MCTD, Fibromyalgia, Reynauds

She’s taking plaquenil. Vitamin D and calcium. She’s also battling HPV( just recently discovered). She’s scared and beaten down right now.

Join most of us with no treatments that work and no diagnoses that make sense. We are sharing
what works for us. I constantly experiment on myself and have found a way to survive the body pain. For autoimmune pain: Proleeva Medicine Food paired with Inspired Nutrition Ultimate peptide syrum (I take 3 drops on my tongue each time I take a Proleeva capsule). At most I use 2 capsules a day because it is so EFFECTIVE. A pain relief cream: Topricin. A topical soothing herb for RA swelling and vasculitis: Chinese Angelica - no alcohol, serum-like essence rubbed on swelling or inflamed vessels actually normalizes. Diet is essential: eliminate sugar, gluten, soy, most oils, eggs, most sauces, additives, prepared foods. Aim for organic whole foods, mostly plant based or high quality protein. Vitamins, minerals. Pure Bliss organic food bars, blueberry hemp helps with constipation, turmeric lemon-orange, great tasting with herbs. Focus on consuming large quantities of organic veggies and fruits, and avoid any that upset your stomach even slightly. Wishing all relief, successful healing, and a quiet mind.

Hi, this is my first post. I feel that you are describing so much of what I’m feeling. Chronic pain, fatigue, fog brain, internal tremors, twitching eyes, cold hands and feet, numbing at times. Burning pain in my legs, sore mouth, sore glands in my throat. I have several autoimmune issues, first being diagnosed with non alcoholic liver disease, PBC, next came thyroid disease, Restless leg disease then Lupus and Raynauds. I have been sick 11 years. Some days are better than others. I am taking medicines for liver, thyroid, Fibromyalgia and Lupus. I think I am in a flare right now and need additional meds which will be addressed in March. I wish I could tell you some good answer to help, but have not found the right combination yet. I have had the internal shaking for three years now, with three doctors not giving me any answers. My best regards to you.

Welcome @phillydee, I know it must be difficult dealing with so many symptoms for as long as you have. I think it's good that you are actively seeking answers and trying to find something that helps. There are some other discussions that you may find helpful if you haven't already seen them.

– 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/

You mentioned that you have seen 3 doctors and not had any answers yet. Have you thought about seeking help at a teaching hospital or major health facility like Mayo Clinic?

Take it you’ve had your B12 levels checked?

Fibromyalgia, IBSD, PA and being Gene tested for HPP. Ugh. Fibro began 3 1/2 years ago when I lost my husband( I’m 66) Gabapentin only when pain is unbearable. Was up to 1800 per day. Couldn’t function and was loosing memory. I would rather deal with the pain. For me stress is the trigger. I would be very interested to know what supplements help.

Dear Bocon89, I empathize. I have Fibromyalgia (27 years), Raynauds, both thyroid diseases & oseorthritis just about all over. I have IBS-C, Chronic sinus infections & allergies, asthma, Headaches & Migraines, Chronic Fatigue, GERD, RLS, etc., for years. I take Magnesium 200 mg, Vitamin D3+K2, B12 injections, B2, B Complex, Fish Oil (Omega 3), Elderberry with Zinc, Beta Glucan for immune support, Vitamin C, Melatonin 5 mg for sleep, Flexeril (Prescription muscle relaxant) very sparingly as it can cause short term memory loss, Mobic (Prescription) for inflammation which helps. I get cortisone injections for my knees & shoulder arthritis. My take on what causes fibromyalgia is never getting into a deep sleep all my life, always pushing myself above and beyond, allergies & chronic sinus infections, stress & having had Mono (Epstein Barr.) I am awaiting to see a rheumatologist, My fibro has worsened over the years. My mornings are very hard as I am so stiff, sore, achy & in pain and I have to move slowly through them. Stretch first thing in the morning. I find that massages (my massage therapist uses Voltaren Gel over the counter to massage my back and neck with) help tremendously. I do hot tub soak baths in epstom salt. I stretch out and take a nap, a lot of days as it does help. I have a strong support system with my family and I have a strong faith in God. I know it is hard not to focus on the pain and fatigue. I wish there was a magic pill for all of the things you have. I honestly have not been able to tolerate any of the stronger meds for this as I am so sensitive to medication. I find the older, tried and true meds work the best such as Flexeril & Mobic. Don't over do it when you have a fairly good day or you will pay for it the next few days with a flare up. Accept the fact that others will not understand your pain and fatigue because you look fine. Eliminate as much stress in your life as you can. God bless you and I am praying for you and I understand.

Gabapentin is a good drug, but the down part is that it makes one very tired, and usually sleepy. I took it for several years for muscle spasms in my feet and legs, and the side effect was that it let me sleep! In my case, that was a huge blessing. I no longer take it though, due to other health issues that caused me to sleep MUCH too long; sometimes 32 hours at a time!! I also struggle with fibromyalgia, Degenerative disc disease, and arthritis, and now MAC; lung disease. Just a heads up; the gabapentin is likely the culprit making you even more tired if you are taking it during the day. I had to take mine ONLY at night.

It can feel like no one listens sometimes. You aren't alone. I have a lot of similar symptoms, and am only on anti-inflammatory right now. People have no idea what affects the symptoms can have on daily life and your mental state. If you need a friend to just be able to express yourself- share ideas*
Fibro/scoliosis/ RA

Gabapentin DOES make one tired! I used to take it, but ONLY at night, since it did make me tired...and sleepy. I take a green tea capsule the moment I wake up, with a Tramadol, so that I can at least function.