Having trouble believing diagnosis

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New Member

Date Joined Jun 2009
Total Posts : 5
   Posted 7/6/2009 2:30 PM (GMT -7)   
Hello to all! You were all so helpful with my last question about fibro, and I'm hoping maybe you can offer some further guidance.

I've read the Fibromyalgia 101 thread, and found some very helpful information there. And I do have several of the listed symptoms. I have chronic intermittent chest pain, back pain, neck pain, facial pain and headaches. I have very sensitive points on my body, most notably my upper back, chest, upper arms, legs and the sides of my torso. For example, one of my cats putting her paws up on my leg is very painful to me. (And the cats aren't THAT big!) I have frequent digestive issues that come and go. Ever since all of my symptoms started a year and a half ago, I've had HORRIBLE problems with anxiety. I'm often tired, particularly when I'm in pain. But the pain comes and goes, and moves around. Some days I'm fine, others I'm a mess.

Here's the problem: I kinda have a hard time believing I could have a condition that there's not a test for! I wish there were some sort of doctor who specialized in it so I could talk to them. I'm really sick of doctors at this point, but I keep going back in order to have a definitive diagnosis. Mine just said "Well it sounds like fibromyalgia." But that's not really good enough for me, I guess. I feel like a nut, and I'm sorry to keep wondering all this.

Regular Member

Date Joined Jun 2009
Total Posts : 222
   Posted 7/6/2009 3:25 PM (GMT -7)   


Unfortunately, FM is a diagnosis of elimination. If you have had negative results for everything from underactive thyroid, to lupus and arthritis then you may just have to accept this dx. There's also the 18points of reference on the body, you need to have pain in at least 11. The pain is usually categorised by being in all quadrants of the body.

A rhuematologist is usually the most qualified to dx and treat it. It is also a very individual condition. I get away with minimal pain killers while others are out of work and taking morphine. It took me about 6 years to accept i had it and i wasted a lot of time and money chasing my tail because of it.

You can really only decide for yourself if you think you need to get more opinions. But remember, the medical community is divided somewhat about it. Some say it's a soft/connective tissue problem, some believe it's to do with faulty pain neurotransmitters and then of course there's the ones who firmly believe it's all in our heads.

Getting embroiled with different medical opinions will only worsen your anxiety, increase your self doubt and ultimately end up not making one bit of difference, except wrexking your head.

I think it's a lot to do with what we put in our bodies and the human body is unable to cope with the amount of junk we absorb from food to environmental pollutants. That's to say it makes it worse, not necessarily the cause.

Anyway, you're not a nut, your just going through the same as the rest of us did at some point. Make up your mind if you can accept it, when i did it made it so much easier to get on with things. It didn't make to pain go away but at least i could eliminate the mental torture i was putting myself through.

The anxiety you're suffering may be from not feeling in control of your body, not getting answers and feeling you can't trust the medical profession. Again, only my opinion from experience.

I hope you can get some peace, take care,

boo :-)

BikeBoo, biking with my boo since 1999
Of all the things i've lost, i miss my mind the most! But it has its advantages!
Fibro, spinal arthritis and all that goes with it.

Veteran Member

Date Joined Jan 2005
Total Posts : 9090
   Posted 7/6/2009 10:20 PM (GMT -7)   
Hi lariet!

I think boo has given you a fabulous answer...not sure how I could improve on it except to agree. Yes, you are the one who needs to make the decision about who you believe but you also need to think of something else.

Having fibromyalgia, which is a lifelong disorder, means giving up your former life. You can still have a wonderful life if you set your mind to it but it will never be the same as it used to be. There are things you won't be able to do yet you can find a way to do most anything you desire but in a new way. You have lost a part of you...it's like a death. You are mourning what you have lost, whether it's called fibromyalgia or something else. You have likely heard of the stages of mourning or grief and you may be in the first stage which is disbelief. Many of us felt it too. The next stage of mourning this 'death' is often anger. That's one that crops up inside of me once in a while but I have learned to beat it down and keep on going. The last 3 stages of grief are bargaining, depression, and acceptance. It's a long road to make it through all 5 stages but most of us finally do and when you begin to accept it you will begin to see your new life grow and will find happiness again.

I hope this made some sense somewhere. It may not totally apply to you but someone else reading this thread may gain some insight from it. Keep asking and reading and thinking but be cautious about anyone offering a 'cure' or magic potion. None exists...yet. Try different types of remedies for the ...jeez...can't think of the word I need... symptoms! ( I too hate when that happens). Work with what you have. This is not life threatening, it just feels that way sometimes. The pain goes up and down, your mind is sharp then can't remember a thing...it's frustrating. But you will make it and that's why this family exists...we CAN do it together.

Co-Moderator Fibromyalgia & Chronic Pain Forums ~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis, collapsed disk, and a few other side dishes.


If you ask what is the single most important key to longevity, I would have to say it is avoiding worry, stress and tension. And if you didn't ask me, I'd still have to say it.
George Burns

Regular Member

Date Joined May 2009
Total Posts : 25
   Posted 7/7/2009 7:22 AM (GMT -7)   
I really appreciate you taking the time to write out these stages. I wanted to agree with the fact that we all have probably experienced thse stages as we learned/are learning how to deal with our diagnosis. I want to take it a step further and suggest that many of us may never fully complete going through many of the stages. I know for me there are days where I can look Fibro in the face and deal with it well. But then there are days of depression, days of anger, and days of disbelief. The difference between a person dealing with these stages the first time, and a "Fibro vet" dealing with these stages is that we still experience them, but they don't stay, they come and go, we accept them and carry on.
I hope this makes sense. It is just something that popped into my head while reading your post. wink
IBS, Fibromyalgia, Anxiety
There is a time for all things under heaven...

Regular Member

Date Joined Jun 2009
Total Posts : 110
   Posted 7/7/2009 8:21 AM (GMT -7)   
I have to say that you hit the nail on the head. I was dx 6 yrs ago and I am so angry at times I could spit. I wonder a lot too, "why me". Between my husband and me we have had 11 surgeries in 4 years. Thats a lot to deal with.

So, try to come to terms with it as soon as you can, because thats when you can start your new life.

Good luck!
anxiety, avascular necrosis, costochondritis, depression, cfs, hypothyroidism, fibro, gerd, thyroid, uc, crs(can't remember stuff)
in trying times, don't quit trying          

Veteran Member

Date Joined Apr 2009
Total Posts : 673
   Posted 7/7/2009 8:22 AM (GMT -7)   
The main test, in my opinion, for fibro, is the process of elimination. I went through a whole bunch of tests for EVERYTHING. My doctor didn't want to believe that I have fibro because I am so young. But, we did a whole bunch of tests and they all came back normal. Finally, when there weren't any other tests the doc could do, he sent me to a rheumetologist to confirm the fibro. And he did. I know this is frustrating for you. This kind of thing is frustrating for all of us. Just hang in there, and come on here whenever. If you need to vent, we are here for you. Good luck.
'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

Regular Member

Date Joined Jun 2009
Total Posts : 439
   Posted 7/7/2009 8:48 AM (GMT -7)   
I agree ... I definitely felt like my doc was like "well if you don't have A, B, C, X, Y, or Z" it must be Fibro. Sure did make it complicated to explain to my boss why I kept having to go back for more tests to a hospital 5 hours away (the only place my insurance would cover).

New Member

Date Joined Jun 2009
Total Posts : 5
   Posted 7/7/2009 11:47 AM (GMT -7)   
Thanks everyone for the advice and personal stories. I guess I'm just having a hard time getting it through my head! My doctor's thrown so many possible diagnoses at me in the past year and a half that I just don't know what to believe. I guess I just need to sit down and have a discussion with him to make sure he's ruled everything out, or to send me to a rheumatologist. Ugh. I've really come to hate medical stuff. Especially medical bills.

Regular Member

Date Joined Mar 2008
Total Posts : 316
   Posted 7/7/2009 12:19 PM (GMT -7)   
I went through the same thing, Lariat. My rheumatologist diagnosed me with the tender point test and symptom history, after a series of bloodwork was done on me. I went back to my primary doc and asked for other blood tests to be done, for Lyme and other things they had already tested for (but wondered if the test results were not accurate). Nothing else came up.

I went to see a different doctor, and he quickly diagnosed me using the same tests as my rheumatologist. I am very lucky, as both of these doctors are very familiar w/ Fibro. My rheum.'s wife has it, and the second one co-authored a book in which he wrote about it.

Anyway, as another member, Jokat, puts it "Fibro is a life sentence, but not a death sentence." Give yourself time to let it sink in.

Feel free to keep posting and take care of yourself. :)


Fibromyalgia since 2007

"No pessimist ever discovered the secret of the stars or sailed an uncharted land, or opened a new doorway for the human spirit."
Helen Keller

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