MCTD, Fibromyalgia, Reynauds

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!

One thing I have learned after working with doctors at Mayo long covid clinic, is that Central sensitization syndrome has a lot to do with all kinds of symptoms. I have medicine and food sensitivities. Yet I test not allergic to anything. Calming the nervous system down helps a lot.

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.

How exactly did you get diagnosed? I have had multiple blood tests and diagnostics scans by my local hospital and oncologist because I developed cancer.

@boconn89 Have you seen a neurologist too, or just a rheumatologist so far? I have many of the symptoms you mention. I was diagnosed with fibromyalgia by a rheumatologist. Then I went to a neurologist and through a skin punch biopsy, I was diagnosed with small fiber neuropathy. I’m currently going through more tests with Mayo to see if there is an underlying cause. So now I’ve also been diagnosed with autonomic dysfunction and POTS. So far no underlying cause for any of it but still waiting on some test results. If you haven’t been to a neurologist, you may want to consider that. Wishing you well! ~Robyn

What is small fiber neuro. and what is POTS? My daughter- in- law has reynuads and restless leg, she has difficulty sitting more than 5 minutes.

What is small fiber neuro. and what is POTS? My daughter- in- law has reynuads and restless leg, she has difficulty sitting more than 5 minutes.