OK so I have fibro Chronic Meyofacial Pain syndrome

Discussion in 'Fibromyalgia Main Forum' started by rosemarie, Aug 9, 2006.

  1. rosemarie

    rosemarie Member

    Now I know what it is that I have and that it is going to keep causing me pain. I would like to know just what started all of this.

    I know as a small child I had horrable leg aches and was told to take Vitiaman C and asprin. Then as a teenager my knees started to bother me as did the female monthlies.

    I started to get a cough that was a dry hacking cough, it is so hard and dry and I sound somewhere in between croup and having a smoker's cough although I have never smoked.


    I get this cough several times in a year , along with it I get Chostochrinditis {SP} and then it feels like I have a elephant sitting on my chest , sometimes I swear it is jumping up and down.


    I have spells when I cough and I will cough for a couple of hours and the out of no where it stops and I don't cough for a couple of days .

    And when I am starting to think I am done with it BOOM is it back with a vengance. I don't run a fever, I have a really LOW body temp anyway 96.7 so when I am at the NORMAL BODY TEMPTURE 98.6 I really have a fever.

    I am the worlds biggest klutz and can and will trip over any thing including my own shadow. I have broken my wrist twice and the last time it was because I tripped over the side walk and fell palms down and I shattered my left wrist so badly that it took surgery and a titainum plate and 6 screws to put me back together again. { I guess that Humpty Dumpty and I have lots in common only I can be put back together again and he can't}

    I once could work a full time job and take care of my daughter all by my self and still have energy to go out and date and take my daughter to a lake and play on the beach.

    But now I could not do that with my grandson's. I don't have the energy or the desire to sit in the hot sun and watch the kids run and chase after the baby. I would be so tied that I could not move for weeks or so it would feel like to me.

    I guess I am trying to find out what itis aobut me that started all of this cycle of pain? What happened to me that set it off? Did I not eat right as a child , or not get enough exercise? I don't know.

    Some times when I am hurting so much I really want to know why did this cycle of pain happen to stay with me? I thought after my hyester it would go away no such luck , there now were other things that caused my pain.

    NO matter how much I read about fibro and CMP I can't find a reason for it. As you know there are still lots of doctors that think this pain is all in your head and that if you had some counceling the pain would go away. Or if you put me on antidepressants I would be so much happier. But that is not the case with me.

    Antidepressants only turn me in to the wicked witch of the west. only the Witch is really spelled with a B instead of a W. I get so angry when I have been on Zoloft, I wanted to scream and yell at my daughters just because they were there .They didn't have to do any thing except be in the same foom with me.

    I hurt my girls feelings so much while I was on antidepressants and now that I take pain meds that are strong Narcoitcs they hate that. AS does my husband.


    I don't get it am I to just accept this pain and live with it and not take the pain meds that make it so that I cna do some of the things I want to do? Is taking narcotic pain meds so bad? Does taking them make me a bad person? Or am I just another Drug seeker/ or addidcted to them?

    I know I am asking questions that there are no anwsers for but I so want to understand why do I have to live with this. Yes I know that there are far worse things in life that I could have.And I have family who have had some of those health issues.

    And they surviveed them but now they are in pain as well but they are alive. So they have a differnt out look about pain than I do.

    For my cousin who had IBC {Inflammority Breast Cancer} the fact that she is having pain now makes her feel alive and she knows that at any moment that her cancer could come back . But so far she has past the 5 year mark . But for the kind of breast cancer she had it does not have a limit that says ok your cured , your in remission now. AS she says at this point I am cancer free but that could change.

    When I talk with her I feel like I am being a big baby and whinning about this pain I have .She almost lost her life and I am whinning about pain?

    What is wrong with me? She says that I am being to hard on my self that what I have and what she went through and is going through are 2 different things and they are not the same thing or even in the same ballpark.


    She had lots of pain and has neropathy now and she is in pain too. But she does not take much for her pain. But as she says it is her choice. WE have seen each other in the past couple of years and we both have fibro now. But with her fight for her life the fibro wasa put out of her head and mind and body as she went through chemo and surgery, and radiation and they all caused her differnt problems.
    But they were her problems she reacted diffently that other patients with her kind of cancer did.

    She tells me that her fibro and mine are differnt and not that same. Our pain levels and how we react to pain is totally different. And who know's why?

    I have reached a point where there is not a day where I don't hurt some place and I have days where just getting out of my bed is an effort to do. And yet I look at life diffently than some. I feel so much compassion for you who have more problems than I do. And I want to reach out to tell you that you will be fine and that your life is worth so much .

    I try not to judge people as I don't want them to judge me. I know that it is hard for those who don't have the fibro and CMP as well as bulging disc's , arthritis, bad knees, facet syndrome, radiopathy in my lumbar spine,arithitis in my left wrist,degeneritive dis disease, spinal stenosis, gee I sound like I am falling apart. And I feel like that some days as well.

    I don't know if I am making any sence or not. I just felt like I had to write this and tell you how I feel. I don't feel like this every day .

    I have happy days and moments that I cherish so much and I see that my life is so worth while I only wish that it didn't have to hurt so much. I have 3 beautiful daughters , 2 are married , 1 has a steps on who is 8.And my youngest daughter has a 16 month old boy and is expecting another baby in Jan. My middle daughter is a nanny for a TV person in Ct. And she is not married but hopes to be one day and have her own family.

    I love watching my little grandson as he runs around the house , moving so freely and when he falls the screams are from being frustated that he can't do some thing not because he is hurt. I see how much he can do now and I know that as he grows he will do so much more in his life. He is a smart little guy.

    Last Sunday they were at my Mom's and he found a magnet that went on the fridge, he played with it for a minute adn then looked so seriously at it and smiled and took off running in to the kitchen and put it on the fridge. HE was smiling so big , and when I took a magnet from a higher place and put it by his he took it off .

    I know that I have alot of really good things to look forward to do in my life I Just wish that I could do the things I have done and want to do with out having pain take over my life some days as well as the fatique that goes with this DD.

    Sorry for writing this novel here, I really didn't mean for this to be so long. But thanks for the time and for your thoughts. This group brings me alot of joy and happiness and so much understanding that I am so thankfull to all of you for just being you. And for putting up with me and my novels.

    Thanks so much , HUGS TO ALL,
    Rosemarie
  2. mrpain

    mrpain New Member

    Just because someone else is in worse shape than you, doesn't mean your not suffering. Yes there are people who have had every type of illness or injury possible, and they are suffering as well. And I pray for them and wish them the very best. And if I can help, I would absolutely do so. But that doesn't make our pain and suffering null and void.

    It's easy for me to feel guilty because of this very thing. I'll get to thinking how blessed I am and how bad others have it. And how much people are suffering all over the world. But yet, my reality is, my pain continues, sometimes severe, and the fatigue can get unbearable. The brainfog is thick, can't sleep at nights, and get up the next morning to go thru it all again.

    Minute by minute, hour by hour, and day by day, and the pain and symptoms continue. So I understand where your coming from, and sometimes we just have to do whatever is necessary and that may mean taking pain meds. or whatever.

    It may not be what we want, but it may be what we need. I don't like it either, and like your family, mine doesn't like it either, although they do support me..Also; certain antidepressants make me angry too, so I try to stay away from them. I'm trying sam-E for now, but that may not last.
  3. rosemarie

    rosemarie Member

    Please will you bump this up so that others may have a chance to respond to this post. Thanks for your help /Rosemarie
  4. wkirk87

    wkirk87 New Member

    You do ask a lot of unanswerable questions, so I'll just try to answer what I can.

    "I guess I am trying to find out what itis aobut me that started all of this cycle of pain? What happened to me that set it off? Did I not eat right as a child , or not get enough exercise? I don't know."

    So far no one knows, but don't blame yourself.

    "NO matter how much I read about fibro and CMP I can't find a reason for it. As you know there are still lots of doctors that think this pain is all in your head and that if you had some counceling the pain would go away. Or if you put me on antidepressants I would be so much happier. But that is not the case with me."

    Ugh, don't get me started with bad doctors. If a doctor doesn't try to help you he/she simply isn't a doctor. You need a doctor who will try to alleviate your pain otherwise you'll be stuck with it forever. Good luck!

    "I don't get it am I to just accept this pain and live with it and not take the pain meds that make it so that I cna do some of the things I want to do? Is taking narcotic pain meds so bad? Does taking them make me a bad person? Or am I just another Drug seeker/ or addidcted to them?"

    You already know the answer to this. It's quite obvious, actually, and if your family and/or doctor cares about you they'll support you in doing so. It may take some convincing though.

    "When I talk with her I feel like I am being a big baby and whinning about this pain I have .She almost lost her life and I am whinning about pain?"

    She reminds me of me. I'm to the point where I believe life in pain is worse than death. It of course depends on your beliefs, but perhaps you can't feel pain after you die. Frankly, you should complain, otherwise everyone will assume nothing's wrong and just think that you're 'tired/lazy all the time'. You need to speak up.

    "What is wrong with me? She says that I am being to hard on my self that what I have and what she went through and is going through are 2 different things and they are not the same thing or even in the same ballpark."

    Wow, sounds like me again. She's right: you only know what you've been through and she only knows what she's been through, so neither of you knows what each other's been through. I have a friend who developed Regenerative Arthritis, which is worse than normal arthritis: the pain literally comes from his bones grinding and flaking chips of bone off every time he bends a joint. Sounds horrible to me, but that's all it is to me: a series of words. Only he knows the pain associated with those words. Likewise, only you know your pain from Fibro and only she knows her pain from Cancer. Also, I'll bet she doesn't mind you 'whining' about this pain. I mean, you're going what she went through. What would bother her is 'whining' about stupid unimportant ****, which your pain is definitely not.

    "She tells me that her fibro and mine are differnt and not that same. Our pain levels and how we react to pain is totally different. And who know's why?"

    Correct. CFIDS/CFS/FM/ME is still a VERY unknown disease. So far they don't know ****, except for the fibro part. Some people don't have the fibro pain at all, others very little, others tremendously, etc. You see, we're a big moshpit of the miscellaneous sufferers whom don't have something to explain the symptoms. There was one significant breakthrough a while back, but it only affected a portion of the sufferers, the portion whom had the fibro pain and are now diagnosed with FM instead of CFIDS/CFS/ME. I don't know much about the fibro pain, but from reading here it seems as though something called 'pressure point massage' is the most effective treatment for the fibro pain and the restless sleep that derives from the fibro pain. I don't know anything about it but I'm sure you can make another topic and a bunch of people will reply and be more than willing to help.

    "I have reached a point where there is not a day where I don't hurt some place and I have days where just getting out of my bed is an effort to do."

    It sounds like you have the fibro pain, so look into the pressure point massage for relief. The fibro pain's caused by the nervous system somehow and thus hurts all over, so that's why I say it sounds like you have it ('hurt someplace').

    In summary, good luck, there are others like you, always come for help, and I think that's it. Hope I helped in some way!