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MCTD, Fibromyalgia, Reynauds
Hello, I'm new here. I was just diagnosed with MCTD, Fibromyalgia, and Reynauds. Just wanted to connect with others dealing with similar things. I have lots of questions, so I'll try to summarize my situation. I have felt unwell for almost 15 years, (I am 33) but the past few have been exponentially worse. I've had fatigue and widespread pain since I can remember, it would wax and wane for many years, but lately it is constant and getting worse. Some other symptoms I have are dry cough at night, tinnitus, HORRIBLE brain fog, muscle twitches, lightning type headaches, and internal tremors(?) In my torso and hands. I could go on, but I think you get the point. It's debilitating, I can't do fun things with my kids(I have 4) , I feel like I'm falling apart. So first question is, does anybody else share these symptoms? What works best for you dealing with them? Next is, since this is so new for me, anyone who has had any of these dx for several years, how has it progresses? So far my rheumatologist has started be on Gabapentin, but I feel like it makes my fatigue worse and makes me somewhat foggy. Has anyone else experienced this? I'll start with just these questions for now, because I could go on and on. But trying to not ramble on for my first post. Any input would be greatly appreciated! I am super happy to have found this forum, as I have felt super isolated dealing with this. So Glad to be here, and look forward to connecting with others going through similar situations.
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I’m in your same boat at 42. Looking for answers. Read my post if you can. Best of luck!
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4 Reactions@boconn89, I'd like to add my welcome along with @drigg97.
As you likely already know, Raynaud's affects most people who have mixed connective tissue disease (MCTD) and frequently is the first appearance of the disease. Allow me to bring in a few other members like @renm @irish283 @jennifer2010 @grandmar who also have mixed connective tissue disorder and related autoimmune conditions.
In the meantime, you might also be interested in these related discussions:
- Mixed connective tissue disease - Looking for support: https://connect.mayoclinic.org/discussion/mixed-connective-tissue-disease-1
- How do you cope with Mixed Connective Tissue Disease?: https://connect.mayoclinic.org/discussion/mctd-265a2b/
- Raynaud's Syndrome https://connect.mayoclinic.org/discussion/raynauds-syndrome/
- Fibromyalgia: Anyone out there with the same diagnosis? https://connect.mayoclinic.org/discussion/fibromyalgia-20d1d0/
I'm glad you're in the care of a rheumatologist. Besides Gabapentin, what is your treatment plan?
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6 ReactionsI am 68 & have had fibro starting in my late thirties- waxes & wanes as you described- only in the past 7 yrs have I hsd the twitching & the internal tremors (I describe it as my body feels like it’s “humming” inside) -that happens when I overdo outside which is basically all summer long as I am a avid gardener-I called the fibro my “aching & fatigue attacks until I finally was diagnosed in my early 60’s. Travel, stress, rather changes (esp cold/wet) bring the bouts on. Guessing this sounds familiar. Am on Lyrica , take a lot of aleve (which my doc doesn’t like) & Prozac to help with depression. Elliptical helps a lot to prevent stiffness/overall aching.
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3 ReactionsThanks so much for your reply and your welcome. As far as autoimmune treatment gabapentin is the only thing my rheumatologist has started me on. Outside of that I am taking prozac for depression and trazodone for insomnia. But with the gaba I feel like it makes my fatigue and brain for much worse. Has anyone else experienced this?
Reply to boconn89, @yellowdoggirl , when the worst of my nerve pain was raging and I built up to 1900 mg/ day in multiple doses, the gabapentin did make me feel really "stupid" and tired, but my body, old thing that it is, adjusted. Then it was a trick to wean down, and after about 7 years I am still on it for residual nerve pain caused by the initial infection. I am just glad it works and now I only take 400 before bed, but without it there is no sleeping!
I read that about only 60% of people are helped by gabapentin so I am still grateful that I am one of them.
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2 Reactions@yellowdoggirl , and I hope you find relief soon! I take Buspar for anxiety and a variety of other things. I would have thought I was kind of neurotic if I looked at myself now from the perspective of my younger self years ago.
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1 ReactionYes to fatigue from gabapentin.
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2 ReactionsI also have MCTD, fibro, raynauds and half a dozen other autoimmune diagnoses.
I’ve never been put on neurontin / gab ape tin but I’m guessing your headaches triggered that choice.
It sounds like they are not actively treating your fibro or MCTD. There are drugs to help with those. Reach out to your doctor (or find a new one) to try to move forward with a treatment plan!
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2 ReactionsI have a question and a comment on gabapentin: gabapentin has helped red, edematous and sensitive legs..calves to feet, but I have been very dizzy with it and have decreased the dosage a bit. Question: Has anyone experienced sarcoidosis occurring in another organ..heart this time, after burning itself out in lungs over a 15 year period?
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1 Reaction@shani i found a discussion that might be more helpful to you since it’s all on sarcoidosis:
https://connect.mayoclinic.org/discussion/sarcoidosis-treatment/
You’ve had sarcoidosis for 15 years but only in the lungs. Is that correct? What symptoms did you have that made the doctors look at your heart?
Is gabapentin the only medication your doctor has put you on?