MCTD (Mixed Connective Tissue Disease)

I understand what you are all going through, I know its not easy... There are some good suggestions here...It helps to know you are not alone in this!

Impossible to KISS or Keep It Simple Stupid!!
EDS is my demon and has granted me pain after four hip replacements. Shoulders feel like railroad spikes. Replace the the surgeons say but you may not be able to dress yourself after. Oh! I care for three horses (ride a bit. Used to breed, train) have as dog and three cats. A widow. 3do am the only human(?). Life is difficult on pain pills and shots but was worse without them. Electric implants for pain were suggested. Insurance disagreed. Oh well! Heigh ho heigh ho ……..

I have EDS too. Not as badly as you. What anti-inflammatories are you using? I find that if well-sourced, cucurmin, moringa, and high doses of DHA help a great deal with the pain. Transdermal ultrasound vagus nerve stimulation is also a neurological winner. I am also looking into photobiomodulation, which is coming of age: See the division at Mass General Hospital doing this based on significant research by Hamblin. I do not want to be a slave of opiates if I can help it,

Slave to opiates or technology, still a slave. Which allows the greater choice to reset freedom, they both restrict and constrict freedom of motion or slow it down to minimal accomplishment.

Welcome. We have a very nice group of people here. Always ready to share info and anything that we have learned along the way. At one point I was diagnosed with MCTD but have RA Sjogrens and Lupus. I have been on a long list of medications and have had some relief from all of them some of them are enbrel..Orencia methotrexate..all the pills by mouth..and now I’m on Xeljanz for the last almost 5 years. It has been good to me but is wearing off so doc is changing me to RINVOQ. What have I learned: as has already been said: moderation in all things. The days of...forgive me please “balls to the wall” are over forever for me. Unless I enjoy suffering. I don’t. Make the most of good days. But do not over do or in the bed you go. Make a list of priorities. In your case do you want to work or show dogs. I know who wants to make choices??? Anyway that’s just a few tidbits from me I’m here for anything that you need or just to talk. Prayers and please stay close. Diane.

@ellashab
I am sorry that you are going through this! First I want to thank you for being a police officer and keeping us safe, I know it is a very hard and difficult job in this day and age!
I have been diagnosed with undifferentiated connective tissue disease and CIDP, and I understand
not having energy and having difficulty dealing with this. I would recommend that you continue to exercise, eat healthy, and not over do. Two years ago I was very active and had a very stressful career as a nurse anesthetist and I quickly realized I would not be able to continue at the pace I needed to be at for my career. I retired and still have a difficult time keeping up with all the activities that I need to do. It took me awhile but I have learned that I have to slow down and do what I can do, if I need to take at easy one I do! I hope you soon feel better, please keep in touch with the group.
Kim

Diagnosed with MCTD a month ago. Started getting progressively sick both mentally and physically when I contracted Covid in June 2021. Sound familiar to anyone else?

I'm so sorry you are having to deal with this. I had a rough case of Covid last year. It ramped up the inflammation I already had in my body. I am very tuned into my body and I knew there was something different & new going on with me after COVID. I just got a diagnosis of borderline Lupus and I am being treated with Plaquenil and it is helping. I am convinced that Covid brought this on as I never had it before. Also, still battling hypersalivation since Covid. Covid does a lot of crazy things to folks...even if they only have a mild case. Some folks, get over it in a few weeks and are fine....I was not one of those people. Do I believe it could have brought on the MCTD in you...... I certainly do. It is a brutal virus. I think it will take years for the medical field & much research to fully understand what all COVID has done. I hope you get relief soon. Again, I am so sorry you are battlng this. Blessings & Hugs....

Welcome, @starbright. i moved your post to this existing discussion about MCTD.
- MCTD (Mixed Connective Tissue Disease): https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/

I did this so you can read through some of the recent posts and connect easily with other MCTD members like @jirehprovides @paktoledo @rarelybees2889 @margar1 @adlttl123 @kimegraves @yellowdoggirl @boconn89 and others.

Starbright, I can understand the physical challenges undermining your mental health too. What do you find helps?

Thank you. My liver and kidney and neurological symptoms are now being affected. I don’t really see a turn around as the anti-U1-RNP there are only 50,000 cases in the U.S. less that 1.9 percent it’s called a very rare autoimmune disease that overlaps all of the other autoimmune diseases. I am not afraid to die but I will put this out there, I never in 50 years had an abnormal lab and now showing at some point I had a heart attack. I have slowly started making lifestyle changes but untimely have gone downhill since June 2021 upon developing Covid. I have been sick and could now figure out why as it mimics major depressive disorder as well. It got so bad I was hallucinating that I was seeing and hearing demons and really believed it until my doctor ran a bunch of labs and found it was organic in nature. I went temporarily paralyzed from my feet to my neck for 15 minutes last week then the sensations came back. Sustained a concussion from that. Seeing a Rheumatologist Tuesday