Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Hi everyone, most of you don't know me, as I haven't been on here in a long time. For the others that do, I have always thought of you guys. But found myself overwhelmed in pain/fatiguqe and felt "of no help to others", so I bounced off. I hope I'm welcomed back.
I have interesting news. After 11 years of constant muscle,joint, migraines, & constant fatigue with just a DX of Fibromyalgia when all the other basic testing came out neg, and of course I had the required tender spots. But, since I have loads of other Autoimmune Diseases already, I honestly felt it was just not just Fibro that was causing all this pain and constant thirst, etc. So many doctors, so many tests, so many waiting rooms, so many tears of dissapointment & frustration. Drs. that were rude,uncaring,confused, test happy, that made me give up and then I'd try again. Then finally I started to request copies of my results and read them myself and make a file. I saw that I was testing very high for Sjogrens and RA. I asked the drs and they said,it's only dry eyes and mouth. I did more Dr. searching and was told by another that I had MS due to a recent Brain MRI that showed 15 lesions. Then finally I looked online and found a Dr. that specialized in Autoimmune and Sjogrens. After deep extensive testing, it is an absolute that I have Sjogrens. I still also have Fibro, but was told that I am the "Poster Child" for Sjogrens since all tested pos. for Lupus, RA, etc. and have probably had it since I was 15 yo. I am now 53. If Sjogrens is not treated it attacks the joints, muscles, brain (explains MRI), organs, and throws your body into complete chaos. Like I said, he still says I have Fibro, but after a regimine of meds he assures me that I will live relatively pain-free. I asked why this pos. high for Sjogrens was consistantly pushed aside by other drs and was told that they don't understand it, and obviously need to continue to re-educate themselves. So, I will end this novel with a "Don't lose hope", "Research your test Results"(I am not a computer wiz,, since I just learned the computer 4 years ago). But please don't give up, knock the doctors off their pedestals and look at them as real people that "just might not know". Don't let them humiliate you, push you along their cattle-like assembly line. Ask questions, ask for copies of all tests (they are yours). And don't hold back the tears of hope, fear, pain, frustation, happiness, and joy. We are all warriors, since we deal with this pain every day!!! Warm, Loving Hugs to All of YOU!!!
I have interesting news. After 11 years of constant muscle,joint, migraines, & constant fatigue with just a DX of Fibromyalgia when all the other basic testing came out neg, and of course I had the required tender spots. But, since I have loads of other Autoimmune Diseases already, I honestly felt it was just not just Fibro that was causing all this pain and constant thirst, etc. So many doctors, so many tests, so many waiting rooms, so many tears of dissapointment & frustration. Drs. that were rude,uncaring,confused, test happy, that made me give up and then I'd try again. Then finally I started to request copies of my results and read them myself and make a file. I saw that I was testing very high for Sjogrens and RA. I asked the drs and they said,it's only dry eyes and mouth. I did more Dr. searching and was told by another that I had MS due to a recent Brain MRI that showed 15 lesions. Then finally I looked online and found a Dr. that specialized in Autoimmune and Sjogrens. After deep extensive testing, it is an absolute that I have Sjogrens. I still also have Fibro, but was told that I am the "Poster Child" for Sjogrens since all tested pos. for Lupus, RA, etc. and have probably had it since I was 15 yo. I am now 53. If Sjogrens is not treated it attacks the joints, muscles, brain (explains MRI), organs, and throws your body into complete chaos. Like I said, he still says I have Fibro, but after a regimine of meds he assures me that I will live relatively pain-free. I asked why this pos. high for Sjogrens was consistantly pushed aside by other drs and was told that they don't understand it, and obviously need to continue to re-educate themselves. So, I will end this novel with a "Don't lose hope", "Research your test Results"(I am not a computer wiz,, since I just learned the computer 4 years ago). But please don't give up, knock the doctors off their pedestals and look at them as real people that "just might not know". Don't let them humiliate you, push you along their cattle-like assembly line. Ask questions, ask for copies of all tests (they are yours). And don't hold back the tears of hope, fear, pain, frustation, happiness, and joy. We are all warriors, since we deal with this pain every day!!! Warm, Loving Hugs to All of YOU!!!
Like I say, some days I live with it, and some days I suffer from it. Today I am suffering. I do not want to be doped up all day but can't help it:( it sucks!
What do you do for pain?
You sound excited and that I'm sure excites us all. I had an exciting visit with an acupuncturist that I'm hoping works out for me and my pain.
I so agree with you assesment of the medical field and how they treat us and humiliate us and brush us aside.
Best wishes
Fibrogram
I have missed you.
I am so happy that you finally have a diagnosis that ou can work with. Bravo for you.
Have to look out for yourself. To drs we are just another patient, another number and money in their pockets.
"On average, it takes nearly seven years to receive a diagnosis of Sjgrens syndrome." :(
The doctor's reaction to your tears might be the most heartless doctor-to-patient comment I've ever heard (and I have heard of many bad doctors).