MCTD, Fibromyalgia, Reynauds

Sorry to be so tardy., thanks for the sarcoidosis link, I’m enjoying this group. Yes I had lung sarcoidosis first. I’m using gabapentin for as yet undiagnosed severe lower leg pain originally from a med called tambicore, cellulitis. and severe liver damage caused by Lipitor. It makes me loopy and dizzy, but I NEED any or all of this to disappear. I’ve had two strokes and recent heart diagnoses of CHF and Afib so cardiologist said hmm, similar symptoms as sarcoidosis in heart but good news is that it could be treated! Music to my ears! As to taking other meds: cardiloc, fused, Pradaxa,Amlodipine, eltroxin, spirolactadone. Your thoughts appreciated as you seem to have the knowledge and experience I miss at my disposal since I was forced to stop working as an OT 4 years ago when my hip broke and everything went downhill from there. I had planned to work several more years and HATE not. I’m now in 3rd world country Israel, but about 10th, medically!.....would be helpful as I cannot have any type of surgery and my medicine chest is overflowing! many thanks.

Hello again, a bit of an update. Along with the fibro, mctd and reynauds, my rheum thinks I may also be displaying early symptoms of scleroderma. They also think that many of my symptoms are neurological. Now, I've been to one neurologist, who says that he sees nothing wrong neurologically. But this frustrates me. Some of what I think are neurological symptoms are:
-tremors (in torso and hands)
-EXTREME headaches that come frome nowhere but only last seconds
-Horrible brain fog
-Vertigo
-Excessive amount of muscle twitches.
-Floaters in vision ("z" like shapes or just dots that move around)

This is not an exhaustive list, but you get the idea. So my two questions are: 1) How do you get a doctor to listen? Has anyone else been blown off by neurologists? If so how did you deal with that? And 2) Does anyone share some of these symptoms? What is your diagnosis? What helped get you some relief?

Thanks in advance for any input, this is all just happening so quickly and is becoming really overwhelming

@boconn89 You’re certainly dealing with a lot of different problems. And i really understand your wish to have some answers, but it can take a long time to find answers. Autoimmune diseases are a giant puzzle and most doctors haven’t been able to put the pieces together. You can do two things: 1. get a second opinion, preferably at a university hospital, and 2. Start a journal of notebook of these bothersome symptoms. Note when they happened, for how long, what you were doing that maybe brought them on. Take this chart to your next doctor appointment. Also, vertigo is frequently an inner ear problem so you want to see an Ear, Nose, and Throat specialist. Have you had your eyes checked by an ophthalmologist. ‘Floaters’ can come with age, so get your eye health checked.
Are you able to cope with your fibromyalgia, MCTD, and reynauds alright? Do you think your doctor will be willing to work with you and give you referrals?

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.

@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

First:
What is MCTD?

Second, I was first diagnosed with both Reynauds & Fibtomyalgia 25+ years ago. I’ve since found out that in my case both are secondary syndromes directly related to my AI diseases: Lupus, Psoriatic RA, Peripheral Neuropathy, & others. Brain Fog is a big part of all of these. Also I was diagnosed with Bilateral Menieres Disease 16 years ago. The tinnitus, vomiting, severe vertigo, fatigue are all symptoms. I recommend that you see an ENT specialist & a Neurologist, besides a Rheumatologist. And always consider 2nd opinions

@dianecox

Mixed connective tissue disease - Symptoms and causes - Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/symptoms-causes/syc-20375147

MCTD stands for mixed connective tissue disease. It is usually rare (but everything in AD is considered rare). After some years, symptoms of an individual disease can appear.
Have your doctors mentioned this to you? Are you concerned that you have it?

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!

@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

The original author of spoon theory. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/