dawn2
07-17-2001, 09:42 AM
Hi All:
It's official now. I was diagnosed yesterday with fibro/myofacial and possibly a secondary autoimmune disease to go along with it. (Waiting on bloodwork). I told my hubby that if I went into this doc and he told me either "I don't know" or "Just getting older" I was going to go into a tizzy! I have been misdiagnosed for 12 years. Needless to say, my frustration level has been quite high - I'm sure not helping my situation any. So after the doc confirmed it, I didn't know whether to cry because now I had an answer or because I didn't like the answer. It has been such a long road and I'm sure it won't always be a smooth one ahead. I plan on becoming as knowledgeable about this disease as possible. Fortunately, the doc is very open minded and knows his stuff. I want to thank those who have given some great advice earlier to me as I knew exactly how to present my case to the doc and he asked me all the right questions. Again, loads of thanks and joining the ranks!
It's official now. I was diagnosed yesterday with fibro/myofacial and possibly a secondary autoimmune disease to go along with it. (Waiting on bloodwork). I told my hubby that if I went into this doc and he told me either "I don't know" or "Just getting older" I was going to go into a tizzy! I have been misdiagnosed for 12 years. Needless to say, my frustration level has been quite high - I'm sure not helping my situation any. So after the doc confirmed it, I didn't know whether to cry because now I had an answer or because I didn't like the answer. It has been such a long road and I'm sure it won't always be a smooth one ahead. I plan on becoming as knowledgeable about this disease as possible. Fortunately, the doc is very open minded and knows his stuff. I want to thank those who have given some great advice earlier to me as I knew exactly how to present my case to the doc and he asked me all the right questions. Again, loads of thanks and joining the ranks!
Sponsor
Allen
07-18-2001, 03:43 PM
Hey Dawn: I'm both glad and sorry you get to join the ranks of the afflicted. It takes an average of 5 yrs for people with FMS to get an adequate diagnosis. Your case would make anyone frustrated. Hopefully, your doc will take your illness seriously. A question: are you getting adequate help for your pain. God bless, Al
DMS
07-18-2001, 07:30 PM
Hello Dawn,
I was also just recently diagnosed with fibro...I'm not sure about the myofacial part though. I have no advice to give you, but just wanted to say hello and to let you know I will be learning right along with you from all these wonderful people here on the board! Have a good day, Deanna
I was also just recently diagnosed with fibro...I'm not sure about the myofacial part though. I have no advice to give you, but just wanted to say hello and to let you know I will be learning right along with you from all these wonderful people here on the board! Have a good day, Deanna
dawn2
07-18-2001, 08:09 PM
Hi Allen/Deanna:
I know it's been a long and very frustrating time for me. Last time I was at the primary doc, he said everything was "fine" with the bloodwork. I said, "But I know I'm not fine. He looked at my chart and never commented back. So, I went out on my own and reading over this board sure had me convinced to pursue my gut feelings. The rhem doc seems to be (so far) quite good and very knowledgeable. I did get some meds for sleep, but I didn't ask for pain as yet. I need to have more reports come in and next time we meet, it's on my agenda. I do stretching 3 times daily (even before I knew what I had) and I use a heating pad each night. There are times when sleep doesn't happen at all or maybe an hour or two cause of pain. I won't hesitate to ask for something though. I just went through 2 months of horrible cluster migraines day in and day out(may or may not be related to the fibro - most likely is, as there are trigger points near a nerve close to the sinuses and this came on after a cold). No one gave me anything till the very end...and you know what...that day they gave me something for the migaines, it shrunk something (?)enough that it stopped the migraines!! GRRRRRR! I had 14 doctor visits, 2 emergency room visits, 3 blood-draws, and 3 cat scans. NO ONE KNEW and NO ONE gave me something till 9 weeks into this. If I had settled to take my primary doc's word on things, I wouldn't even have gotten this far. I won't even get into the misdiagnoses years before.....ahhhh! The thing that I find difficult (besides all the pain) is how everything in my life has been changed...things I once took for granted....nothing can be taken for granted again. I don't want to sulk about it, but there are days when I get mad...sad...frustrated...and then just acceptance. I just wish the doctors had listened to me sooner. I did read all the pros and cons about the meds for sleeping and pain. I slept last night for the first time in years without fighting it and looking at the clock as it rolls around another hour and toss and turn and ahhhh...you got the point! After those cluster migraines, pain is my biggest enemy! One thing the doctor emphasized to me was...you won't make any improvements (not meaning curing this!) if you don't get sleep. And he's right about that. Well, if I have any advice to anyone being new to all this, it's go with your GUT feeling...if you feel something is wrong, do NOT accept "your fine" from your doctor. Keep on looking!
I know it's been a long and very frustrating time for me. Last time I was at the primary doc, he said everything was "fine" with the bloodwork. I said, "But I know I'm not fine. He looked at my chart and never commented back. So, I went out on my own and reading over this board sure had me convinced to pursue my gut feelings. The rhem doc seems to be (so far) quite good and very knowledgeable. I did get some meds for sleep, but I didn't ask for pain as yet. I need to have more reports come in and next time we meet, it's on my agenda. I do stretching 3 times daily (even before I knew what I had) and I use a heating pad each night. There are times when sleep doesn't happen at all or maybe an hour or two cause of pain. I won't hesitate to ask for something though. I just went through 2 months of horrible cluster migraines day in and day out(may or may not be related to the fibro - most likely is, as there are trigger points near a nerve close to the sinuses and this came on after a cold). No one gave me anything till the very end...and you know what...that day they gave me something for the migaines, it shrunk something (?)enough that it stopped the migraines!! GRRRRRR! I had 14 doctor visits, 2 emergency room visits, 3 blood-draws, and 3 cat scans. NO ONE KNEW and NO ONE gave me something till 9 weeks into this. If I had settled to take my primary doc's word on things, I wouldn't even have gotten this far. I won't even get into the misdiagnoses years before.....ahhhh! The thing that I find difficult (besides all the pain) is how everything in my life has been changed...things I once took for granted....nothing can be taken for granted again. I don't want to sulk about it, but there are days when I get mad...sad...frustrated...and then just acceptance. I just wish the doctors had listened to me sooner. I did read all the pros and cons about the meds for sleeping and pain. I slept last night for the first time in years without fighting it and looking at the clock as it rolls around another hour and toss and turn and ahhhh...you got the point! After those cluster migraines, pain is my biggest enemy! One thing the doctor emphasized to me was...you won't make any improvements (not meaning curing this!) if you don't get sleep. And he's right about that. Well, if I have any advice to anyone being new to all this, it's go with your GUT feeling...if you feel something is wrong, do NOT accept "your fine" from your doctor. Keep on looking!
Allen
07-19-2001, 07:53 PM
Dawn: your story makes for horrifying reading and many of us relate to everything you said. Unlike many in our country who are paranoid about drug addiction, I view pain meds not as "being on drugs", but finding help and relief when properly managed. I may preach a lot about this, but opioid meds in numerous studies have helped people with rare cases of true addiction. Many with FMS would agree with the blessings of pain meds, despite their side effects(that makes life interesting). Hope you get the help managing your pain and getting your life back! God bless, Al
lj-111
07-25-2001, 11:01 PM
Originally posted by dawn2:
Hi All:
It's official now. I was diagnosed yesterday with fibro/myofacial and possibly a secondary autoimmune disease to go along with it. (Waiting on bloodwork). I told my hubby that if I went into this doc and he told me either "I don't know" or "Just getting older" I was going to go into a tizzy! I have been misdiagnosed for 12 years. Needless to say, my frustration level has been quite high - I'm sure not helping my situation any. So after the doc confirmed it, I didn't know whether to cry because now I had an answer or because I didn't like the answer. It has been such a long road and I'm sure it won't always be a smooth one ahead. I plan on becoming as knowledgeable about this disease as possible. Fortunately, the doc is very open minded and knows his stuff. I want to thank those who have given some great advice earlier to me as I knew exactly how to present my case to the doc and he asked me all the right questions. Again, loads of thanks and joining the ranks!
Prayer Warrior Strikes Again..... You are being hit with a prayer for healing & relief.. Hold on tight, devil hates it when somebody cares!!
lj
Hi All:
It's official now. I was diagnosed yesterday with fibro/myofacial and possibly a secondary autoimmune disease to go along with it. (Waiting on bloodwork). I told my hubby that if I went into this doc and he told me either "I don't know" or "Just getting older" I was going to go into a tizzy! I have been misdiagnosed for 12 years. Needless to say, my frustration level has been quite high - I'm sure not helping my situation any. So after the doc confirmed it, I didn't know whether to cry because now I had an answer or because I didn't like the answer. It has been such a long road and I'm sure it won't always be a smooth one ahead. I plan on becoming as knowledgeable about this disease as possible. Fortunately, the doc is very open minded and knows his stuff. I want to thank those who have given some great advice earlier to me as I knew exactly how to present my case to the doc and he asked me all the right questions. Again, loads of thanks and joining the ranks!
Prayer Warrior Strikes Again..... You are being hit with a prayer for healing & relief.. Hold on tight, devil hates it when somebody cares!!
lj
dawn2
07-26-2001, 09:47 AM
Al/lj:
There's one thing I value very much and that's the freedom to make choices. I believe if one chooses to use meds, that's fine. On the other hand, if one chooses to go natural, that's cool too. We are all individuals with the right to choose. Fortunately, my rheumie uses both. I know my mother has a very serious illness - narcolepsy with cataplexy and without her medication, her life would be extremely limited. Her meds are additive, but absolutely necessary. She too exhibits signs of fibro (although not officially diagnosed). Makes me wonder if the fibro caused the narcolepsy. There is a time and place for everything. Thanks lj - keep the prayers coming. I certainly need them along with many others. Thanks for your support.
There's one thing I value very much and that's the freedom to make choices. I believe if one chooses to use meds, that's fine. On the other hand, if one chooses to go natural, that's cool too. We are all individuals with the right to choose. Fortunately, my rheumie uses both. I know my mother has a very serious illness - narcolepsy with cataplexy and without her medication, her life would be extremely limited. Her meds are additive, but absolutely necessary. She too exhibits signs of fibro (although not officially diagnosed). Makes me wonder if the fibro caused the narcolepsy. There is a time and place for everything. Thanks lj - keep the prayers coming. I certainly need them along with many others. Thanks for your support.
pixiepoodle
07-26-2001, 09:14 PM
Dawn2:
You could not be more right about going with your gut feeling. No one knows your body better than yourself! The first rheumie I went to had an MRI done & blood work for arthritis. When I went for the followup he said everything checked out fine. When I first started having unbearable pain, I read every chapter in the American Medical Association's Family Medical Guide about the disorders of the muscles, bones, tendons and joints and my symptoms didn't fit any of the illnesses, yet I knew something was terribly wrong with my normal, hyperactive, healthy body. Shortly before going back for the followup, I read a small blurb in a medical magazine about an illness called Fibromylgia. The few symptoms listed described me and then it mentioned that it could be triggered by low thyroid. Bingo - I knew in that instant, I had Fibro since I had been diagnosed with low thyroid the year before. So when I asked the dr. at the followup if it was possible I had Fibro, he said absolutely no - that's just a filebasket label they put use when they can't figure out what's wrong with you. Then I asked him, well, what's wrong with me then? He said I don't know, I'm giving you drugs aren't I? I have never felt like slapping a dr. more than I did at that moment. I didn't want to keep taking narcotics, I just wanted to know what was wrong with me. The sad thing is that this dr. was a rheumie - he should be shot. Anyway, I was diagnosed w/in 3 mos. of the onset of pain because I then persued asking my thyroid dr. if she thought I might have Fibro and she said she thought it was very likely and she just happened to have a friend who specialized in it.
I had a somewhat similar experience years earlier with my uterus causing me severe pain about 20 days a month. I kept complaining to my gyno for about 4 years and he had me keep charts of my symptoms for months and months. He said everything appeared normal during my physical exams and lab tests. I moved away for about 3 yrs. and when I moved back, the pain was even worse since I was having stabbing pains in my stomach when I ovulated and lived on laxatives in order to go to the bathroom. He sent me for special internal tests at a hospital which only revealed I did not have endometriosis but did have some fibroids on my ovaries. He agreed to do some exploratory surgery, but told me the day before surgery, he thought I had something seriously wrong with my colon so he would do whatever he needed to do, as well as remove the fibroids. When I came to in the recovery room he said he could not believe how badly diseased my uterus was and that my ovary was beyond saving since it had too many fibroids to be able to remove them. Within 2 weeks of having the surgery, I felt like I had a new lease on life because I was pain free, but it made me feel angry that I suffered for so many years because no test could detect there was a problem. So all you "Fibroites" out there, keep on keeping on and educate your drs.
You could not be more right about going with your gut feeling. No one knows your body better than yourself! The first rheumie I went to had an MRI done & blood work for arthritis. When I went for the followup he said everything checked out fine. When I first started having unbearable pain, I read every chapter in the American Medical Association's Family Medical Guide about the disorders of the muscles, bones, tendons and joints and my symptoms didn't fit any of the illnesses, yet I knew something was terribly wrong with my normal, hyperactive, healthy body. Shortly before going back for the followup, I read a small blurb in a medical magazine about an illness called Fibromylgia. The few symptoms listed described me and then it mentioned that it could be triggered by low thyroid. Bingo - I knew in that instant, I had Fibro since I had been diagnosed with low thyroid the year before. So when I asked the dr. at the followup if it was possible I had Fibro, he said absolutely no - that's just a filebasket label they put use when they can't figure out what's wrong with you. Then I asked him, well, what's wrong with me then? He said I don't know, I'm giving you drugs aren't I? I have never felt like slapping a dr. more than I did at that moment. I didn't want to keep taking narcotics, I just wanted to know what was wrong with me. The sad thing is that this dr. was a rheumie - he should be shot. Anyway, I was diagnosed w/in 3 mos. of the onset of pain because I then persued asking my thyroid dr. if she thought I might have Fibro and she said she thought it was very likely and she just happened to have a friend who specialized in it.
I had a somewhat similar experience years earlier with my uterus causing me severe pain about 20 days a month. I kept complaining to my gyno for about 4 years and he had me keep charts of my symptoms for months and months. He said everything appeared normal during my physical exams and lab tests. I moved away for about 3 yrs. and when I moved back, the pain was even worse since I was having stabbing pains in my stomach when I ovulated and lived on laxatives in order to go to the bathroom. He sent me for special internal tests at a hospital which only revealed I did not have endometriosis but did have some fibroids on my ovaries. He agreed to do some exploratory surgery, but told me the day before surgery, he thought I had something seriously wrong with my colon so he would do whatever he needed to do, as well as remove the fibroids. When I came to in the recovery room he said he could not believe how badly diseased my uterus was and that my ovary was beyond saving since it had too many fibroids to be able to remove them. Within 2 weeks of having the surgery, I felt like I had a new lease on life because I was pain free, but it made me feel angry that I suffered for so many years because no test could detect there was a problem. So all you "Fibroites" out there, keep on keeping on and educate your drs.
JB*
07-27-2001, 01:56 PM
Hi Dawn
Just wondering what your thyroid tests showed? Did you do the TRH? And the "right" cortisol(adrenal) test?
JB
Just wondering what your thyroid tests showed? Did you do the TRH? And the "right" cortisol(adrenal) test?
JB