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

@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.

Jump to this post

The rash is the worst. My RA Dr sent me to dermatology clinic. My issue is Everytime they add another Dr, I get thinking about it.

Liked by Liyana Ahamad

Thank you for your info on how things are with you. I just have to set boundaries also for how much I can do. I am trying to do same things I use to and I find myself pushing further than I know should. I am realizing that I can't do all that I use to. Also trying to get that through to my husband is some days a challenge. Have a great week…

Liked by Liyana Ahamad

Hi there, @wottone Love the attitude. Setting boundaries…….great way to describe the process of accepting limitations.

@imjustmissy

Thank you for your info on how things are with you. I just have to set boundaries also for how much I can do. I am trying to do same things I use to and I find myself pushing further than I know should. I am realizing that I can't do all that I use to. Also trying to get that through to my husband is some days a challenge. Have a great week…

Jump to this post

I commented on an earlier post about a point system that alots points to each activity. Ie certain points for getting dressed, cooking a meal, talking on the phone etc. When I reached 12points I’d tell my husband I was done for the day … have fog brain today so hope you can go back in the thread and find the name of the system and where to find it. If not let me know and when I have more energy will find it for you. Be strong. My husband is finally realizing that “ working thru it “ is. To a solution but that rest is !!

Liked by Liyana Ahamad

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.

Hello @abviolinboy,

Welcome! I can only imagine how difficult it must be for such a young person as you, to cope with these symptoms. And, I am so glad you've joined the Connect community.
You may notice that I moved your discussion and combined it with this existing discussion on MCTD. I did this as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Let me introduce you to a few active members talking about MCTD; please meet @kgoodwin9 @reagan1mc @regeanna @jewel8888 @luladavis @jimmorris900 @faithandlove @judeeo @wottone.
And, here is some relevant information about Mayo’s Connective Tissue Disorder Clinic, which diagnoses and coordinates care for people affected with inherited or genetic forms of connective tissue disease: http://mayocl.in/2nMFAuW

@abviolinboy is it possible for you to get a second opinion or perhaps even change your doctor? However qualified a physician may be, if they lack empathy for the patient, I feel it takes so much longer to feel better! Is the Crohn's disease in remission now?

@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.

Jump to this post

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

Liked by Liyana Ahamad

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

@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.

Jump to this post

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.

@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.

Jump to this post

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

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.

@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.

Jump to this post

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

@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

Jump to this post

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.

@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.

Jump to this post

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

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

Liked by Liyana Ahamad

Please login or register to post a reply.