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...
This past week has been interesting. Started up with a few days of total exaustion and pain. By Thursday afternoon, I was feeling very good. Dont talk to me about Tuesday!
This was the week our clothing closet was open. Thursday. After that, I rested for a little then took my daughter to Walmart. Rested, then went to the church and weeded for acouple of hours. Felt great.
Worked on Friday and worked out for 30 min.
On Saturday, did more work at the church. There is about 30 feet of slate sidewalk that needed to be weeded. I had sprayed round up on it a couple of weeks ago. Crawled the lengeth of it pulling grass and planted some Pansys. Looked really good.
That night, I realized I had pulled a muscle in my right upper back. Sunday, went to church and them out to eat. Had to leave the restaurant, go home , take Aleve and Flexoril, get a heating pad and go to bed.
Called in sick today. Still having pain and spasms, but less than yesterday.
So frustrating! I get to feeling really good and then BAM! back to the world of pain! At least I had a few good days. felt like my old self.
Hope everyone has a good week.
Mary Ann
This was the week our clothing closet was open. Thursday. After that, I rested for a little then took my daughter to Walmart. Rested, then went to the church and weeded for acouple of hours. Felt great.
Worked on Friday and worked out for 30 min.
On Saturday, did more work at the church. There is about 30 feet of slate sidewalk that needed to be weeded. I had sprayed round up on it a couple of weeks ago. Crawled the lengeth of it pulling grass and planted some Pansys. Looked really good.
That night, I realized I had pulled a muscle in my right upper back. Sunday, went to church and them out to eat. Had to leave the restaurant, go home , take Aleve and Flexoril, get a heating pad and go to bed.
Called in sick today. Still having pain and spasms, but less than yesterday.
So frustrating! I get to feeling really good and then BAM! back to the world of pain! At least I had a few good days. felt like my old self.
Hope everyone has a good week.
Mary Ann
I have plans with a friend tonight....will try to suck it up and enjoy. I have plans on Thursday to see a play, hoping to feel better and be able to enjoy it.
Off to acupuncture.....maybe it will help.
Be well everyone
Beth
Lots of pleurisy. Living on pain killers and sleeping with a heating pad and not the husband. I miss him.
Once I get to sleep I'm OK, but got woke up by him a couple nights in a row; pain right away.
Fogot how long it takes the plaquenil to kick in and am hoping increase kicks in sooner than later.
Am off work tomorrow and next. Will be nice to get some stuff done at home.
Best to everyone,
Teisha
Had family visiting and enjoyed the time with them immensely. Even was able to do a bit of snorkeling with my husband pulling me around so that I didn't have to use my legs much. Thought I would never be able to do that again. : )
1. Thanks, the Dr I saw will not be someone I see again, probably, but he was nice and sympathetic. Yes, it is for a Social Security Disability claim. Praying it comes in sooner than later.
2. Each of us has different problems. I have 2 swallowing issues. The first where food gets stuck, behind my sternum, is caused by muscle spasms in the esophagus. The second seems more like muscle weakness in the back of the throat. All the involuntary muscle group that directs food water and air to the correct places. I'm often choking on absolutely nothing. Going to ENT for that and extra sinus pressure.
Lauren: be cautious with vit D. If the Marshall Protocol is correct, vit D will only mask symptoms for a while, similar to prednisone. Your relief may be short lived. check out http://bacteriality.com/about-the-mp/ for more info. I hope it lasts longer though.
I missed you all while I was away from my computer.
CJ
Going to see a local production of Chicago tonight, I hope this doesn't knock me back down.
be well everyone
Beth
Thanks....Leanne
I had a rough start yesterday but it ended well with a good hospital appointment ..... I was not admitted and a two week gap till my next. ;)
Jumped on the scale at the hospital to find out I had lost a total of 3lbs ;)
Ido wish that the cold weather did not affect us all as much as it does. It makes this illness that little bit harder to contend with.
So here are my wishes for us all
Warm days, plenty of sunshine as little pain as possible
Hugs and best wishes
Tigger
A longer post is in order, but basically: It was hell getting ready to leave, I was incredibly sore, had to double pain meds for the travel day and when I got back, which I will have to explain at my next refill.
Incredibly, however, I felt much better on the island-- my only symptom was exhaustion, everything else was okay.
So I did everything I could not do in '04 after my blood clot. Went scuba diving, 55 feet, body boarded some sweet breaks... lots of paddling, glad I trained, 10 minutes to get out, surf for a half hour, 10 minutes to get back, then just lie on the beach like a beached whale. The last day, I sad screw it and rented a long board, actually surfed standing up. I did two activities every day, but sometimes that meant snorkeling for 20 minutes and boarding for 20 minutes a few hours later... all I could take. Discovered UV shirts for the water, helped a lot.
It has taken me an entire week to recover, but really... mostly just exhaustion. Brain fog is... strangely absent. Must be an environmental component, bet it will be back after a few weeks of smog/fog.
Feeling very lucky right now, more detailed response to everyone individually later, great to hear from you all.