Hi nancy welcome to the board. I am sorry I couldn't reply to your question about the connective tissue disease, I am having a hard time getting to the board these days.
My CTD pain is mostly in my joints actually it is all in my joints. My joints (all of them) and the immediate surrounding area has extreme pain if I don't take something to keep the inflammation down and to stop my own immune system from attacking me. Hence the prednisone which is a immunosuppresant drug. I use to take plaquenil but had some problems with it and also tried methotrexate but also had problems with that. I also have the malar rash sometimes and mouth sores and I am sun sensitive. I always have worse pain and fatigue in the summer months.
The fibro pain is burning and in the larger muscles and I also have those sharp little goodies that zap you into reality sometimes. Fibro pain is flu like and sore achy muscles. CTD pain is a ache and pain in the joints that is worse when you try to use them, it zaps the strength from your joints and makes it almost impossible to use your hands and painful to walk from feet and knee and ankle pain. I also have very bad hip pain especially the left of course the shoulders and elbows also hurt to move them and really my CTD just aches when not moving it will sometime wake me up at night. And don't forget I drug myself up to sleep because of the fibro.
My grandmother died from scleraderma back in the 50's when docs didn't know how or what to do to help her. Hers was mostly internal and the thing I remember most was the swelling in her joints and her joint pain. The docs just treated her for arthritis. I didn't mean to scare you or say anything to worry you, again my grandmother had problems in the 50's when docs still came to the home to treat you they didn't even know she was sick.
I hope I have helped you, I know it is hard when you have so much pain to know the difference and describing pain is difficult at best. It is the joint inflammation that is the give away and believe me you can tell the difference. My joints do not swell up or feel hot or anything like arthritis, it is all on the inside and the immediate surrounding area. Sometimes they feel swollen on the inside especially my knees but they never look swollen.
If you have any more questions I would be glad to try to help. Let me know what the docs say if it is scleraderma. I guess you have or are seeing a rhuematologist. Good Luck!
NancyJones, just bumping this up to make sure you saw it and to ask if you have had any answers from the docs yet as to what your diagnosis is. Keep me posted, I try to check in as often as possible, some weeks are busier than other.
Thank you so much for the detailed response. I'm sorry to hear about your grandmother, it's sad that doctors didn't know then as much as they do now. However I feel there is a long way to go, since they still are unable to diagnose so many things. Fibro and CTD primarily.
I go to a Fibro doctor who said that a test is currently being developed to test for Fibro and it will most likely be in the form of a spinal tap - yikes! Not sure when it will be available but it will be interesting to know how many people it weeds out from a Fibro diagnosis. Then, what are those people to do that don't test positive. Back on the doctor merry go round.
I am doing fine, some days are better than others. Most of my pain feels nerve related, not flu-like or muscular. I don't have any problems with sleep or energy. I'm currently taking Cymbalta which has helped a little. I really want to focus on exercise however time is the issue.
Take care and hope you are feeling a little better!