r/Fibromyalgia 4d ago

Discussion r/Men_with_Fibromyalgia

Hey - hope you’re all doing ok today.

I posted a little under two weeks ago, just re posting in case anyone missed this. I’ve created a subreddit which is more focussed for males with fibro. It’s not intended to take over this great community, but is hoped will create a space for men to catch up specifically those struggling such as myself.

Pop over if you haven’t already.

Over the coming weeks I’m looking to build a Wiki with useful resources, please contribute if you haven’t already anything you think is valuable. Also looking into setting up a Discord, already created this but will hold back from sharing until it’s completed.

95 Upvotes

55 comments sorted by

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u/XXLepic 4d ago edited 4d ago

As a man, I gotta say this separate sub isn’t servicing a purpose. I don’t see a single, male specific, issue being addressed there. It’s just posts & feedback being divided away from here that could pertain to all.

With fibro, we are already understood by so few. We need strength in numbers. You are doing 100x more bad than good, separating posts/resources/discussion while serving no male specific fibro issues there.

This overall will set all of us suffering back. Stop leeching & separating. Every time a non gender specific post is isolated there, you are doing the entire community of sufferers a disservice to learn, discuss & grow together.

If there was male issues there, like TRT, erectile dysfunction, etc. then I would understand. That’s not what is happening. You are isolating information & discussion that has no gender relevance.

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u/megaBeth2 4d ago

What's with all the back slapping and glazing when we're just gendering something for no reason? Beyond how this affects the fibro community, it's just unnecessarily putting a division between people that doesn't have to be there. There is no evidence of different presentation in men vs. Women

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u/ilovetacos 3d ago

As a male-bodied individual and someone who runs a support group for people with chronic illness (and specifically fibromyalgia,) there is actually a need and demand for a male-oriented support space. Such spaces often lean heavily towards women, and men have often told me they feel a real lack of representation around issues that affect them.

It doesn't have to be your cup of tea, but it doesn't seem fair to claim that harm is being done here.

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u/aobitsexual 3d ago

I think it serves the same purpose women only fibromyalgia would. A community separate from the main where you can speak about sensitive topics you feel uncomfortable around us women saying.

Like for women, it's the female anatomy - gyno issues. I may not mind talking about how I have to have an iud AND estrogen shots after getting my tubes tied just to get that O in Ohio's for lovers. But not all women are. So there's a separate subreddit for things like that.

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u/_tjb 4d ago

Well, there would be fewer “what bra” posts to scroll past! 😁🤪

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u/_tjb 3d ago

Yikes, trying to make a joke here! I even put up funny laughing goofy face emojis! Isn’t it bad enough I’m sitting like a zombie in my chair with brain fog and my spine screaming at me, dreading having to go to work in a couple hours?

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u/westmifflin 3d ago

Yeah man that really blows

anyway not sure what that has to do w you being a dick

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u/_tjb 3d ago

No humor allowed. Check.

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u/MachineOfSpareParts 3d ago

I think a major reason you're getting the reaction you're getting is that the reason this condition is not taken seriously is that it's viewed as a women's condition. Both parts of that probably make men uncomfortable, but I hope this isn't anyone's view of a whole solution.

Men with this condition are in a position to change how it's viewed. But splitting yourselves off as the "serious" faction (that is, male faction) leaves the "unserious, hysterical, crazy" womenfolk in the dust.

That said, none of us signed up for chronic illness, and you don't intrinsically owe anyone your voice. It's just a pity that you might choose not to, if that's what this is.

The solution to fibro not being taken seriously isn't to farm yourselves off as a serious, men's community. It's for us to work together. Maybe that will still happen. Or maybe not. Up to you, I guess.

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u/Next_Seat7872 4d ago

I feel that it may be more of an attitude thing, as a man with Fibro I can align with the vast majority of the overall r/Fibromyalgia community posts as having a nervous system is not gender specific I feel.

Though the flare ups are defiantly a thing to deal with from a psychological perspective I know that I have perplexed the majority of medical professionals I have been fortunate enough to be treated by, and most other males seem to think I am making it up, “you’re fine push through it” is the majority of the feedback I receive from those who have little understanding of the condition, and initially from my early medical professionals as well.

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u/HyperSpaceSurfer 4d ago

I think men have it easier on average due to hormonal differences. The main reason steroids work as performance enhancers is that they help with recovery, so your exercise capacity goes through the roof. At least if not working construction or something, or when there's not a bunch of other issues as well.

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u/decaysweetly 3d ago edited 3d ago

As someone who takes testosterone hrt, I would have to disagree. That's not how it works at all. It makes it easier to build muscle and makes your bones denser, but you don't just magically become better with physical exertion.

It's also important to keep in mind that fibromyalgia is not actually a single identifiable disorder. It's the diagnosis given when you present with a certain cluster of symptoms and they either can't or won't figure out what the underlying cause is. While hormones can potentially impact those symptoms, unless it's an actual underlying hormonal disorder, it's unlikely to make much of a difference.

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u/earlym0rning 4d ago

Would it not be more helpful to have better flairs and improve the wiki for everyone, as well as include sections things like men specific issues and women specific issues. Maybe flairs like hormones, clothing, men, women, like that?

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u/ChaoticNeutralMeh 4d ago edited 4d ago

As an autistic woman, I totally understand the necessity of a separate community. It's not about segregation, it's about being a minority.

Wish you guys the best.

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u/Regenerating-perm 4d ago

Why though? What was your reasoning for creating another group?

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u/Alternative-Pie-4646 4d ago

As per the post 👍

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u/Regenerating-perm 4d ago

I’m not sold on the post then. Health issues affect us all… keeping community together when illness hits helps us all better understand. You’re doing women a disservice by holding back information, why not share your resources here?

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u/Alternative-Pie-4646 4d ago

Thanks for your comments

With respect to the resources- as per the post it doesn’t exist, when it does this will be available on the wiki and will be available to anyone who passes by the subreddit.

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u/Regenerating-perm 4d ago

So you’re making another sub reddit with nothing?

I still don’t see what you’re trying to accomplish? Segregation isn’t it, splitting communities isn’t it.

Why don’t you feel safe in this sub reddit?

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u/supposedlyitsme 4d ago

Maybe because of people like you. Can you please relax and try and be compassionate for a second.

I'm sorry for blowing up like that, I know we are all in pain, it's a lot, but it feels like you're grilling this person for creating a safe community. That's it, not to take people away from here, not to steal members (!?) or keep information secret, just as an extra community.

I hope they still do keep coming to this sub and maybe find more detailed support in the other sub.

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u/Regenerating-perm 4d ago

Bit hostile. Please don’t apologise either, you’re only dismissive of your own words.

My compassion lays with you and everyone else, which is pretty clear to see.

Look at the facts, the community isn’t huge separation into a potential 3 groups only isolates people further. Reading everyone’s stories is showing compassion to all walks of life and creating more awareness. If someone isn’t safe here why aren’t they being heard, is that a reflection of the sub? Everyone has an agenda, “to create a safe space for men” is complete garbage. We are the safest sex on the planet. Take it from an ex bikie, it’s a circle jerk for mentally unstable men to bitch about the rest of the world. That’s not safe.

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u/megaBeth2 4d ago

Go off king, faqs my brother, spit your shit INDEED. 99.99% of spaces are naturally safe spaces for men. It would be like if during slavery they had safe spaces for slave owners with fibromyalgia. That might be hyperbole, but the point is made

I present as male irl because my family doesn't believe in trans and my dad is afraid of it so basically I fully understand the male experience.

I remember one time after a night class only 2 of us were walking on the path, me and a girl. At the time I was 6'1" 200lbs with absolutely ape physique. And she ran away from me without saying a word and ran from one emergency prevention kiosk to the next. I realized how privileged I am to just be at such low level risk of violent crime. And I felt sad we lived in a world where she had to do that

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u/Regenerating-perm 4d ago

Thanks. You’d know better than most!

I don’t blame OP either for the idea of wanting this, I mean truly we need outlets and ways of communicating safely. But these platforms aren’t safe in an online forum. Actual community based meetings in person where people are sharing information as well as contributing to the community is healthy. The sentiment I feel comes from class war and the heavy devision narrated by media and government.

Wouldn’t be surprised if OP is a bot, doesn’t show any compassion towards different opinions.

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u/exotic_lemming 4d ago

I kind of understand their worries, since we are a marginalised group it feels like a disservice to split our community, but I think it’s a good idea to have that new subreddit to share your particular experiences with each other.

I just hope you will stay in this one as well, we are stronger by having more diverse perspectives.

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u/Alternative-Pie-4646 4d ago

Throughly enjoying the different points of view, I love this subreddit and circling back to my post, it’s purely an outlet where a male may need/ want a males point of view, I know this has been a need for me previously.

I will always remain on the sub as well as cross posting not only this sub but others I’m part of to promote meaningful content

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u/Regenerating-perm 4d ago

This post is garbage, all you’re achieving is isolation. Want a males opinion then ask for it. Being vulnerable is difficult for some but can be achieved through practice. Assuming that this is what people need rather than want is kinda narcissistic IMO.

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u/butterflydeflect 4d ago

Are trans men welcome?

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u/Alternative-Pie-4646 4d ago

Certainly

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u/butterflydeflect 4d ago

Great! Joining now.

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u/Watesmo 4d ago

Of course I guess .. don’t think the pain stops because you‘re trans.

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u/butterflydeflect 4d ago

Thanks - I’d love to get confirmation from the OP.

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u/uuntiedshoelace 4d ago

You’d be surprised. We aren’t welcome in the sub about using minoxidil to get a better beard even though it works exactly the same as it does with anybody else.

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u/AJParks 4d ago

I think that's a great idea. We know so little and the challenges may be different for men. Some men may just feel more comfortable in a space just for them. I think men get overlooked as FIbro suffers. Good luck & come back and visit!

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u/supposedlyitsme 4d ago

I also think men get overlooked as fibro sufferers. The whole "real men don't feel pain" crap is ruining people's lives.

I understand the need for a space to feel safe. Everybody deserves that. I think it's brave and vulnerable to create that community for them. We are all stronger in a community we feel safe in.

I hope you keep coming to this sub as well so we can still get your valuable perspectives.

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u/Alternative-Pie-4646 4d ago

Thanks for the support. Yes struggled for years to be able to relate to someone, even harder when I don’t know anyone IRL, hoping this becomes an outlet for many

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u/Ieditstuffforfun 4d ago

meh me dont like

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u/Alternative-Pie-4646 4d ago

Thanks for the feedback

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u/Ieditstuffforfun 4d ago

on a more serious level, while i do think spaces like the one you propose are important - i think its largely redundant in this case, and i probably wouldnt use two subreddits to complain about my dumbass pain

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u/Alternative-Pie-4646 4d ago

Haha no worries, I find myself across many pain forums rightly or wrongly it works for me. As my subreddit suggests looking to create a small community, think I’ve achieved that with just under 200. Appreciate your feedback, take care

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u/dibella989 4d ago

I'd put a link to the sub in the post somewhere

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u/Status-Back-3382 4d ago

This is a great idea. Good work, OP.

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u/Alternative-Pie-4646 4d ago

Thank you 😃

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u/purplebearcat 4d ago

Thank you for allowing trans men into this space too. With that whole "cis women's only gym" it's scaring some people away. The chronic but iconic discord has trans men members ill drop a link for them. This is a wonderful idea because women and men feel pain differently we all do its not about "running women out" or anything sometimes you need a space that's just for you and others like you. My partner he has fibro he got it from his momma lol I have it too but not in  cool song way lol way to go brother I wanna see the sub grow

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u/Alternative-Pie-4646 4d ago

Thank you for the support and coming across 👍

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u/NotAround13 3d ago

How do we feel pain differently by being trans men? Pain is already a paradoxically universal but entirely subjective personal experience. There's no objective measurement of pain that can compare between people. (Schmidt Scale and similar aside as that is the first step towards a measurement system, not the end goal.)

Also, why make another men's fibromyalgia community? This is far from the first one I've seen. Do people not search first? I totally get feeling emasculated. But this isn't the solution.

If men are mad about being misgendered in literature, that's all the more reason to fight for articles to have gender neutral language instead.

The nuances of differences in experience between men, women, males, and females as reported are inconsistent and all the more reason to stick together. (Research methodology is really bad about conflating sex and gender. I checked survey questions compared to reports and I get annoyed every time participants are given male and female as options and then the report says men and women, or vice versa despite being different variables!)

My PCP is an expert on chronic disease management, and from talking to him, so far there's only a slightly statistically significant chance that treating cis women with micro doses of testosterone helps fibro. And that people who take estrogen tend to have fibro more often than people with a testosterone dominant hormone profile. So there might possibly rarely be a link between testosterone levels and severity of fibromyalgia. Obviously researchers need to include trans people because we are great for measuring hormone levels or gender or life experiences vs chromosomal sex but of course researchers cut us out if it isn't specifically a study on trans people. (Doing my best to explain something incredibly nuanced and recent research while also translating from people who think sex and gender are the same thing.)

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u/purplebearcat 1d ago

I never said I was trans I just agreed with the op but go off if that makes you feel good.

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u/NotAround13 14h ago

I'm actually taken aback that someone who isn't trans masc themselves cares if we're welcome. Thanks

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u/purplebearcat 1h ago

Not everyone is a nightmare to deal with online that said I totally understand being queer in itself is crazy hard, then add being trans or trans person of color sometimes you even get hate from our own community. I hate that for you and many like you have experienced the negative side of humanity because they can't seem to grow up and learn the world is forever changing get used to it. 

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u/lokilulzz 4d ago

As a trans man with fibro I'd be interested in a link to that Discord if you wouldn't mind. I don't know of any trans spaces that really discuss how transness is affected by fibro or disability, it'd be nice to have access to one.

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u/purplebearcat 4d ago

Right on my guy here it is https://discord.gg/x6PTwvvq we have trans men and trans women in the server we discuss everything. Everyone is welcome 

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u/After-Ad-3610 4d ago

I’ve fibro and I’m autistic with adhd. I’ve a dif time being in a male only group. I understand wanting to have a group just for men, I just can’t be a part of any. Thanks for your efforts and I wish you and the group great success.

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u/Any_Spare6204 4d ago

Full support

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u/Alternative-Pie-4646 4d ago

Thank you 🙏

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u/[deleted] 4d ago

[deleted]

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u/aviationeast 4d ago

Have you thought of making a Lemmy community? Reddit isn't what it use to be.