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...
Morning Guys
I’m from Australia and recently been diagnosed withMCTD and Fibromyalia. Im strugggling with the pain and fatigue. I have started the medication less than a week ago and minimal relief. It’s comng into winter here so the cold has hit.
Does anyonw have any tips for the morning rituals to get out of bed and go to work, ive been lucky enough tohave had a few weeks off but now yhis is cming yo an end I’m begining yo stress about makng it back to work because of the constant fatigue and pain.
Thanks any advice would be great
I allow 90 minutes to get out of bed and get ready to leave the house.
On the worst days, this is my ritual: I wake up at 5:30 AM in agony, can barely move. I sleep on the left side of the bed, so I turn onto my left side and pull my knees towards my stomach so I can roll to a sitting position more easily with my feet flat on the floor. Stand up slowly and walk VERY carefully in the dark-- my balance is okay, but my muscles are so stiff there is a serious fall risk. Definitely hand on the handrail going downstairs. Dose with at least 15mg or 20 mg CBD oil in a 10:1 mix with THC-- so no more than 2 mg. THC, no problem for work or driving. This is legal where I live, and I am careful to use only preparations from really high-end dispensaries that cater to medical patients, like kids with epilepsy-- no vaping, no smoking, no pot-shop mixes or CBD from hemp. I also take two tylenol and maybe a 60 mg Sudafed because I have sinus trouble, probably unrelated to MCTD.
Go BACK TO BED, sleep for another hour. Wake up again at 6:30 AM-- still stiff, but MUCH better. Make coffee BEFORE taking a shower-- very important-- drink half a cup before getting in the shower. Now my fall risk is almost zero. It takes me half an hour to eat a bowl of fruit, a bowl of cereal, a banana, and maybe a yogurt.
Then I get in my car and sometimes drive 42 miles to work. By the time I hit the highway, I feel fine, and I'm good for 8 to 10 hours, though I often need to take a 20-minute meditation OR an hour-long nap in my office.
It's a big lifestyle change. But, depending on your symptoms, sometimes it can be done. I work a 55-60 hour week during the school year, and maybe 25 hours a week over the summer. I also stopped drinking and all recreational drugs completely.
And I worked for 5 years to retrain for a career that would accommodate exactly this kind of schedule. Not easy, but I love my work, and still manage to get in 15-30 days of body boarding in the summer, a few days of skiing in the winter, and on a good year. I do 22 minutes of moderate intensity cardio 3 to 5 times a week and a little light dumb-bell work and crunches once or twice a week-- maybe three times if I'm feeling really good, but no more than 10 minutes of that after the 22 of cardio. I play a few showcases or club dates with my band, maybe go scuba diving a couple of times.
Thanks so much for your advice unfortunately it’s not too easy to get CBD in OZ just yet but I will definitely try.
Yes, I agree and will be giving myself 3 hours each morning before starting work so I can meditate, walk and get ready and drive to work.
I know I’ll have too get give up alcohol its going to be tough, as I do enjoy a Friday night drink. All the lifestyle changes are going too be difficult including diet changes.
Thanks for the advice I’ll take it on board. Xx