Guest guest Posted May 2, 2008 Report Share Posted May 2, 2008 I've always thought to myself when I read the statement " you will get no worse " Yeah right, maybe when I'm dead it won't get any worse... Actually told a dr or two that LOL I went from a person who never sat down, always doing something, to barely being able to function in my own home... somedays it's too much to even get out of bed... The last 5 years, I have just progressively worse. I know I will continue to decline... I don't see it just stopping one day, saying oh, I can't get any worse, because medical science says I don't... There are several phrases dr's and medical science say about fibromyalgia that really stick in my crawl... " It's all in your head " " It won't get any worse " " It isn't fatal nor cripling " " Muscle cramps are not part of this disease " " it's not real pain " I actually told a dr, when he said it was all in my head... Yep, your right, it is all in my head... my brain reads those d@mn pain receptors, that don't work right... but ya know what's funny, everyone's " head " is what tells them they have pain... just because I'm cross wired, doesn't mean it isn't as real of pain as everyone else feels. I asked him, if your car has a problem and is cross wired... do you just tell it, it's all in it's " brain " and leave it alone? No, you fix the problem before it totally quits on you... I left this dr speechless and needless to say, I never went back and saw him again. Fact is, they don't know enough about this disease to have the answers... it effects everyone differently... Instead of looking to medical science for the answers, they need to start talking to the ones who live with this horrible monster everyday.. and instead of using all their energy to say there is no such thing as fibromyalgia, use their energy to find a cure!!!! One more thing... who ever was talking about the hoover round... LMAO I want one that is black, with silver... I'm calling it the " Intimidator " of course after my favorite nascar driver of all time, Dale Earnhardt I have to tell you guys, I got up this morning hurting so bad from the physical exams and testing yesterday... really down in the dumps.. until I opened my e-mail and started reading the posts... I now have a smile on my face and the world doesn't seem so bad... thanks everyone! I'm really glad I joined this group!! I hope everyone has a really good day! *HUGS* > > Good Morning Everyone, > I have a question... In all the books I've read and web-sites I've > checked out, they say that you will get " no worse " with fibro. Some > days will just be better or worse than others. But my symptoms > gradually kept getting worse, that's why I eventually went to the > doctor. And now, every now and then, new symptoms seem to creep up on > me. Does that make sense? Is anyone else experiencing the same things > and did your doctor tell you that you would get " no worse " ? > Thanks and I hope everyone has a great Friday! > Lots of Hugs, > Kristi > Breezewood, PA > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2008 Report Share Posted May 3, 2008 ,i have said it before and i will say it again , great minds think alike , your comments about pain and Dale are right up my alley, on the fibro pain side ,i used to sit a cry , the only thing that kept going then was a jack russell named Rosie , she used to stand in my lap and lick my tears , when i first got fibro and was told , you can`t be in pain ,you look so healthy ,yeah! right , getting ready to rain here i hurt and my hands are so cold i could freeze a soda pop about now , talk to you later Ethel Behold the turtle , he who makes slow progress wins the race ! Re: No Worse... > I've always thought to myself when I read the statement " you will get > no worse " Yeah right, maybe when I'm dead it won't get any worse... > Actually told a dr or two that LOL > > I went from a person who never sat down, always doing something, to > barely being able to function in my own home... somedays it's too > much to even get out of bed... The last 5 years, I have just > progressively worse. I know I will continue to decline... I don't > see it just stopping one day, saying oh, I can't get any worse, > because medical science says I don't... > > There are several phrases dr's and medical science say about > fibromyalgia that really stick in my crawl... " It's all in your > head " " It won't get any worse " " It isn't fatal nor > cripling " " Muscle cramps are not part of this disease " " it's not > real pain " > > I actually told a dr, when he said it was all in my head... Yep, your > right, it is all in my head... my brain reads those d@mn pain > receptors, that don't work right... but ya know what's funny, > everyone's " head " is what tells them they have pain... just because > I'm cross wired, doesn't mean it isn't as real of pain as everyone > else feels. I asked him, if your car has a problem and is cross > wired... do you just tell it, it's all in it's " brain " and leave it > alone? No, you fix the problem before it totally quits on you... I > left this dr speechless and needless to say, I never went back and > saw him again. > > Fact is, they don't know enough about this disease to have the > answers... it effects everyone differently... Instead of looking to > medical science for the answers, they need to start talking to the > ones who live with this horrible monster everyday.. and instead of > using all their energy to say there is no such thing as fibromyalgia, > use their energy to find a cure!!!! > > One more thing... who ever was talking about the hoover round... > LMAO I want one that is black, with silver... I'm calling it > the " Intimidator " of course after my favorite nascar driver of all > time, Dale Earnhardt > > I have to tell you guys, I got up this morning hurting so bad from > the physical exams and testing yesterday... really down in the > dumps.. until I opened my e-mail and started reading the posts... I > now have a smile on my face and the world doesn't seem so bad... > thanks everyone! I'm really glad I joined this group!! > > I hope everyone has a really good day! > *HUGS* > > > > >> >> Good Morning Everyone, >> I have a question... In all the books I've read and web-sites I've >> checked out, they say that you will get " no worse " with fibro. > Some >> days will just be better or worse than others. But my symptoms >> gradually kept getting worse, that's why I eventually went to the >> doctor. And now, every now and then, new symptoms seem to creep up > on >> me. Does that make sense? Is anyone else experiencing the same > things >> and did your doctor tell you that you would get " no worse " ? >> Thanks and I hope everyone has a great Friday! >> Lots of Hugs, >> Kristi >> Breezewood, PA >> > > > > ------------------------------------ > > 1. While it is wonderful to share our experiences with everyone on the > list as to what treatments do and don't work for us, pls always check with > your dr. Some treatments are dangerous when given along with other meds > as well as to certain health conditions or just dangerous in general. > > 2. If you are in a difficult situation (doesn't matter what it is) pls > don't be afraid to ask for help. It is the first step to trying to make > that situation better. > > 3. To unsubscribe the e-mail is: > Fibromyalgia_Support_Group-unsubscribe > > 4. Also, it is not uncommon for more than one member to be feeling bad at > the same time when it comes to flares and b/c of that potentially take > something another member says the wrong way. And that includes the things > that one member may find funny (even if it's laughing at fibro itself) > even though we who deal with illness whether one such as fibro or multiple > illnesses try to keep a sense of humor. > > 5. Pls let's be gentle with each other, and if you are having a bad day > pls let us know so that we can do our best to offer our support. > > Have a nice day everyone. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2008 Report Share Posted May 3, 2008 This disease definitely gets worse. It seems like mine started once a year in spring, then twice a year - spring and fall, then once every two months, then once a month and now it's with me all the time. I just have a few good days and flares that last 5-7 days at a time. When this first started, my doctors kept checking me for diabetes and running other blood tests. They never found anything. I even went in on days when the energy plug was pulled and my whole body would cramp. Nothing ever showed up. I went through severe muscle spasms, anti-depressants, and then muscle twitches that started in one eye, moved to the lips, then lower and all over. My weight jumped 15 pounds in two weeks and my doctor just told me to go on a diet. MRI's, CT Scans, more blood tests, still nothing. The one day my doctor was out and another doctor met with me. He read blood tests that my regular doctor had read and said were fine. Only he thought my rh factor was too high and sent me to a rheumatologist. After two visits I was diagnosed with fibro. Mind you this took 8 years. At that time I was still active, planning and hosting large group activities, etc. I hardly got three hours a night of sleep. Over the course of the next year I started having spells that would put me in bed for several days. I got to a point where I would just sit and watch tv on the weekends because I was afraid if I exerted myself I would end up back in bed. I finally got to a new rheumatologists office and he respected my decision not to take anti-depressants or anything addictive. He put me on muscle relaxers so I could sleep. I always thought it was my racing mind keeping me awake. It turned out I was in too much pain to sleep and the muscle relaxers have been a blessing. I sleep all night now. I take d-ribose and it has given me energy and made it possible for me to stop taking etodolac which hurt my stomach and made me gain water weight. I have been gaining weight steadily and I'm really not happy about that. It would be nice to find someone to walk/work out with, but I'm like most people in this group who pretty much lost all their friends when they got sick. > >> > >> Good Morning Everyone, > >> I have a question... In all the books I've read and web-sites I've > >> checked out, they say that you will get " no worse " with fibro. > > Some > >> days will just be better or worse than others. But my symptoms > >> gradually kept getting worse, that's why I eventually went to the > >> doctor. And now, every now and then, new symptoms seem to creep up > > on > >> me. Does that make sense? Is anyone else experiencing the same > > things > >> and did your doctor tell you that you would get " no worse " ? > >> Thanks and I hope everyone has a great Friday! > >> Lots of Hugs, > >> Kristi > >> Breezewood, PA > >> > > > > > > > > ------------------------------------ > > > > 1. While it is wonderful to share our experiences with everyone on the > > list as to what treatments do and don't work for us, pls always check with > > your dr. Some treatments are dangerous when given along with other meds > > as well as to certain health conditions or just dangerous in general. > > > > 2. If you are in a difficult situation (doesn't matter what it is) pls > > don't be afraid to ask for help. It is the first step to trying to make > > that situation better. > > > > 3. To unsubscribe the e-mail is: > > Fibromyalgia_Support_Group-unsubscribe > > > > 4. Also, it is not uncommon for more than one member to be feeling bad at > > the same time when it comes to flares and b/c of that potentially take > > something another member says the wrong way. And that includes the things > > that one member may find funny (even if it's laughing at fibro itself) > > even though we who deal with illness whether one such as fibro or multiple > > illnesses try to keep a sense of humor. > > > > 5. Pls let's be gentle with each other, and if you are having a bad day > > pls let us know so that we can do our best to offer our support. > > > > Have a nice day everyone. > > Quote Link to comment Share on other sites More sharing options...
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