How were you Officially Diagnosed?

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Regular Member

Date Joined Apr 2008
Total Posts : 131
   Posted 7/7/2009 9:19 AM (GMT -7)   
Hi everyone..

I'm seeing a rheumy for my very first time this week and i'm wondering how does a doctor diagnos fibro? I know there are blood tests, tender point exams etc.. but would they typically diagnose you on your first visit if you were in pain everywhere and was almost crippling?  What do they do exactly for the tender point exam?  Isn't it like 18 areas you must be tender in?
 I'm just curious what they do and how they determine it and what tests are involved. Also, what are major symptoms of fibro and besides lyrica, cymbalta etc.. how do they treat it?
Also, to those of you who have arthitis as well... if your blood work shows up normal, can you still have arthritis?  are there other things a doc will ask, say or do to find out?  sorry for all the questions..

thank you so much.

New Member

Date Joined Jul 2009
Total Posts : 17
   Posted 7/7/2009 9:46 AM (GMT -7)   
I'm not sure myself, I have my first rheumy appt in August. I do know, however, that my primary Dr. told me he has ruled out everything else so I should only have to go to this one appointment to confirm his diagnosis of fibromyalgia. So I'm assuming they should be able to tell on your first visit-if you've had all the test done to rule out everything else, otherwise they will probably have to do the tests first. That's just my assumption though, since I haven't been to the specialist yet. Good luck...

Regular Member

Date Joined Jun 2009
Total Posts : 439
   Posted 7/7/2009 10:50 AM (GMT -7)   
Your doc will conduct tons of tests. It seemed like I was always going back to have more blood drawn for more tests!
The doc will look at the results and systematically rule out everything else.
When he discovers that you don't have things like Ankylosing Spondylitis and Lupus, then he will be able to say you have Fibro.

Irish Babe
Veteran Member

Date Joined May 2007
Total Posts : 1380
   Posted 7/7/2009 11:24 AM (GMT -7)   
I was tested for everthing under the sun, and they were all eliminated. When my pcp sent me to the rheumy for confirmation of Fibro, the dr. looked at my list of symptoms and then did the Tender points test. There are 18 spots they can ck, my rheumy touched the first 11 and confirmed it at that point. The dr applies slight pressure on the spots.
The 2nd thread on the top of the page contains Fibro 101, there are many different sections in there compiled by our Mods. One of these is a list of symptoms of FMS. Print out a copy and mark off all the things that apply to you. Bring this w/ you to the rheumy visit. It should help you to remember all the things you go thru w/ FMS, and it should help the dr see what you deal with every day. Add anything to the list you feel might help. I only had one visit w/ the rheumy and that was to dx FMS, which he did.
I am not taking any rx med for FMS, I was put on some and they caused more problems than they solved. The biggest symptoms for me are burning pain, fatigue, 'fog', and other things I can't think of right now, due to the 'fog'.  I have severe arthritis thru out my body and I haven't heard of any particular thing showing up in my blood work. I take Tylenol Arthritis for the pain, Tylenol PM to get my 3 hrs of sleep per night, I use a heating pad or a bed buddy to help w/ the burning pain. I have a lot of reactions to meds, so there isn't a lot I can take.
I hope your visit goes well. Good Luck!
God bless.  Alice.

Regular Member

Date Joined Apr 2008
Total Posts : 131
   Posted 7/7/2009 2:09 PM (GMT -7)   
Hi Alice,
Thank you so much for your reply. That is all very helpful information you wrote. Can you take any type of pain medication? Also, I see the phrase FIBRO FOG a lot.. what exactly does that mean or feel like?

Irish Babe
Veteran Member

Date Joined May 2007
Total Posts : 1380
   Posted 7/7/2009 3:08 PM (GMT -7)   
Hi, Jennca, I'm glad I could help. Ah, Fibro Fog - a joy to experience. I will be talking to someone and forget the next word of the sentence or even better, forget the whole point of the conversation. You start to do something and forget what it was that you were going to do. Basically, you stand there looking befuddled, having no idea which end is up.
There were times I would be in the car driving to a specific place and forget where I was going and the route I planned to take. It isn't pretty. shakehead
I have had a lot of bad reactions to meds, so for the most part I tend to avoid them.  I try to do stretches, walk, rest, & use my heating pad - a lot!. I don't take Tylenol Arthritis too often, but I take the PM at night. I don't sleep a lot, 2 - 3 hrs a night, but more than one PM and I'm so groggy the next day. There is no happy medium here.
I had gone to my pcp yrs ago w/ many symptoms over a period of time, she never 'connected the dots'. I was reading a book on Fibro and they listed the symptoms and I was amazed, I had the whole list. I brought that list to her and finally she thought it might be FMS. That is why I suggested you print out the list, this way the dr can see the whole picture.
Hope that helps. Have a good day.
God bless.  Alice.

Regular Member

Date Joined Apr 2008
Total Posts : 131
   Posted 7/7/2009 3:20 PM (GMT -7)   
Alice, thank you again for your reply. I can't find a symptom list for fibro anywhere, even on this site and webmd.. am i dumb or something?? ah... do you have a link of that list you printed out by any chance?

Irish Babe
Veteran Member

Date Joined May 2007
Total Posts : 1380
   Posted 7/7/2009 4:27 PM (GMT -7)   
Hi Jennca, if you look at the 2nd thread top of the page 'Fibro 101 and resources', go to that, scroll down to the post of 6/2/08. It should be the 2nd on that section 'List of Fibro symptoms' it was set up by Chutz, one of our Mods.
No, you're not dumb, you're just trying to find your way around here, like the rest of us. While you're in that section, look at all the other info. Good stuff!!
There are still a lot of things I don't get w/ a computer. That is why God blessed me w/ my DD. yeah Her know-how led me to this site and it has been a blessing. On my own, I would still be looking for the 'on' button. lol.
Hope this helps.
God bless.  Alice.

Veteran Member

Date Joined Apr 2009
Total Posts : 673
   Posted 7/7/2009 4:29 PM (GMT -7)   
I was diagnosed the same way Irish was. I went through tons and tons of tests, and when everything was eliminated, my pcp sent me to a rheumy for confirmation. He asked me a lot of questions and looked at all the tests that had been done, and then he felt on my body for tender points. He looked at me after that and said, "I hate to tell you this, but you have textbook fibromyalgia."
'Cause when push comes to shove
you taste what you're made of.
You might bend til you break
'cause it's all you can take.
On your knees you look up
decide you've had enough.
You get mad.
You get strong.
Wipe your hands
shake it off.
Then you stand.
-"Stand" by Rascal Flatts

New Member

Date Joined Jul 2009
Total Posts : 6
   Posted 7/7/2009 6:10 PM (GMT -7)   
I have not been technically diagnosed but my dr has put me on lyrics and cimbalta which seem to help a lot with pain, nerve pain... Do he assumes I do have fibro... I don't know what to say or do to push for tests and what not. It's just one of those thing I know I have... And everyone around me seems to believe I have...

Veteran Member

Date Joined Apr 2008
Total Posts : 1522
   Posted 7/7/2009 7:05 PM (GMT -7)   
After being treated for Lyme Disease for a few years and tested for everything under the sun, my doc said "This seems like fibromyalgia but I don't want to diagnose you with that." He explained that a fibro diagnosis could give me problems getting medical and life insurance and even getting a job. Since there was no treatment or cure, why list it if there would be no benefit. I followed his advice and I do not have fibro in my medical records.

about 15 years later, another doc had me do a sleep study. He said the results could indicate fibro but he didn't want to diagnose me with it.

My current doc won't give me the label either. He said he'd rather just treat any symptoms that bother me.

I am glad that I don't have fibro in my records and I believe it would have had a negative impact on my life. I know too many people that have had negative experiences with doctors because of their fibro diagnosis. They've been labeled as hypochondraics, drug seekers, every symptom has been labeled fibro so they've had delayed diagnoses of serious illnesses, doctors won't take them as patients, etc.

New Member

Date Joined May 2006
Total Posts : 6
   Posted 7/7/2009 8:10 PM (GMT -7)   
I developed ITP (idiopathic thrombocytopenic purpura) which is a lack of platelets in 1995. I was very ill with a platelet count of less than 5,000 for an extended period of time with other complicating factors as well. I also have crohns. I was put on very high doses of prednisone for several months. After an emergency splenectomy to fix the ITP when all else failed, I was beginning to recover from the steroids, which were terribly hard on the body at the dose I was on. I developed generalized terrible pain everywhere. I couldn't walk right, was exhausted. This continued for six months while the drs did tons of tests (including slicing up my spleen to see if there were abnormalities there). In the end, they could come up with absolutely nothing except fibro as an "educated guess" as my rheumatologist told me.

The only time in 15 years I have had no pain is the full 9 months I was pregnant with my daughter. The fibro pain went away for the entire 9 months and came back within hours of birth. I was so hoping it would not come back. :-(

I have had no trouble either with health or life insurance even with all of my health issues. Matter of fact I was just issued a 50k life insurance policy today after full disclosure of my health problems and a physical that rendered I'm sure less than perfect.

Regular Member

Date Joined Apr 2008
Total Posts : 131
   Posted 7/8/2009 8:54 AM (GMT -7)   
Dagger- What you said was interesting to NOT have fibro on your medical records.. Do you really think it is that negative? I see a rheumy tomorrow and maybe I should tell her this and try to avoid it as well. I'm thinking I have a form of arthritis since I have Crohn's disease and other auto-immune diseases as well. So for the most part, you'd agree that fibro on your records is bad, right?

SassyKitty- When your doc said you had textbook fibro, what symptoms do you have, if you don't mind sharing? Oh, and how do they do their tender point exam exactly?

Veteran Member

Date Joined Apr 2008
Total Posts : 1522
   Posted 7/8/2009 12:26 PM (GMT -7)   
I know that the company that issues short term disability policies where I work will not issue one to you if you have a history of fibro. I know three people that wrote down that they had fibro and were refused a policy. I did not write down fibro or Lyme Disease because the form asked if you were diagnosed or treated for these illnesses in the last 10 years. Since my Lyme diagnosis was almost 20 years ago and I haven't received any treatment for it in over 10 years, I didn't lie and I got coverage.

Two people in my fibro group were charged a higher rate for life insurance due to their fibro.

I know of others that were quoted excessive amounts for private medical insurance and they only had fibro. Their agents told them they had to pay a premium due to their health issues.

I know someone that was denied a job transfer because she had fibro and the principal at the school she was trying to transfer to knew it. My other friend was on the interview committee and her principal told her later that was why he turned the other woman down. Sure, this is probably illegal but how can you prove it? My friend would never tell on her principal - she needs her job.

Many of the pain centers in our city will NOT take people with fibro. We are also finding that many of our local rheumatologists are refusing to take new fibro patients. My friend's rheumy retired and not one of the 5 on her insurance list would take her with her fibro diagnosis. Many new people come to our fibro group looking for docs because they can't find one that will take them. This attitude seems to be spreading so even if your area is fine now, it can change.

These are stories from people that I know and people that I have actually spoken to so I know they are true.

Since you can't cure fibro and you only treat the symptoms, I wouldn't have in in my records, especially if you are young. You can treat the symptoms without a formal diagnosis. I'm not convinced having the diagnosis in your records helps you file for disability either. It's based on symptoms, not diagnosis.

I know most people haven't run into these problems but some have. This kind of discrimination exists so why take a chance if you don't have to.

Veteran Member

Date Joined Nov 2008
Total Posts : 1097
   Posted 7/8/2009 1:07 PM (GMT -7)   
Wow, Dagger. I never thought about these kinds of problems before. What I want to know is-if Fibro isn't life threatening at all, why on earth would having a fibro diagnosis increase life insurance premiums??!!?
love and hugs

fibromyalgia, ibs, gerd, anxiety

We either make ourselves happy or miserable. The amount of work is the same.~Carlos Castaneda

I wish you all the joy that you can wish.~William Shakespeare

Housework, if you do it right, will kill you.~Erma Bombeck

Veteran Member

Date Joined Jul 2006
Total Posts : 831
   Posted 7/10/2009 8:38 PM (GMT -7)   
I was dx by an ER Dr. I had been seeing a reg. Dr for a few months and she had me go in for an MRI since I told her that I had been having problems with my memory and couldn't even remember how to spell EGG I spelled it EEG and fought with b/f for about 5 minutes. Plus I was having troubles with my eyes getting blurry. That was almost 3 years ago this Oct. Well MRI showed that I had a mini stroke sometime after 2002 which was when I had a MRI due to Nuroligist trying to figure out why my body was acting up. Anyways the one I had in 2002 showed I had a place on the right side of my brain.

Well, I had moved my furniture and had pain going down my left arm so I thought maybe another stroke so I went to hospital right away and after another MRI and CAT SCan the Dr came back and told me I had Fibro. I think it also didn't help that when nurse went to put IV in my arm it took her 3 times and I screamed. I wouldn't even let the nurse take the needle out I did it myself.

My reg. Dr gives me the pills I need for pain but I"m not sure if she ever put it in my files as to having Fibro.

DX Fibro 12/31/07   Guess I can put the rest dx
PSTD  Bi Polar 2/04  Depression most of my life  IBS
RX Amitriptylin 25mg
God gives doesn't give us more than we can handle. So this too shall pass.

New Member

Date Joined Jul 2009
Total Posts : 1
   Posted 7/10/2009 8:53 PM (GMT -7)   
I went through tons of tests, my first diagnose was probable MS. I went to rheumatologist who then diagnosed Fibro. Unfortunately, I have to go to my primary doctor for treatment since the rheumatologists here don't treat Fibromyalgia. My primary doctor is alright though, he does not know a lot about it and listens to me if I want to try something.

Regular Member

Date Joined Jun 2008
Total Posts : 289
   Posted 7/11/2009 7:57 PM (GMT -7)   
It took me almost a year to get diagnosed.. after going thru appointments with neurologists, orthopedic surgeons, MRI's Cat Scans Too many blood tests to list all of them.. Several different meds, even had to go to a shrink to evaluated cuz they thought i was bi-polar

i had every thing from lupus to arthritis once i finally got a doctor that figured out there was something more they referred me to a rhuemy and i got diagnosed in 2 months...

The rhuemy had me fill out this long questionnaire about my life and had copies of the tests. sent me for more tests and after been poked, prodded and violated (LOL) i got a diagnoses of Fibro...

I have never had a problem getting a job or insurance or anything because fibro is listed as a "chronic illness"

I can understand from the insurance side of things. especially with the health benefits massage therapy, meds, chiropractor can drain but most health insurance plans only pay up to a max of $500 per year so once that cap is reached then thats it
Diagnosed - fibromyalgia 2001
Meds amitryptilene 30mg/day
Lyrica 75mg/day

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