Jackie, I just love those good days when I feel somewhat normal & get out of the house. One of my main problems is I don't want to be home when I am feeling good & so my housework really has gone downhill, one of the many things I have learned not to worry about
. That clinic you went to sounds really interesting, it must have helped alot with pacing. I have had to just plug through with trial & error. Mostly error!!! I live in a small town in Montana so there is nothing like that here. It sure sounds like you have a good Doctor, so many have to deal with below average Doctors & get no help. Someone said in a thread on the Fibro forum to always remember that in every graduating class of Doctors 1/2 of them are in the bottom half of their classes. Good thing to remember but I too have a very good Doctor.
TMJ-has a big long name that i can't remember but it is a problem with the joint in my jaw. It gets really painful & can cause my ear to hurt & my face to hurt. For a long time my Doctor thought that it was some kind of an ear or sinus infection. I am having a flare with it this week & my jaw pops when I am chewing & it really bugs me. It is a problem that is associated with Fibro alot.
Holt-Oram Syndrome is a genetic disorder that is very rare so usually no one has heard of it even alot of Doctors. There are only about 400 patients world wide. It affects mostly the heart, & the arms. I have symptoms of it in my hands & arms & a heart murmur. My oldest daughter, Sarah, was born with holes in her heart & had several surgeries. My daughter, Misty was born with arm & hand problems which required 13 surgeries before the age of 16. Mistys' son, my grandson, Deylan, was born with a very bad heart & he has had 6 surgeries, 2 of them we had to take him to New York City for a new procedure that finally saved his life. It was touch & go for about 5 years & that is when I ended up with Fibro & ME/CFS. He is doing well now & his heart is stable. He is 10 & has a pace maker, he is growing like a weed.
It is wonderful to have an understanding husband. It helps so much & alleviates the guilt & sadness of being sick. I felt so guilty at first because I couldn't work.
I am very religious & have a strong faith which gets me through. We can not talk about religion on the forum though. That is one of my favorite Bible quotes.
It is so nice to meet you & I hope you have a good day. Hugs, Denise