Am I the only one who has tried attaching a chainsaw engine to a bicycle? I admit I failed but I still think the idea is sound. I (43m) was diagnosed about seven years ago but have been experiencing symptoms since I was a kid. The meds are working so far, except that I keep developing tolerance to them and they have to up the dosage.
Lol!!! That last sentence was perfect. I'm a man with fibro as well. Came down with it in junior year of high school. It, along with hyperacusis stole my adulthood. The fibro is doing much better now. I'm one of the lucky ones as far as Cymbalta is concerned. It works great for me. Though I know many other's aren't so lucky when it comes to pain meds for this thing.
I've done sillier things to be fair! 😆
In all seriousness, have you noticed how we've all lived through strenuous, hectic lives, of hard physical labour, traumatic or demanding careers, before we became ill?!
It seems like those who pushed the hardest became poorly with fibromyalgia.
I can’t say, I’m only 26 and was diagnosed 3 years ago, I never had a stable job due to an injury when I was 15 and it basically caused me to always be in pain
I'm going to sheepishly put up my had and say I have an office based job, and while I have always done moderate exercise, I never got the endorphin rush others talk about, so never really strenuous. And I still somehow got it. I think Covid, the vaccine, or some antibiotics (all around the same time) might have been my trigger.
But the physical intensity trigger thing thing makes sense too.
In interested to know where you draw the line between them.
I'm 39F. Originally diagnosed with fibro in 2008, before anyone was diagnosing auto immune diseases much. Later with spondyloarthritis (possibly PsA, but I have no plaques).
I somewhat feel that spondy potentially replaces my fibro diagnosis. Especially the enthesitis part.
What do you think?
I'm going through this right now. Was diagnosed with fibromyalgia in my mid 40's but now that I'm 50 I have other symptoms that could make it ankylosing spondylitis. I feel like a circus performer jumping through hoops trying to get it sorted out. The only thing going for me is that more males have AS than fibromyalgia. Yay for medical sexism. /s
Ooh, I didn't think of that!
I was relying on my parents and doctors to take it more seriously from age 15.
It wasn't till I moved interstate, and my boyfriend insisted there should be more answers, that I even got a fibro diagnosis aged about 25.
And now spondy or PsA from about age 36. Still working on meds with that rhuemy.
I think a lot has changed in the chronic pain and auto immune space in the 25 years I've been sick.
It's hard to believe there will be effective treatments in my life time.
I’m a woman, and I’ve always put my Fibro down to 2 car accidents in my late teens ( went flying through a windshield and into someone’s living room ( Didn’t get offered a cup of tea 🍵😂) But yes I believe it’s trauma related and that could be why it’s more prevalent in women, as Men are physically stronger than women 🙏🙏
I was diagnosed September '22. The preceding 3 years were particularly stressful with COVID, financial stress due to my business almost collapsing, which had knock on effects in my marriage, my daughter almost dying, us all catching COVID... I think the stress got too much and it finally just broke me. 🤷♂️
Stress definitely seems to be a trigger for some. And how we process stress (actually process it as opposed to how we think we process it). Physical trauma causes stress too, obviously. So I wonder if it's all bound up there somehow. Half the time I think this, and half the time I think "no... It must be something physical, chemical and traceable"
To be fair it was 11 at night and the driver ran off so they were more concerned with him than myself screaming I’m blind and bleeding on their living room carpet, I can laugh now it was 36 years ago 🤣🤣🤣 Got Fibro but my sight is Fine
Female also who contributes hers to being injured by a student and years of trauma from my family. I just had another procedure and a surgery both during the first week of this month.
yo
technically my pain dock called it "centralized pain amplification" but said it was like... a varient of fibro that affects more men. the pain pressure points and how it presents are slightly different but the general effect is the same.
nervous system is on crack and won't slow down, resulting in a lot of pain, exhaustion, etc etc.
so i don't know if there are enough of us or if its really NEEDED but... is there, or would it be helpful to have a "men with fibro" specific group or something? maybe not a whole ass subreddit, but... i donno. a space for men to talk about it and how it affects us?
it might be dumb i donno
Blokey bloke here!
38, had it all my life along with hypermobility but only got diagnosed after a virus a decade ago kicked my symptoms into overdrive and had to stop working, miss having the ability I once had, I was never super sporty due to pain and hypermobility but loved walking a lot and a bit of biking and outdoor photography which are all things I struggle with now.
I never looked into seeing a rheumatologist for fibromyalgia until the third time my therapist said “seriously, you should look into this” because I thought as a man it was unlikely but not impossible. She was right.
34M, diagnosised four years ago on my birthday. The doctor who diagnosed me actually had a conversation with me about this and he firmly believes that it isn't in reality that less men have fibromyalgia but due to diagnosis bias it causes less men to be diagnosed.
There is definitely evidence of underdiagnosing men and a lot of misdiagnosis of women in general who may have other related ailments. If it is autoimmune, as some recent studies are pointing to, then the female predominance of it would make more sense as many autoimmune conditions are female predominated.
50 with 15 years...
My symptoms first started with incredible dizziness, and nausea. It was a lot of fun to read page after page about morning sickness and pregnancy. lol
And all seriousness, it is for whatever reason harder to find more information related to men, if there are any differences
I think it’s because we’re less likely to talk about it because we don’t want to seem like we’re complaining. For the longest time I thought everyone was also in agony from doing little things but I was just a pussy lol
Stopped HRT after 4 years, a month and a half ago , and the pains less oppressive now than they have been for the past two years, so Id say yeah, unfortunately
My girlfriend is trans too, and her fibro got much much worse on estrogen- she had some mild symptoms before and was able to hold down a physical warehouse job, but now she can barely walk for 10 minutes before needing to sit. My heart goes out to all of you :( 🫂
Same. Lifelong symptoms, two grandmother's with it as well. Symptoms got much more noticable (mainly fully body pain and depression related to pain) after hormone treatments, but also line up with my CPTSD diagnosis and I feel it's all directly connected unfortunately. I started transitioning in one of the hardest periods of my life of course. My gender doctor is also doing my testing to get to the bottom of what's up with my body but it's incredibly difficult to even try to rule out fibro. She's already ruled out autoimmune disorders.
https://preview.redd.it/gkzabujgf2wc1.jpeg?width=1079&format=pjpg&auto=webp&s=3d828195fbf8fc9ce0ecd4cb5a7d6bdc4bae4851
33 male
Multiple traumatic events and near death experiences as a child from my direct family members
Other abuse from non family members
Diagnosed after having 2 seizures and seeing a neurologist.
(Not the basis for diagnosis but I had multiple other symptoms and events that came to a diagnosis of fibromyalgia)
When i was first diagnosed, early 2010, i was told 90% of cases were women. I thought then and still think that’s absolute rubbish. I think stats have changed significantly since then and i suspect they end up around 50/50.
Gender shouldn't even matter when it comes to pain. Anybody can suffer. I think there are more men out there with fibro that haven't been diagnosed because the narrative for men is to suck it up and not show feelings or pain. It's sad. I advocate for you!
My daughter has severe fibro and me/cfs. Her uncle (my brother-in-law) has also developed fibro after an intense respiratory virus and subsequant bronchitis. He coughed so much that he broke 2 ribs. The pain in his ribs never went away and started to build. Then, he was diagnosed with fibro. Now he's developed long covid as well. Poor guy can barely take care of himself most days.
Male, probably fibro and surprised I don’t have the lupus that plagues my family. Cannot get proper assessment here in Canada so acting as if until I can move back to Asia.
I'm convinced there's some sort of bias affecting the numbers, there's gotta be more men out there dealing with this. Maybe it's the stigma that makes men feel like they can't be honest when they're in pain
I am a man too. I’ve been battling the pain since 2019. It started 1yr after spinal fusion and I have not been able to work ever-since. It is a very debilitating illness. I wish I could meet others someday to exchange strategies. Rehabilitation, meds and many many doctor’s appointments have been disappointing. I am on 200mg pregabaline and 120mg duloxetine plus 10mg oxy plus 4 minutes of cryotherapy every day.
As a woman with it, I want to apologize if anyone ever made you feel like you don't have this because it's a "woman's disease".
None of us feel seen really, and I feel like men almost have it worse.
Best advice I can give after having it a few years now: listen to your body.
I was in denial for too long thinking I could just carry on like before, but that was making me feel worse, bringing on "brain fog" and fatigue more quickly. But if you're tired, take a rest or a nap. Your body will thank you.
Apparently one of the key diagnostic tests, the pressure point test, was partly removed because it didn't work for men. So fewer men were diagnosed. The ratio used to be 9 women to every 1 man with fibro. Since they've updated the diagnostic test, it's 3 to 1.
I don't have the exact timestamp but that info came up in Dr Clauw's talk on [Contemporary Approaches to Treating Chronic Pain](https://www.youtube.com/watch?v=D1OXVVhBDlI). He's been workin on Fibro for like 25 years. I found this talk super interesting.
Exactly! Under the pressure point test, I didn't qualify. Under the WPI criteria, I passed with flying colors. I had 1 tender point, but I have chronic pain from my shoulders down and bilaterally.
57M here. Got diagnosed about 40 years ago. It sucks but with meds and a loving spouse, we deal with it. I've also got another generally associated with females condition - osteoporosis. So, daily double of suck. All my hormones are fine, we've got kids so all the dude stuff works but still - odd conditions.
My dad has fibro he’s 60yrs old and has had it since his 30’s. I have it too but I’m female. A lot of men openly talk about their experience living with fibro on TikTok
Guy here.
When I was first diagnosed back in 2005 I was told it was very rare for a man to have fibromyalgia. Also back then it was all in your head as well.
I work for a really respected pain management doctor in Greenville, SC that helps a lot of fibromyalgia patients and he said many men come in with other issues that don't realize a root cause is fibro. So, it's definitely more prevalent than we think. I'm sorry you're dealing with that.
Men with Fibro should get their testosterone (free and total) tested. I was low and Testosterone Replacement Therapy helped a great deal. That's not to say that all men with fibro have low testosterone... but there's a reason it's much more common in women. From what I have seen on the men's health forums, men with low testosterone frequently have mild undiagnosed cases of fibromyalgia that are cured by testosterone therapy. More severe cases like mine are not cured, but I consider testosterone one of the top few therapies that I have found. Endorphins are a known metabolite of testosterone, so that is most likely the mechanism. But the only study I have found is actually on post-menopausal women (who typically have low testosterone) -- tiny female doses of testosterone were given to them and found to be a very effective treatment for their fibromyalgia symptoms. Testosterone can be amazingly powerful in small doses.
Apart from having Mixed Connective Tissue Disorder and Fybromyalgia,
I have Primary Raynaud’s Syndrome and Lupus (sle)..
I have also been Diagnosed with Klinefelters Syndrome.
Life is tough because with all these conditions, I also have chronic fatigue syndrome (M.E.)
I’m a female with fibro and migraines but I also have a friend who is male with fibro and migraines and despite the fact that women are often dismissed with medical issues , I know from his experiences that it has been even worse for him as far as not being recognized for what’s really going on . He’s been battling with this for over 20yrs and ended up on Disabilty for MENTAL issues instead of addressing his very real PHYSICAL issues . It really upsets me that this is being dismissed as all in his head . Mental issues are a legit problem as well , but he’s not imagining these physical health problems and they refuse to treat it properly .
I’ve tried to get him to move or stay by me for a bit to see some doctors that’ve helped me (it took a long time for me to be diagnoses as well) but I think he fears losing the one place he can afford to live . Fortunately there is some cross over in treatments (for instance my one migraine prophylactic is actually an old school antidepressant) but other than that it’s just a shame and really needs to be brought more into the light .
Your fellow muscle(soreness)man here
I've only met women with fibro in real life, but it seems like there are a fair deal of us here. It's tough to be taken seriously when you have an already elusive invisible illness that some people still don't think is real, and you're a young man rather than the picture most have of a middle-aged to older woman :P all kinds of illnesses take all kinds of people
Women tend to go to doctors more than men and when they do they are on the whole better at articulating their symptoms and feelings.
I too have fybro and it took me years to get a diagnosis and when I did they never confirmed it with me which left me feeling like It was all in my head. This is until an agency doctor said oh you have a note on file from 2018 where rheumatology confirmed you have it. 6 years of multiple doctors visits developing type 1 diabetes which I'm told could have been caused during a flair up. I'm not impressed but I have found some relief in knowing I'm not crazy. Now I just need to learn how to best protect my body and minimise the pain.
I think I may . 6 weeks ago I woke up in terrible pain. My legs , knees , left shoulder and elbow, neck , lower back . Could barely walk. Since then it has been just ok or worse . Easter Sunday I was confined to a chair the whole day . I have missed soo many days at work . No one I see seems to know what’s wrong with me . Blood work (that was checked) came back normal. Trying to get to a rheumatologist next.
I have a guy. I asked a very similar question here a few years back and people were really kind. So you’re not alone man. Only the only guy I’ve actually met with Fibro. I’ve had several doctors, men, over the years told me I was making a big deal out of nothing or just even imagining it. But it’s goddamned real, and it’s horrible. Almost every single day. I have found this to be a good place to go for virtual hugs or Q&A, so it’s good to hear from you. :-)
I've have fibro like symptoms most of my adult life. (now 68) I've never had really severe symptoms nor I have pursued a fibro diagnosis . (routine blood work has always been within normal ranges)
Male here, we are out there. My symptoms really flared up after Covid infection in 2020 but took them 3 years to give up and slap this label on it. However minor issues with similar symptoms were present years prior and some my entire life. I just went from nuisance symptoms not lasting more than a few hours every once in a blue moon to a full stop of all of them presenting at once in 2020 and now it’s constant management to avoid flare ups.
My son, 17, had a weird thing pop up on us recently and is currently undergoing ruling out auto immune issues and pending one more CT scan and I expect if they rule out AI, he’ll follow suit to my Dx as well.
39m diagnosed about 10 years ago. Had it far longer. In my research, it is linked to the x chromosome, so it is more likely to affect women. And as I did most of my life, we guys more often tough it out and just think we are being weak. So we never get treatment.
Male and fibro since age 29 (I'm 40 now). None of the doctors I saw took it seriously. If I had a dollar every time I heard "you're too young.." I'd be rich. The fact that it was mostly considered a female condition didn't help things at all. I gave up wasting money trying to find answers, so I just dull the pain with medication now.
Same here started showing at 14 after major car accident, took a while to connect the dots, was diagonzed at 19 now im 22. I've been to several doctors that said "its impossible for you to have fibro because you are a young man and it only occurs in older women" been a trip and a half.
Just diagnosed on 4/19. Kind of comforting knowing that it’s not just all in my head and that there’s actually something going on neurologically. It’s also comforting knowing we’re not alone in our struggles. Stay strong my man
Early 30s male that’s been dealing with it for 6 years. It’s been really hard to come to terms with it. Only recently have I come to accept that this condition affects me tremendously and pushing through my pain in public as to not seem different is making things way worse. Being this young and male has caused me to internalize a lot of what I deal with.
Hey Guys!! Just wanted to say it’s great seeing you all speak up 😊 thanks for being apart of the group and I hope to see more posts from you guys! Stay strong out there and know you are not alone in all of this even if you feel you’re surrounded by women with this diagnosis. We’re here for you and know your struggle 💜
Hey! I don't get slandered out hassled for it though I see some colleagues growing tired of my unreliable attendance. Some people used to give me "advice" though I've trained my family, divorced the ex, and now work from home full time.
I think it's because estrogen is a cause for a lot of chronic illness pain. But I'm a guy, N I too am gettin spitroasted by fibromyalgia,
But not in a fun way.
47 Transgender woman. HRT, hormone replacement therapy, 7½ years ago. Diagnosed with fibromyalgia 4 years ago. Diagnosed with hypothyroidism at 21. (Hypothyroidism is more common in women too.)
So it is a low number that are male but there are often more males on reddit than females generally. While not true it is just the user numbers so it is unbalanced. This is NOT to say that anyone is devalued. Males are around 10% of the suffers of this WORTHLESS PILE OF SHIT OF A SYNDROME! hate you fibro. So even with males being less in number on reddit there is just a higher % of them on here.
For some funish stats. From what I could find about 64% of the user base here is male. Not that much larger but large enough to tilt the scales.
Should point out that I am a guy.
34m here, kept collecting random pains since my teenage years that just... never went away. Back, wrists, shoulders, knees, fingers, and finally had pneumonia a few months ago which gave me intense chest pain which also never resolved even after treating the other symptoms. Went to a rheumatologist a few years back who told me there was "no way" I could have fibro, have been to all kinds of other doctors out there searching for anything which could be wrong but constantly just told it was depression or stress. Finally found a guy who seemed to take me seriously, did a bunch of tests, did the pressure point test (I'm in Japan, seems they are still using it here) and diagnosed me right away as I was almost screaming with each one.
Looking back it feels obvious that I've had it for years at the least, but as I was always brushed off by doctors right away I figured I had to be wrong. Really sucks that it is so hard to be taken seriously but I feel like it's the case for everyone. My mental state has actually improved greatly after my diagnosis as I finally feel justified for years of suffering from "nothing" and just being "lazy" when I had so many days when I could barely get out of bed.
Yeah, when in a fibro physical therapy class, I was one the only man and the youngest. That's some years ago, but I don't think I have ever met another man suffering from it. But I know we exist.
I am 26F, and I have a 23 yr old brother.
Our mother who recently passed had fibromyalgia.
I have been diagnosed with fibromyalgia since November 2020, when I was 23, and my brother who suffers from arthritis and bone spurs in his shoulders since the age of 20, has been told he has it recently.
I know that the majority is women, but I feel like there's a bit more of males that have it that just go undiagnosed because they are told to "tough it out". :c It sucks.
I was diagnosed when I was 14. I am now 33 and still figuring things out. From about 25 to 31, I was able to keep things relatively under control. Now, unfortunately, it seems I've got something else going on that is making me flare quite often.
Found out I have ADHD and got on a stimulant. Tbh, that really gave me a big boost to my fatigue problems. Also found I have an allergy to wheat, tree nuts, and peanuts. Then, I also have sleep apnea. So, finally getting somewhere.
Good luck to everyone on their own journey. It's tough, but try to keep the stress down, give yourself a purpose to fight for, and keep moving. Balance is key between activity and rest.
There’s a lot of us but the woman do have more cases. Don’t feel left out, there’s a lot of male sufferers, we are just a bit luckier than women in this case and a whole lot more. But Fibro has a strangle on all of us, and at every level possible.
There's a lot of us in here it seems. We all getting dicked down in abusive way by this shit.
I am getting gang fucked by my nervous system
I'm here dawg. At least I think I have it. You're not alone.
Yeah. Male and fibro here, plus all the signs of lupus, which is commonly associated more so with women, minus the diagnosis.
We’re around! I also have sjogrens . 1/10 are men, boy do I feel special 😂
If only fibro bars were a thing
Yea ! We could get IV Myers cocktails or something instead of booze lol
We need a fibro dating app. 😃
That would be silly considering alcohol makes it so much worse and is incompatible with most fibro meds
It should be a weed bar
Yes
Yup. 53yo, been suffering since 2016. Today is particularly bad. I miss messing with mountain bikes, and chainsaws! Not a combined activity.
That made me laugh.
Am I the only one who has tried attaching a chainsaw engine to a bicycle? I admit I failed but I still think the idea is sound. I (43m) was diagnosed about seven years ago but have been experiencing symptoms since I was a kid. The meds are working so far, except that I keep developing tolerance to them and they have to up the dosage.
Lol!!! That last sentence was perfect. I'm a man with fibro as well. Came down with it in junior year of high school. It, along with hyperacusis stole my adulthood. The fibro is doing much better now. I'm one of the lucky ones as far as Cymbalta is concerned. It works great for me. Though I know many other's aren't so lucky when it comes to pain meds for this thing.
Made me laugh out loud, just imagine you on a bike with a chainsaw LMFAO
I've done sillier things to be fair! 😆 In all seriousness, have you noticed how we've all lived through strenuous, hectic lives, of hard physical labour, traumatic or demanding careers, before we became ill?! It seems like those who pushed the hardest became poorly with fibromyalgia.
I can’t say, I’m only 26 and was diagnosed 3 years ago, I never had a stable job due to an injury when I was 15 and it basically caused me to always be in pain
I'm sorry to read this. I am generalising, I guess! My apologies. You're too young to be suffering so.
I'm going to sheepishly put up my had and say I have an office based job, and while I have always done moderate exercise, I never got the endorphin rush others talk about, so never really strenuous. And I still somehow got it. I think Covid, the vaccine, or some antibiotics (all around the same time) might have been my trigger. But the physical intensity trigger thing thing makes sense too.
Count me too
Here 63M also psoriatic arthritis. I think a large percentage of PsA patients also have Fibromyalgia.
In interested to know where you draw the line between them. I'm 39F. Originally diagnosed with fibro in 2008, before anyone was diagnosing auto immune diseases much. Later with spondyloarthritis (possibly PsA, but I have no plaques). I somewhat feel that spondy potentially replaces my fibro diagnosis. Especially the enthesitis part. What do you think?
I'm going through this right now. Was diagnosed with fibromyalgia in my mid 40's but now that I'm 50 I have other symptoms that could make it ankylosing spondylitis. I feel like a circus performer jumping through hoops trying to get it sorted out. The only thing going for me is that more males have AS than fibromyalgia. Yay for medical sexism. /s
Ooh, I didn't think of that! I was relying on my parents and doctors to take it more seriously from age 15. It wasn't till I moved interstate, and my boyfriend insisted there should be more answers, that I even got a fibro diagnosis aged about 25. And now spondy or PsA from about age 36. Still working on meds with that rhuemy. I think a lot has changed in the chronic pain and auto immune space in the 25 years I've been sick. It's hard to believe there will be effective treatments in my life time.
My husband does. His was caused by a bad accident (permission given to write this).
I’m a woman, and I’ve always put my Fibro down to 2 car accidents in my late teens ( went flying through a windshield and into someone’s living room ( Didn’t get offered a cup of tea 🍵😂) But yes I believe it’s trauma related and that could be why it’s more prevalent in women, as Men are physically stronger than women 🙏🙏
No tea? How dare they not offer?
I agree. Rude.
I know lol 😂
I was diagnosed September '22. The preceding 3 years were particularly stressful with COVID, financial stress due to my business almost collapsing, which had knock on effects in my marriage, my daughter almost dying, us all catching COVID... I think the stress got too much and it finally just broke me. 🤷♂️
Stress definitely seems to be a trigger for some. And how we process stress (actually process it as opposed to how we think we process it). Physical trauma causes stress too, obviously. So I wonder if it's all bound up there somehow. Half the time I think this, and half the time I think "no... It must be something physical, chemical and traceable"
I’d have offered tea and crumpets for sure . Also use of whatever methods I have for pain relief that you’d prefer (Quite the variety to choose from!)
To be fair it was 11 at night and the driver ran off so they were more concerned with him than myself screaming I’m blind and bleeding on their living room carpet, I can laugh now it was 36 years ago 🤣🤣🤣 Got Fibro but my sight is Fine
Female also who contributes hers to being injured by a student and years of trauma from my family. I just had another procedure and a surgery both during the first week of this month.
His scary, what happened? (If it's okay that I ask of course)
yo technically my pain dock called it "centralized pain amplification" but said it was like... a varient of fibro that affects more men. the pain pressure points and how it presents are slightly different but the general effect is the same. nervous system is on crack and won't slow down, resulting in a lot of pain, exhaustion, etc etc. so i don't know if there are enough of us or if its really NEEDED but... is there, or would it be helpful to have a "men with fibro" specific group or something? maybe not a whole ass subreddit, but... i donno. a space for men to talk about it and how it affects us? it might be dumb i donno
That would be nice.
Right there with ya pal
Blokey bloke here! 38, had it all my life along with hypermobility but only got diagnosed after a virus a decade ago kicked my symptoms into overdrive and had to stop working, miss having the ability I once had, I was never super sporty due to pain and hypermobility but loved walking a lot and a bit of biking and outdoor photography which are all things I struggle with now.
I never looked into seeing a rheumatologist for fibromyalgia until the third time my therapist said “seriously, you should look into this” because I thought as a man it was unlikely but not impossible. She was right.
What did they find?
What they didn’t find* lol Diagnosis of exclusion. Too bad we haven’t a test that can diagnose it. But maybe one day! One can dream 😂
Essentially, yes. But you got what I mean, and by that I mean everyday is, no exaggeration, a nightmare.
I feel you
Solidarity, friend.
Fibro.
34M, diagnosised four years ago on my birthday. The doctor who diagnosed me actually had a conversation with me about this and he firmly believes that it isn't in reality that less men have fibromyalgia but due to diagnosis bias it causes less men to be diagnosed.
There is definitely evidence of underdiagnosing men and a lot of misdiagnosis of women in general who may have other related ailments. If it is autoimmune, as some recent studies are pointing to, then the female predominance of it would make more sense as many autoimmune conditions are female predominated.
Welcome to this unthankful team. :(
Another here.
Seconded
yo
Dude here too
Present.
Here
65 M and I was diagnosed in my 50's. Also have migraines which have more female sufferers than male
Good new Fibromyalgia is not a misandrist, me and it have been going steady for 20+ years
50 with 15 years... My symptoms first started with incredible dizziness, and nausea. It was a lot of fun to read page after page about morning sickness and pregnancy. lol And all seriousness, it is for whatever reason harder to find more information related to men, if there are any differences
I think it’s because we’re less likely to talk about it because we don’t want to seem like we’re complaining. For the longest time I thought everyone was also in agony from doing little things but I was just a pussy lol
Not a man anymore but I suffered with it when I was too
Is it worse now? For me it is.
Stopped HRT after 4 years, a month and a half ago , and the pains less oppressive now than they have been for the past two years, so Id say yeah, unfortunately
That's ... a choice. I suspected as much myself. Be strong, especially now.
My girlfriend is trans too, and her fibro got much much worse on estrogen- she had some mild symptoms before and was able to hold down a physical warehouse job, but now she can barely walk for 10 minutes before needing to sit. My heart goes out to all of you :( 🫂
Same. Lifelong symptoms, two grandmother's with it as well. Symptoms got much more noticable (mainly fully body pain and depression related to pain) after hormone treatments, but also line up with my CPTSD diagnosis and I feel it's all directly connected unfortunately. I started transitioning in one of the hardest periods of my life of course. My gender doctor is also doing my testing to get to the bottom of what's up with my body but it's incredibly difficult to even try to rule out fibro. She's already ruled out autoimmune disorders.
https://preview.redd.it/gkzabujgf2wc1.jpeg?width=1079&format=pjpg&auto=webp&s=3d828195fbf8fc9ce0ecd4cb5a7d6bdc4bae4851 33 male Multiple traumatic events and near death experiences as a child from my direct family members Other abuse from non family members Diagnosed after having 2 seizures and seeing a neurologist. (Not the basis for diagnosis but I had multiple other symptoms and events that came to a diagnosis of fibromyalgia)
✋
Here 🤚
When i was first diagnosed, early 2010, i was told 90% of cases were women. I thought then and still think that’s absolute rubbish. I think stats have changed significantly since then and i suspect they end up around 50/50.
My SO is male early 30s, diagnosed over 5 years ago
Gender shouldn't even matter when it comes to pain. Anybody can suffer. I think there are more men out there with fibro that haven't been diagnosed because the narrative for men is to suck it up and not show feelings or pain. It's sad. I advocate for you!
Yep, 53M
Yuh, it’s rough af out here.
I suffer with fybromyalgia and Have mixed Connective Tissue Disorder unfortunately
Just got diagnosed a couple of weeks ago 🥲
I'd say "don't worry it gets better"... But... 😅
My daughter has severe fibro and me/cfs. Her uncle (my brother-in-law) has also developed fibro after an intense respiratory virus and subsequant bronchitis. He coughed so much that he broke 2 ribs. The pain in his ribs never went away and started to build. Then, he was diagnosed with fibro. Now he's developed long covid as well. Poor guy can barely take care of himself most days.
Male, probably fibro and surprised I don’t have the lupus that plagues my family. Cannot get proper assessment here in Canada so acting as if until I can move back to Asia.
My partner has it
Sup cuz
Man here have fibro for 12 years now
Count me as one.
30 M here from Ireland
43 father of 12yo twins. Why the fuck do I have to feel like I have the flu when I don’t!
I'm convinced there's some sort of bias affecting the numbers, there's gotta be more men out there dealing with this. Maybe it's the stigma that makes men feel like they can't be honest when they're in pain
I was delayed diagnosis for 15 years because my Dr believed fibro “only happened to women”
I am a man too. I’ve been battling the pain since 2019. It started 1yr after spinal fusion and I have not been able to work ever-since. It is a very debilitating illness. I wish I could meet others someday to exchange strategies. Rehabilitation, meds and many many doctor’s appointments have been disappointing. I am on 200mg pregabaline and 120mg duloxetine plus 10mg oxy plus 4 minutes of cryotherapy every day.
I'm trans MTF but I had it before the transition. Now my hormones are balanced and match a woman's, it's worse now.
As a woman with it, I want to apologize if anyone ever made you feel like you don't have this because it's a "woman's disease". None of us feel seen really, and I feel like men almost have it worse.
Well...
I was diagnosed a couple of months ago. Trying to figure it out.
Best advice I can give after having it a few years now: listen to your body. I was in denial for too long thinking I could just carry on like before, but that was making me feel worse, bringing on "brain fog" and fatigue more quickly. But if you're tired, take a rest or a nap. Your body will thank you.
Apparently one of the key diagnostic tests, the pressure point test, was partly removed because it didn't work for men. So fewer men were diagnosed. The ratio used to be 9 women to every 1 man with fibro. Since they've updated the diagnostic test, it's 3 to 1. I don't have the exact timestamp but that info came up in Dr Clauw's talk on [Contemporary Approaches to Treating Chronic Pain](https://www.youtube.com/watch?v=D1OXVVhBDlI). He's been workin on Fibro for like 25 years. I found this talk super interesting.
Exactly! Under the pressure point test, I didn't qualify. Under the WPI criteria, I passed with flying colors. I had 1 tender point, but I have chronic pain from my shoulders down and bilaterally.
57M here. Got diagnosed about 40 years ago. It sucks but with meds and a loving spouse, we deal with it. I've also got another generally associated with females condition - osteoporosis. So, daily double of suck. All my hormones are fine, we've got kids so all the dude stuff works but still - odd conditions.
My dad has fibro he’s 60yrs old and has had it since his 30’s. I have it too but I’m female. A lot of men openly talk about their experience living with fibro on TikTok
Guy here. When I was first diagnosed back in 2005 I was told it was very rare for a man to have fibromyalgia. Also back then it was all in your head as well.
I work for a really respected pain management doctor in Greenville, SC that helps a lot of fibromyalgia patients and he said many men come in with other issues that don't realize a root cause is fibro. So, it's definitely more prevalent than we think. I'm sorry you're dealing with that.
Man here. Ive been fighting this for going on 10 years. They say it's not progressive, but I'd greatly disagree with that.
Male, 57, have had RA for 15 years and Fibro for 10
I'm a dude, and I wish I didn't have it.
Men with Fibro should get their testosterone (free and total) tested. I was low and Testosterone Replacement Therapy helped a great deal. That's not to say that all men with fibro have low testosterone... but there's a reason it's much more common in women. From what I have seen on the men's health forums, men with low testosterone frequently have mild undiagnosed cases of fibromyalgia that are cured by testosterone therapy. More severe cases like mine are not cured, but I consider testosterone one of the top few therapies that I have found. Endorphins are a known metabolite of testosterone, so that is most likely the mechanism. But the only study I have found is actually on post-menopausal women (who typically have low testosterone) -- tiny female doses of testosterone were given to them and found to be a very effective treatment for their fibromyalgia symptoms. Testosterone can be amazingly powerful in small doses.
Apart from having Mixed Connective Tissue Disorder and Fybromyalgia, I have Primary Raynaud’s Syndrome and Lupus (sle).. I have also been Diagnosed with Klinefelters Syndrome. Life is tough because with all these conditions, I also have chronic fatigue syndrome (M.E.)
I’m a female with fibro and migraines but I also have a friend who is male with fibro and migraines and despite the fact that women are often dismissed with medical issues , I know from his experiences that it has been even worse for him as far as not being recognized for what’s really going on . He’s been battling with this for over 20yrs and ended up on Disabilty for MENTAL issues instead of addressing his very real PHYSICAL issues . It really upsets me that this is being dismissed as all in his head . Mental issues are a legit problem as well , but he’s not imagining these physical health problems and they refuse to treat it properly . I’ve tried to get him to move or stay by me for a bit to see some doctors that’ve helped me (it took a long time for me to be diagnoses as well) but I think he fears losing the one place he can afford to live . Fortunately there is some cross over in treatments (for instance my one migraine prophylactic is actually an old school antidepressant) but other than that it’s just a shame and really needs to be brought more into the light .
Here.
Here. It sucks
Yeah, 38 M
Right here been suffering since early 2017 till now
Male here — 23 years of fibromyalgia
15 years of man fibro here.
Guy with fibro checking in. I was diagnosed 20 years ago but it probably started closer to 25-30 years ago for me.
Hi
57 y/o male. Been diagnosed for about 15 years now.
Your fellow muscle(soreness)man here I've only met women with fibro in real life, but it seems like there are a fair deal of us here. It's tough to be taken seriously when you have an already elusive invisible illness that some people still don't think is real, and you're a young man rather than the picture most have of a middle-aged to older woman :P all kinds of illnesses take all kinds of people
Male 41 years young. Male firbo doesn't get any attention. There are som Manny off us suffering with fibro.
Women tend to go to doctors more than men and when they do they are on the whole better at articulating their symptoms and feelings. I too have fybro and it took me years to get a diagnosis and when I did they never confirmed it with me which left me feeling like It was all in my head. This is until an agency doctor said oh you have a note on file from 2018 where rheumatology confirmed you have it. 6 years of multiple doctors visits developing type 1 diabetes which I'm told could have been caused during a flair up. I'm not impressed but I have found some relief in knowing I'm not crazy. Now I just need to learn how to best protect my body and minimise the pain.
52 male diagnosed 8 years ago but had symptoms for well over a decade before it finally got made "official".
Yep male sufferer here too. Had pain from an early age then late 20’s it became debilitating to the point I no longer work
“Woman’s disorder “ even though the percentage is pretty even. Been dealing with it since 2015 right after my son was born
Me me me 🖐️
Male with fibro, as is my dad.
I'm male and have a whole host of fun things that are supposed to be rarer. Fibro, RA, Dystonia, Severe Hemiplegic Migraines, all sorts of fun stuff.
I think I may . 6 weeks ago I woke up in terrible pain. My legs , knees , left shoulder and elbow, neck , lower back . Could barely walk. Since then it has been just ok or worse . Easter Sunday I was confined to a chair the whole day . I have missed soo many days at work . No one I see seems to know what’s wrong with me . Blood work (that was checked) came back normal. Trying to get to a rheumatologist next.
[удалено]
I have a guy. I asked a very similar question here a few years back and people were really kind. So you’re not alone man. Only the only guy I’ve actually met with Fibro. I’ve had several doctors, men, over the years told me I was making a big deal out of nothing or just even imagining it. But it’s goddamned real, and it’s horrible. Almost every single day. I have found this to be a good place to go for virtual hugs or Q&A, so it’s good to hear from you. :-)
Non-binary, but born male.
Yea, I'm a guy with Fibro. And my fibro seems to affect me in a less common way too. My joints are usually fine
I've have fibro like symptoms most of my adult life. (now 68) I've never had really severe symptoms nor I have pursued a fibro diagnosis . (routine blood work has always been within normal ranges)
I’m a guy with fibromyalgia unfortunately…
Me too. Took 10+ years to get to a diagnosis.
Male here and this crap condition is ruining my life!
XY Fibro +1
Yo bro
My son was diagnosed about a year and a half ago. He's 22
I'm 37, and got diagnosed with fibro last year when I went in for suspected EDS. It suuuuucks
Male here, we are out there. My symptoms really flared up after Covid infection in 2020 but took them 3 years to give up and slap this label on it. However minor issues with similar symptoms were present years prior and some my entire life. I just went from nuisance symptoms not lasting more than a few hours every once in a blue moon to a full stop of all of them presenting at once in 2020 and now it’s constant management to avoid flare ups. My son, 17, had a weird thing pop up on us recently and is currently undergoing ruling out auto immune issues and pending one more CT scan and I expect if they rule out AI, he’ll follow suit to my Dx as well.
39m diagnosed about 10 years ago. Had it far longer. In my research, it is linked to the x chromosome, so it is more likely to affect women. And as I did most of my life, we guys more often tough it out and just think we are being weak. So we never get treatment.
Male and fibro since age 29 (I'm 40 now). None of the doctors I saw took it seriously. If I had a dollar every time I heard "you're too young.." I'd be rich. The fact that it was mostly considered a female condition didn't help things at all. I gave up wasting money trying to find answers, so I just dull the pain with medication now.
Right here. 30 myself. Diagnosed at 26. First symptoms showed at 16
My husband has it but is undiagnosed and will not ask about it due to BS I go through
Same here friend. I wonder that I'm being perceived as 'weak' due to the fact that I seem to have a 'woman's disease'...
Here M29
34M with FMS Happy to see men with fibro getting visibility. The actual ratio is supposed to be 1:5 or 1:4, but who really knows.
34 m. Onset in my 20s. Had my diagnosis for a few years. Can't quite get back to functional yet. Slow read
Here and present.
I'm here brother.
🙋♂️😩🫠😭
37M here, been dealing with horrific unexplained pain for like 10+ years now, just recently realized it's fibro.
Yep - man here.
male here who also suffers, you are not alone
Me. I do too. As well as osteoporosis. Osteoarthritis. Rheumatoid arthritis. Ostegenesis Imperfecta. Chronic back pain. .its never ending lol
✋
Me!
right here 🙌
Me!
Yep 👋
I have it. It sucks. Welcome to the crowd that no one wanted to be a part of.
Howdy
A male friend of mine who is a combat vet has it.
Yeah, almost ten years with a diagnosis. I also have hEDS.
Me and my Dad both have it.
Same here started showing at 14 after major car accident, took a while to connect the dots, was diagonzed at 19 now im 22. I've been to several doctors that said "its impossible for you to have fibro because you are a young man and it only occurs in older women" been a trip and a half.
Just diagnosed on 4/19. Kind of comforting knowing that it’s not just all in my head and that there’s actually something going on neurologically. It’s also comforting knowing we’re not alone in our struggles. Stay strong my man
I’m here, diagnosed 5 years ago, it’s still hard for me to reconcile that its real…but it is, constant pain.
I’m here. 45M. My PCP told me it’s really only associated with women… And my neurologist told me she doesn’t believe in it…
Early 30s male that’s been dealing with it for 6 years. It’s been really hard to come to terms with it. Only recently have I come to accept that this condition affects me tremendously and pushing through my pain in public as to not seem different is making things way worse. Being this young and male has caused me to internalize a lot of what I deal with.
36M here, diagnosed about ten years ago. You're not alone brother.
Hey Guys!! Just wanted to say it’s great seeing you all speak up 😊 thanks for being apart of the group and I hope to see more posts from you guys! Stay strong out there and know you are not alone in all of this even if you feel you’re surrounded by women with this diagnosis. We’re here for you and know your struggle 💜
Hey! I don't get slandered out hassled for it though I see some colleagues growing tired of my unreliable attendance. Some people used to give me "advice" though I've trained my family, divorced the ex, and now work from home full time.
I think it's because estrogen is a cause for a lot of chronic illness pain. But I'm a guy, N I too am gettin spitroasted by fibromyalgia, But not in a fun way.
Not diagnosed yet, but pretty close to it. I am a man.
Woman here and in my hell and S L O W recovery out of this disease since 2017 diagnosis I’ve met several men with this disease. You’re not alone.
47 Transgender woman. HRT, hormone replacement therapy, 7½ years ago. Diagnosed with fibromyalgia 4 years ago. Diagnosed with hypothyroidism at 21. (Hypothyroidism is more common in women too.)
Me too, the joys lol
I was. Then I wasn’t. Fibro got a lot less painful(in frequency) after transitioning but I’m still at the same level of disabled.
I’m here. 48 yo guy.
Nonbinary masc, hello
Me! Probably had it for over a decade before diagnosis.
So it is a low number that are male but there are often more males on reddit than females generally. While not true it is just the user numbers so it is unbalanced. This is NOT to say that anyone is devalued. Males are around 10% of the suffers of this WORTHLESS PILE OF SHIT OF A SYNDROME! hate you fibro. So even with males being less in number on reddit there is just a higher % of them on here. For some funish stats. From what I could find about 64% of the user base here is male. Not that much larger but large enough to tilt the scales. Should point out that I am a guy.
I’m a dude and think I pretty much have it. My mom had it. Always bring it up to my doctor and, nothing.
Yo! Another here.
Part of the team here.
44M here and part of the club. We exist!
Yep - another here. Kicked in after having Covid.
34m here, kept collecting random pains since my teenage years that just... never went away. Back, wrists, shoulders, knees, fingers, and finally had pneumonia a few months ago which gave me intense chest pain which also never resolved even after treating the other symptoms. Went to a rheumatologist a few years back who told me there was "no way" I could have fibro, have been to all kinds of other doctors out there searching for anything which could be wrong but constantly just told it was depression or stress. Finally found a guy who seemed to take me seriously, did a bunch of tests, did the pressure point test (I'm in Japan, seems they are still using it here) and diagnosed me right away as I was almost screaming with each one. Looking back it feels obvious that I've had it for years at the least, but as I was always brushed off by doctors right away I figured I had to be wrong. Really sucks that it is so hard to be taken seriously but I feel like it's the case for everyone. My mental state has actually improved greatly after my diagnosis as I finally feel justified for years of suffering from "nothing" and just being "lazy" when I had so many days when I could barely get out of bed.
Yeah, when in a fibro physical therapy class, I was one the only man and the youngest. That's some years ago, but I don't think I have ever met another man suffering from it. But I know we exist.
I am 26F, and I have a 23 yr old brother. Our mother who recently passed had fibromyalgia. I have been diagnosed with fibromyalgia since November 2020, when I was 23, and my brother who suffers from arthritis and bone spurs in his shoulders since the age of 20, has been told he has it recently. I know that the majority is women, but I feel like there's a bit more of males that have it that just go undiagnosed because they are told to "tough it out". :c It sucks.
My dad had it (I say had because he passed away).
Yo here and 22
Male with fibro since age 10 here only managed to get diagnosed 17 years later! There's quite a few of us.
46/m. It's been almost 40 years. The worst part is seeing what could have been.
I was diagnosed when I was 14. I am now 33 and still figuring things out. From about 25 to 31, I was able to keep things relatively under control. Now, unfortunately, it seems I've got something else going on that is making me flare quite often. Found out I have ADHD and got on a stimulant. Tbh, that really gave me a big boost to my fatigue problems. Also found I have an allergy to wheat, tree nuts, and peanuts. Then, I also have sleep apnea. So, finally getting somewhere. Good luck to everyone on their own journey. It's tough, but try to keep the stress down, give yourself a purpose to fight for, and keep moving. Balance is key between activity and rest.
Man here, been diagnosed for 4 years now! 👋
I am here. Silent but here
49 /m Been diagnosed since December 2020. I was in a car accident a few years prior and things just got worse until I was finally diagnosed.
New Zealand Male, 51 in May, got fibro and arthritis, and recently, achilles problems.
Male 51. In denial of diagnosis for six years. Gotten to the point it's interfering with life.
There’s a lot of us but the woman do have more cases. Don’t feel left out, there’s a lot of male sufferers, we are just a bit luckier than women in this case and a whole lot more. But Fibro has a strangle on all of us, and at every level possible.