1. < Autoimmune Diseases

How do you cope with Mixed Connective Tissue Disease (MCTD)?

Posted by Cindi A @cindia1, Feb 5, 2013

Would someone else please join this discussion and let me know how you cope with Mixed Connective Tissue Disease? How can you explain it to your family and friends when they just do not understand? How can I explain it to my doctors? Myself?

I am always tired. Extremely tired. Weak. Do not feel well.....ever. Then at various times, I have problems or flares with several different issues. I always seem to struggle with the neuropathy in my feet and or the raynauds or just swelling and pain. The GI problems are endless. Though they have talked about someday I may have to have a feeding tube, I have always fought that. But with this dismotility and Barretts, some days I actually think just do it and get it over with. I am tired of the pain and wondering what to eat, what I CAN eat.

My skin hurts. My joints hurt. And I feel like I am losing my mind some days. I hate when I feel all whiny and negative. That is not me but darn it all, I hate these illnesses.

The doctors all say to join a support group. Where and which one? Lupus? Scleroderma? Raynauds? Sjogrens? I am at a loss so turned to this site.

Any advice would be helpful. Or just knowing there is someone else out there going through the same thing and understands!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

jholland | @jholland | Apr 24, 2023
In reply to @johnbishop "There is another organization in the UK that lists current and completed research information if you..." + (show)
@johnbishop

There is another organization in the UK that lists current and completed research information if you haven't also seen it - https://www.ehlers-danlos.org/research/current/.

Jump to this post

Thank you

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 24, 2023
In reply to @jholland "Yes, many times. Lots of stuff but not all useful. Very disappointed to find a surgeon..." + (show)
@jholland

Yes, many times. Lots of stuff but not all useful. Very disappointed to find a surgeon recommended that I Saw who new nothing about EDS. Not a secure feeling. Tried to find research groups in Northern Europe where EDS originates but nothing. Former Ortho surgeon went to conferences in Germany, Netherlands, etc to present THP and EDS but I cannot find much. My EDS doesn’t lay down Ça to secure implant do O have a super long one infused with Ça which seems to work. Surgeon passed away and mediocrity stepped in.

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@jholland You’re right, not many doctors know about autoimmune diseases. Your best choice is a rheumatologist at a major medical center.
Have you ever seen a rheumatologist?

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jholland | @jholland | Apr 24, 2023

Thank you! Willlook it up

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tabathab | @tabathab | Aug 6, 2023

I had an ectopic pregnancy in 2012 and required an emergency surgery. In 2020 I had a right hip replacement at 30 years old because I was told my right hip was that of a 55-year-old. And then had a hysterectomy due to endometriosis and fibroids in 2022.

Now fast forward, I started having pain in my left hip in Dec 2022 and my orthopedic surgeon was suspicious of an autoimmune disease. That was when after months of blood work and doctor's appointments I was just diagnosed with mixed connected tissue disease and polyarthritis. I also have degenerative Bone and Joint Disease in both of my hands and feet along with osteopenia in my lumbar which is a step below osteoporosis.

I just turned 34 in June and although I am relieved to finally have a diagnosis, it is still so overwhelming. I am sort of happy that now I can understand why I needed all of these surgeries and why all of these things happened, it is because of MCTD, but it doesn't make the diagnosis any easier. I suffer from extreme fatigue, feeling unwell, and severe pain in my hands, feet, my left hip that I now need a hip replacement for because of a full labral tear which was not from any sort of injury along with CAM impingement and osteoarthritis...

The doctor believes it is because of MCTD... all of this is so overwhelming for my family and I but reading this story really resonated with me. And as sad as it is, it's nice to know that I'm not alone, but this diagnosis is terrifying. I have a family to take care of, and I am so afraid that one day I'm not going to be able to do the things I can do now for them... This has been an emotional roller coaster to say the least...

REPLY
2 replies
erikab | @erikab | Aug 6, 2023
In reply to @tabathab "I had an ectopic pregnancy in 2012 and required an emergency surgery. In 2020 I had..." + (show)
@tabathab

I had an ectopic pregnancy in 2012 and required an emergency surgery. In 2020 I had a right hip replacement at 30 years old because I was told my right hip was that of a 55-year-old. And then had a hysterectomy due to endometriosis and fibroids in 2022.

Now fast forward, I started having pain in my left hip in Dec 2022 and my orthopedic surgeon was suspicious of an autoimmune disease. That was when after months of blood work and doctor's appointments I was just diagnosed with mixed connected tissue disease and polyarthritis. I also have degenerative Bone and Joint Disease in both of my hands and feet along with osteopenia in my lumbar which is a step below osteoporosis.

I just turned 34 in June and although I am relieved to finally have a diagnosis, it is still so overwhelming. I am sort of happy that now I can understand why I needed all of these surgeries and why all of these things happened, it is because of MCTD, but it doesn't make the diagnosis any easier. I suffer from extreme fatigue, feeling unwell, and severe pain in my hands, feet, my left hip that I now need a hip replacement for because of a full labral tear which was not from any sort of injury along with CAM impingement and osteoarthritis...

The doctor believes it is because of MCTD... all of this is so overwhelming for my family and I but reading this story really resonated with me. And as sad as it is, it's nice to know that I'm not alone, but this diagnosis is terrifying. I have a family to take care of, and I am so afraid that one day I'm not going to be able to do the things I can do now for them... This has been an emotional roller coaster to say the least...

Jump to this post

@tabathab
Hello~ Happy belated birthday! You've been through so much. It's easy to see why you're on an emotional roller coaster. I hope that as you get treatment for the underlying cause of everything you're going through that things get better. They have for me. Although I wish I didn't need so many meds (hydroxychloroquine, methotrexate, and Orencia for the MCTD, plus duloxetine and bupropion for depression, which I've had my whole adult life), my quality of life is really good. The fatigue is the worst part, but I also have ADHD and take Adderall for it, which helps with the fatigue. Voltaren gel also helps the joints that don't want to respond to the drugs.
Staying in the present as much as possible and looking for new things to be grateful for every day has helped me manage my anxiety.
It may take some time to find the cocktail of meds and self care that works for you, but I believe you can find it and hope you do too.
If you need someone to listen, please reach out to me. I'm not a counselor or a doctor, but I'm happy to listen.
With care, Erika

REPLY
1 reply
suecutuli | @suecutuli | Aug 6, 2023

Hello! I understand. Just this morning I was wondering how long I can just fake it? Forever is the answer I keep getting. No one can understand how weird all my pain is and that the doctors don’t know what to do with me . I just saw an Endo and now more tests. But I’m taking a break from all my Pt visits as I was going a lot. They love me and help me but don’t know what to do with me either.
I know there are tons of us out there but the fact that the damn professionals don’t have a clue is very disappointing. Still I feel like I must keep searching bc I fear my Daughter is in the Same boat! I know for me knowing others are suffering does not make me happy, but does make me feel not so alone. Good
Luck- keep fighting! I mean the alternative is certainly worse.

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 6, 2023
In reply to @tabathab "I had an ectopic pregnancy in 2012 and required an emergency surgery. In 2020 I had..." + (show)
@tabathab

I had an ectopic pregnancy in 2012 and required an emergency surgery. In 2020 I had a right hip replacement at 30 years old because I was told my right hip was that of a 55-year-old. And then had a hysterectomy due to endometriosis and fibroids in 2022.

Now fast forward, I started having pain in my left hip in Dec 2022 and my orthopedic surgeon was suspicious of an autoimmune disease. That was when after months of blood work and doctor's appointments I was just diagnosed with mixed connected tissue disease and polyarthritis. I also have degenerative Bone and Joint Disease in both of my hands and feet along with osteopenia in my lumbar which is a step below osteoporosis.

I just turned 34 in June and although I am relieved to finally have a diagnosis, it is still so overwhelming. I am sort of happy that now I can understand why I needed all of these surgeries and why all of these things happened, it is because of MCTD, but it doesn't make the diagnosis any easier. I suffer from extreme fatigue, feeling unwell, and severe pain in my hands, feet, my left hip that I now need a hip replacement for because of a full labral tear which was not from any sort of injury along with CAM impingement and osteoarthritis...

The doctor believes it is because of MCTD... all of this is so overwhelming for my family and I but reading this story really resonated with me. And as sad as it is, it's nice to know that I'm not alone, but this diagnosis is terrifying. I have a family to take care of, and I am so afraid that one day I'm not going to be able to do the things I can do now for them... This has been an emotional roller coaster to say the least...

Jump to this post

Welcome to Mayo Clinic @tabathab . Im really glad that you found us. You have had much to deal with and then come to find out that its caused by an autoimmune disorder. The best thing you can do is to educate yourself. Use the discussions on this forum and start following the Autoimmune Assoc. https://autoimmune.org/resource-center/diagnosis-tips/
Do you have a good rheumatologist? Good ones are well versed in autoimmune diseases. Develop a connection with this doctor so you can be followed through the years.
You will probably have good days and bad days, I think we all do. But, I know you can do this!

REPLY
1 reply
tabathab | @tabathab | Aug 6, 2023
In reply to @becsbuddy "Welcome to Mayo Clinic @tabathab . Im really glad that you found us. You have had..." + (show)
@becsbuddy

Welcome to Mayo Clinic @tabathab . Im really glad that you found us. You have had much to deal with and then come to find out that its caused by an autoimmune disorder. The best thing you can do is to educate yourself. Use the discussions on this forum and start following the Autoimmune Assoc. https://autoimmune.org/resource-center/diagnosis-tips/
Do you have a good rheumatologist? Good ones are well versed in autoimmune diseases. Develop a connection with this doctor so you can be followed through the years.
You will probably have good days and bad days, I think we all do. But, I know you can do this!

Jump to this post

Thank you so much for taking the time to reach out. Yes, I have a wonderful rheumatologist. She is the one who determined my diagnosis after many visits and lots of blood work.

REPLY
tabathab | @tabathab | Aug 6, 2023
In reply to @erikab "@tabathab Hello~ Happy belated birthday! You've been through so much. It's easy to see why you're..." + (show)
@erikab

@tabathab
Hello~ Happy belated birthday! You've been through so much. It's easy to see why you're on an emotional roller coaster. I hope that as you get treatment for the underlying cause of everything you're going through that things get better. They have for me. Although I wish I didn't need so many meds (hydroxychloroquine, methotrexate, and Orencia for the MCTD, plus duloxetine and bupropion for depression, which I've had my whole adult life), my quality of life is really good. The fatigue is the worst part, but I also have ADHD and take Adderall for it, which helps with the fatigue. Voltaren gel also helps the joints that don't want to respond to the drugs.
Staying in the present as much as possible and looking for new things to be grateful for every day has helped me manage my anxiety.
It may take some time to find the cocktail of meds and self care that works for you, but I believe you can find it and hope you do too.
If you need someone to listen, please reach out to me. I'm not a counselor or a doctor, but I'm happy to listen.
With care, Erika

Jump to this post

Thank you! The fatigue is definitely very hard for me. Unfortunately I don't have ADHD so I don't think there is any sort of stimulant I can get to help offset the fatigue 😔

I was given hydroxychloroquine however it made me feel extremely nauseous so I was pulled off of that. I was then given two different types of anti-inflammatories, but if I'm being honest after reading all of the side effects I really don't want to put those drugs in my body... so I push through the pain.. it's rough but, I try to keep my head up..

REPLY
1 reply
tabathab | @tabathab | Aug 6, 2023
In reply to @suecutuli "Hello! I understand. Just this morning I was wondering how long I can just fake it?..." + (show)
@suecutuli

Hello! I understand. Just this morning I was wondering how long I can just fake it? Forever is the answer I keep getting. No one can understand how weird all my pain is and that the doctors don’t know what to do with me . I just saw an Endo and now more tests. But I’m taking a break from all my Pt visits as I was going a lot. They love me and help me but don’t know what to do with me either.
I know there are tons of us out there but the fact that the damn professionals don’t have a clue is very disappointing. Still I feel like I must keep searching bc I fear my Daughter is in the Same boat! I know for me knowing others are suffering does not make me happy, but does make me feel not so alone. Good
Luck- keep fighting! I mean the alternative is certainly worse.

Jump to this post

It is definitely hard when the doctors don't know what to do with you... I can relate in many ways.

I've been given two anti-inflammatory medications to take. However, I am afraid to take them due to all of the side effects. I don't want to make my condition even worse... So instead I push through the pain and the flare ups.

And if I'm being honest, sometimes I push myself too hard because I'm a terrified that one day I can't / won't be able to do the things that I can do now and it is utterly terrifying...

It's a lot for anyone to take in and I completely understand that no it is not a good feeling to know that other people are suffering. But at the same time it is a relief to know that we're not alone. All we can do is keep fighting 💜💜💜

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