age of 13. To this day I have been on multiple medications, none of which has shown any sign of helping. My symptoms, for the most part, are swelling and joint pain (Rheumatoid Arthritis) and Chrons disease. When I was younger, I had small amounts of pain and abdominal discomfort. As I have grown older, my chrons symptoms started to disappear almost completely. However, now my arthritis symptoms are starting to come at me harder and harder. I am now unable to work a full-time job and, due to my pain, may have to stop working completely. For being so young, this is an extremely hard thing for me to deal with, and I'm not quite sure how to. On top of that, I have done some research and I know that people with this diagnosis, only about 13% develop into terminal cases. I guess with the worsening of symptoms and the more I feel 'Unwell" I'm starting to get scared that my illness may be progressing in a way that I do not want. I would wish my doctor would give me some advice or some words of encouragement but he has very poor bedside manners. He doesn't say much that makes me feel better, other than the fact that he never seems worried about me (although it comes off as a lack of caring in my opinion). I am sorry if this has come out as word vomit as this is the first time I have really said (written) any of this out loud. I guess I am just looking for some good words of advice or encouragement from people who have been in this situation, and I guess some first-hand knowledge if I truly should be worried, or if I am making a mountain out of a molehill. Anything anyone has to say will be helpful. Thank you for your time.

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I am truly sorry your provider is lacking in empathy. I understand very well and a few yrs back moved to find abetter team of provider. I saw a counselor for a short while where shehelped me process loss of my abilities and aided with breathing exercises .

I have RA, psoriatic arthritis, degenerative disc, new latent tb, sjogrens, etc. So managing can be most difficult.

Please try not to focus on end stsges, I know it's hard. Do you have caring family and friends? From moving I don't know hardly anyone. Our lease is about up so will move again next month. I am trying to looki at it positive in hopes we get to make friends in a better location. My RA is going to get bad since Dr. Took methotrexate away with new meds for tb prevention. My hope is we can find a way for the pain to disappear and lifes journey is more positive. I am here to talk and glad you reached out. julie

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Anyone else having headaches a lot? My shoulders ache and I am having headaches almost every day.

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@abviolinboy

I don't really know how to start this so I am just going to jump right in. I am a 23-year-old Male who was diagnosed with MCTD when I was about the age of 13. To this day I have been on multiple medications, none of which has shown any sign of helping. My symptoms, for the most part, are swelling and joint pain (Rheumatoid Arthritis) and Chrons disease. When I was younger, I had small amounts of pain and abdominal discomfort. As I have grown older, my chrons symptoms started to disappear almost completely. However, now my arthritis symptoms are starting to come at me harder and harder. I am now unable to work a full-time job and, due to my pain, may have to stop working completely. For being so young, this is an extremely hard thing for me to deal with, and I'm not quite sure how to. On top of that, I have done some research and I know that people with this diagnosis, only about 13% develop into terminal cases. I guess with the worsening of symptoms and the more I feel 'Unwell" I'm starting to get scared that my illness may be progressing in a way that I do not want. I would wish my doctor would give me some advice or some words of encouragement but he has very poor bedside manners. He doesn't say much that makes me feel better, other than the fact that he never seems worried about me (although it comes off as a lack of caring in my opinion). I am sorry if this has come out as word vomit as this is the first time I have really said (written) any of this out loud. I guess I am just looking for some good words of advice or encouragement from people who have been in this situation, and I guess some first-hand knowledge if I truly should be worried, or if I am making a mountain out of a molehill. Anything anyone has to say will be helpful. Thank you for your time.

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It can be a scary diagnosis but it is worth the effort to focus on staying healthy. I have co pletely changed my diet and that has helped a lot. I eat organic and have gone gluten free. It has helped with the pain and definitely improved my energy levels. Reducing stress is very important as well. Everyday is a new day and on the low energy days I focus on spoiling myself and being lazy. I also have a family doctor who is very supportive. I did see a naturopathic doctor and learned a lot on reducing inflammation in the body. I did not purchase everything they suggested but I learned a lot. Dr Perlmutter has many articles on line and has written “The Grain Brain” which helped me on my gluten free quest to better health. Keep searching and I hop you find positive support and answers. It’s worth it.

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@imjustmissy

I know everyone has different symptoms at different times. I am not having to much problems with my hands yet. Some soreness and a few of my finger tips has numbness. My main thing is aches and pains in my shoulders. I usually have a headache every day. I have had some days that I felt pretty good but by the end of the day I am exhausted. Ive also had some pain in my legs like I have done major leg exercises. I'm just venting. would like to have more discussion with anyone that wants to chat. It feels like I am a lone wolf in my family. just feel like I can't talk about this because no one knows what I am feeling. ok thanks for reading.

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I would like to chat more to you. I’m Liyana and was diagnosed with mixed connective tissue disease two months ago.

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Liyana I know how hard it is to try to cope when you have no energy. Family and social demands can wear you down. You need to focus on you for awhile. I found that resting and balance are the best way for me to get thru my days. Eating healthy has been the biggest help for me too. I can not emphasis enough the importance of setting up boundaries in your life. This means learning to say no is important. Family and friends need to learn to understand that there are going to be days when you just can’t get your head off the pillow. Listen to your body. Eat healthy, rest lots, reduce that stress and hopefully you will have better days. It’s raking me many years to figure this out but it’s worth the effort. Good luck.

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@wottone

Liyana I know how hard it is to try to cope when you have no energy. Family and social demands can wear you down. You need to focus on you for awhile. I found that resting and balance are the best way for me to get thru my days. Eating healthy has been the biggest help for me too. I can not emphasis enough the importance of setting up boundaries in your life. This means learning to say no is important. Family and friends need to learn to understand that there are going to be days when you just can’t get your head off the pillow. Listen to your body. Eat healthy, rest lots, reduce that stress and hopefully you will have better days. It’s raking me many years to figure this out but it’s worth the effort. Good luck.

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Thank you for your advice. I have always eaten healthy.,it’s the slowing down part that gets me not being able to do thing with my little boys. And I do love them sooo much and more. But I do always care about others more then myself. And that needs to stop for a while

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@liyana

Thank you for your advice. I have always eaten healthy.,it’s the slowing down part that gets me not being able to do thing with my little boys. And I do love them sooo much and more. But I do always care about others more then myself. And that needs to stop for a while

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Take one day at a time. Rest. Rest. Rest. You are on a journey that requires you to take care of you first. Educate those around you about this disease. The more they understand the easier it will be for them to support you. It took me over a year to start getting my energy back. Good luck.

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@wottone

Take one day at a time. Rest. Rest. Rest. You are on a journey that requires you to take care of you first. Educate those around you about this disease. The more they understand the easier it will be for them to support you. It took me over a year to start getting my energy back. Good luck.

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Thank you for advice. Are you on treatment for it.

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I am trying diet and exercise as I can, but doing hormone replacement therapy with Sustanon (testosterone), prednisone, HGH and HCG.

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@seanlroop

I am trying diet and exercise as I can, but doing hormone replacement therapy with Sustanon (testosterone), prednisone, HGH and HCG.

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What would be a good diet for this and exercise?

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@liyana

Thank you for advice. Are you on treatment for it.

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I go to a naturopathic doctor. I take probiotics and multi vitamins and iron and B 12 because I have a motility/esophagus issue and don’t absorb the nutrients. I am gluten free. When I’m really tired I rest as much as I can. Trying to avoid the prescription drugs as I also have a very sensitive stomach and don’t tolerate many drugs.

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@jolynn60

IBS, TMJ, Ringing ears, Sleep Apnea, Anemia, Arthritis, Mild bone loss and now Narcolepsy! Don't know where to turn. This has been going on for years but recently seems to be getting much worse. I fall asleep driving to work and sometimes coming home. Instead of going somewhere on my lunch hour I take a nap on my desk. As soon as I get home I ready for bed. Tonight I'm fighting to stay awake to post this in hopes of finding someone who might be able to point me in the right direction. I'm taking Nuvigle to stay awake and ambien to stay asleep at night. Also use a cpap machine. My neurologist has ordered another sleep study to confirm his diagnosis of Narcolepsy. Oh and of course my short term memory is out the door. I've missed so much work I'm suprised I still have a job. Can't stay awake any longer. Hope someone can relate. Desperate for answers.

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I have exactly the same symptoms. I have been off work since November 11, 2017. This comes from a guy that missed 10 days of work in 29 years. Mayo calls it central sensitization syndrome. What we have found is that it is related to adrenal fatigue and at some certain point it pushes it so far that it turns into Addison’s where are your adrenal gland is not secreting any cortisol at all. I have tried antivirals I have tried antibiotics I have tried antifungal’s been through 11 doctors and finally went to Mayo. I have a nurse that has been predicting this since the beginning that it was adrenal fatigue syndrome. So now I’m on prednisone and getting ready to do a regime of testosterone while seeing my local Endocrinologist. He is basically giving me a go ahead for this. Initially the prednisone was too low so I didn’t feel the full effects. Then I was doing it twice a day with more and felt better, but still not fully awake. I had been sleeping 2 to 3 days at a time and the time that I was awake was almost negligible because I wasn’t in any frame of mind to be doing anything. You start getting a feeling of worthlessness which just makes you depressed and drives this thing because it is a fight or flight type response that your body has which needs cortisolso you’re caught in a Catch-22. Thankfully I started taking it three times a day for 120 mg total 4040 and 40. This seems to do the trick or at least us far it has. The type of test tossed around that I’m going to be doing is not the cypionate that would normally be prescribed but rather such an on which is five different types of testosterone that are androgenic. At this point since 11 doctors of failed me and basically mayo has told me that I’m going to be very limited in what I can do and my entire life is going to be turned Upside down just to deal, that I really do not care what anyone thinks about this if it works well. Am I going to shorten up my life by taking prednisone every day at 120 mg almost certainly. However, I had no semblance of a normal life without it. The lack of testosterone will accompany it because it’s also secreted by the adrenal gland. I am not a doctor so I’m not giving you medical advice I’m just telling you what I’m doing and what has worked for me when nothing else has. Go have your cortisol level drawn and have the ACTH test That stress is your system to make your adrenal gland secrete cortisol. Mine actually did do it but it made me so sick and bloated for about six hours after the test that something was wrong. When I went back and looked at the lab work I had

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