MCTD, Fibromyalgia, Reynauds

My significant other had restless legs and what cured him was clonipin. And I had pots 50 years ago and still do. I wear compression stocking. All the time. Helps most of the time.

Linda. You can diagnose cancer. Great now you do something about it. With my autoimmune crap nothing was diagnosed. It was yes mono because I had severe liver involvement. But the rest of it was guesswork. Chronic fatigue now Epstein Barr didn’t have a name until I was sick with it for 10 years. All these illnesses left me with no adrenals so I stay on prednisone and serious muscle weakness and pain. I use a walker because I fell and broke my femur. It was a non union so I never healed. I fight every day of my life to get out and check out my garden. Even though I can’t do it myself (really hate that part). I am really good at keeping thing alive and beautiful. So you can’t stop…..ever. Find the small pleasures and watch them grow. I write this with braces on my wrists due to arthritis. ❤️😃

I have had MCTD for most of my life but wasn’t diagnosed until 16 years ago. I have never been on gabapentin. My symptoms were very debilitating at first and affected almost everything from my hair to my feet. I have been on the same meds for most of the 16 years. Prednisone, plaquenil, methotrexate, Cymbalta and BP meds. Still have fatigue, just a trip to the grocery store tires me out, symptoms come and go but mostly I am doing well.

Low-dose naltrexone (LDN) with HCQ is working very well for my MCTD. It has stopped my muscle twitching, some of my internal shakiness, nerve pain, and muscle pain. LDN is fairly new, not many studies, but it is very promising in treatment for autoimmune diseases. My Rheum and Pain docs both recommended trying it and I am so thankful they did!

I was on Cellcept but had to discontinue due to daily severe nausea. Gabapentin was the worst medicine and had to discontinue after 9 months...it made dizziness, fatigue, fog worse! Much better without it.

I was diagnosed with fibromyalgia at age 50 and am now 72. The pain and brain fog were extremely bad at the beginning but, either it has decreased or I am a tough old bird now 🤔. Did develope restless leg 4 or so years ago and taking ropinerole three times a day keeps it away. But bottom fell out of my bucket with bloody vomit telling me my next adventure is non alcoholic cirrhosis of the liver - stage 4. New playing field for me and I'm not that informed. Had 4 surgeries to tie off 18 varices in throat. My husband is my cheerleader and fixes the best meals for me. Did you know the liver had 500 functions - how did I get to this point and not know it was happening? Most important, as my comrades have stated, is to hold on. Many of us are in this same boat but we're all good listeners. And we've all been given a set of oars. BJ in TN

I’m tired all the time. My muscles in my face feel weak and tremor. I have a lot of diarrhea. I have bad anxiety and panic attacks that started when this did. I’ve had all these things for about 10 years. I continue to test positive at level 8 for anti-RNP antibodies but I’m told I’m fine and just have fibromyalgia. I need answers.

Hi @tb0010 and welcome to Mayo Clinic Connect. I wanted to introduce you to @boconn89. I moved your post to their discussion so you can collaborate with other members that are having similar symptoms.

You can get to the discussion through this link:
MCTD, Fibromyalgia, Reynauds
https://connect.mayoclinic.org/discussion/mcdt-fibromyalgia-reynauds/

And here is some good info to read: "Many patients with autoimmune disease will not have a positive ANA. While the ANA test is highly sensitive for certain rheumatic diseases such as SLE and ..." --- Antinuclear antibody test: https://www.racgp.org.au/afp/2013/october/antinuclear-antibody-test
Rheumatologist Explains: Mixed Connected Tissue Disorder:
https://youtu.be/zygd3Vx88aU

10 years is an awful long time to suffer through this without a definitive diagnosis. What types of tests have you undergone to find an answer?

Thank you so much! I’ve been the 2 rheumatologists. One in Huntsville, AL and one at Vanderbilt in Nashville, TN. Both said just because I had RNP levels of 8 doesn’t mean I’m sick. I’m tired all the time, I think I have essential tremor in my face, my joints hurt. They said I don’t have the visible symptoms of MCTD. My dentist said I have TMJ and that might be causing the tremor in my face. I gave up for years after two professions told me I’m fine. I have anxiety and panic attacks that nothing helps. I’ve been on propranolol for the panic attacks. I just feel weak and tired all the time and I shouldn’t feel this way in my 20s. I feel disconnected from my body and my movements. Like jerky movements and tic like movements sometimes. Anxiety definitely makes it worse but I don’t think that’s the cause. The rheumatologist told me have fibromyalgia and to exercise and eat well. I eat well and exercise daily. Nothing helps. I have perfect labs and im a healthy weight. The only thing that ever shows up is the RNP of 8

My daughter has been diagnosed with Mctd and ILD. She also has Reynolds and is now battling HPV. I’m looking for any suggestions on nutrition ( foods, supplements) that will help her without interfering with her meds.

Welcome @mctdmom. It's not uncommon for people to have more than one autoimmune condition. It sounds like your daughter bears a load.

To help you connect with other members like @boconn89 @drigg97 @yellowdoggirl @zinniagal @chglobig @shani @marye2 @raepent1 @kleffew, I moved your message to this existing discussion:
- MCTD, Fibromyalgia, Reynauds: https://connect.mayoclinic.org/discussion/mcdt-fibromyalgia-reynauds/

Members here can share nutrition suggestions - food, diet, supplements - that help them without interfering with medication.

What medication does she take? How is she doing?