Hello everyone! I hope this coming weekend sees you in good spirits and mostly free from pain. 
My dh is the sweetest guy! He has been worried about me, especially since my last visit with the doctors. I felt I was being interrogated, and I didn't feel I had made any headway with them. Dh had an appointment with our nurse practitioner, who is our primary care person. He asked him what was going on with me, was he doing the referral to the rheumy, and why was my dose of amitriptyline not being increased. He told the NP how I had felt at the last visit too, and my doubts that they were taking me seriously. The NP wanted me to make another appointment to review my dosage. It was my understanding that he was going to do this over the phone weekly, but he needs the doctor's approval to prescribe this med. He also admitted that although he is sure I have fibro, the doctor doesn't seem to know much about it, or put much store in it. He (the doctor) has a special interest in neurology, and I think that is why he keeps wanting me to wait and get my reflexes tested all the time. But the NP has put in the referral to the rheumy. I thought they would have called sooner than this for an appointment, especially since I know that will be a few months wait time once I get the call. But at least I feel more comfortable again with my NP, that he is on my side and doesn't think I'm faking. My next appointment is October 10th, I couldn't get in any sooner.
In the meantime, my malic acid came in!! woohoo! I took only one pill for the last 3 days with no ill effects. I'm going for 2 today and tomorrow, then I'll start the 3 on Sunday when I have 3 days off in a row. I'm not too sure how I will take the second pill tomorrow when I work. I normally eat a sandwich on my commute to work at 3:30pm, then I have a snack around 9ish when I can get a few bites in while I work, usually some fruit with cottage cheese. How much food should I take with the supplement? I'm also a little nervous about not being able to go to the bathroom. Although my stomach has handled it well so far, I still do need to visit the facilities shortly after taking them, and that is something I can not do in public washrooms. And at work I don't always have time to go when I do feel the urge either. Oh, and even though I'm on such a small dose of amitriptyline, it has helped my facial pain so much! I have some days where I hardly feel it, most days it's very mild and only sporatic, with some sharp stabbing pain. It used to be moderate all day long, with longer bouts of stabbing pain, at times severe. Coincidence? All I know is I'm so relieved, and I'll stick with the med!
For you long time sufferers, how long did it take for you to accept this DD, and get used to your limitations, or how you felt from day to day? I had 2 great days last weekend, where I had no fatigue! and very little pain, just a mild ache in the legs! I was seriously doubting myself, and what I had gone through for the last 5 months. I knew my pain had been real, especially in the face, I knew my fatigue had been real. But how could it suddenly go away? Maybe there was another explanation? Maybe I had been making too big a deal out of little aches and pains after all? Why? That's all we want, is answers, isn't it? This DD changes so much, how do you get used to what happens to your body? Then late on the second day, it hit me all over again like a ton of bricks, but different this time (maybe it was adobe for a change, lol 
) I got dizzy, had an icepick headache, the ache came back in the legs, numbness in my arms and hands, and something new. I got worse travelling pain then I had felt before, not so much sharp, but it feels like I'm being punched, like a charleyhorse. And my bad knee hurts too now. On top of the regular ache in it, I now have what some of you have described as feelign as if the joint is being pulled apart. It reminded me, last year, I had a few days where I felt that, but the pain was so severe that my knee would buckle when I put weight on it. I had gone to emerg after a sleepless night, thinking I had tore it somehow, but it mysteriously went away when I go there! Anyway, I'm now getting used to this sensation. This travelling pain hurts more than the aching feeling, but I can handle it much better. It's not constant, adn I find it relieving to say exactly what hurts. That general achiness was getting me so down. It isn't very high on a pain scale, but being constant... well, I guess you al know what I'm talking about. So when this all started again, I went to lay down and had a good cry as I felt sorry for myself. I know there are much worse things out there to be struck with, but I can't help it. How do you prepare yourself for a life of pain? And I realize that I am one of the lucky ones, my pain really isn't all that high. But how can you face knowing you will hurt every single day of your life!? I can't wait until I move on to the next step of healing- acceptance, and leave the anger and sadness behind.
So I was trying to figure out what had changed to make my symptoms do a turn around like this. My fatigue and general achiness are much reduced, like I said. Is it the amitriptyline? I doubt it, as the dose is so low, and I think I would have noticed the change at the same time as my facial pain. The kids going to school? Even with dd only going part-time 3X/week, the boys aren't here to raise a ruckus. I have monents of quiet time which I'm so enjoying. The weather has turned cooler. Even though we didn't have the warmest of summers, the heat did make me so fatigued, especially when I was out in the sun. And I've started exercising and dieting again. The exercise is hard, I feel the burn while I do it and for some time afterwards, but I know it is helping. I alternate between light aerobics (I can only manage 20 minutes right now, but I'm hoping to build on that), standing pilates that really kill my legs, and ab pilates on the days I need to give my legs a break. I've cut out lots of fat and limiting carbs again, and most importantly I'm drinking water again. I've lost 2 pounds this week! My diet was never horrible, I love my veggies and whole grains, but I think the extra fat does contribute to my fatigue. I caved and had a chicken parm last night at work, and I felt so bloated and tired afterwards.
Sorry about the long post, and thank you if you managed to read through it! Any advice on the above is greatly appreciated. (((HUGS))) to all! It took me a long time to write this, so I have to go tend to the kiddos now. But I'll try to be back later and catch up on all the posts from this week. I also notice there are many new names out there, so a quick welcome to all the newbies! 
oops I forgot another question: Do you see after images more than you used to before fibro? My eyes have gone a little wonky since this began. It started with floaters, then halos around lights (more like auras really), trouble focusing, and now I only have to look at something for a second or two to have the after image burned in. TV is interesting now for sure! (And yes Sherrine, I know I should get my eyes checked again. 
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