by, 01-10-2011 at 04:39 PM (764 Views)
For the past two days the only thought that consistently rings in my head is, "I want my mom." My mom is close by and easily accessible. But when I'm sick and in pain, somehow it seems like she can make me feel better. I've been cutting back on my prednisone significantly and it seems like every decrease in prednisone causes a dramatic increase in the pain of my fibromyalgia. Earlier today all I could think is, "God, please make my lower body go numb." I had forgotten how horrible the pain of fibro is. I remember back in the early days when I begged for pain killers and had to convince doctors that it's not about getting high, it's about wanting to live to the next day. Apparently fibromyalgia is not supposed to be as painful as mine is. I even went to Cleveland Clinic because I thought it must be bone cancer because nothing should be this painful this continually. They told me that I just have a very sever case and that it is systemic -- that means that not only is it in my joints and muscles, it's in my gastro system, and pretty much everywhere it can get. The really strange thing is the Lupus (or whatever I have) is far more tolerable painwise but the cognative dysfunction and dizziness really takes over. I'll have to talk to my doctor because when I take the prednisone, the pain level is so much more tolerable and while I'm quite literally stupid on so many levels, I can tolerate the idea of living another day. Without the prednisone, my body is healthier, my face no longer looks like some cartoon drawing and I know my bones are so much safer but the pain -- the pain is head to toe and the word agony doesn't even come close to describing how this feels. I have to take more pain meds, yet the doctors treat me like an addict. I want to scream "Live in my body for a couple of days and then ask me again if I really need the pain meds!"
It all seems so dramatic and I know that. But I plan to start a forum on how fibro affects other people. I want to know if what I feel is normal. You see, it's been awhile since I felt this pain. The prednisone really, really helps. I need to know if there's something else besides fibro that can cause this pain. All of these autoimmune diseases and blood issues and blood clots. And I know I'm not alone. I know I have a lot of "sisters and brothers" suffering on this site too. The frustration is terribly overwhelming.
Well, I'm off to ask about the fibro. Blessings to all and may you have a pain-free day!