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How do you cope with Mixed Connective Tissue Disease (MCTD)?
Would someone else please join this discussion and let me know how you cope with Mixed Connective Tissue Disease? How can you explain it to your family and friends when they just do not understand? How can I explain it to my doctors? Myself?
I am always tired. Extremely tired. Weak. Do not feel well.....ever. Then at various times, I have problems or flares with several different issues. I always seem to struggle with the neuropathy in my feet and or the raynauds or just swelling and pain. The GI problems are endless. Though they have talked about someday I may have to have a feeding tube, I have always fought that. But with this dismotility and Barretts, some days I actually think just do it and get it over with. I am tired of the pain and wondering what to eat, what I CAN eat.
My skin hurts. My joints hurt. And I feel like I am losing my mind some days. I hate when I feel all whiny and negative. That is not me but darn it all, I hate these illnesses.
The doctors all say to join a support group. Where and which one? Lupus? Scleroderma? Raynauds? Sjogrens? I am at a loss so turned to this site.
Any advice would be helpful. Or just knowing there is someone else out there going through the same thing and understands!
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It is definitely hard when the doctors don't know what to do with you… I can relate in many ways.
I have been diagnosed with MCTD since 2002. Right away I was put on hydroxychloroquine and fortunately I haven’t had side effects from it. They also added Arava a few years later. Because my Scaladerma is dominant, they gave me Rituxin and now they just took me off it as they feel that I am overly immuno suppressed.
Overall I’m feeling fine except for the out of breathness. Drs haven’t been figured out why I am having issues but hopefully stopping Rituxin will do the trick. It is frustrating but keep having a positive attitude. God bless🙏
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1 Reaction@tabathab Your positive mindset will help you through this, but be kind to yourself, even if it's hard to do. Pushing too hard can be exhausting.
My doctor's concerned about longterm damage, so i take the meds, but definitely understand not wanting to. There's some recent research showing ginger and turmeric are promising for reducing inflammation. Ginger may also help with nausea, which i have from both methotrexate and Orencia. I drink a lot of (nonalcoholic) ginger beer made with real ginger, ginger tea, and have learned how to make candied ginger and ginger hard candy - maybe not the healthiest ways to get ginger but they're enjoyable. Except for eating curry, I find the turmeric harder to eat and take a supplement. Just some thoughts... 😉
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1 ReactionI get it! I was given a brochure when I was diagnosed in 1996. I moved away from humid Houston to dry Arizona to have a more simple lifestyle, but there were other reasons, as well. So, you can know that many of us did work until retirement, and did not become bedridden, and have outlived the dire predictions of early death. Lupus self help groups might be good, but I like the MCTD Lifestyle/Integrated/Functional group on FB in addition to this one. Lots of newly diagnosed people there. However. You do need to find a way to eat since high nutrition is important for the long term, and supplements are not worth the money. AIP, Terry Wahls Protocol, Diabetes diet, and/or a non-processed diet, low sugar (high fructose corn syrup and aspartame are horrid), avoid white potatoes, whole wheat, dairy (I am okay on yogurt) and saturated fats. Basically, I have 5-10 meals that sit right and stick to those, rather than a diet. Follow the advice on webmd (google GERD triggers) for other useful advice. Hot chamomile tea after a meal is helpful. Find stretches/water exercises to relieve joint pain as movement offers the best relief. With this condition, resting is less productive than movement. If you must rest, get up hourly and move around. If you haven't exercised in awhile, find a good Physical Therapist--manual that uses yoga/pilates/isometric moves. Online, I like Dr Jo on you tube, but you have to know what body system is annoyed. Massages are also great for relief, as we have a bit of fibromyalgia and relaxing the muscles helps immensely. Movement helps motility, but I take ducolax here and there. Make sure you are sleeping well at night and that you do not have sleep apnea; I wear hand splints for good circulation at night. Sublingual B-12 helps with brain fog and pain. Do make sure you are fully hydrated--I finally bought a marked bottle to make sure i get at least 32 oz. I mix water with a bit of good quality fruit juice as electrolytes make a difference. I have been on plaquenil (now 1X day as I am older), Methotrexate injectable (old drug, low dose, lower cost) and Etodolac/Lodine for pain. I use a lot of topicals like lidocaine patches, KT Tape (you tube instructions), compression socks, etc. as needed. A pain medicine doctor prescribes Percoset for nighttime pain relief; I do okay during the day. It is a lot but over time it becomes pretty much normal. I think it really depends on taking better care of yourself than we are used to and keeping must-dos light and lifestyle simple. Many of us are overachievers, so it is a life lesson. Peace.
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1 ReactionI have a flutter valve and do intentional breathing to help with shortness of breath. Seems to help relieve it, where inhalers do not (for me). I think percussion is helpful. There is another device where you work to keep up the balls in it, but I do not have it. I do wonder if it is long term Covid, but no evidence or testing available.
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2 ReactionsI haven’t gotten Covid so far. 🤞🤞
Inhalers don’t work for me either. I am trying to do Pranayama regularly. I also use the spirometer.Hopefully, I will see the difference.
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1 ReactionWhat 43 years of MCTD has given me and I'm still smilingI am not posting this for sympathy or pity. I am letting you know that we can survive most things that it throws at us and come out smiling, if we choose to. This has been my life since I was in my 20's.Mixed Connective Tissue Disease withSystemic Scleroderma - Pain, fatigueSLE Lupus - Pain, fatigueRaynaud’s phenomenon - Pain when coldSjrogren’s Syndrome - Joint pain, fatiguePolymyositis - Muscle damageFibromyalgia - Musculoskeletal pain, fatigue, plus sleep,memory and mood disordersGERDS - Extreme heartburn, acid reflux, abdominalor chest painLichen planus - Itchy skin and painful sores in the mouthBursitis - Joint painTendonitis - Pain, tenderness and mild swellingPericarditis - Pain (like a heart attack), weaknessRheumatoid Arthritis - Mild- Joint stiffness, tenderness andswellingOsteoarthritis Mild - Joint pain and stiffness with movement,bone spursMeniere’s - Vertigo, tinnitus, moderate hearing lossboth ears, 2 hearing aidsSleep apnea – CPAP machinePeripheral Neuropathy - Sharp pains anywhere, anytimeIncontinence - Absolutely no controlHyperhidrosis of the head and excessive body heatHeart - Arterial sclerosis, Angina andHypertensionCheck for Autonomic Neuropathy - Suggested but not confirmedNow that's just the big stuff, I have had 13 surgeries and waiting for a 14th for my 3rd Thoracic Hiatal Hernia in the same spot. Too many MRI, CT, X-Ray, Endoscopy, Colonoscopy, etc. to mention. AND I AM STILL HERE AND SMILING, because I choose to. Your life is what you make it. If you are unhappy at home or work, fix it. If you want your life to be different, change it. You get my point. I chose to look past the diseases and pain and to live my life anyway. You can too. You can cry, shout, hit something, whatever you need to do to get the frustration out but always end up with a smile. You would be amazed at how it changes your life. Good luck and keep smiling.PS: If anyone want to ask questions about any of these diseases just ask.
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8 Reactions@mctd43years Wow. Wow, wow! I love your statement about hitting something, crying, yelling but always end up with a smile. I constantly have chats with myself and they sure help. BTW are you part of an autoimmune support group in your community? I’ve often thought of starting one. Thank you so much! Becky
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1 ReactionHi Becky, I live in Nova Scotia, Canada. I haven't found anything that I like here. This group is great and I am really enjoying it. I'm really not into gatherings. I find they can get gloomy if you have even 1 negative person. Glad you like the post. Keep smiling.
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3 ReactionsGod Bless you mctd43years! WOW sweet lady. What a wonderful attitude. Praying for you as you move forward....one...day....at....a....time... You blessed my heart tonight!
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3 ReactionsI am with you…sorry you have had so many problems with your health…most fall into the ‘unexplained-medically’ or autoimmune disease category in the sense that they can be corrected with food…doctors put us in that category as they cannot explain where the disease comes from therefore they cannot heal it!! Ancient Greek philosophers said: let food be thy medicine & let medicine be thy food…we don’t have to be on the SAD diet any longer: the standard American diet. Good for you for having such a positive attitude as that is half the battle! The rest is food…I am not talking about majors like cancer & heart disease etc…gratefully Marianne!
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