serand4

Medicine Confusion

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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!
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  1. tgal's Avatar
    Hey Serena,

    I understand the love/hate relationship with steroids. I actually wrote to someone about that today. I know that steroids are not good for us but it is one of the things that makes me feel better too. I really do understand what you are going through and I hope things get better for you soon. Until then please remember that we are here for you
  2. Shining Star's Avatar
    Hey Serena, no none of it is imagined. It is all very real. The bone crunching, mind numbing pain is a result of very vulnerable nerves. There are so many invisible nerve centres all over the body and fibro seems to plug into them like a generator. Not being able to sleep as a result of pain and steroid hyperactivity makes us further vulnerable to Fibro.
    I was diagnosed with Fibro in 2001 after four years of SLE, and put on a codeine based painkiller, called dihydrocodeine. It's strong but along with sleeping tablets, I managed to break the cycle of excrutiating pain. So that would be my solution to you - strong painkillers plus sleeping tablets for an intense period of time, until your cycles of pain start to break and your mind starts to relax enough to breathe again.
    What do you think? Good luck. x
  3. serand4's Avatar
    I'll bring that suggestion to my doctor on Thursday, Shining Star. There has got to be a better way to manage this pain without destroying my body. Wow, that's interesting that another woman, shining star and I all were diagnosed with an autoimmune illness four years after being diagnosed with fibro. There has to be a real connection to those two. Today I spent the day with my son running errands and even though I took a perocet half way through, my whole body was screaming in pain by the time we got home. I just don't understand why there are no long-term pain medicines for an illness like this. When I see my doctor, we are going to have a heart to heart. I don't mean I'm going to yell or anything, I just have to get her to understand that I truly am not trying to get high. I don't drink or smoke. If I wanted to get buzzed, I could -- it's not my thing. I just want to have some quality of life sometime in the near future. Oh, and the prednisone only made me hyper for about three weeks. I would kill to have something give me energy! I did find the 5-hour energy drink and while it's horribly expensive, it works for me but I have to save it for special occasions due to the cost.

    Anyway, I will definitely bring up the dihydrocodeine. I also am getting trigger shots so they should help. Thanks for the support guys. I truly don't know where I'd be without this group of people. Unless you're going through it, you don't understand it and don't believe it. If I hear my mother say, "now Susan!" when I say how bad the pain is or my dad dismiss the whole concept of pain management, I will definitely scream!

    Take care and have a great night!