Hi Bon,

1. I was tentatively diagnosed based on the symptoms of pain and fatigue at first. My PCP ran multiple tests to exclude other conditions. Then my PCP did the tender point exam.
2. I had 11 tender points, which is the minimum for diagnoses on the initial exam. She sent me to a rheumy, who had a much better idea of how to do the test and found exquisite tenderness in all 18 areas. A second rheumy later duplicated those results.
3. My rheumy believes I have had fibro for at least 5 years. I do not believe I would have immediately passed the tender points exam on the first try.
4. If it did take at least 5 years, which I believe it did, it was because the doctors never thought about that diagnosis. I was ill multiple times with headaches (I am prone to migraines, but it WAS NOT a migraine), nausea, sweating, pain, fatigue, and elevated temp and heart rate. Everyone just said "I don't know why you feel this way. Go home and rest."

I was told that you can have the tender point exam multiple times to cumulatively get the 11 spots, because it is rare that all tender spots are triggered at once. I happen to have severe fibro, so more of spots are active at any given time. That is how it was explained to me.

Good luck!

bpdistough, Thank you, I never heard of it being rare to have all tender points at once, that makes sense though. It reminds me of when they found 4 lesions on my brain but they weren't active at the time so they didn't give me a MS diagnosis. Interesting! (((hugs)))

1. My understanding is that Fibro is typically a diagnosis of exclusion, because the same symptoms can be found in other dx's. That's how mine was - doc says, sounds like Fibro from all my symptoms and the final test to dx was for rheumatoid arthritis, which came back negative. However, I have a few things going on with the skin on the backs of my hands not healing (scab still there from blood draws in December despite using Neosporin daily) and some scaly thickened skin on the top of my feet, which appear to be autoimmune related, so we are going to re-test for RA when I re-test after my Vit D script is done.

2. She didn't test all 18, and I was only positive for maybe half of the ones she did. Not really sure if she even hit them exactly right, but she didn't give much weight to that, as previous poster said, they might not all be active at once.

3. No idea :)

4. It took me until December last year. I think primarily it took so long because I was going to the PMD for TMJD pain, and really didn't even complain much about all my symptoms. My TMJD pain is so much more severe than the FMS and there's really nothing much I can do to alleviate it. For one, I actually thought my body hurt so bad just because I was "tense" because of my jaw pain. On top of that, I had a hard time going to the doctor and "whining" about my pain because of my experience with my previous doctor that I didn't want to complain about "too many" symptoms. Sadly I don't think I helped myself by being that way.

Trix, thank you. My last test was for RA, it came back negative, only showed borderline high inflammation. He said he doesn't think it is Fibro because of not enough tender points. Maybe I will see another Rheumy later. Its been about a year for me since the onset of my symptoms. I have degenerative disc disease though. Time will tell I guess, I just hate the waiting.

Not everyone with fibro has all the tender points. Some people have none. During my research I believe I read they are trying to do away with the tender points for a diagnosis of fibro.

http://onlinelibrary.wiley.com/store/10.1002/acr.20140/asset/supinfo/ACR_20140_sm_Appendix.pdf?v=1&s=18b6608d20e408d4abad94036b8530714b305043

I don't know if this link will show but it is the new diagnostic criteria for fibro. It uses a widespread pain index and symptom severity to rate you.

And Bon, like you i have not been diagnosed. Doing the check on myself with the outline I fell well within the range for a fibro diagnosis.

Great! Thanks guys.

Melisa, I fell right into the range for Fibro from your link also. TY, I guess the Rheumy I went to didn't have the new criteria.

Wow, I fell at the top end for both categories!

I hope I can help you. I had 18 of the 18 pressure points. I saw 3 different doctors just to make sure and back when I was diagnosed, not many believed it even existed. I was diagnosed the same day when I was at the doctors office. My worse problem is it's taking me a long time to get out of denial. I still get in denial at times. I don't know why either. I hope you get your questions answered here hon. Hugs GB

P.S. there was of course more then just the pressure points that were used to confirm it, such as chronic fatigue and wide spread pain. Hurting one spot one day and somewhere else the next. I have a book called Fibromyalgia for Dummies and I highly recommend it for anyone who really wants to get to the bottom of a lot of their questions.

Bon: When I was dx'd, the pressure points were not as clearly defined but I had several. (It was 1995, I don't recall).

I was dx'd by a rheumy who had FM on my first visit to him. It took about 18 months total; it crept up on me. I had fairly gradual onset of the FM; fatigue came first for me. I was referred to my rheumy when the fatigue and the increasing pain became a puzzle to the GP.

Thanks so much gramybear and LeoX3, I'm going to order that book Fibro for Dummies. (((hugs)))

As others have said, because it's a diagnosis of exclusion it took a long time to get official diagnosis. For me the official diagnosis was important. I'd never heard of fibro (1989) and found the preliminary docs I saw dismissive of symptoms w/ no testable explanation. It took nearly a year after I was too sick to work to finally get referred to a specialist who coughed up the answer. But the meds didn't work well on me.

These days pressure points are no longer even considered a diagnostic criteria. I have not idea how many I have. I have survived mostly by learning to do "sensory gating" which is training myself to ignore pain signals (like we ignore ongoing background noise). After 5 years I was able to return to work, but it was exhausting, because doing gating consumes mental energy.

Good luck with your quest to find out what is going on with your health. I think all the testing that is done to rule out other ailments is important, because a number of those other ailments are more treatable and sometimes more dangerous.

Fibro is hard enough to manage with a diagnosis, do yourself a favor and go through the medical testing process.