joining the ranks - Fibromyalgia Message Board

dawn2 · 07-17-2001, 06:42 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!

Allen · 07-18-2001, 12:43 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, 04:30 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

dawn2 · 07-18-2001, 05:09 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!

Allen · 07-19-2001, 04:53 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