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charbaby (@charbaby)

mixed connective tissue disease

Bones, Joints & Muscles | Last Active: Dec 31, 2021 | Replies (31)

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I’ve struggled with this for 14 years… So many tests, so many wrong answers from doctors… Finally a clear diagnosis two years ago. (I always knew it was lupus, but rhummy wouldn’t diagnose because no rash on face-crazy!) and I couldn’t even begin to list the different meds I’ve taken…. But I do know the damage most of them have done to my body! For every pill the rhummy put me on, family dr had to give me two more to counter the side effects! I am now following an all natural plan which includes strict diet changes and zero impact workouts (in water) and herbs I grow at home that provide pain relief (legal ones…hahaha). I’m still struggling some days. I still have pain and stiffness each morning. But, I’m not sick from the meds, I’ve lost 50lbs and My head is clear! I’m also not as fatigued without all the drugs! Research natural alternatives… Then insist that your doctor help you through it. This is not a “vitamin-health drink” diet… Just eliminating those foods that hurt us and adding better foods to help! Goodluck!

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Replies to "I've struggled with this for 14 years... So many tests, so many wrong answers from doctors......"

Wow, This is great news! I am curious about your diet. I know organic is best with any AI disease and I use cooling herb teas and foods but curious about your opinion of what hurts you. I see an acupuncturist and he is constantly fighting the heat in my body with needles and working to keep my energy level decent. He has been a big help but I have been taking methotrexate 25 mg just tapered to 20mg and will continue to taper. My derm is on board with the acupuncture my rheum. lets say he is not negative but I can read that he is skeptical by his lack of affirmation! My final diagnosis is dermatomyositis and probably caused by a benign tumor on my spinal cord that has been an issue for 10 yrs. All my docs are thrilled with how clear my skin is now they thought I would have much more scarring. When I look back at the medical photos I think, it’s a miracle. I do get fatigued easily and conserve energy as much as possible and believe in naps! I have only been dealing with this a year so feel blessed to be where I am. I am optimistic that it will never return and I’ll give God the credit. I have been through a really rough year loosing my dad March 23,11 then watching my down syndrome brother go downhill quickly and loosing him March 22, 12. I had to do all I could to breath and try to not stress out and therefore breakout! My Brother was more like my own child than a sibling. I practically moved in with my mom to care for him Nov. – March 22nd, what a privilege, sharing that time and caring for him.

I eliminated all enriched flours from my diet (follow the Dr Oz recommended first five ingredient list) I eat only 100% whole grains now. It is rough to find the things I love to meet the requirements and I have taken to baking many things from scratch. For me… Sugars and those “white” or “enriched” foods caused inflamation! I am still struggling with my rash… Mainly because it’s spring and im a gardener! Love being outside! But, I do most of the shade gardens while my husband handles the veggies in the sun. I have found that ginger works for my pain. I add ginger root to my smoothies in the morning, my tea in the afternoon, and generally use it in cooking as much as possible. The most recent transformation I have made is to reduce the amount of animal protein I consume. I am getting most of my protein from soy, nuts, veggies, and fish. My body seems to be able to break it down and use it faster and better so I have more energy (or so my research tells me). Whatever the reason, I feel stronger! In general, I stay away from processed foods and opt for fresh and raw whenever I can… I make my own dressings, baked goods, and grow my own herbs… My main symptom is inflamation of my joints. I researched foods that cause inflamation and cut them… Then found that many food reduce inflamation, such as cherries and omega-3 rich foods. Broccoli is my favorite friend. Oh! And. Cow’s milk was another thing that I replaced. I drink soy, almond, or coconut milk now… The cow’s milk is an animal protein…. As for the rash… Water, water, and much more water… And reduce sun exposure and stress! The more I excersise (yoga and water classes) and eat right, the better my rash is (if I stay out of the sun)… Goodluck and let me know what you find that works!