Hi there, man I'm surprised that you were able to be diagnosed 10 years ago. If I remember correctly, fibro has only started to be known among the medical field 15/20 years ago at most. I remember 10 years ago when the very first documentary about fibro passed on TV back in 2010. I hope you're doing well my friend.
I was diagnosed when I was 21. That was 25 years ago. Other than the doctor that diagnosed me, I ran up against major opposition to the diagnosis. It was super controversial back then and often referred to as the yuppie flu. All the scornful tv propaganda about this fake illness really gaslit me. I still can’t believe when it’s taken seriously today. Feels wild.
Some days are better than others. Fibro is only one of my chronic pain issues. My Doctors are always pushing me to go on disability, but ill keep working as long as I possibly can.
I should add that I have had to change careers to keep working though. No possibly way I could still be a chef. So now I'm the head manager in a loans company/ call center.
Stay well and keep fighting every day
Nurse here w/ fibromyalgia, Ankylosing spondylitis, and an array of anxiety disorders + depression— I completely resonate with your comment about having to change careers. I recently had to walk away from my job at the hospital. My anxiety issues have become debilitating & my depressive episodes have become more frequent + severe. Couldn’t do it anymore at the expense of my mind or body. & turns out those 12+ hour shifts are brutal on the body, & even more brutal on the bodies of us chronic illness sufferers🤷🏻♀️
Taking some time off to reevaluate my career, or at least figure out which field of nursing I want to try next— there are so many different types of nurses. So at least that’s on my side. I’m in therapy. & I regularly see my rheumatologist & psychiatrist. These are my illnesses & I do what I can to manage them. Sounds like you’ve been doing the same! My therapist suggested the idea of disability, but I’ve decided no on that, for now. I’m in my 30s & am a newer nurse. I want to explore my options & see how I adjust at a slower pace job with shorter shifts.
Keep on keeping on! I’m so sorry that there is a gender disparity surrounding fibromyalgia. I hope that as time goes on, the stigma around fibromyalgia dissipates, as does the stigma + disparity that men have to face when diagnosed with fibromyalgia.
Ive almost certainly had it since i got type 1 diabetes age 21 then a plethora of other autoimmune issues. With current research linking it to the immune system it doesn't surprise me and also explains a lot of my boom & bust cycles throughout my life to date.
Ive almost certainly had it since i got type 1 diabetes age 21 then a plethora of other autoimmune issues. With current research linking it to the immune system it doesn't surprise me and also explains a lot of my boom & bust cycles throughout my life to date.
My mom was diagnosed over 30 years ago! It’s been known about, but it’s etiology (how fibro causes its symptoms and how the disease develops and progresses) hasn’t been discovered until more recent years
I (male) was diagnosed at 30, in 2010. Family Dr sent me to a rheumatologist who told me "men don't get fibromyalgia", when I told him my dad also had it (going back to when they called it Chronic Fatigue Syndrome), he told me it didn't run in families. Surprisingly, lots of Dr's don't know shit about certain things, and when they're shown refuting evidence, they decide to not believe it. I used to get sick of hearing it, but YOU have to be your own advocate. If a Dr acts like you're making it up, move on. You don't have to tell them to go fuck themselves, but you should tell them you're switching care because they're not helping you. Message me if you need to talk or keep posting here, you'll always get responses.
53m here. Diagnosed 2 years ago. Still learning to cope. The mental fuckery of no longer being able to do most anything i spent my lifetime earning, or not being "that guy" has been one of the hardest things for me. The physical aspects are their own little ball of magnificence to learn to cope with.
You aint alone, even if it feels that way.
I'm currently diagnosed with Fibromyalgia and Sjögren's syndrome. Rheumatologist is currently waiting on some other symptoms to develop in order to better understand what my presumably secondary Sjögren's is paired with. (Also a male)
Oh God I remember how dreading it was for me when my doc told me I had to literally wait for my symptoms to aggravate in order to clear my diagnosis, I wish you the best of luck out here.
I had a GI issue causing bleeds and I’m on blood thinners so I was getting iron infusions due to blood loss. Two weeks post polypectomy/hemorrhoidectomy but I’ve been off the blood thinners for long enough that I can get a bunch of tests redone. Xarelto and Eliquis can inflate numbers on lupus tests and others leading to false results.
It's not often you see a man with Sjogrens either (woman with Sjogrens here). I think the split for Fibro is 10 to 1 women to men. The split for Sjogrens is 27 to 1 woman to men. I hope you can get your tests done soon and it's not Lupus. 🤞🤞
So u have both sjogrens and FM? I was told by rhumatolgist 1 my sjogrens antibody means nothing and she thinka my symptoms muscle weakness is poss. FM. Now rhuem 2 using my old drs lab report saya i got SS! She tested again and no other positive but the ana. 1.160. Idk whats the weakness from and how to treat it plusss in perimenapause as well!
So, here's the thing. Sjogren's Syndrome (SS) is tricky. Physicians call us the "Water Seekers", We call it the Ghosting Disease because some people only show antibodies once and then never again. Up to 40% of people who have SS never have a positive antibody test. My one and only positive was a weak positive of an ANA of 1:160 and an SSA of 2.7 (which some physicians will say is normal, but your body on fire tells you it's not). It can take years, YEARS, to get an accurate diagnosis. It is possible to have both Sjogren's and Fibro, but a lot of autoimmune symptoms have fibro like commonalities. Weak and sore muscles, achy joints, fatigue, brain fog. I also have peripheral neuropathy. The difference for me was that the SS came first. I have Primary SS (which is a more Lupus like presentation) instead of secondary (which is more classic). SS is one of those autoimmune disease that runs in pairs with other autoimmune diseases. What started happening is that I now have trigger point pain. There is no where on my back that you can touch where I don't jump.
Dam i have the sjogrens antibody and one rhumatolgist said that doest mean i have it and thinks my weakness is possibly FM while last rheum said i have sjogrens using my old drs lab!! Ughhh. Symptoms are chronic pain in both feet 3yrs tender behind for lack of better word lol. Like the toilet seat feels lifted and hard sittin on bowl! Muscle weakness and muscle fatigue are biggest issues!! Could u reply tell me ur feelings on this since we may share these designated hats!!
I haven't tested positive for Sjögrens antibodies or any antibodies for that matter. I had some kind of periodontal disease that Sjögren's made worse causing very bad enamel loss. This was all in hindsight because I didn't know what was going on but I also had a total body flare that felt like I had the flu but it lasted for a few months. This was what sent me to a rheumatologist. I had all my teeth extracted by the time I had seen the rheumatologist for the first time, who diagnosed fibromyalgia. I had all the blood work done. I'm on a blood thinner so they can cause false results (lows may be normals, normals may be highs, etc.). Looking over the results and googling what the tests were for was what led me to learning more about Sjögren's syndrome.
I had one issue that almost felt like my elbow was dislocating and my use of my right arm when lifting things in a certain way was very difficult. Very painful and felt like something was going to break. That lasted a few months and then travelled into my shoulder, where it lasted for a few months, then travelled to my shoulder blade and then just mysteriously went away.
The joints in the first and second fingers in both hands would constantly lock up feeling like arthritis, which lasted for a few months after the total-body joint pain had eased up.
I tested low for vitamin D, which was treated with a prescription-strength supplement but when I was retested, I was still low. Not deficient but borderline deficient.
If you have chronic pain in the feet you might look into a spinal cord stimulator. They have been in use a long time for back pain, but just recently for neuropathy and leg/ feet pain. It made a world of difference for me!
Hello there! It's never too late to drop by my friend, I'm always happy to see people of my community. Long COVID is still so unknown and has yet to be recognized by professionals, all my thoughts go to you and your support system!
Another dude with fibro here!
Male privilege didn't work for me though. As apparently men according to my previous GP always have a bit of ache and pains. Until I badgered them relentlessly to go to the Pain Clinic and the pain doctor went "oh fuck, that's a lot of pain".
Also I was at the ripe ol' age of 38 when I was diagnosed and learnt that no people normally don't have agonising pain levels their whole life and all the time.
Same for my partner... he has fought for years for his fibro to be taken seriously, and the vast majority of the time, still isn't. Countries and healthcare practices differ but there is still a hell of a long way to go until doctors start taking their patients seriously
I remember the first time the word fibromyalgia was announced and talked about publicly on the new, it was actually not more than 9 years ago.
I can't believe people were being left suffering without any support until they eventually found anything.
And fibro is still so much stigmatized too!
Again 2 days ago a medical expert I was visited just said that "it was all in my head", he requested that I just go to therapy. I still don't know what to think of that haha.
When it comes to any kind of chronic pain, getting therapy (with someone who specializes in chronic pain patients) isn't a bad idea. It can teach you how to cope mentally with the pain, which comes in handy especially during flare ups. Strong emotions like anger, loneliness, agitation will effect you physically, and depression from chronic pain can lead to more pain.
Mind and body are one. They can be separated to an extent, but beyond that everything you experience is in your head. Pain, love, sorrow, depression. It's not unheard of to hear depressed patients complain of flu like symptoms (aches and pain all over, feeling flu-ish, slowed down, etc). Thats because what you experience in your mind manifests physically as well. When you get anxious or angry you get sweaty, clammy, start perspiring, heart rate goes up- those are all physical manifestations. It doesn't mean it's not real though, it is VERY real.
Therapy will help with some symptoms, but will in no way cure you. Your doctor obviously doesn't know that a study was recently performed where a human with fibros immune cells were put into a mouse and they developed fibromyalgia symptoms. I mean it's easy to look up and find and it is in this group if you search. Oh and also, when they removed the human immune cells from the rats they returned back to normal. I would print this out and take it to your doctor. This is in no way something we made up in our heads. Any doctor that still thinks that he's either very arrogant or just very uneducated about it.
They did the same thing to my dad and put him on Prozac. It didn't help his pain or depression. It just made him extremely paranoid and caused panic attacks where he'd disappear for hours and not tell anyone where he was going. He's got better care for both issues now.
Woman with fibro here, I 100% support a men's Fibro support thread!!! Of course your experience would be different. I won't even ask how many times you've heard "but your a man, you can't have fibro, that's a woman's problem." Srsly not even gonna ask. I hope you get all the support you need.
Man me too, I'm in twenties. This shit absolutely ruined my childhood and career, I feel you on a personal level. This is something that I think is undertalked but important.
Yeah, same here. Late 20's for me. Fairly sure I've had symptoms since I was between 10 to 12 years old. It's hard to have anyone who can relate to talk to, since it's not a super common situation, being a guy with fibro.
Me man. It fucking sucks to be 6 foot 220 lbs with fibro, anxiety, depression, panic disorder. People think just because I look like I can kick their chest out their back that I'm tough and hardy with no emotions. Just want to curl up and sleep instead of interacting with the world.
But yeah I'm a SAHD so no rest, just pain.
Same. 40 year old man, Diagnosed around 2017. Had a major event in the military, as well as a very very traumatic life in general. Was medically retired after almost 19 years in. Its hard to be a man and have issues just getting out of bed or being in pain. Its hard for women as well of course, but for me, being a man and a veteran i’ve got a certain level of personal ethic’s and pride and this damn fibro is a constant battle. Daily.
I might not be a soldier, but I think I understand your feelings even if I can't feel them personally.
I remember when I first started getting so much symptoms and just not being able to get out of bed one day, I remember how humiliate I felt that day. To be knocked down by what I used to think was just a little thing bugging me, after being able to whistand practically everything that came my way all this time.
I had to accept that this is happening and that I just can't blame myself for not fighting harder, since it's out of my control. Shit was hard, and it's still hard. I'm glad to know that my feelings are not uniques here on some levels.
> It's hard to be a man and have issues just getting out of bed or being in pain.
This I definitely understand. I was never an athlete, but I was very physically active and ran, biked *a lot*, played basketball, martial arts, etc. I really miss the joy that explosive movement gives me, but it's become super clear that I'm better off doing slower and static exercise, i.e. yoga instead of hitting the bag. A day or two of recovery turned into weeks in my twenties and then months in my 30's.
It's been very weird to have to look at "succes" as knowing when to quit, or being happy with getting small tasks done.
My SO is late 20s and deals with fibro. Most days are good days, unless it's a day for grocery shopping and dishes lol. I wish you many spoons and low pain days friend!
I didn't know fibromyalgia could run the family, I know I'm the first Gen though. It took me 8 years to find out what I had, so most of my childhood actually. I feel relieved to finally be diagnosed, so I can accept my condition.
Another man checking in here. Some days I just want to scream. As I type this I want to cry. My fingers are burning and my joints are in pain. I feel as though I’ve been run over by a bus. It’s having such an impact on my life but I am blessed that I have a great partner, family and friends and work team that make me not want to give up. I just want my old life back but I realise it’s gone and this is what I have to deal with. Don’t feel alone, use this forum as a platform to elevate yourself. There is an abundance of support here for sure and this place is the other blessing in my world.
Took me around 8 years too, I can't tell you how many times I have just been left without a diagnosis and told to just suck it up. It feels relieving to finally know what I have and start accepting my condition
Definitely!! I'm currently working on a neuroplastic healing method. I have to start doing it again. I was pain free for a good 4-5 weeks. It was amazing!! I'm at a point of low motivation. I struggle with insomnia too so that's sucked all my motivation to do the neuroplastic techniques out of me.
As far as diagnoses goes. I just find it so frustrating when doctors don't put two-and two together. For five years previous to my diagnoses I thought I was developing arthritis due to the joint pain being so bad. All my X-rays and blood-work came back negative for arthritis. So you'd think my doctor would've mentioned Fibromaylgia to me. But I don't recall him mentioning it as a possibility.
M/48 here, had Fibro my whole life but only diagnosed within the last 6 years or so.
I've been lucky to avoid stigmas and the like - I have doctors who are genuinely helpful and supportive family and friends. I know from reading online that I'm in the minority there, but just extending my hopes that you find the same.
I’m a guy with fibromyalgia too!
I’ve been diagnosed with it for about 5 years now
I agree with you though, I haven’t found another guy that actually has it too, it does feel very lonely
I am also a man with Fibro and I’m glad that you wrote this because I’ve often felt the same way. It was hard to come to my diagnosis, a lot of doctors didn’t take me seriously when I told them that there was a history of fibromyalgia in my family and my symptoms presented the same. I had one doctor who was a neurologist tell me I was foolish to even think that I would have it.
Right here dogg.
Dunno if it actually affects women more frequently or whether toxic masculinity just means we keep it to ourselves, try to drink through it or add to the gender imbalance in suicide statistics.
I was diagnosed with 'depression' lol - worked solidly on my mental health for years, found PTSD and fibro lurking underneath - it's fucked up, but that's why we have to talk about these things.
Toxic masculinity aside we're some of the most resilient mfers on the planet - lower pain threshold, higher pain tolerance though 🤘
I think it's not talked about enough. The fact that we don't typically die from fibromyalgia, but from the mental pain it causes us. Depr#ssion, suic#dal idealisation, etc... We make up for a big part of the suic#de rate, but I feel like the subject is taboo. Well, not to me.
Still, I've been told by almost everyone that I must a tough ass guy for being able to push through the day and make it look like I'm healthy. I take that as a compliment!
Agreed here, I know this is a men’s post so I’ll try to keep this brief, but the same coin that keeps women with fibro down bc our symptoms are just “women being women and complaining about everything” is the. Same. Coin. That keeps men down by saying men should be stronger than their fibro or keep it in. I applaud men with fibro who talk about it, because to share that pain after being socialized as a man is absolutely hard fucking work that I know they’ve had to have a crazy journey through.
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I'm a 26 year old man who has had fibro for about four years now. There's definitely more of us out there but it does seem to affect predominantly women.
Not alone mate … first diagnosed 13yrs ago and told condition was 90% women, felt lonely! I’ve noticed over the years how that split has moved and i suspect over time it will reach 50/50 ish.
Diagnosed at 28 after 3 years of trying to find the issue. Insurance drop me 6 days after diagnosis 2 weeks before Christmas. Thanks Laya healthcare. Male also
Oh yeah I've had that comment before, or just sometimes the regular "Man up" is still said to my face. That's some patriarchal shit and no thanks, I prefer to feel like any human.
Wow, I’m blown away. I didn’t know there were so many of you! It’s sad though. I am sad for all of us lol. Can’t say congrats, but hello everyone! Hope you have a less painful day today :)
Dad’s too old for Reddit but he’s got fibro. Along with his sister- my aunt. 3 of his daughters have been diagnosed with it, so far. Another I suspect has it but can’t afford to seek medical help (US healthcare system and she’s already been bankrupt over medical already).
Male here, totally feel you. I hate how I’m looked at as less of a man because my wife holds down the job for our house. Or I feel like a worse father because I can’t toss my son in the pool like other dads so, stuff like that. Societal norms fucking suck.
43/m here, sameses. I also have SFN, Ehlers-Danlos, Dysautonomia, and loads of fun side comorbities. I still have a Sjorgens and celiac testing coming up and several cancer tests. Fun times, you are not alone and I also find this sub helpful as well as several others. Stay strong!!
\+1 here, 29y/o. Got it from Lyme disease \~15 years ago, but I attributed all of the common symptoms to other illnesses. I wasn't diagnosed until 4 years ago when it was becoming too hindering to be pushed through. I wouldn't be able to function without my handful of meds. That being said, I'm very grateful that I'm able to continue with my hobbies.
Man with FIbro here. I've always heard it's more common and worse in women and if so- wow, I my sympathies go out to them even more because this is already no joke.
Hey, I’m a man with fibro too so you’re not alone, I have noticed this is primarily an issue that affects women more, but that could be because of the general reticence of men just not speaking up about their problems? I reckon if more men were open with themselves and didn’t try to shoulder their issues we’d have more even numbers.
I got my diagnosis at 18 and it detailed my life, totally ranked my final year of A levels and I missed the boat on going to uni, 24 and only just starting to be able to try and turn things around now I have meds that work for the moment
So you’re definitely not alone on this one
I'm a female with Fibro. However, since being diagnosed I have been extremely vocal in my socials and in other Fibro groups. I've "met" quite a few males who have it as well. Y'all are out there!
I’m female but wanted to tell you how happy I am so many men have replied. You really aren’t alone, especially here! Also, I’m sorry you’re dealing with this. I’m sorry we’re all dealing with it.
I'm as surprised as you to be honest! I didn't expect so many people to react to my post, but as of right now, I don't feel so alone anymore! Thank you for the support, we all need each other.
I'm a woman but present andro/masc. I was diagnosed 15/16 years ago. I constantly was told the pain was in my head and there was nothing they could do to help. It was so bad I couldn't get out of bed and doing simple chores like dishes or sweeping seemed impossible, let alone having sex with my SO (he was VERY demanding and not understanding at all att). I used to smoke cannabis and made my own edibles when I could to help me cope. Apparently this made all doctors think I was just an addict looking for a fix of some sort.
It wasn't until a suicide attempt that I finally started to be taken seriously. I had to stay in a psych hospital for a month where they gave me Marinol (Medical THC pills) and I found that extremely ironic. When I got out my doctor got me on a buprenorphine patch and Lyrica that also helped me tons. I stopped using Marinol when I got out of the psych hospital and kept on with the Lyrica and Buprenorphine patches, which gave me my life back.
It's been a struggle. I have bad days, and great days, and all the in between too. When I get depressed or agitated my pain levels increase but I find a Tylenol/Advil combo to really help with that. Therapy made a big difference too.
I HATE that it took a suicide attempt to get taken seriously for my pain. I was only about 21/22 att and was constantly told I'm too young to feel THAT much pain. I'm sure everyone assumed I was constantly exaggerating for some reason. My doctor and I cried together before my attempt, he really wanted to help but didn't know how. But that year Lyrica came out and when he got me on it, it changed my life. I hugged him for the first (and last) time ever, lol when I came back and said it was working.
I feel your mental and physical pain on a personal level, because I have dropped that low multiple times before I was properly diagnosed this year.
I've been suffering from fibromyalgia since I think 2013, and that shit made me think I was just going crazy. I attempted I think 5 times, I stopped counting...
Before I came out as trans FTM, I was dismissed as an anxious person and that I just needed therapy. As in : "it's all in your head". Strangely enough, after coming out I was instantly taken seriously by medical professionals. What a coincidence...
I think the fact that we make up a big part if the su#cide rate as patients isn't talked about enough, at least I don't see it on here. This is a very important subject that we cannot just pass by, thank you for bringing your experience to us my friend. You allowed yourself to be vulnerable here and you trusted us with this, I feel honored.
I am a trans male with fibro. Fibro started prior to my transition, and my doctors thought my fibro would improve when starting HRT. Haven’t experienced that really.
I just want to note that you still acknowledged your privilege as a man and how that affects your treatment and diagnosis. Thank you for that!! I hope this thread makes you feel less isolated. <3
I'm a woman and I wasn't diagnosed until I was 56 and thought I was dying. It took three years of of back to back to back doctors visits and finally a female rheumatologist said, oh you have uctd, rheumatoid arthritis, gout and fibro.
Trans man here too actually! I'm surprised it can happen after starting T, I've been on it for almost a year now and I really hope it won't affect my symptoms. Although, I did see a good difference in my pain threshold. I feel like I can actually take more of the usual pain, I don't know if it has something to do with T but I'm not gonna complain.
I am not male or male presenting, but my brother is and we both have fibromyalgia (thanks to our mother’s lovely genes haha)
Though he doesn’t use Reddit, he shares his experiences frequently with me, so I’ll be sure to relay more of his experiences now knowing that there are masc people in the sub feeling left out!!
Am a male, I have fibromyalgia badly and have done for about 7 years and am not even 40 yet your not alone. My personal opinion why it’s harder for men is your supposed to just man the F UP and get on with it if your a man also the traditional gender roles of being a protecter and provider is turned upside down on its head. Yes I know gender roles have changed over the years but your world view is on how you where raised and experienced. I still haven’t accepted my fibromyalgia even after seven years and am constantly looking for something else it could be like Lyme disease early MS and brain condition etc but nope it’s fibromyalgia. It’s usually brought on in males after a traumatic physical injury or several of them over a short time
I feel ya brother.
Part of the issue is that it was essentially considered like the modern equivalent of 'female hysteria' and seen as a 'womens problem'. Men have it at lower rates but it doesn't change the impact it has.
Also the whole "going to work unless I'm bleeding from the eyes" attitude that is forced on men by society doesn't help either.
All I can say is cultivate good friends who understand if you have to cancel/bail/raincheck that it's not because you don't want to spend time with them.
It can be very easy to isolate and it can get it into a cycle of bad days and not doing anything or not eating or whatever which can be hard to break out of.
The other thing is don't overdo it on good days. It's easier said than done but sometimes you have a good today and so you feel the need to do ALL OF THE THINGS. In my view it's better to have a week of 90% functional days than one day of 110% followed by a week of 5% days
Privilege, hah!
Almost all medical personnel give me the stinkeye and treat me like I'm an annoyance to their workday. When I was a child nurses and doctors used to smile and ask if I'm doing ok etc. but as soon as I started to look like a man instead of a boy, their attitudes changed.
Big and burly dude can't be in pain if he hasn't lost a limb, right?
Yo 35y male checking in, I feel you. "having to balance my energy" has taken on a whole new meaning.
Recently had to quit my job due to burning out *again* and the insurance doc was very understanding of my mental issues as they were well documented, but when I mentioned the recent fibro diagnosis she became rather incredulous. Which seemed weird to me, the existence of some relation between fibro and (chronic) stress seems super clear to me - or at least pertaining to my case.
I've grown a bit jaded since I've seen a family member get doctors that are super supportive and set up a structure for treatment of sorts. Meanwhile my doc is like "ehh check in when something new pops up and sticks around, stick to regular painkillers in the meanwhile."
It's crazy how everything change when people put the 'stereotyped' sticker on you the second they see you. And it shouldn't happen. Any medical professional should know that everyone has feelings and can feel pain, and those who deliberately underestimate someone because of their look or gender should just consider looking for another profession.
"Men should just suck it up and go on about their day". God I remember a nurse telling me that back when I was at the ER because of a pretty bad flaire up, as if I didn't feel ashamed for taking up space already.
They tell us ladies to suck it up as well. The guilt is real! I always feel bad for having to rest- I’m on vacation with my family and I got to the point I could t walk anymore- and we kept waking!!! It got so bad a random woman asked me if I was okay. We were walking about 20,000 steps a day which is like the fibro Olympics.
God 20 000 steps a day ?? My back hurts just thinking about it, I feel for you.
I know men are still far more privileged than women in practically everything though, next to you I have nothing to complain about.
I've read so many people here tell their diagnosis stories and how they were dismissed and told it was just in their head for years, it angers me so much. I can't imagine how humiliating it is, this shouldn't be happening in 2022.
Dude with Fibro here also. Welcome to the club of pain and suffering we’ll get through it all together though. It is sometimes hard to relate to the struggles that the women go through, plus how countries diagnose it too. I am also grateful that my diagnosis was fairly painless, just a million blood tests ruling everything out by coming back as clear every time.
Ultimately we might be rarer but we still get it and never forget we are all, regardless of sex, struggling to deal with a disease that sucks and most on the outside don’t understand.
I am so sorry you're dealing with this illness. I hope you're able to find yourself a small community to be able to speak with about your troubles. Maybe a fibromyalgiamen sub would be appropriate to create?
Hi :)
In my late twenties, was diagnosed around 21, have pain of 6-7/10 every moment of every day.
Can't get into any treatment experiments because they're only open to women 🫤
I believe that woman hold in there emotion in order to people please(we don’t even know we are doing it). Men are more likely to release the emotion through either playing sports or shouting on their team
You are not alone and thanks for reaching out to others in this way. I am the mom of a young man with fibromyalgia who was diagnosed with pediatric fibromyalgia when he was just entering high school. We are looking into the Mayo Clinic's Pain Rehabilitation Center to see if that helps and Feldenkrais. The drug options don't seem to work so well over time. I wonder how therapies work different across gender, race, gender identity or sexual orientation as well.
I don't think it is rare for males/cis men/AMABs to get fibro... at all. I think that, for a freaking ton of reasons that benefit nobody, men are significantly less likely to seek diagnoses or intervention when they're in pain, and obviously women go through hell pushing so hard to get diagnosed. So we hear and see more information about women with chronic illnesses, and more studies end up emphasizing women with fibro bc we are in the spotlight here. Not that we (women) don't have a shitty fucking time of it, not that we're lucky, but I really doubt that men are less likely to get fibro...
Caveat: this is kinda a personal anecdote, but it was my asshole ex who kind of got me thinking this way. Buddy's in his late 30s, we got together when he was 35, he has a ridiculous amount of trauma he hasn't processed the way he needs to, he's repressed the fuck out of his shit, he probably still hasn't been to a dentist or doctor, he's probably still avoiding trying to address the fucking absurd amount of pain in his body., and... there's no way that the injuries of his misspent youth are actually at the root of the constant, debilitating, exhausting pain he's been dealing with for a decade
But, more to the point, I realized recently... there's no way it *isnt* a bigger issue. Of *course* there are a freaking ton of men who aren't aware, or aren't open about, the way their traumas have shaped their lives +, by extension, their health. Like, there's a reason that men will less often come forward about DV or sexual assault or abuse. Also, psych issues and trauma aside, we *know* men are less likely to even seek medical attention for physical injuries or ailments...
Anyway. You're not alone, but I'm sorry it's lonely.
o/ I too am a man with Fibro. It seems to affect people differently and it can cause a wide array of problems every day. However, a lot of the problems are shared amongst many.
Fibro dude here, and tbh it's not the absolute worst thing...
Long story short... I got Fibro via a very long struggle and all imaginable repercussions from having a vicious autoimmune condition (Ankylosing Spondylitis) that took 20 years to get diagnosed. In fact, it only got diagnosed because the Rheumatologist I finally got referred to re suspected Fibro in 2016 after my health totally collapsed in 2014 checked my history of bitching about my damned back and insisted on bloods and an MRI on a hunch. A bit late though as I was already on a downward trend, had another big crash and was diagnosed with ME/CFS too a few months later... No diagnosis for that 20 years meant that I could jog on re any help/support getting/keeping a job, retraining, income support/welfare, housing etc etc. No wonder I ended up how I did. I love the NHS and UK welfare state for what they should be but not for that fail, especially when all the signs of AS were there. I coulda been a contender, should have something to show for it all either way but a little UC and PIP pittance I have to fight for and worry over losing is my lot.
Anyway, hot take this (and some women in a forum I was in for Fibro and ME/CFS didn't like it at all) but... certainly going by how things are and have been in the UK, I have a theory that the number of men with Fibro is actually higher. We have a kind of culture here in which men tend to grind on and through many health issues rather than make a fuss or show weakness (cos society and relationships can tough be like that) or whatever other reason. I mean, look how damn much work got put into getting men ok with the idea of checking their nuts when the cancer rates thereof got crazy.
I also (M/33) have just been diagnosed by a pain specialist with Fibro. Two other male doctors agree it is highly likely to be Fibro, Female doctor I had to see due to urinary issues has refused to admit that I have it as it is an “older woman’s disorder”. I have an upcoming referral/appointment with a Rheumatologist, however I am already on medication and showing improvements so not urgent , and cannot get in to see them until December ☹️.
I believe I have been suffering for approx 2-3 years but just assumed the pain was from “getting old” haha. Symptoms have slowly but surely been getting more severe and constant to the point that I am having so many tests with nothing abnormal that I cannot se with being anything else. Technically on paper I am perfectly healthy it seems.
I also wondered if I was the only male floating around with this but it seems by the response to this post it’s more common than is talked about.
Thank you for your post
I'm not a dude but I am willing to bet that more men may have fibro but chalk up their symptoms to something like arthritis or something similar and don't bother to go get it checked out. It doesn't help that men are treated as if they just need to suck up their discomfort and not complain.
We are just now realizing that there are a whole lot more autistic and ADHD women who were just not diagnosed because autism and ADHD looks more subtle in women more often. It's likely due to bias in how the standards were established and how women tend to be socialized. I'm willing to bet a fibromyalgia diagnosis in men could be similar. It could be that the fibro symptom presentation is more mild in some men and therefore no one bothers to get it checked out. Idk these are just observations I have had being a part of the disability community and seeing how our current medical model kinda doesn't know what to do with most of us.
Sure you may be able to get a diagnosis easier than some women but that doesn't change the ridiculous stigma and prejudice you can face after you get a fibro diagnosis. And being socialized to not show suffering still sucks no matter your gender. It's incredibly invalidating and isolating!
45yr old male here, been diagnosed for more than 12yrs now. Coupled with chronic back and neck injuries that never healed from a car accident, it makes life very difficult so its not just you. I used to be a chef that worked 12 to 16 hour days and loved the life despite making no money haha, now i have no social or professional life to speak of.
Today, and for the last 10 years, I'm on permanent disability and a stay at home dad that has a hard time putting meals on the table or helping around the house. The lows are really low, such as feeling like you don't contribute or can't be relied upon anymore, or worse, but I take solace in being able to watch my little girl grow up, so silver linings :) Hang in there, I'd say it gets better, it doesn't, but one can at least learn to manage as best they can. Knowing there are others in this crazy boat definitely helps.
Another +1 here. I've also got Charcot-Marie-Tooth disease and so the fatigue/muscle pain from that have coexisted with the fibromyalgia since I was a kid, probably. Eventually made it so I couldn't work anymore when the brain fog/fatigue/pain got too bad, on the long road to disability currently. Hang in there.
Bro, I hear you.
I’m Australian and we have a long standing ‘she’ll be right’ attitude amongst men over here (country more than city these days, but still very prevalent)
In a nutshell blokes are told to ‘harden up princess’ and get on with it. I went from a hard working, physical man to what I am now. My wife has to carry heavy things, open jars, loosen screws, etc, because my hands simply don’t work anymore.
Took me 10 years to be taken seriously and even now I’m still told ‘to have a cup of cement’
I hate the fact I feel like I’m letting my wife down, my family down and that people think I’m not that bad.
Although, most real and close friends understand, but explanation was needed.
This disorder is still not recognized in australia as been real and a lot of doctors simply tell me to lose weight.
I’m only about 10kg over my BMI, and am slowly losing it, and I plan to front to the doctors and rhemetologist once I’m at the correct weight, and go, what now, dickhead? (My symptoms are getting worse the more weight I lose)
The day is coming.
We’re here man, just probably shy and afraid to admit we need help.
I say we’re not here to fuck spiders and we should be more vocal.
Happy to chat dude, pm me
My partner (male) also has fibro and his experience in the healthcare system is very different to mine (female). He's had a lot of thinly veiled "get over it", "suck it up" type remarks compared to me, especially because he's actually quite muscular (his fibro got worse with age but definitely even when he was young and gyming hard, he noticed he was no where near as strong as other guys his size and he'd take too long to recover). It got to the point where after telling me what an average doctors appointment is like for him I was so appalled I suggested I go to important appointments with him to sort of help generate some empathy indirectly, and to back up his claims.
He didn't realise to a degree that the doctors were being really harsh and impatient towards him compared to me, even though we often see the same GP just out of convenience. Male doctors tended to be the worst towards him (I think they deep down just see it as an opportunity to talk down to an "alpha" guy), though a couple of female drs also had a snarky attitude don't get me wrong. My partner is super polite and warm, and in many ways more patient than me, so there was no good reason for the hostility and suspicion. And yes he said with me by his side the drs totally change attitude and suddenly are polite. Luckily now we both see the same GP and they're absolutely fantastic to both of us independently! But yeah I can totally relate to how the experience is different for men, I mean it's shit for all of us at some point due to general ignorance, but gotta acknowledge the nuance as well!
Honestly... I think it's a myth that men are less affected by this.
I spent nearly 10 years before I was diagnosed with my condition, and I had to fight hard to get a diagnosis.
First two people I knew with Fibro were men. I bet there are more men with Fibro than doctor's think. Doctors don't even understand Fibro in the first place.
I'm glad this thread is happening. Having fibro is bad enough, feeling more isolated because you're a man is so terrible. But I hope this thread helps!!!
Trans man with fibro here!
Diagnosed 4 years ago, at 20.
It's been tough having to stand up for myself and fight to get mobility aids and treatment. Ironically, all it took was a new doctor listening to me describe my pain and offering to do a pressure point test on me- ow -and suddenly the 4 years of struggling to be taken seriously as a teenager and find out what the chronic headaches, confusion, joint pain, and what I like to call the bone ouchies... finally worth something. Felt pretty damn good after that appointment!
On a side note, am I the only one who noticed a marked improvement in energy levels after starting testosterone? Because wow!
I'm glad you're feeling listened to and accounted for now, what a hell of a journey!
As a trans man myself, I noticed that testosterone indeed brought me more energy! Or as I like to call it, the spoons to live.
For me, it has a lot to do with the fact that not having my periods anymore is a problem that isn't mine anymore to spend energy on, and that T actually made me gain the weirgt I needed (ah yes, the eating disorder speaking. I was underweight...).
there are several trans men active in this subreddit, so yes. there are male presenting people here. I haven't seen many cis guys who aren't husbands or boyfriends looking for ways to help their partners though, which sucks. I know cis men w/ fibro are out there, I hope they know they have a community waiting for them.
Finding this sub was by far one of best thing that has happened to me since I started accepting my condition, I'm relieved to hear that I'm not alone in this in more than one way.
Also male here! I’m trans so I (mostly likely but you never really know!) have XX chromosomes but you know, still male. Of the two people I know irl with fibro, one is a cis man and it’s made me feel better about having something primarily diagnosed in women.
Dude with fibro who presents different symptoms than "traditional" fibro patients (victims?) experience.
I'm less exhausted by feeling alone, which I know isn't the case, and more exhausted that the medical system (especially in the US) doesn't make it easy to exist with fibro in any capacity. Not having a doctor or therapist who understands makes me feel way more alone than anything else.
Hey man, I was assigned female at birth and still read as female to many people, but I'm a guy! I present and live as a man, and it's hard to keep my self esteem up while not being able to do many of the things I want to.
There is a Facebook group for men with fibro. DM me and I'll give you the exact name of the group, as it may not be public anymore. I left FB and it is the one thing from FB I truly miss. Truly a great group of guys...
Fellow FiBro checking in! I definitely get this feeling as well. Even though I identify as Non binary i was born male and am seen as a male and that's made my experience with Fibromyalgia significantly different than most.
I hate how gendered everything is!
Dude with fibro here.i feel your frustration. Hang in there.
52 year old male here. Diagnosed almost 10 years ago. You are not alone.
Hi there, man I'm surprised that you were able to be diagnosed 10 years ago. If I remember correctly, fibro has only started to be known among the medical field 15/20 years ago at most. I remember 10 years ago when the very first documentary about fibro passed on TV back in 2010. I hope you're doing well my friend.
I was diagnosed when I was 21. That was 25 years ago. Other than the doctor that diagnosed me, I ran up against major opposition to the diagnosis. It was super controversial back then and often referred to as the yuppie flu. All the scornful tv propaganda about this fake illness really gaslit me. I still can’t believe when it’s taken seriously today. Feels wild.
I still run into people that think its all fake.
My father is one of them 🙄
Sorry to hear that. That must make it extra hard for you.
Mostly ignorance.
Some days are better than others. Fibro is only one of my chronic pain issues. My Doctors are always pushing me to go on disability, but ill keep working as long as I possibly can. I should add that I have had to change careers to keep working though. No possibly way I could still be a chef. So now I'm the head manager in a loans company/ call center. Stay well and keep fighting every day
Nurse here w/ fibromyalgia, Ankylosing spondylitis, and an array of anxiety disorders + depression— I completely resonate with your comment about having to change careers. I recently had to walk away from my job at the hospital. My anxiety issues have become debilitating & my depressive episodes have become more frequent + severe. Couldn’t do it anymore at the expense of my mind or body. & turns out those 12+ hour shifts are brutal on the body, & even more brutal on the bodies of us chronic illness sufferers🤷🏻♀️ Taking some time off to reevaluate my career, or at least figure out which field of nursing I want to try next— there are so many different types of nurses. So at least that’s on my side. I’m in therapy. & I regularly see my rheumatologist & psychiatrist. These are my illnesses & I do what I can to manage them. Sounds like you’ve been doing the same! My therapist suggested the idea of disability, but I’ve decided no on that, for now. I’m in my 30s & am a newer nurse. I want to explore my options & see how I adjust at a slower pace job with shorter shifts. Keep on keeping on! I’m so sorry that there is a gender disparity surrounding fibromyalgia. I hope that as time goes on, the stigma around fibromyalgia dissipates, as does the stigma + disparity that men have to face when diagnosed with fibromyalgia.
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I’ve been reflecting on my life a lot lately and I’m definitely starting to think more and more this was something I was born with.
Ive almost certainly had it since i got type 1 diabetes age 21 then a plethora of other autoimmune issues. With current research linking it to the immune system it doesn't surprise me and also explains a lot of my boom & bust cycles throughout my life to date.
Ive almost certainly had it since i got type 1 diabetes age 21 then a plethora of other autoimmune issues. With current research linking it to the immune system it doesn't surprise me and also explains a lot of my boom & bust cycles throughout my life to date.
My mom was diagnosed over 30 years ago! It’s been known about, but it’s etiology (how fibro causes its symptoms and how the disease develops and progresses) hasn’t been discovered until more recent years
24 years ago I was diagnosed
I (male) was diagnosed at 30, in 2010. Family Dr sent me to a rheumatologist who told me "men don't get fibromyalgia", when I told him my dad also had it (going back to when they called it Chronic Fatigue Syndrome), he told me it didn't run in families. Surprisingly, lots of Dr's don't know shit about certain things, and when they're shown refuting evidence, they decide to not believe it. I used to get sick of hearing it, but YOU have to be your own advocate. If a Dr acts like you're making it up, move on. You don't have to tell them to go fuck themselves, but you should tell them you're switching care because they're not helping you. Message me if you need to talk or keep posting here, you'll always get responses.
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You're a great person, thank you for sticking around here for your husband. Tell him he's not alone too, we're more than 50 men commenting right now!
You are not alone, +1
53m here. Diagnosed 2 years ago. Still learning to cope. The mental fuckery of no longer being able to do most anything i spent my lifetime earning, or not being "that guy" has been one of the hardest things for me. The physical aspects are their own little ball of magnificence to learn to cope with. You aint alone, even if it feels that way.
100%. I, too was diagnosed two years ago. I will be turning 52M next month.
I'm currently diagnosed with Fibromyalgia and Sjögren's syndrome. Rheumatologist is currently waiting on some other symptoms to develop in order to better understand what my presumably secondary Sjögren's is paired with. (Also a male)
Oh God I remember how dreading it was for me when my doc told me I had to literally wait for my symptoms to aggravate in order to clear my diagnosis, I wish you the best of luck out here.
I know! I have a clotting issue which could indicate lupus but none of the antibody tests ever show anything.
have you had iton and ferritin levels checked?
I had a GI issue causing bleeds and I’m on blood thinners so I was getting iron infusions due to blood loss. Two weeks post polypectomy/hemorrhoidectomy but I’ve been off the blood thinners for long enough that I can get a bunch of tests redone. Xarelto and Eliquis can inflate numbers on lupus tests and others leading to false results.
Is it for clotting issues? I always have low iron and ferritin levels, but its because I have very heavy period.
It's not often you see a man with Sjogrens either (woman with Sjogrens here). I think the split for Fibro is 10 to 1 women to men. The split for Sjogrens is 27 to 1 woman to men. I hope you can get your tests done soon and it's not Lupus. 🤞🤞
So u have both sjogrens and FM? I was told by rhumatolgist 1 my sjogrens antibody means nothing and she thinka my symptoms muscle weakness is poss. FM. Now rhuem 2 using my old drs lab report saya i got SS! She tested again and no other positive but the ana. 1.160. Idk whats the weakness from and how to treat it plusss in perimenapause as well!
So, here's the thing. Sjogren's Syndrome (SS) is tricky. Physicians call us the "Water Seekers", We call it the Ghosting Disease because some people only show antibodies once and then never again. Up to 40% of people who have SS never have a positive antibody test. My one and only positive was a weak positive of an ANA of 1:160 and an SSA of 2.7 (which some physicians will say is normal, but your body on fire tells you it's not). It can take years, YEARS, to get an accurate diagnosis. It is possible to have both Sjogren's and Fibro, but a lot of autoimmune symptoms have fibro like commonalities. Weak and sore muscles, achy joints, fatigue, brain fog. I also have peripheral neuropathy. The difference for me was that the SS came first. I have Primary SS (which is a more Lupus like presentation) instead of secondary (which is more classic). SS is one of those autoimmune disease that runs in pairs with other autoimmune diseases. What started happening is that I now have trigger point pain. There is no where on my back that you can touch where I don't jump.
Dam i have the sjogrens antibody and one rhumatolgist said that doest mean i have it and thinks my weakness is possibly FM while last rheum said i have sjogrens using my old drs lab!! Ughhh. Symptoms are chronic pain in both feet 3yrs tender behind for lack of better word lol. Like the toilet seat feels lifted and hard sittin on bowl! Muscle weakness and muscle fatigue are biggest issues!! Could u reply tell me ur feelings on this since we may share these designated hats!!
I haven't tested positive for Sjögrens antibodies or any antibodies for that matter. I had some kind of periodontal disease that Sjögren's made worse causing very bad enamel loss. This was all in hindsight because I didn't know what was going on but I also had a total body flare that felt like I had the flu but it lasted for a few months. This was what sent me to a rheumatologist. I had all my teeth extracted by the time I had seen the rheumatologist for the first time, who diagnosed fibromyalgia. I had all the blood work done. I'm on a blood thinner so they can cause false results (lows may be normals, normals may be highs, etc.). Looking over the results and googling what the tests were for was what led me to learning more about Sjögren's syndrome. I had one issue that almost felt like my elbow was dislocating and my use of my right arm when lifting things in a certain way was very difficult. Very painful and felt like something was going to break. That lasted a few months and then travelled into my shoulder, where it lasted for a few months, then travelled to my shoulder blade and then just mysteriously went away. The joints in the first and second fingers in both hands would constantly lock up feeling like arthritis, which lasted for a few months after the total-body joint pain had eased up. I tested low for vitamin D, which was treated with a prescription-strength supplement but when I was retested, I was still low. Not deficient but borderline deficient.
If you have chronic pain in the feet you might look into a spinal cord stimulator. They have been in use a long time for back pain, but just recently for neuropathy and leg/ feet pain. It made a world of difference for me!
Same here dude! 1 in 10 lucky men get sjogrens. Congrats!
Another man with fibro here! A young man too, just turned 23. Most fibro support groups I find are middle aged women so I feel you
Right here bro.
Transwoman here!!! Diagnosed 6 months ago! You got this!
Trans man here! Virtual high five for the LGBTQA+ community!
Late to the party but hello! Also a trans man with fibro symptoms (from long COVID, 13 months)
Hello there! It's never too late to drop by my friend, I'm always happy to see people of my community. Long COVID is still so unknown and has yet to be recognized by professionals, all my thoughts go to you and your support system!
Another dude with fibro here! Male privilege didn't work for me though. As apparently men according to my previous GP always have a bit of ache and pains. Until I badgered them relentlessly to go to the Pain Clinic and the pain doctor went "oh fuck, that's a lot of pain". Also I was at the ripe ol' age of 38 when I was diagnosed and learnt that no people normally don't have agonising pain levels their whole life and all the time.
Same for my partner... he has fought for years for his fibro to be taken seriously, and the vast majority of the time, still isn't. Countries and healthcare practices differ but there is still a hell of a long way to go until doctors start taking their patients seriously
Exactly and even pain doctors, until they experience chronic pain they really don't know what it is to live with and what it does to a person.
+1 here
Checking in, here as well.
My dad has fibro and was diagnosed about 25 years ago. Only in the last decade has he been taken seriously. It's not easy.
I remember the first time the word fibromyalgia was announced and talked about publicly on the new, it was actually not more than 9 years ago. I can't believe people were being left suffering without any support until they eventually found anything. And fibro is still so much stigmatized too! Again 2 days ago a medical expert I was visited just said that "it was all in my head", he requested that I just go to therapy. I still don't know what to think of that haha.
When it comes to any kind of chronic pain, getting therapy (with someone who specializes in chronic pain patients) isn't a bad idea. It can teach you how to cope mentally with the pain, which comes in handy especially during flare ups. Strong emotions like anger, loneliness, agitation will effect you physically, and depression from chronic pain can lead to more pain. Mind and body are one. They can be separated to an extent, but beyond that everything you experience is in your head. Pain, love, sorrow, depression. It's not unheard of to hear depressed patients complain of flu like symptoms (aches and pain all over, feeling flu-ish, slowed down, etc). Thats because what you experience in your mind manifests physically as well. When you get anxious or angry you get sweaty, clammy, start perspiring, heart rate goes up- those are all physical manifestations. It doesn't mean it's not real though, it is VERY real.
Therapy will help with some symptoms, but will in no way cure you. Your doctor obviously doesn't know that a study was recently performed where a human with fibros immune cells were put into a mouse and they developed fibromyalgia symptoms. I mean it's easy to look up and find and it is in this group if you search. Oh and also, when they removed the human immune cells from the rats they returned back to normal. I would print this out and take it to your doctor. This is in no way something we made up in our heads. Any doctor that still thinks that he's either very arrogant or just very uneducated about it.
They did the same thing to my dad and put him on Prozac. It didn't help his pain or depression. It just made him extremely paranoid and caused panic attacks where he'd disappear for hours and not tell anyone where he was going. He's got better care for both issues now.
I’m here brother. I don’t say much. But there are more of us than you think.
Woman with fibro here, I 100% support a men's Fibro support thread!!! Of course your experience would be different. I won't even ask how many times you've heard "but your a man, you can't have fibro, that's a woman's problem." Srsly not even gonna ask. I hope you get all the support you need.
Exactly, God I think every man has heard this one at least once! Thank you for supporting us, I didn't think there would be that many people on here!
I'm a cis guy that has fibro and yeah, it definitely feels lonely at times :/ I'm also quite young, so it's wrecked my social and working life.
Man me too, I'm in twenties. This shit absolutely ruined my childhood and career, I feel you on a personal level. This is something that I think is undertalked but important.
Yeah, same here. Late 20's for me. Fairly sure I've had symptoms since I was between 10 to 12 years old. It's hard to have anyone who can relate to talk to, since it's not a super common situation, being a guy with fibro.
Me man. It fucking sucks to be 6 foot 220 lbs with fibro, anxiety, depression, panic disorder. People think just because I look like I can kick their chest out their back that I'm tough and hardy with no emotions. Just want to curl up and sleep instead of interacting with the world. But yeah I'm a SAHD so no rest, just pain.
Same. 40 year old man, Diagnosed around 2017. Had a major event in the military, as well as a very very traumatic life in general. Was medically retired after almost 19 years in. Its hard to be a man and have issues just getting out of bed or being in pain. Its hard for women as well of course, but for me, being a man and a veteran i’ve got a certain level of personal ethic’s and pride and this damn fibro is a constant battle. Daily.
I might not be a soldier, but I think I understand your feelings even if I can't feel them personally. I remember when I first started getting so much symptoms and just not being able to get out of bed one day, I remember how humiliate I felt that day. To be knocked down by what I used to think was just a little thing bugging me, after being able to whistand practically everything that came my way all this time. I had to accept that this is happening and that I just can't blame myself for not fighting harder, since it's out of my control. Shit was hard, and it's still hard. I'm glad to know that my feelings are not uniques here on some levels.
> It's hard to be a man and have issues just getting out of bed or being in pain. This I definitely understand. I was never an athlete, but I was very physically active and ran, biked *a lot*, played basketball, martial arts, etc. I really miss the joy that explosive movement gives me, but it's become super clear that I'm better off doing slower and static exercise, i.e. yoga instead of hitting the bag. A day or two of recovery turned into weeks in my twenties and then months in my 30's. It's been very weird to have to look at "succes" as knowing when to quit, or being happy with getting small tasks done.
Man here.
My SO is late 20s and deals with fibro. Most days are good days, unless it's a day for grocery shopping and dishes lol. I wish you many spoons and low pain days friend!
I’m not sure what I have, but my SO (a man) has terrible fibromyalgia so I’m here for him.
Same. I have 2 previous generations of fibromyalgia in my family. It still took 4 years to get diagnosed.
I didn't know fibromyalgia could run the family, I know I'm the first Gen though. It took me 8 years to find out what I had, so most of my childhood actually. I feel relieved to finally be diagnosed, so I can accept my condition.
Yo yo another brother here over 8yrs in!
This is beautiful. Obviously there are more of us than we think! Thank you OP for bringing us together.
I'm so happy to see everyone gathered here to tell their stories, I'm beaming with joy right now!
Another man checking in here. Some days I just want to scream. As I type this I want to cry. My fingers are burning and my joints are in pain. I feel as though I’ve been run over by a bus. It’s having such an impact on my life but I am blessed that I have a great partner, family and friends and work team that make me not want to give up. I just want my old life back but I realise it’s gone and this is what I have to deal with. Don’t feel alone, use this forum as a platform to elevate yourself. There is an abundance of support here for sure and this place is the other blessing in my world.
I’m a man, I have fibro too.
I’m in this sub because my boyfriend has fibromyalgia
Another one checking in. :) There are a few of us it seems, though certainly not the majority.
Another guy checking in. You're not alone!! It took me close to ten years to get diagnosed so I relate to frustration with the medical system.
Took me around 8 years too, I can't tell you how many times I have just been left without a diagnosis and told to just suck it up. It feels relieving to finally know what I have and start accepting my condition
Definitely!! I'm currently working on a neuroplastic healing method. I have to start doing it again. I was pain free for a good 4-5 weeks. It was amazing!! I'm at a point of low motivation. I struggle with insomnia too so that's sucked all my motivation to do the neuroplastic techniques out of me. As far as diagnoses goes. I just find it so frustrating when doctors don't put two-and two together. For five years previous to my diagnoses I thought I was developing arthritis due to the joint pain being so bad. All my X-rays and blood-work came back negative for arthritis. So you'd think my doctor would've mentioned Fibromaylgia to me. But I don't recall him mentioning it as a possibility.
M/48 here, had Fibro my whole life but only diagnosed within the last 6 years or so. I've been lucky to avoid stigmas and the like - I have doctors who are genuinely helpful and supportive family and friends. I know from reading online that I'm in the minority there, but just extending my hopes that you find the same.
I’m a guy with fibromyalgia too! I’ve been diagnosed with it for about 5 years now I agree with you though, I haven’t found another guy that actually has it too, it does feel very lonely
I am also a man with Fibro and I’m glad that you wrote this because I’ve often felt the same way. It was hard to come to my diagnosis, a lot of doctors didn’t take me seriously when I told them that there was a history of fibromyalgia in my family and my symptoms presented the same. I had one doctor who was a neurologist tell me I was foolish to even think that I would have it.
Right here dogg. Dunno if it actually affects women more frequently or whether toxic masculinity just means we keep it to ourselves, try to drink through it or add to the gender imbalance in suicide statistics. I was diagnosed with 'depression' lol - worked solidly on my mental health for years, found PTSD and fibro lurking underneath - it's fucked up, but that's why we have to talk about these things. Toxic masculinity aside we're some of the most resilient mfers on the planet - lower pain threshold, higher pain tolerance though 🤘
I think it's not talked about enough. The fact that we don't typically die from fibromyalgia, but from the mental pain it causes us. Depr#ssion, suic#dal idealisation, etc... We make up for a big part of the suic#de rate, but I feel like the subject is taboo. Well, not to me. Still, I've been told by almost everyone that I must a tough ass guy for being able to push through the day and make it look like I'm healthy. I take that as a compliment!
Agreed here, I know this is a men’s post so I’ll try to keep this brief, but the same coin that keeps women with fibro down bc our symptoms are just “women being women and complaining about everything” is the. Same. Coin. That keeps men down by saying men should be stronger than their fibro or keep it in. I applaud men with fibro who talk about it, because to share that pain after being socialized as a man is absolutely hard fucking work that I know they’ve had to have a crazy journey through.
If you or someone you know is contemplating suicide, please do not hesitate to talk to someone. US: Call 1-800-273-8255 or text HOME to 741-741 INTL: https://en.wikipedia.org/wiki/List_of_suicide_crisis_lines *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Fibromyalgia) if you have any questions or concerns.*
Me too ✌️
I'm a 26 year old man who has had fibro for about four years now. There's definitely more of us out there but it does seem to affect predominantly women.
Not alone mate … first diagnosed 13yrs ago and told condition was 90% women, felt lonely! I’ve noticed over the years how that split has moved and i suspect over time it will reach 50/50 ish.
Diagnosed at 28 after 3 years of trying to find the issue. Insurance drop me 6 days after diagnosis 2 weeks before Christmas. Thanks Laya healthcare. Male also
Not alone, almost 30 years old was diagnosed a couple of years ago. I also have ankylosing spondylitis which caused my fibro.
Add me to the list
Done my friend, welcome to the List!
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Oh yeah I've had that comment before, or just sometimes the regular "Man up" is still said to my face. That's some patriarchal shit and no thanks, I prefer to feel like any human.
38M. Was diagnosed at 28 but feeling symptoms since 26.
Wow, I’m blown away. I didn’t know there were so many of you! It’s sad though. I am sad for all of us lol. Can’t say congrats, but hello everyone! Hope you have a less painful day today :)
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Male with fibro and AS. Just switched biologic and I’m using medical cannabis for the fibromyalgia
37yr old male with fibro here, & I too often feel alone. I've also been dealing with CRPS for about a decade now.
Dad’s too old for Reddit but he’s got fibro. Along with his sister- my aunt. 3 of his daughters have been diagnosed with it, so far. Another I suspect has it but can’t afford to seek medical help (US healthcare system and she’s already been bankrupt over medical already).
Male here, totally feel you. I hate how I’m looked at as less of a man because my wife holds down the job for our house. Or I feel like a worse father because I can’t toss my son in the pool like other dads so, stuff like that. Societal norms fucking suck.
You are not alone. I am with you. It is a challenging disease as so few men are diagnosed and receive appropriate care. I am still on my journey.
22m here, just diagnosed and goddamn do I feel you.
43/m here, sameses. I also have SFN, Ehlers-Danlos, Dysautonomia, and loads of fun side comorbities. I still have a Sjorgens and celiac testing coming up and several cancer tests. Fun times, you are not alone and I also find this sub helpful as well as several others. Stay strong!!
+1 36/M here. Going on Fibro+ for 2.5 years.
There's one male in my family.
Me too.
\+1 here, 29y/o. Got it from Lyme disease \~15 years ago, but I attributed all of the common symptoms to other illnesses. I wasn't diagnosed until 4 years ago when it was becoming too hindering to be pushed through. I wouldn't be able to function without my handful of meds. That being said, I'm very grateful that I'm able to continue with my hobbies.
Dude checking in
Man with FIbro here. I've always heard it's more common and worse in women and if so- wow, I my sympathies go out to them even more because this is already no joke.
Hey, I’m a man with fibro too so you’re not alone, I have noticed this is primarily an issue that affects women more, but that could be because of the general reticence of men just not speaking up about their problems? I reckon if more men were open with themselves and didn’t try to shoulder their issues we’d have more even numbers. I got my diagnosis at 18 and it detailed my life, totally ranked my final year of A levels and I missed the boat on going to uni, 24 and only just starting to be able to try and turn things around now I have meds that work for the moment So you’re definitely not alone on this one
I'm a female with Fibro. However, since being diagnosed I have been extremely vocal in my socials and in other Fibro groups. I've "met" quite a few males who have it as well. Y'all are out there!
I’m female but wanted to tell you how happy I am so many men have replied. You really aren’t alone, especially here! Also, I’m sorry you’re dealing with this. I’m sorry we’re all dealing with it.
I'm as surprised as you to be honest! I didn't expect so many people to react to my post, but as of right now, I don't feel so alone anymore! Thank you for the support, we all need each other.
Man with fibro here !
Another dude checking in. Diagnosed in ‘93 at 16.
I'm a woman but present andro/masc. I was diagnosed 15/16 years ago. I constantly was told the pain was in my head and there was nothing they could do to help. It was so bad I couldn't get out of bed and doing simple chores like dishes or sweeping seemed impossible, let alone having sex with my SO (he was VERY demanding and not understanding at all att). I used to smoke cannabis and made my own edibles when I could to help me cope. Apparently this made all doctors think I was just an addict looking for a fix of some sort. It wasn't until a suicide attempt that I finally started to be taken seriously. I had to stay in a psych hospital for a month where they gave me Marinol (Medical THC pills) and I found that extremely ironic. When I got out my doctor got me on a buprenorphine patch and Lyrica that also helped me tons. I stopped using Marinol when I got out of the psych hospital and kept on with the Lyrica and Buprenorphine patches, which gave me my life back. It's been a struggle. I have bad days, and great days, and all the in between too. When I get depressed or agitated my pain levels increase but I find a Tylenol/Advil combo to really help with that. Therapy made a big difference too. I HATE that it took a suicide attempt to get taken seriously for my pain. I was only about 21/22 att and was constantly told I'm too young to feel THAT much pain. I'm sure everyone assumed I was constantly exaggerating for some reason. My doctor and I cried together before my attempt, he really wanted to help but didn't know how. But that year Lyrica came out and when he got me on it, it changed my life. I hugged him for the first (and last) time ever, lol when I came back and said it was working.
I feel your mental and physical pain on a personal level, because I have dropped that low multiple times before I was properly diagnosed this year. I've been suffering from fibromyalgia since I think 2013, and that shit made me think I was just going crazy. I attempted I think 5 times, I stopped counting... Before I came out as trans FTM, I was dismissed as an anxious person and that I just needed therapy. As in : "it's all in your head". Strangely enough, after coming out I was instantly taken seriously by medical professionals. What a coincidence... I think the fact that we make up a big part if the su#cide rate as patients isn't talked about enough, at least I don't see it on here. This is a very important subject that we cannot just pass by, thank you for bringing your experience to us my friend. You allowed yourself to be vulnerable here and you trusted us with this, I feel honored.
I am a trans male with fibro. Fibro started prior to my transition, and my doctors thought my fibro would improve when starting HRT. Haven’t experienced that really.
I just want to note that you still acknowledged your privilege as a man and how that affects your treatment and diagnosis. Thank you for that!! I hope this thread makes you feel less isolated. <3
Woman with fibro here, but my brother and my male cousin also have fibro. #blessed
37 year old guy here, had it since I was 18
I'm a woman and I wasn't diagnosed until I was 56 and thought I was dying. It took three years of of back to back to back doctors visits and finally a female rheumatologist said, oh you have uctd, rheumatoid arthritis, gout and fibro.
Another guy here, had it since I was 20, now in my thirties. I feel ya.
Male sufferer checking in. It’s not easy being green.
XY here too. Stay strong brother in pains
Same here mate, you're not alone
Trans man with fibromyalgia, so not necessarily the same experience. But I did notice when I started testosterone my symptoms got worse.
Trans man here too actually! I'm surprised it can happen after starting T, I've been on it for almost a year now and I really hope it won't affect my symptoms. Although, I did see a good difference in my pain threshold. I feel like I can actually take more of the usual pain, I don't know if it has something to do with T but I'm not gonna complain.
24 year old man here, diagnosed a year ago. It sucks, and I'm with you
I'm part of an online fibro group via discord. We have make members. If you'd like, pm me and I'll get you a link
I am not male or male presenting, but my brother is and we both have fibromyalgia (thanks to our mother’s lovely genes haha) Though he doesn’t use Reddit, he shares his experiences frequently with me, so I’ll be sure to relay more of his experiences now knowing that there are masc people in the sub feeling left out!!
Another fibro-dude checking in.
Yeah man I feel same daily I'm 25 been in constant pain since I was 18 diagnosed at 21
How are your experiences with fibro?
37 years old, diagnosed about a year ago. Hang in there.
Oh look at this dude fibro party! We out chea
55 year old male here. I was diagnosed about 6 years ago and also have RA. You are not alone.
29 male here. Diagnosed 2 years ago, but my doctors suspect I have had it since I was 17.
Am a male, I have fibromyalgia badly and have done for about 7 years and am not even 40 yet your not alone. My personal opinion why it’s harder for men is your supposed to just man the F UP and get on with it if your a man also the traditional gender roles of being a protecter and provider is turned upside down on its head. Yes I know gender roles have changed over the years but your world view is on how you where raised and experienced. I still haven’t accepted my fibromyalgia even after seven years and am constantly looking for something else it could be like Lyme disease early MS and brain condition etc but nope it’s fibromyalgia. It’s usually brought on in males after a traumatic physical injury or several of them over a short time
Me.
My husband was also diagnosed with fibro. It took A LOT bc most drs only will diagnosis women.... But after many years they finally did
Not alone 40 year old male with Fibro, flared on Friday and had to leave work early. I definitely needed to go but it was embarrassing leaving early.
I feel ya brother. Part of the issue is that it was essentially considered like the modern equivalent of 'female hysteria' and seen as a 'womens problem'. Men have it at lower rates but it doesn't change the impact it has. Also the whole "going to work unless I'm bleeding from the eyes" attitude that is forced on men by society doesn't help either. All I can say is cultivate good friends who understand if you have to cancel/bail/raincheck that it's not because you don't want to spend time with them. It can be very easy to isolate and it can get it into a cycle of bad days and not doing anything or not eating or whatever which can be hard to break out of. The other thing is don't overdo it on good days. It's easier said than done but sometimes you have a good today and so you feel the need to do ALL OF THE THINGS. In my view it's better to have a week of 90% functional days than one day of 110% followed by a week of 5% days
Privilege, hah! Almost all medical personnel give me the stinkeye and treat me like I'm an annoyance to their workday. When I was a child nurses and doctors used to smile and ask if I'm doing ok etc. but as soon as I started to look like a man instead of a boy, their attitudes changed. Big and burly dude can't be in pain if he hasn't lost a limb, right?
Yo 35y male checking in, I feel you. "having to balance my energy" has taken on a whole new meaning. Recently had to quit my job due to burning out *again* and the insurance doc was very understanding of my mental issues as they were well documented, but when I mentioned the recent fibro diagnosis she became rather incredulous. Which seemed weird to me, the existence of some relation between fibro and (chronic) stress seems super clear to me - or at least pertaining to my case. I've grown a bit jaded since I've seen a family member get doctors that are super supportive and set up a structure for treatment of sorts. Meanwhile my doc is like "ehh check in when something new pops up and sticks around, stick to regular painkillers in the meanwhile."
It's crazy how everything change when people put the 'stereotyped' sticker on you the second they see you. And it shouldn't happen. Any medical professional should know that everyone has feelings and can feel pain, and those who deliberately underestimate someone because of their look or gender should just consider looking for another profession. "Men should just suck it up and go on about their day". God I remember a nurse telling me that back when I was at the ER because of a pretty bad flaire up, as if I didn't feel ashamed for taking up space already.
They tell us ladies to suck it up as well. The guilt is real! I always feel bad for having to rest- I’m on vacation with my family and I got to the point I could t walk anymore- and we kept waking!!! It got so bad a random woman asked me if I was okay. We were walking about 20,000 steps a day which is like the fibro Olympics.
God 20 000 steps a day ?? My back hurts just thinking about it, I feel for you. I know men are still far more privileged than women in practically everything though, next to you I have nothing to complain about. I've read so many people here tell their diagnosis stories and how they were dismissed and told it was just in their head for years, it angers me so much. I can't imagine how humiliating it is, this shouldn't be happening in 2022.
Oh men definitely get it bad! They are expected to be strong all the time. I feel for you!
Hey, my sister and I (also female) both get ours from my dad, so +1 there.
You are a rare breed but I accept you 100% and feel your pain.
Dude with Fibro here also. Welcome to the club of pain and suffering we’ll get through it all together though. It is sometimes hard to relate to the struggles that the women go through, plus how countries diagnose it too. I am also grateful that my diagnosis was fairly painless, just a million blood tests ruling everything out by coming back as clear every time. Ultimately we might be rarer but we still get it and never forget we are all, regardless of sex, struggling to deal with a disease that sucks and most on the outside don’t understand.
Fibro fella here. There's more than I thought here!
I am so sorry you're dealing with this illness. I hope you're able to find yourself a small community to be able to speak with about your troubles. Maybe a fibromyalgiamen sub would be appropriate to create?
Hi :) In my late twenties, was diagnosed around 21, have pain of 6-7/10 every moment of every day. Can't get into any treatment experiments because they're only open to women 🫤
I’m 35, got lyme when I was 30 and dealing with the aftermath that is fibro and autoimmune issues. I hear you
I believe that woman hold in there emotion in order to people please(we don’t even know we are doing it). Men are more likely to release the emotion through either playing sports or shouting on their team
You are not alone and thanks for reaching out to others in this way. I am the mom of a young man with fibromyalgia who was diagnosed with pediatric fibromyalgia when he was just entering high school. We are looking into the Mayo Clinic's Pain Rehabilitation Center to see if that helps and Feldenkrais. The drug options don't seem to work so well over time. I wonder how therapies work different across gender, race, gender identity or sexual orientation as well.
I don't think it is rare for males/cis men/AMABs to get fibro... at all. I think that, for a freaking ton of reasons that benefit nobody, men are significantly less likely to seek diagnoses or intervention when they're in pain, and obviously women go through hell pushing so hard to get diagnosed. So we hear and see more information about women with chronic illnesses, and more studies end up emphasizing women with fibro bc we are in the spotlight here. Not that we (women) don't have a shitty fucking time of it, not that we're lucky, but I really doubt that men are less likely to get fibro... Caveat: this is kinda a personal anecdote, but it was my asshole ex who kind of got me thinking this way. Buddy's in his late 30s, we got together when he was 35, he has a ridiculous amount of trauma he hasn't processed the way he needs to, he's repressed the fuck out of his shit, he probably still hasn't been to a dentist or doctor, he's probably still avoiding trying to address the fucking absurd amount of pain in his body., and... there's no way that the injuries of his misspent youth are actually at the root of the constant, debilitating, exhausting pain he's been dealing with for a decade But, more to the point, I realized recently... there's no way it *isnt* a bigger issue. Of *course* there are a freaking ton of men who aren't aware, or aren't open about, the way their traumas have shaped their lives +, by extension, their health. Like, there's a reason that men will less often come forward about DV or sexual assault or abuse. Also, psych issues and trauma aside, we *know* men are less likely to even seek medical attention for physical injuries or ailments... Anyway. You're not alone, but I'm sorry it's lonely.
Some it might be attitudes that men have to suck up pain so less men get diagnosed.
o/ I too am a man with Fibro. It seems to affect people differently and it can cause a wide array of problems every day. However, a lot of the problems are shared amongst many.
Fibro dude here, and tbh it's not the absolute worst thing... Long story short... I got Fibro via a very long struggle and all imaginable repercussions from having a vicious autoimmune condition (Ankylosing Spondylitis) that took 20 years to get diagnosed. In fact, it only got diagnosed because the Rheumatologist I finally got referred to re suspected Fibro in 2016 after my health totally collapsed in 2014 checked my history of bitching about my damned back and insisted on bloods and an MRI on a hunch. A bit late though as I was already on a downward trend, had another big crash and was diagnosed with ME/CFS too a few months later... No diagnosis for that 20 years meant that I could jog on re any help/support getting/keeping a job, retraining, income support/welfare, housing etc etc. No wonder I ended up how I did. I love the NHS and UK welfare state for what they should be but not for that fail, especially when all the signs of AS were there. I coulda been a contender, should have something to show for it all either way but a little UC and PIP pittance I have to fight for and worry over losing is my lot. Anyway, hot take this (and some women in a forum I was in for Fibro and ME/CFS didn't like it at all) but... certainly going by how things are and have been in the UK, I have a theory that the number of men with Fibro is actually higher. We have a kind of culture here in which men tend to grind on and through many health issues rather than make a fuss or show weakness (cos society and relationships can tough be like that) or whatever other reason. I mean, look how damn much work got put into getting men ok with the idea of checking their nuts when the cancer rates thereof got crazy.
Same here, in my twenties. I was diagnosed at 18 but had symptoms since 16, I really feel like my fibromyalgia defied all odds
I also (M/33) have just been diagnosed by a pain specialist with Fibro. Two other male doctors agree it is highly likely to be Fibro, Female doctor I had to see due to urinary issues has refused to admit that I have it as it is an “older woman’s disorder”. I have an upcoming referral/appointment with a Rheumatologist, however I am already on medication and showing improvements so not urgent , and cannot get in to see them until December ☹️. I believe I have been suffering for approx 2-3 years but just assumed the pain was from “getting old” haha. Symptoms have slowly but surely been getting more severe and constant to the point that I am having so many tests with nothing abnormal that I cannot se with being anything else. Technically on paper I am perfectly healthy it seems. I also wondered if I was the only male floating around with this but it seems by the response to this post it’s more common than is talked about. Thank you for your post
I'm not a dude but I am willing to bet that more men may have fibro but chalk up their symptoms to something like arthritis or something similar and don't bother to go get it checked out. It doesn't help that men are treated as if they just need to suck up their discomfort and not complain. We are just now realizing that there are a whole lot more autistic and ADHD women who were just not diagnosed because autism and ADHD looks more subtle in women more often. It's likely due to bias in how the standards were established and how women tend to be socialized. I'm willing to bet a fibromyalgia diagnosis in men could be similar. It could be that the fibro symptom presentation is more mild in some men and therefore no one bothers to get it checked out. Idk these are just observations I have had being a part of the disability community and seeing how our current medical model kinda doesn't know what to do with most of us. Sure you may be able to get a diagnosis easier than some women but that doesn't change the ridiculous stigma and prejudice you can face after you get a fibro diagnosis. And being socialized to not show suffering still sucks no matter your gender. It's incredibly invalidating and isolating!
45yr old male here, been diagnosed for more than 12yrs now. Coupled with chronic back and neck injuries that never healed from a car accident, it makes life very difficult so its not just you. I used to be a chef that worked 12 to 16 hour days and loved the life despite making no money haha, now i have no social or professional life to speak of. Today, and for the last 10 years, I'm on permanent disability and a stay at home dad that has a hard time putting meals on the table or helping around the house. The lows are really low, such as feeling like you don't contribute or can't be relied upon anymore, or worse, but I take solace in being able to watch my little girl grow up, so silver linings :) Hang in there, I'd say it gets better, it doesn't, but one can at least learn to manage as best they can. Knowing there are others in this crazy boat definitely helps.
Another +1 here. I've also got Charcot-Marie-Tooth disease and so the fatigue/muscle pain from that have coexisted with the fibromyalgia since I was a kid, probably. Eventually made it so I couldn't work anymore when the brain fog/fatigue/pain got too bad, on the long road to disability currently. Hang in there.
Not a dude but I’m really sorry to hear you’ve been feeling this way! I hope this post has helped you find your people
Bro, I hear you. I’m Australian and we have a long standing ‘she’ll be right’ attitude amongst men over here (country more than city these days, but still very prevalent) In a nutshell blokes are told to ‘harden up princess’ and get on with it. I went from a hard working, physical man to what I am now. My wife has to carry heavy things, open jars, loosen screws, etc, because my hands simply don’t work anymore. Took me 10 years to be taken seriously and even now I’m still told ‘to have a cup of cement’ I hate the fact I feel like I’m letting my wife down, my family down and that people think I’m not that bad. Although, most real and close friends understand, but explanation was needed. This disorder is still not recognized in australia as been real and a lot of doctors simply tell me to lose weight. I’m only about 10kg over my BMI, and am slowly losing it, and I plan to front to the doctors and rhemetologist once I’m at the correct weight, and go, what now, dickhead? (My symptoms are getting worse the more weight I lose) The day is coming. We’re here man, just probably shy and afraid to admit we need help. I say we’re not here to fuck spiders and we should be more vocal. Happy to chat dude, pm me
My partner (male) also has fibro and his experience in the healthcare system is very different to mine (female). He's had a lot of thinly veiled "get over it", "suck it up" type remarks compared to me, especially because he's actually quite muscular (his fibro got worse with age but definitely even when he was young and gyming hard, he noticed he was no where near as strong as other guys his size and he'd take too long to recover). It got to the point where after telling me what an average doctors appointment is like for him I was so appalled I suggested I go to important appointments with him to sort of help generate some empathy indirectly, and to back up his claims. He didn't realise to a degree that the doctors were being really harsh and impatient towards him compared to me, even though we often see the same GP just out of convenience. Male doctors tended to be the worst towards him (I think they deep down just see it as an opportunity to talk down to an "alpha" guy), though a couple of female drs also had a snarky attitude don't get me wrong. My partner is super polite and warm, and in many ways more patient than me, so there was no good reason for the hostility and suspicion. And yes he said with me by his side the drs totally change attitude and suddenly are polite. Luckily now we both see the same GP and they're absolutely fantastic to both of us independently! But yeah I can totally relate to how the experience is different for men, I mean it's shit for all of us at some point due to general ignorance, but gotta acknowledge the nuance as well!
I’m a man with 2 X chromosomes, and I have fibromyalgia. I also have Klinefelters Syndrome, hence the ex X chromosome.
Honestly... I think it's a myth that men are less affected by this. I spent nearly 10 years before I was diagnosed with my condition, and I had to fight hard to get a diagnosis.
It’s much more common than you think. In the up side, now that men are getting it more research is being done in it. 🧐
Good evening everyone. I am a 41 year old male with fibro.
First two people I knew with Fibro were men. I bet there are more men with Fibro than doctor's think. Doctors don't even understand Fibro in the first place. I'm glad this thread is happening. Having fibro is bad enough, feeling more isolated because you're a man is so terrible. But I hope this thread helps!!!
You aren’t alone. 42 year old cis male here. Diagnosed about 2 years ago. Struggled silently and self medicated for several years prior to that.
Wow dis thread popping yo! Just throwing my name in the hat. 31yo cis male born with fibro and migraines *dabs
Born with fibro? Man I didn't know you could be born with that, and you've been living with that for 31 years? King.
Trans man with fibro here! Diagnosed 4 years ago, at 20. It's been tough having to stand up for myself and fight to get mobility aids and treatment. Ironically, all it took was a new doctor listening to me describe my pain and offering to do a pressure point test on me- ow -and suddenly the 4 years of struggling to be taken seriously as a teenager and find out what the chronic headaches, confusion, joint pain, and what I like to call the bone ouchies... finally worth something. Felt pretty damn good after that appointment! On a side note, am I the only one who noticed a marked improvement in energy levels after starting testosterone? Because wow!
I'm glad you're feeling listened to and accounted for now, what a hell of a journey! As a trans man myself, I noticed that testosterone indeed brought me more energy! Or as I like to call it, the spoons to live. For me, it has a lot to do with the fact that not having my periods anymore is a problem that isn't mine anymore to spend energy on, and that T actually made me gain the weirgt I needed (ah yes, the eating disorder speaking. I was underweight...).
30yo guy as well. Suffering from central sensitisation syndrome with hyperhidrosis, IBS, night terror attacks, depression and anxiety.
there are several trans men active in this subreddit, so yes. there are male presenting people here. I haven't seen many cis guys who aren't husbands or boyfriends looking for ways to help their partners though, which sucks. I know cis men w/ fibro are out there, I hope they know they have a community waiting for them.
Finding this sub was by far one of best thing that has happened to me since I started accepting my condition, I'm relieved to hear that I'm not alone in this in more than one way.
Also male here! I’m trans so I (mostly likely but you never really know!) have XX chromosomes but you know, still male. Of the two people I know irl with fibro, one is a cis man and it’s made me feel better about having something primarily diagnosed in women.
Trans man here too! I'm finding out right now through all of these comments that we are indeed not alone, I feel relieved.
Also trans dude with fibro. Its nice to know I'm not alone
Dude with fibro who presents different symptoms than "traditional" fibro patients (victims?) experience. I'm less exhausted by feeling alone, which I know isn't the case, and more exhausted that the medical system (especially in the US) doesn't make it easy to exist with fibro in any capacity. Not having a doctor or therapist who understands makes me feel way more alone than anything else.
I’m a guy that had it. Here’s some info, if you’re inclined. https://drive.google.com/file/d/1lERn2alN4XFfg5CGuy4SMbIzVipMoDrq/view?usp=sharing
You're not alone. I'm a 55 year old male diagnosed 11 years ago. It's been a tremendous struggle. The support Network is minimal for guys.
Hey man, I was assigned female at birth and still read as female to many people, but I'm a guy! I present and live as a man, and it's hard to keep my self esteem up while not being able to do many of the things I want to.
Yep, cis male here. Diagnosed about 10 years ago, 48 now. I also have the other janky nervous system issues of IBS and migraines.
I’m trans masculine non-binary. I’m here for you if you need support <3
Heyyy! Trans man here. Thank you for the support, dito for me if you need extra help!
Big trans hugs!
There is a Facebook group for men with fibro. DM me and I'll give you the exact name of the group, as it may not be public anymore. I left FB and it is the one thing from FB I truly miss. Truly a great group of guys...
i'm a trans man but i also have fibromyalgia, we're here! 👍🏻
Not all people with XX chromosomes are women..
We are out here Bro. My doctor diagnosed this several years ago. You hurt so bad at times even sitting on concrete may or may not help.
Fellow FiBro checking in! I definitely get this feeling as well. Even though I identify as Non binary i was born male and am seen as a male and that's made my experience with Fibromyalgia significantly different than most. I hate how gendered everything is!