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Officially diagnosed with Fibromylagia.
7 Replies
Noca - March 2

Today at my pain clinic appointment, I mentioned FMS to my pain physician and he agreed that I have the illness of Fibromylagia. I asked him about the 18 tender point exam and he said it was just experimental and was for research purposes only.

He said that my opioids are not good at treating FMS pain at all but that I still have pain from my bone disease/tumors. He kept my pain meds at the same dose they were before. Only thing he added was Nortriptyline, which he said would help my sleep and FMS. He told me that treating fibro I need to a) treat my sleep b) treat my psychological issues, and c) treat my pain

 

Canada17 - March 2

I am a little discouraged that your doctor called the only "test" to diagnose Fibromyalgia "experimental" and said that it is "for research purposes only".

The American College of Rheumatology (ACR) published a set of criteria for the diagnosis of Fibromyalgia Syndrome in 1990. For this, you need to have had pain in all four quadrants of the body (i.e. on both the left and right sides and above and below the waist) for at least 3 months. For the ACR criteria, you also need to have 11 out of 18 specifically chosen tender points.

Some doctors do not consider the tender point test to be accurate, but the inaccuracy of the test results is often down to it being poorly understood and performed. While there are no "official" guidelines for performing the test, it certainly is not experimental.

 

Noca - March 2

So he couldnt possibly diagnose me without those criteria?

 

Noca - March 2

Oh and he already knows I have wide spread bodily pain.

 

kvc33 - March 2

The 18 point thing is an old way of diagnosing fibro that some docs no longer use and others never accepted it. He definately can diagnose you with fibro without it in my opinion. Remember, we still don't know what causes this illness therefore there is no official test for it. It was a way in the early days for people to get a diagnosis that they desperately needed.

 

Canada17 - March 2

Noca, I am sorry you misunderstood my point.

I didn't say he couldn't diagnose you without those criteria and besides that all your posts indicate that you meet the criteria. I didn't realize you would jump to the conclusion that I didn't believe you have Fibromyalgia (FM). I think all of us who follow your posts believe that you have FM. What I don't believe is that the tender point exam is not a diagnostic tool.

I think it was irresponsible of your doctor to put his opinion before the facts. And, that is discouraging because we already face enough barriers and I don't want you to get sub-par treatment. If your doctor believes that the tender point exam is experimental and therefore won't use it, how is he going to treat you effectively when all the treatments are experimental? There is not one tried and true way to effectively treat this awesome dis-ease.

Not knowing the cause of FM is not the reason there is no test for it. We don't know all the causes for all the different kinds of cancer, but we can test for them very easily and effectively.

The problem with diagnosing FM is that our bodily processes are fundamentally different from that of someone who does not have FM but on a minute level; just enough for our sensitive central nervous systems to notice but not enough to set off alarms or red flags on tests.

The diagnostic tests available to test for reduced organ function, the blood tests, the urine tests, the x-rays, they have a minimum value to which they can go. Anything beyond that value does not register. For the most part, the issues we face with our FM are considered sub-clinical because according to clinical tests there is "nothing wrong with us" but we all know that is not true.

We are a special breed.

 

Noca - March 2

Thanks to both of you =)

 

Fantod - March 2

Hi Noca - I certainly don't agree with your doctor's assertion that the tender point test is "experimental." But, I do agree with his assessment tbat one of the most crucial items for managing FMS is restorative sleep. That's a biggie. But, they have got to get the pain issues associated with your bone disease under control before decent sleep will be possible. Did you ask about a nerve block for your back? I'm honestly sorry that this was the diagnosis but not surprised. I hope that you will continue to chat with all of us and hang tough. Take care.

 

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