MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
I've been suffering from MCTD for 18 months and am on Prednisone (60 mg/day). I went thru 8 doctors before I asked this one to do a blood test and none would do anything for the pain. I was taking up to 8000 mg of ibeprofin a day until I started to pee blood...so I found a friend's friend's friend who would sell me a few to help. I'm in a lot of pain right now as today is my first day of steroids - so my question is - am I the only one who has to buy pain meds off the streets? Will I feel better soon on the Prednisone so pain could be a thing of the past? How do you all deal with pain so intense, it shuts your brain down! (
I can't tolerate narcotics. I take naproxen upon waking up, then again at night along with 20mg flexeral and 1mg lorazapam.
I have been juicing and on a plant based diet for the last month and have found I have a bit more energy, but the pain is still constant. (But I lost 11 pounds so I will continue with the juicing, vegan and gluten free diet.) My Pulmonologist wants to rule out lack of condition and extra pounds as a reason for my shortness of breath, lightheadedness, vertigo.
I drag myself to the gum 3-5 times a week despite the pain, as my rheumatologist and pulmonologist want me to lose 30 pounds. I am short of breath with very little exertion, but am able to do cardio and strengthening at the gym. My pulmonary pressures were slightly elevated on echo, so I will have a follow up in January to see if it is leading to Secondary Pulmonary Hypertension.
I am looking into a purchasing a hot tub, as I would be able to get in and out of a traditional tub. My limited upper body strength, neck and knee pain is not conducive to easy in and out bath access.
My question is, has anyone had any luck having their insurance company help defer the cost of a hot tub? I want to stay away from the narcotics, steroids, and the knife. I figure in the long run it would be a cheaper therapeutic treatment. (5 surgeries in 6 years)