First time

[pace12]

Hello all, not diagnosed but my Doctor is leaning towards fibromyalgia. It's been 10 months so far. I saw a cardiologist today as part of the referral process to the long covid clinic. Of course after I left I realised I had another question. The cardiologist mentioned fibromyalgia can be diagnosed via a blood test to identify a "marker". I've had a quick look on this site and can only see comments saying there is no blood test to diagnose. Any thoughts or experiences appreciated (including experiences relating to a journey of trying to diagnose fibromyalgia or long covid). thank you

 

[BlueBells]

Hello all, not diagnosed but my Doctor is leaning towards fibromyalgia. It's been 10 months so far. I saw a cardiologist today as part of the referral process to the long covid clinic. Of course after I left I realised I had another question. The cardiologist mentioned fibromyalgia can be diagnosed via a blood test to identify a "marker". I've had a quick look on this site and can only see comments saying there is no blood test to diagnose. Any thoughts or experiences appreciated (including experiences relating to a journey of trying to diagnose fibromyalgia or long covid). thank you

Hi @pace12

Yay !! another Aussie

There's a test on here, well worth doing that. Might answer a few of your questions, too, as in, what does possibly point to fibro.

Hope to see you on here, they are a pretty good mob

 

[sunkacola]

Hello all, not diagnosed but my Doctor is leaning towards fibromyalgia. It's been 10 months so far. I saw a cardiologist today as part of the referral process to the long covid clinic. Of course after I left I realised I had another question. The cardiologist mentioned fibromyalgia can be diagnosed via a blood test to identify a "marker". I've had a quick look on this site and can only see comments saying there is no blood test to diagnose. Any thoughts or experiences appreciated (including experiences relating to a journey of trying to diagnose fibromyalgia or long covid). thank you

Hi Pace, and welcome. There is no blood test for fibromyalgia. In fact, there is no test of any kind that will conclusively diagnose fibromyalgia, no matter what anyone tells you. The "pressure points" test was debunked years ago, and there are no chemical markers for it, so that cardiologist is misinformed, as are many medical professionals when it comes to fibro.

I don't know anything about long covid, although I think that can be diagnosed more easily than fibro. Usually fibro is diagnosed by eliminating all of the many other things that could be causing the symptoms.

 

[JayCS]

The cardiologist mentioned fibromyalgia can be diagnosed via a blood test to identify a "marker". I've had a quick look on this site and can only see comments saying there is no blood test to diagnose.

What that cardiologist is referring to is the so-called FM/a-"test". If you search for that on this site or click here and here, you'll find threads where I've detailed the problem, but in short:
It measures cytokines, one of many fibromyalgia-biomarkers (see my list here) that may be different in fibromyalgia as well as in other diseases, so definitely no proof, no diagnosis. Bruce Gillis "invented" and markets it altho it's not backed up by research. Doing this he is "selling certainty" and as such is snake oil scam. Sneakily he is pretending to be the only doctor willing to do people a favour by diagnosing. Insurances pay for it in the hope that it will save their money by people then not checking other issues. A STAT article about "Selling Certainty" explains an additional fraud by pretending to couple this blood test with a clinical trial even though he'd given up the trial without telling anyone, not even the hospital that was supposed to be doing the trial.

There's a test on here, well worth doing that.

The "test" BlueBells is referring to on this site here is a pretty reputable one that tries to convert the 2016 ACR criteria into a simple online test. This may be fun for people who like doing online tests. But actually it's much easier to just fill in the one page 2016 ACR criteria. I haven't attached it to my posts lately, maybe I should do so again....:

 

[pace12]

Thanks for your reply, I saw the Cardiologist today after an exercising ecg. I didn't realise I would have the chance to speak to him. I asked for clarification and he told me the markers indicate inflammation but doesn't indicate where. I expect when I had tests and saw the rheumatologist this was completed. As I had aches in hands, hips, toes, feet and back we wanted to determine if I had rheumatoid arthritis. That was ruled out thankfully. I do have osteo arthritis in my hands, hips, toes, feet and back but consistent with my age but I believe the level of aches I experience are more severe than just an age based arthritis condition. I have completed the test you mentioned and it indicated I may have fibromyalgia so a piece of the puzzle but not a certain diagnosis.

 

[pace12]

Thank you, I completed the one page test and indicates I may have fibromyalgia. The journey continues.

 

[pace12]

Hi Pace, and welcome. There is no blood test for fibromyalgia. In fact, there is no test of any kind that will conclusively diagnose fibromyalgia, no matter what anyone tells you. The "pressure points" test was debunked years ago, and there are no chemical markers for it, so that cardiologist is misinformed, as are many medical professionals when it comes to fibro.

I don't know anything about long covid, although I think that can be diagnosed more easily than fibro. Usually fibro is diagnosed by eliminating all of the many other things that could be causing the symptoms.

Thank you, it is great to connect with people who understand.

 

[JayCS]

I asked for clarification and he told me the markers indicate inflammation but doesn't indicate where.

This to me is more confusing than before... - Markers for inflammation (e.g. CRP) are markers for something rheumatological / autoimmune. Fibromyalgia is neither, and it also isn't identified / marked by inflammation. So it contradicts what he said before... (Not rare... )

 

[pace12]

This to me is more confusing than before... - Markers for inflammation (e.g. CRP) are markers for something rheumatological / autoimmune. Fibromyalgia is neither, and it also isn't identified / marked by inflammation. So it contradicts what he said before... (Not rare... )

Hmmm, excuse my low level of knowledge but I thought I had seen somewhere one of the reasonable theories regarding fibromyalgia was it was a low level of inflammation within the body. Maybe a historical item since disproved?? I am early in my journey of understanding so I apologise if I am barking up the wrong tree.

 

[JayCS]

Hmmm, excuse my low level of knowledge but I thought I had seen somewhere one of the reasonable theories regarding fibromyalgia was it was a low level of inflammation within the body. Maybe a historical item since disproved?? I am early in my journey of understanding so I apologise if I am barking up the wrong tree.

No worry, no apologies, always good to re-think things, and it's seldom black and white.
After trying to think it thru I think the bottom line is that inflammation may seem to be a part of fibro in many of us, but can't help diagnose it.

It's true, people have suggested fibro might have "to do" with inflammation, and the fact that some pro-, but also some anti-inflammatory cytokines are associated with fibro, means it can't be excluded as a factor. But association isn't causation, and also means only some people have it, which then can't be used diagnostically, like Gillis does. (Dreadful for someone diagnosed with fibro doing Gillis' test and getting told it's not fibro, as I read a few times.)
For that reason, they stopped calling it fibrositis in the 70s. Cytokines aren't usually even measured, similar to all the other biomarkers. Any normally detectable inflammatory markers would suggest we have something else than fibro, and that's something that has never been different.
Of course many of us may have some inflammation, but that's then from some co-morbidity or can't be explained, cos there's no pattern. And NSAID (AI = anti-inflammatory) meds may be tried, with greatly differing success.
Presently, two main "reasonable theories" about causation are that it's "central sensitization"(CSS) and "autoimmune". CSS means our pain needs to be defined as "nociplastic", neither nociceptive nor neuropathic, so without injury or inflammation. (We may also have the other pain types, but these aren't distinctive for fibro.) Autoimmune does have to do with inflammation, but there again the mechanism is unclear, also whether that theory holds true. The 2021 study isn't particularly convincing.

 

[pace12]

No worry, no apologies, always good to re-think things, and it's seldom black and white.
After trying to think it thru I think the bottom line is that inflammation may seem to be a part of fibro in many of us, but can't help diagnose it.

It's true, people have suggested fibro might have "to do" with inflammation, and the fact that some pro-, but also some anti-inflammatory cytokines are associated with fibro, means it can't be excluded as a factor. But association isn't causation, and also means only some people have it, which then can't be used diagnostically, like Gillis does. (Dreadful for someone diagnosed with fibro doing Gillis' test and getting told it's not fibro, as I read a few times.)
For that reason, they stopped calling it fibrositis in the 70s. Cytokines aren't usually even measured, similar to all the other biomarkers. Any normally detectable inflammatory markers would suggest we have something else than fibro, and that's something that has never been different.
Of course many of us may have some inflammation, but that's then from some co-morbidity or can't be explained, cos there's no pattern. And NSAID (AI = anti-inflammatory) meds may be tried, with greatly differing success.
Presently, two main "reasonable theories" about causation are that it's "central sensitization"(CSS) and "autoimmune". CSS means our pain needs to be defined as "nociplastic", neither nociceptive nor neuropathic, so without injury or inflammation. (We may also have the other pain types, but these aren't distinctive for fibro.) Autoimmune does have to do with inflammation, but there again the mechanism is unclear, also whether that theory holds true. The 2021 study isn't particularly convincing.

Thank you, that is a great summary. The grey characteristics (rather than black and white) of all of this is frustrating. My cardiologist really is a specialist so I need to take what he tells me and fit it into the big picture and allocate the correct weight to that information in the context of what I am trying to determine.

 

[sunkacola]

Hmmm, excuse my low level of knowledge but I thought I had seen somewhere one of the reasonable theories regarding fibromyalgia was it was a low level of inflammation within the body. Maybe a historical item since disproved?? I am early in my journey of understanding so I apologise if I am barking up the wrong tree.

Operative word here being "theory"! There are a lot of theories, but those theories really do not offer anything to those of us who have fibro, because you can't expect to diagnose or treat something based on unproven theories.

As for barking up wrong trees, I think probably all of us with this confusing and confounding disability have spent some time barking up trees, many of them trees that are not of any use. I know I sure did, at first. Once I was diagnosed I stopped the barking (at least, the barking up trees!) because I know there's nothing that is proven to be a cause, nor that will help everyone, although there are things one can do without medication that may help a lot of people.

Even for those of us familiar with this process there is always more experimentation to do and more understanding to gain . The understanding, however, is only for what helps ourselves, and won't necessarily help someone else.

For instance, a few months ago when my pain level was such that I couldn't get anything done, I started taking duloxetine. At first it seemed like a game changer for me, but after a month it stopped working and the dose was increased. Then, it created nausea, lethargy, and brain fog to the point that I couldn't get anything done or even want to. A week ago I stopped it, and almost immediately the lethargy stopped, I became clear headed again, and no nausea. The pain may get bad again, but I cannot continue to take that drug, so now I just wait to see what's next.

This is often what it is like for us, trial and error and new trial and as long as you are paying close attention to your body and not blindly going along with what the doctor says or what you read or what someone else tells you, you will stay pretty much on track.

 

[JayCS]

My cardiologist really is a specialist

Specialist for heart etc., but impossibly for fibro, of course, so any ideas can be followed up on, but with a pinch of salt....

 

[JayCS]

For instance, a few months ago when my pain level was such that I couldn't get anything done,

The pain may get bad again, but I cannot continue to take that drug, so now I just wait to see what's next.
This is often what it is like for us, trial and error and new trial and

Sorry to hear that. So often in the last half year I've been wondering how things can feel as if their getting better for me, and then they get even worse - and then better, so that's the "best" I can get. Hope there's more in it for you and us all.

 

[sunkacola]

Thanks, Jay. It was a disappointment, but only momentarily because this is just what happens with drugs, and that's why I do my best to avoid them. I would rather be in too much pain to get anything done but WANT to get things done than to have very little pain, but feel so lethargic that I don't even want to do anything. Of course, be nice if it were neither. But so far there's no drug that gives me that. And mostly I tend to doubt that such a drug exists, although you never know what might be around the next corner.

So it's back to my basics: do what I can with diet and exercise and attitude, and love the good days, and accept the bad ones.