5 ms·

I was diagnosed with fibromyalgia ~15 years ago. Since then, having started an immunosuppressive for something else and it seemed to help with the pain- now the

I was diagnosed with fibromyalgia ~15 years ago. Since then, having started an immunosuppressive for something else and it seemed to help with the pain- now the doctors think it is psoriatic arthritis. I am in constant, mild pain. Some days it is nearly, but not quite debilitating. Some people think I am making it up, exaggerating, or that it is all in my head. There is no certain test for either condition- in particular, fibromyalgia is basically a bucket you get tossed into if nothing else makes sense. I am definitely sympathetic to people with chronic pain, because i know first-hand the extent to which it changes your personality, stress and anxiety tolerance, cognitive ability and focus. You are not alone. It sucks, big time, but you are not alone.

stordoff 6y ago
> or that it is all in my head I sometimes end up wondering that about myself. I have near-constant headaches of varying intensity (ranging from a barely noticeable ache to feeling like somebody a vice round my temples) with no known cause, and I occasionally find myself asking if I'm imagining it or it's psychosomatic. I think it stems from my frustration at not knowing the cause, but starting to doubt what you are sensing like that is an unpleasant feeling.
- jaggederest 6y ago
  Well, if it makes you feel any better, being psychosomatic doesn't mean it's not "real", it just means that there's an extra step in the causality. Like psychosomatic itching - you are genuinely feeling the irritation, it's not imaginary, but you can retrain yourself not to indulge to fix it. The same thing is true with other psychosomatic illness. Many people act like psychosomatic illness is in the same category as malingering, delusion, or antisocial behavior. It's not. It's a real thing that you're really experiencing, not some kind of moral failing, it just happens to have a root in neurology and psychology instead of a different causative origin. Is a headache any less real or painful just because it's caused by stress instead of a hangover? I would say no, if anything, the opposite. Same goes for psychosomatic nausea, high blood pressure, eczema, psoriasis, pain, dizziness, any of at least a dozen things. They're real things you're experiencing, that might have more to do with mental health than physical health, depending on the exact situation. But they're still all real - nobody with high blood pressure from somatic issues is imagining their numbers higher. So, trust yourself. What you're feeling is genuine, regardless of the source - the fact that that source might be on one or the other side of the extremely fuzzy line of "mind versus body" is no reason to question your own experience.
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!)
nignog101010 6y ago
Try turning off your cell phone/wifi router at night and see if you wake up feeling better.
JohnBooty 6y ago
Your story is so much like my partner's, I had to wonder if they had a secret HN account and wrote this post. With her initial diagnosis of fibro, we were... extremely disheartened to say the least. Professionals and laypeople alike hear that word and generally think of it as a made-up or at least psychosomatic disease. I get a little bit of that, even from professionals, when I mention ADHD. Multiply that by 10 and that's roughly what we experienced with fibro, when that was their diagnosis.

stordoff 6y ago

> or that it is all in my head I sometimes end up wondering that about myself. I have near-constant headaches of varying intensity (ranging from a barely noticeable ache to feeling like somebody a vice round my temples) with no known cause, and I occasionally find myself asking if I'm imagining it or it's psychosomatic. I think it stems from my frustration at not knowing the cause, but starting to doubt what you are sensing like that is an unpleasant feeling.

jaggederest 6y ago
Well, if it makes you feel any better, being psychosomatic doesn't mean it's not "real", it just means that there's an extra step in the causality. Like psychosomatic itching - you are genuinely feeling the irritation, it's not imaginary, but you can retrain yourself not to indulge to fix it. The same thing is true with other psychosomatic illness. Many people act like psychosomatic illness is in the same category as malingering, delusion, or antisocial behavior. It's not. It's a real thing that you're really experiencing, not some kind of moral failing, it just happens to have a root in neurology and psychology instead of a different causative origin. Is a headache any less real or painful just because it's caused by stress instead of a hangover? I would say no, if anything, the opposite. Same goes for psychosomatic nausea, high blood pressure, eczema, psoriasis, pain, dizziness, any of at least a dozen things. They're real things you're experiencing, that might have more to do with mental health than physical health, depending on the exact situation. But they're still all real - nobody with high blood pressure from somatic issues is imagining their numbers higher. So, trust yourself. What you're feeling is genuine, regardless of the source - the fact that that source might be on one or the other side of the extremely fuzzy line of "mind versus body" is no reason to question your own experience.

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!)

nignog101010 6y ago

Try turning off your cell phone/wifi router at night and see if you wake up feeling better.

JohnBooty 6y ago

Your story is so much like my partner's, I had to wonder if they had a secret HN account and wrote this post. With her initial diagnosis of fibro, we were... extremely disheartened to say the least. Professionals and laypeople alike hear that word and generally think of it as a made-up or at least psychosomatic disease. I get a little bit of that, even from professionals, when I mention ADHD. Multiply that by 10 and that's roughly what we experienced with fibro, when that was their diagnosis.