I definitely have cold hands, feet, knees and nose. The only doc. comment was “people don’t get Raynaud’s symptoms in the knees”. How does that help? I once sat on my couch in layers of clothes, my down jacket, an electric blanket and a down comforter and still couldn’t warm up! Electric blankets are useless. The only thing that helps in bed is my microwavable bed warmer. Seems to emit a moist heat. I won’t go to bed without it or I’d be up all night.
I also have low BP and temp. I was told the red moles are a part of aging and the white spots are a fungus. I can’t do anything physical for a normal amount of time. I have to take breaks doing anything. I feel so weak and it gets worse as I age. There have been times I’ve just had to stop walking, sit down and just wait until I felt I could start again. I’ve gotten used to having to take breaks. I’m a bodyworker and have to be on my feet and I take more breaks than most therapists. Means I can’t see as many people in a day. Even though I’ve worked it out for now I can’t imagine it getting better and I’ll have to stop working eventually. I’m only 48. I think though, that I’m so good at what I do because I’ve had to figure out how to use my hands safely but effectively.
I have smelled cigs. and popcorn before several times but not often. Too many pains to list. I’m also single so I carry my own groceries in and do my own vacuuming. No yard work – I would only ever rent. I fear being single forever because I can’t imagine someone being attracted to this mess and I feel much older than I am. Bummer.
Hi Anne, I just wanted to reach out to you to reassure you that you CSN and WILL get better. I’m working hard to get out the research, and get us started on treatment trials (and I’m trying to expedite it, too). Exhausting, but it will be worth it. Hang in, my friend, and please stay close by as we get this info out, OK? You will likely have a line out the door of folks interested in being with you! When we can get on top of the fatigue and pain, it changes EVERYTHING. Please trust me on this — Not that long ago, my husband had to just about CARRY me into the doctor’s office! And I slept in my clothes, rolling out of bed barely in time to get to the doctor. Unbelievable combo of “fatigue” (really, that’s what we’re calling it?), PAIN, and depression. The depression hit when the other symptoms hit. I was not depressed because of my condition. I could usually laugh at most ANY situation. I knew it was chemical, and was on a mission to figure out what the HECK happened to me (and my kids. Yikes.) Thank Heavens, I believe I’ve put it together, and am now pulling together the treatment trials (a “trial” in and of itself!). Behind the scenes, I’m working on dosages. Believe me, my kids and hubby can tell you on an hourly basis how the dosing is doing! ha. You won’t be alone, my friend, but believe me, I know that feeling all too well. Big, big hug, Diana