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MCTD, Fibromyalgia, Reynauds

Autoimmune Diseases | Last Active: Sep 15, 2023 | Replies (78)

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@marye2

I was diagnosed in 1996 with MCTD/Scleraderma. I had had endometriosis, and intermittently painful joints. At first I thought it was carpal tunnel when the real onslaught began in 1995, but slowly heavy fatigue, painful leg and knee joints and painful use of my hands. I had a smart GP. I did move back home to Arizona, as it was a simpler place than Houston and had less weather. I've had a good time, once on plaquenil, Methatrexate (segued from prednisone), NSAIDs, zoloft (helps focus). I worked fulltime to retirement. Stopped MTX after fifteen years, now going off NSAIDs as my kidneys are annoyed. I didn't find gabapentin helpful. What does help, in general, is what you can do to eliminate processed foods, sugar, whole wheat (old varieties may be ok) and whatever foods leave you feeling worse the next day. Kind of anecdotal; the blood tests don't really tell the story. Also, with the muscle/tendons and soft tissue problems, the best thing is to keep moving. PT stretches, water exercise, daily walks really help keep you strong and flexible. Magnesium, sublingual B-12 and D3 seem to help. The first couple of years were tough, but after that I had adapted most things in life to a more manageable level. Not much progression, but I do deal with GERD (look at webmd GERD triggers), use creams for dry skin, sunscreen/cover up/ hat/sunglasses. When I had kids, I just kept going like the Everready Bunny. Look up Spoonie theory to work with the productive hours of the day you have. Instituting a siesta for midday for a couple hours, a house cleaner every two weeks, kids do their own laundry, cook a few meals with leftovers to get past the new meal every evening thing, helps. The lifespan on the internet is inaccurate in the sense that the disease is somewhat different for all of us. FB has a group; and mctdfoundation.org is a good site. I have other specialists to manage things outside the rheumy's purview. Ice/heat, topical creams, elevation of limbs, spring bed with 3", 3lb topper and keeping hyrdrated are really important. Take care, work with the changes you can and enjoy those kids!

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Replies to "I was diagnosed in 1996 with MCTD/Scleraderma. I had had endometriosis, and intermittently painful joints. At..."

@marye2 I’m so glad you mentioned The Spoon Theory. Here is a link for the discussion on Mayo Connect.
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
You sound like it works very well for you. That’s positive for others to read and to see how it really works. Thank you

I can only say one thing and that is that you are wonderful. You are informative and I really wish I read this sooner. I am 80 and not in great shape. But you keep it up girl bless you and be well.