How do you cope with Mixed Connective Tissue Disease?

I was only able to find a Scleraderma group when I started with this and learned a lot about gut health. Hot tea, like chamomile, for after meals, was super advice. However, back then no one mentioned that if the Scleraderma doesn't progress in five to ten years, it probably will not. I was waiting for the other shoe to drop! I spend time on Facebook groups for MCTD, use Dr Jo on you tube for stretches for intermittent joint pain. I have only met a couple more people with MCTD in over 25 years! The most active ones amended their diet to non-processed, low inflammatory foods and have added movement to their lives. (you do not need a personal trainer at the gym; use a PT)

Revert to a low inflammatory diet, hydrate and get back to doing your stretches to relieve painful areas--periodically through the day. Ice/heat, lidocaine patches, magnesium spray, biofreeze can help. Recovery time is important, but intersperse light activity with rest for best results.

Most of the time I use them outdoors and take them with me when I leave home. However when things flare up I end up using them in the house too because sometimes my leg will just buckle.

The low inflammatory foods do make a difference and I’ve been using biofreeze patches when things are flaring. I haven’t tried lidocaine patches yet. I will put them on my list and give them a try too. This present flare up seems to be taking a long time to settle down. It will eventually, definitely an exercise in patience.

Hi, I was diagnosed with MCTD, Raynauds, and primary biliary cholangitis in the same year. Also dx with long Covid, and my primary symptoms are shortness of breath and brain fog. I might also have Sjogren’s. It’s a lot to take in. I have a supportive family, thank god, but I try not to dwell on it much because it will overtake you and easily become your identity which no one wants. I pray, meditate and distract myself with sewing, playing with my dogs, hanging out with my girls. I wish you the best.

I hear and understand your frustrations and I believe you! I’ve been told all my life that I’m a hypochondriac, trying to get attention, or I’m over reacting or it is all in my head! In mid 2021 my old medical team almost killed me! I had to have emergency surgery for a twisted bowel, and my new medical team found out that I have HEDS, Fibromyalgia, POTS, and possibly VEDS. There’s a quote I’d like to share with you. “We look and sound like Horses but we are actually rare Zebras”. Meaning we have these rare invisible syndromes/diseases and we need to keep advocating and fighting for ourselves until we get the right diagnoses and the right medical team that unmistakably believes us and fights for us! Again I understand and believe you ❤️

My experience has told me that few mds know much about syndromes such as EDS which has controlled/contorted my life. There is a lot known but no central compilation of material and that is sad with the internet. So much garbage on-line and so hard to swim through the miscellaneous junk to find anything pertinent. Docs don’t have time nor interest. We must do it ourselves but then stick to making docs help. Hmmmm!

Hi @jholland, Have you seen The Ehlers-Danlos Society website?
--- https://www.ehlers-danlos.com/

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.

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/.