I really appreciate everyone's input and support! I am definitely having a tough time. I am so filled with pain and weakness that discouragement has set in this week. I've read a few posts here on MCTD and it certainly sounds like me. However, I have learned over the past 20 years that no matter what I think, if the doctors don't diagnose it for one reason or another, I only get frustrated.
I was first tested for Lupus 20 years ago, and because the symptoms keep coming back, have been tested 4 or 5 times since then. The labwork always comes back okay, so I put Lupus out of my mind and move on. I'm at a point where I've lost faith/hope in the doctors figuring everything out and getting me help, so I just try to deal with it. Some days I'm more positive mentally than others! LOL
I have been diagnosed with Fibromyalgia, Sjogren's, Degenerative Disc Disease (and many other spinal issues), Scoliosis, Chronic Fatigue... and probably other things I can't think of. LOL Dealing with so many "invisible" illnesses has caused frustration from sister/mother judging me. As a result, I'm thinking of writing a book filled with short clips of things people suffering from disease want others to know and understand. I love to write, and need to find a way to give back. :)
Currently, I have so much joint, nerve and muscle pain that I'm not very functional. Even my arms hurt too much to use. My legs hurt/burn a lot when walking, including hips/knees. Any ideas or suggestions? BTW if anyone has things they think would be helpful for my book, let me know!
Hugs and Peace to you all!