Any men on this forum?

[cvc61]

I was wondering if there is a forum specific to men or does it not make a difference?
How can I search out mens experience, and women working in the trades and dealing with fibromyalgia?

I am struggling with fibro and so many aspects of my life, I just don't see any light in my tunnel.

I feel for you us all.

 

[Drtohelpfibro]

There are men and women here. While I don't have fibromyalgia, I am a physician who cares for many men and women who have fibromyalgia. The ratio of women to men with Fibro is 2:1 but men are more likely to be stoic and don't go to the doctor as often. There are other reasons for this as well.
Tackling fibromyalgia is a lot like the game of baseball. Most interventions are like singles. Occasionally there are doubles, rarely triples or home runs. There is not one single treatment but multiples that work together to hopefully help. This is very frustrating compared to other areas in medicine where a single intervention like an antibiotic for strep throat or appendectomy for appendicitis can cure someone.
What areas are you struggling with the most?

 

[Nailgunner]

Hi my name is Kevin live in uk had fibro for 30yrs since 22 yrs old started with muscle aches all over had every test scan poss but nothing showed up eventually told must be fibro been carpenter for 35yrs still am days tend to be pretty hard pain wise but try to carry on as normal have noticed that strength has greatly reduced and that summer is a much better time for me also have regular b12 jabs take vit d gabapentin and sometimes codeine and paracetamol for bad flares which are most days

 

[Cup]

I've just joined, not had any joy on my first post. Been told before that this is a "womans condition", whatever that means. It makes me feel like I'm less than I could be

 

[Nailgunner]

Yeah had all the women's only stuff docs think cus your a man and look normal your ok what a load of bull im gunna wear a dress wig and high heels next time I visit surgery aching allover

 

[cvc61]

There are men and women here. While I don't have fibromyalgia, I am a physician who cares for many men and women who have fibromyalgia. The ratio of women to men with Fibro is 2:1 but men are more likely to be stoic and don't go to the doctor as often. There are other reasons for this as well.
Tackling fibromyalgia is a lot like the game of baseball. Most interventions are like singles. Occasionally there are doubles, rarely triples or home runs. There is not one single treatment but multiples that work together to hopefully help. This is very frustrating compared to other areas in medicine where a single intervention like an antibiotic for strep throat or appendectomy for appendicitis can cure someone.
What areas are you struggling with the most?

First struggle is finding a doctor that is well versed in Fibromyalgia.
Second is exhaustion and fog.
Third is waking in the morning feeling like I have been drugged, never refreshed.
Upper back pain in spine and shoulder blades.
Other pains are random, the above is nearly constant.

 

[Cup]

First struggle is finding a doctor that is well versed in Fibromyalgia.
Second is exhaustion and fog.
.
Upper back pain in spine and shoulder blades.
Other pains are random, the above is nearly constant.

I don't remember writing this!!

Seriously though this line

"Third is waking in the morning feeling like I have been drugged, never refreshed"

is a big one for me. A lot of the time I wake feeling drugged or hungover, it's horrible.

 

[JayCS]

Hi cvc -

Personally I find it hard to believe the ratio is 2:1 - the German wikipedia even says the ratio is roughly 1:1 (based on a well-constructed German randomized controlled trial from 2013, which found 4:3), the English one 2:1. The reasons for far less men being in clinics, support groups and forums (my experience) might be understandable. But judging from the symptoms, amongst friends, relatives, colleagues and acquaintances I only personally know one other male who probably has fibromyalgia, but at least 5 females. However I also believe I know how males (would) talk, how they'd shrug it off. I know I'm challenging recent research, but: Aren't men changing? Aren't these just old clichés? Why can't I see all these fibro-men, wdn't I know one, being one?
On the other hand I personally need a maximum of interaction to learn from others to care for myself, whether male or female - we're in it together, and it's far more that, and it being a very personal, individual thing than a gender-thing. Plus if it is true that males tend to shrug off pain instead of talking about it, then that's exactly what's not going to help us...

Recent studies pinpoint differences (pubmed 2017, 2018, 2019), there are summaries on webpages, e.g. verywellhealth, or the odd specific forum. Here are a few relevant excerpts from studies:
"However, the FM patients only showed significant differences in the sensibility threshold to the pain, which was lower in the women. In addition, the best predictor of the experience of pain in males was sleep quality, and in the women, catastrofying pain." (Fibromyalgia in men and women: comparison of the main clinical symptoms, 2012)
"Thematic analyses of the survey responses suggest that men with FM have negative experiences with (1) physical and mental health, (2) quality of life, (3) relationships, and (4) careers as a result of FM. Interactions with health-care providers were deterred by (1) potential for misdiagnosis or dismissal of symptoms, (2) stigma of having a condition primarily affecting women, (3) differences in treatment of men and women with FM, and (4) need for health education resources. These findings dictate a need to improve communication between health-care providers and male FM patients." (Understanding the Impact of Fibromyalgia on Men: Findings From a Nationwide Survey Am J Mens Health. 2018)
“there is yet little knowledge about the gendered aspect of pain by men who suffer from typical female diseases like fibromyalgia.”
The masculine identity of the participants was re-negotiated by comparisons to other men and life before symptom onset, and by discussing expectations and beliefs of how men should act in contemporary societies. The transition from experiencing a strong, active and reliable body to experiencing a painful, vulnerable and helpless body was perceived as fundamental. Conclusions: Self-management and rehabilitation of fibromyalgia it is not only about learning to manage the symptoms but also about the struggle to find coherence in life through re-constructing gender identity that is acceptable both for the individual and for the community. ( “I can’t have it; I am a man. A young man!” - men, fibromyalgia and masculinity in a Nordic context 2019)

 

[sunkacola]

I've just joined, not had any joy on my first post. Been told before that this is a "womans condition", whatever that means. It makes me feel like I'm less than I could be

What? told it is a women's condition? That is not at all true and I am sorry you were told that, as it is dismissive and hurtful to you. It also is insulting to women, because it is like saying that it is a hysterical condition, all in the mind, and of course only women have those conditions because they are weak. Very, very outdated attitude and quite irrational as well. You are welcome here, Cup, and there are men on this forum. No matter gender, we are all suffering the same things.

 

[JayCS]

insulting to women, because it is like saying that it is a hysterical condition, all in the mind

It could theoretically be praise / a commendation, of course. But as we know - it isn't. I remember the strange smirky smile of my first rheum. - a man: First - there must be something to find here, ankylosis spondilytis. There isn't? Oh. Fibro? No, noooo - people with fibromyalgia are very different to you, you can't have that, go to neuro and endo... My 2nd - who dxed it without ado 3-4 months later - and maybe enjoyed bull's eye on all trigger points , priding she'd learned to apply exactly 4 kilopond pressure ... as used to be in the books... - was a woman...

 

[Fibromale]

I’m a male (my username gives it away) and new to this forum. I agree with everything mentioned above. After my diagnosis, I made the decision to be transparent and tell people I have Fibromyalgia rather than calling it a chronic pain and fatigue syndrome. I figure I can do my part to make people aware this illness affects both women and men. I look forward to receiving helpful information from this forum.

 

[sunkacola]

I’m a male (my username gives it away) and new to this forum. I agree with everything mentioned above. After my diagnosis, I made the decision to be transparent and tell people I have Fibromyalgia rather than calling it a chronic pain and fatigue syndrome. I figure I can do my part to make people aware this illness affects both women and men. I look forward to receiving helpful information from this forum.

Me too. I tell people I have fibromyalgia.
I also consider it a good thing to do to educate people. If a person knows me, they will know that I am not a person who exaggerates or lies, or who is likely to have a "hysterical" condition. I am strong and very straightforward and not in the habit of complaining about things. So when I talk about it with people they can get the information that may make them change their minds if they have been the type to dismiss it.

 

[JayCS]

tell people I have Fibromyalgia rather than calling it a chronic pain and fatigue syndrome

Well... since most people here don't relate to the word (fi- you what?) I use both, so that they increasingly can. My psychotherapist today however reminded me of the fact that I don't just have this (in the context of hardly being able to work any more), altho it's my main focus, and I do often add 'and several other diseases' to it and may do so more. It's true tho that it's fibro's quick exhaustibility and severe sleep problems (not the pain) seem to be the main and lasting symptoms that continue to make doing much activities hard for me. (Biggest problem after having reduced to 30%, is having to get up at 6:20 for work once a week till July. Managed to get the schedule changed on a 2nd day I had to get up at 7:45, but to do this I had to agree to work a bit more (without more pay). And these are the situations where we have to try to explain what it is. I had to find an answer to a retort, well why is 7:45 a problem, if you are here on a day where you got up at 6:20. I answered: my body is screaming at me and it will take a few days to cope with it. What I should have added is: "It's like your tinnitus: No-one can see it either"... )

 

[Drummer76]

I've been rather quite about mine. People know something is wrong but I don't go into details with it unless it's with my doctor.
I did a few times and People don't understand it. If I take a nap,I call it an old man nap even though I'm not that old yet. If I'm hurting,I just make excuses to stay home.
What makes Fibromyagia hard for me is I have to get up and exercise more since having a heart attack last December. It hurts and usually ends in me taking a few muscle relaxers and falling asleep to deal with the pain. I'm limited to Tylenol for pain since everything else messes with my heart.
Now the Dr is sending me to a neurologist to check for MS. She thinks that I may have early signs of it and wants to be 100% sure so she can either dismiss it or start treatment asap. I luckily have a good Dr who doesn't give up until she finds the cause of any issue. Don't find them very often like that. Most I have had over the years want to just write it off and send you out with a handful of pills.

 

[CancerSignFibro]

Yes. I am a man! Had this since my 20s.