5 ms·

> There is no certain test for either condition- in particular, fibromyalgia is basically a bucket you get tossed into if nothing else makes sense. FM is young

by shakna 6y ago

> There is no certain test for either condition- in particular, fibromyalgia is basically a bucket you get tossed into if nothing else makes sense. FM is young (around 1990 it got its name), so a lot of what we know has changed, especially in fifteen years, but it is no longer the case that there isn't a test for it (there's multiple), and it should not be the diagnosis of last resort when nothing else makes sense. There are specific diagnostic criteria. For testing, we have things like the FM/a blood test (since 2012), and for diagnosis you need to fulfill "The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity" (2010), or similar. FM also falls into four categories: + Extreme sensitivity to pain but no associated psychiatric conditions (usually treated by attempting to de-sensitise the nervous system) + Fibromyalgia and comorbid, pain-related depression (usually treated as the above, whilst also utilising an anti-depression regime) + Depression with concomitant fibromyalgia syndrome (usually treated as the above) + Fibromyalgia due to somatization (usually treated with psychotherapy) The fourth category is sort of what everyone assumes the entire illness is like, at least in my experience. It also happens to be the least common form of the illness since we began standardised diagnosis. --- I fall into the first category. I am not intending to provide any advice whatsoever, because that's one of the most infuriating things about living with the illness. I've been learning to deal with this for half my life, the person talking to me may be frustrated and want to help... But the chances of you coming up with anything I'm not aware of are practically zero. And an insult to my intelligence and determination. However, fibromyalgia shouldn't get the stigma of being the "random disease" anymore. It isn't. Unless you fall into the fourth category, there are neural structures unique to sufferers, and blood markers that are unique to sufferers. This is a condition, not a wastepaper basket for people that are just too hard to diagnose. The illness can already ruin you, don't let the stigma burn you as well.

zdragnar 6y ago
It sounds like the FM/a test is still experimental- at least in the sense that abnormally low levels of cytokenes are a potential indicator of FM. https://www.healthline.com/health/fibromyalgia/blood-test#research https://www.healthline.com/health/fibromyalgia/blood-test#re... (Feb 2020) Neither the American College of Rheumatology nor the Mayo Clinic appear to indicate it as an option, yet; both continue to claim that FM is a label after other options have been exluded: https://www.mayoclinic.org/diseases-conditions/fibromyalgia/in-depth/fibromyalgia-symptoms/art-20045401 https://www.mayoclinic.org/diseases-conditions/fibromyalgia/... https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Fibromyalgia https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseas... In fact, the The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity" that you refer to are still incredibly generic; basically it's just an extended period of pain, accompanied by poor sleep or mood to the exclusion of other possible causes. Naturally, months of chronic pain will contribute to feeling poorly rested and / or an altered mood, fibromyalgia or no. I don't mean to disparage your assertions, and fully agree with your ultimate point of not letting it get to you. That said, I look forward to the FM/a test being more widely recognized. The thing that surprised me the most about this conversation (and the quick research it forced me to do) is that there is a curiously high level of co-incidence between psoriatic arthritis and fibromyalgia. One of the more annoying effects I suffer (most frequently when I was younger, less so now) was a heavy "fibro fog" cognitive decline typically triggered by high levels of stress. Maybe I have both? Who knows. Yet another website claiming that neither psoriatic arthritis nor fibromyalgia have a reliable test: https://www.everydayhealth.com/psoriatic-arthritis/living-with-psoriatic-arthritis-or-fibromyalgia/ https://www.everydayhealth.com/psoriatic-arthritis/living-wi... (I just might ask my doctor about getting one of those FM/a tests though!)
- shakna 6y ago
  > I don't mean to disparage your assertions, and fully agree with your ultimate point of not letting it get to you. That said, I look forward to the FM/a test being more widely recognized. FM is young. Keeping up to date on it is something I'll leave to my specialist, living with it doesn't require knowing the latest or greatest, so I don't find it disparaging at all. I mentioned the FM/a test in particular because it's FDA-approved under 21 CFR 866.5700 [0] back in 2012, which generally means it has moved beyond the experimental stage (the notification exception is because it isn't a take-home style test, only a doctor can use it). There's another blood test in the early experimental stages at Ohio State (Stage II) as well, and one from Oxford (Stage II) at similar stages. Unfortunately, you'll find that the Mayo Clinic doesn't tend to keep up to date, either. They provide some good high-level information on the disease, but because of how young it is, the effort required to keep up to date on a deeper understanding, such as diagnostic options, is probably not worth it to them. That and a lot of research into fibromyalgia runs into walls and funding problems. We don't have a great understanding of the disease, but we're getting there. The stigma of it being over-diagnosed is probably the most harmful part to research, when that no longer seems to be the case. [0] https://www.law.cornell.edu/cfr/text/21/866.5700 https://www.law.cornell.edu/cfr/text/21/866.5700
will_pseudonym 6y ago
If I haven't had any luck with treatment options of fibromyalgia, what are good avenues to look down for treatment? What's the most renowned institution for treatment of fibromyalgia?
- shakna 6y ago
  I'm loathe to answer this question. I'm not a doctor. Where you live, and how the disease is impacting you, will change the answer. Rather than issuing an institution name, because we likely live in different countries, it may be better to look at what kind of specialist you would be seeing, and perhaps adjusting expectations a little. I know that it is common in the US to be assigned to a rheumatologist for treatment of fibromyalgia. This isn't the norm the world over, as they _may_ not have all the necessary experience. Rather, you may find it more helpful to see a Pain Specialist (actual doctor title), who can help you with the symptoms you experience. My own Pain Specialist also specialises in fibromyalgia. I also see a Physiotherapist who specialises in fibromyalgia, and a psychologist who specialises in chronic pain. All three regularly send each other reports. My general doctor isn't involved in the treatment of the illness, it's a specialist condition, and they are not. They'll always defer to the Pain Specialist. --- However, the biggest part of the question "haven't had any luck with treatment options of fibromyalgia" comes down to your expectations. FM is a chronic illness, that has both flare-ups and relapses. For many sufferers, but not all, there is _no_ expectation that they will ever be able to reach a level of normality. There is however, an expectation that you may go backwards every few years in what you are capable of, and what you are experiencing, regardless of whether or not you are capable of achieving near-normality. This is not an illness that can be "cured". For a lot of people the best that _can_ be done is to make it tolerable to live with _most_ of the time. If the treatment is taking the edge off, but you still find yourself highly disabled - that's normal. A very few number of people can return to near-normality, but for most sufferers, that's never going to happen. It doesn't matter what combination of medication/physio/diet/lifestyle regime that you're on. The illness is pervasive, and may affect all areas of life. However, without such a regime, you may suffer more than is strictly necessary. Having a team of specialists that communicate is probably the most helpful safety net.
  - 6y ago

by shakna 6y ago

zdragnar 6y ago

It sounds like the FM/a test is still experimental- at least in the sense that abnormally low levels of cytokenes are a potential indicator of FM. https://www.healthline.com/health/fibromyalgia/blood-test#research https://www.healthline.com/health/fibromyalgia/blood-test#re... (Feb 2020) Neither the American College of Rheumatology nor the Mayo Clinic appear to indicate it as an option, yet; both continue to claim that FM is a label after other options have been exluded: https://www.mayoclinic.org/diseases-conditions/fibromyalgia/in-depth/fibromyalgia-symptoms/art-20045401 https://www.mayoclinic.org/diseases-conditions/fibromyalgia/... https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Fibromyalgia https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseas... In fact, the The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity" that you refer to are still incredibly generic; basically it's just an extended period of pain, accompanied by poor sleep or mood to the exclusion of other possible causes. Naturally, months of chronic pain will contribute to feeling poorly rested and / or an altered mood, fibromyalgia or no. I don't mean to disparage your assertions, and fully agree with your ultimate point of not letting it get to you. That said, I look forward to the FM/a test being more widely recognized. The thing that surprised me the most about this conversation (and the quick research it forced me to do) is that there is a curiously high level of co-incidence between psoriatic arthritis and fibromyalgia. One of the more annoying effects I suffer (most frequently when I was younger, less so now) was a heavy "fibro fog" cognitive decline typically triggered by high levels of stress. Maybe I have both? Who knows. Yet another website claiming that neither psoriatic arthritis nor fibromyalgia have a reliable test: https://www.everydayhealth.com/psoriatic-arthritis/living-with-psoriatic-arthritis-or-fibromyalgia/ https://www.everydayhealth.com/psoriatic-arthritis/living-wi... (I just might ask my doctor about getting one of those FM/a tests though!)

shakna 6y ago
> I don't mean to disparage your assertions, and fully agree with your ultimate point of not letting it get to you. That said, I look forward to the FM/a test being more widely recognized. FM is young. Keeping up to date on it is something I'll leave to my specialist, living with it doesn't require knowing the latest or greatest, so I don't find it disparaging at all. I mentioned the FM/a test in particular because it's FDA-approved under 21 CFR 866.5700 [0] back in 2012, which generally means it has moved beyond the experimental stage (the notification exception is because it isn't a take-home style test, only a doctor can use it). There's another blood test in the early experimental stages at Ohio State (Stage II) as well, and one from Oxford (Stage II) at similar stages. Unfortunately, you'll find that the Mayo Clinic doesn't tend to keep up to date, either. They provide some good high-level information on the disease, but because of how young it is, the effort required to keep up to date on a deeper understanding, such as diagnostic options, is probably not worth it to them. That and a lot of research into fibromyalgia runs into walls and funding problems. We don't have a great understanding of the disease, but we're getting there. The stigma of it being over-diagnosed is probably the most harmful part to research, when that no longer seems to be the case. [0] https://www.law.cornell.edu/cfr/text/21/866.5700 https://www.law.cornell.edu/cfr/text/21/866.5700

will_pseudonym 6y ago

If I haven't had any luck with treatment options of fibromyalgia, what are good avenues to look down for treatment? What's the most renowned institution for treatment of fibromyalgia?

shakna 6y ago
I'm loathe to answer this question. I'm not a doctor. Where you live, and how the disease is impacting you, will change the answer. Rather than issuing an institution name, because we likely live in different countries, it may be better to look at what kind of specialist you would be seeing, and perhaps adjusting expectations a little. I know that it is common in the US to be assigned to a rheumatologist for treatment of fibromyalgia. This isn't the norm the world over, as they _may_ not have all the necessary experience. Rather, you may find it more helpful to see a Pain Specialist (actual doctor title), who can help you with the symptoms you experience. My own Pain Specialist also specialises in fibromyalgia. I also see a Physiotherapist who specialises in fibromyalgia, and a psychologist who specialises in chronic pain. All three regularly send each other reports. My general doctor isn't involved in the treatment of the illness, it's a specialist condition, and they are not. They'll always defer to the Pain Specialist. --- However, the biggest part of the question "haven't had any luck with treatment options of fibromyalgia" comes down to your expectations. FM is a chronic illness, that has both flare-ups and relapses. For many sufferers, but not all, there is _no_ expectation that they will ever be able to reach a level of normality. There is however, an expectation that you may go backwards every few years in what you are capable of, and what you are experiencing, regardless of whether or not you are capable of achieving near-normality. This is not an illness that can be "cured". For a lot of people the best that _can_ be done is to make it tolerable to live with _most_ of the time. If the treatment is taking the edge off, but you still find yourself highly disabled - that's normal. A very few number of people can return to near-normality, but for most sufferers, that's never going to happen. It doesn't matter what combination of medication/physio/diet/lifestyle regime that you're on. The illness is pervasive, and may affect all areas of life. However, without such a regime, you may suffer more than is strictly necessary. Having a team of specialists that communicate is probably the most helpful safety net.
- 6y ago