It Ain't Easy Being A Man With Fibromyalgia

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Zoid

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I'm hoping to find some men like me out here who are suffering from Fibro. My local support group is all women. As a man, I have an extra burden to bear because most other men, if they even believe that I have a real disease, expect me to tough out the pain and work through it. Men see me as weak. Women see me as lazy. I've even had a number of women tell me that men can't get Fibro.

So, how's about it, men? Any of you had similar experiences?
 

Janet L

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Re: It Ain't Easy Being A Man With Fibro...

I'm not a man, but I have a husband and understand a little bit about how ridiculous men can be :-o The one benefit of women in your support group is that they're probably more compassionate and understanding, though I can understand wanting more of your own species to relate to.

No pain, no gain? Or, how about, pain is just weakness leaving the body? All typical man sayings :)

Part of the acceptance of Fibromyalgia, an area of coping that I'm very familiar with, is knowing that other people won't always be able to understand, and to learn ways to deflect criiticism, or if needed, remove those instances of negativity and/or remove those people from your life. The problem I've had is that there seems to be a lot of people that don't understand, or are cruel and mean in their comments. If I was to ignore or remove them from my life I'd be left with very few people, and without friends and family, life is not enjoyable. Like everything in life, it's a balancing act, just make sure it's not leaving you even more tired and fatigued.
 

bigbigfan

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Re: It Ain't Easy Being A Man With Fibro...

The people who care about you will understand, just be open with them about what your doctor tells you and they may even help you cope. Those who would judge you or that don't really now you on the other hand, do you even care what they think? Do you try harder even if it hurts just to appease them? It's a tough call.
 

Izac Joz

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Re: It Ain't Easy Being A Man With Fibro...

Hmm.... I have seen many cases along these lines. Often, when man is afftected with FIBRO, it so happens that a feeling of uselessness sinks into the person's mind. Along with the de-motivation and lack of interest it can produce, also affect's the patient's mental wellbeing. This often produces drastics effects in men, which is accompanied with severe pain due to lack of ...you know...that gist.

Generally, what a man who has FIBRO must understand is that, no matter what, and no matter who speaks against you, they dont know your journey untill they have walked with your shoes. So just leave those feelings deep and continue to feel inspired.
 

Janet L

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Re: It Ain't Easy Being A Man With Fibro...

That's so true, nobody knows your journey until they've walked in your shoes. I like that, and it speaks volumes. This syndrome is hidden, there's no bandages, no casts, no shakes or obvious signs, perhaps that's why it's so hard for some people to sympathize.
 

aydensmom

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Re: It Ain't Easy Being A Man With Fibro...

I definitely understand your pain. I'm a woman as well but my mother has been diagnosed with fibro. I know that for a few years, most of the doctors believed she was just making things up. It can be even more of a challenge to deal with if people do not believe you. It also sucks that men can be so bias, expected you to "stick it out" simply because you are a man. The pain you are dealing with can, at times, be quite crippling. I know that there are days when my mother does not want to get out of bed. The one thing that I can say to you is that you are a strong person and don't let the negativity of other people get to you. They do not know what you are going through. They wouldn't understand unless they had it as well.
 

Wickerman

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In my family it was my godfather who was diagnosed with fibro.. even tho we were supportive of him, I understand your need to find someone else who's exactly in the same place as you, because it's the same with him.

And like has been said, you gotta take other folks input with a filter, just let thru what's useful for you.
 

Izac Joz

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Yea. The best possible social tool is your mind. Take what is good and leave the bilge behind!
 

SamSelim

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I'm sorry to hear that Zoid, I can only imagine what it must feel like to have to deal with people who have such stereotype expectations of you as a man. You need to do what is best for your health and not allow social pressures to dictate your life and in any way compromise your health. I'm glad that you at least have a support network here and would like to let you know that we are here for you man :)
 

kris

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I'm sorry Zoid, and your right there is not a lot of men out their however, remember we are all here for you.
 

1sweed

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I'm not a man either, but understand what your going through. Does not matter who or what you are when it comes to Fibro, no one believes you at first, including yourself. The way it starts may be different for each person, but I can say the symptoms are bizarre. And they come and go at random, so if your confused and depressed, it is easy for others to be as well. But what gets me is the doctors. Some believe and some don't. And if your family doctor does not believe in it then trying to explain it to others is that much harder. My husband thought it was a big joke and as it progresses it ruined our marriage. Zoid, until more men are here I am sure us women can make you feel at home with lots of support.
 

goodkharma

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I can imagine the feedback you get from others...even worse being male. i have a dear male friend that is in the process of getting diagnosed, and at this point he just wants to know what is wrong with himself, and see what can be done to help. he is mostly beating himself up, feeling like he can't do what he used to and dealing with the repercussions of trying to do too much. I was diagnosed in 2006 and so i could see the signs of fibro's onset, and sent him some books to read about it. i think, zoid, as more and more men get properly diagnosed, there will be a change...maybe you will be part of that change in attitude. even back in 2006, and my being female, and my doctor being female, with all of that, she ran all of the pertinent tests to rule out all other maladies, and after all the tests and poking and prodding, she looked me right in the face and said 'well, i guess you can say your have fibro if you want to', to which i replied, ' dr. ____, i don't think anybody wants to say they have, or wants to have fibromyalgia'....needless to say i was looking for a new gp as soon as i got out of her office, because i realized that even though she had gone through all of the motions, she didn't really believe that fibro was a real condition.
so it may take a while, but maybe some manly sports figure or movie star will get diagnosed (not wishing this on anyone) and become spokesman for men with fibro.
 

sportsdan

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Hello Zoid,
My name is Dan and I was just diagnosed after 6 years of trying to figure out what was happening to me. I feel your pain, literally. This is a hard thing to deal with with when it comes to family and friends. It's difficult to explain and to describe. My wife is very understanding and has been on this journey from the start. My parents are very supportive as well. I'm 48 years of age and have only lived in the Portland area for about 3 years. I don't know anyone other than my wife's family. As you can tell by my username, I love sports. But my passion is Photography. Before I became unable to perform my duties at work I was a Sr. Nuclear Health Physics Specialist. The pain became too much for me and my lower back didn't allow me to do the things I needed to anymore. Feel free to chat or ask any questions and I'll help you as much as I can.
 

jleoco

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Re: It Ain't Easy Being A Man With Fibro...

What others who don't have Fibro don't seem to understand is that even though others cannot see what we all have to deal with does not mean its not real or that it doesn't effect our daily life. I was married when I was younger and was told I had fibro and the man I was with was so mean and said such horrible things to me and that in itself caused my SLE to flare up from the mental anguish and then that would also cause the fibro to flare up. Don't let what others say or do mess with you. You know and GOD knows what you deal with. Try some easy stretching exercises each day and try walking some and get those tendons and ligaments and muscles going. It does me so much good and I am not taking any meds at all for either illness. GOD bless you. :wink:
 

exploreandrespawn

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Zoid, I am so sorry for you. It is definitely not easy to be a man diagnosed with this illness. not at all. The basic idea that men have to always be the strong ones, that already weighs against you. I am very sorry you are going through this. All I can say, is that it will get better, I was Dx in the late 1990's and i have no troubles anymore. However, it took about 8 to 10 good years to get rid of it. I make sure I exercise as much as I possibly can. I cannot stress the importance of not giving up. Eating a good diet, juicing immuno therapy and please, please drink bottled water, and not any water from the tap.

My symptoms lessened so much when I stopped drinking water from the tap. Distilled water is the only kind I will drink. I used to get headaches and body aches form tap water and it made my CFS/Fibro worse.

http://ezinearticles.com/?The-Link-Between-Fibromyalgia-and-Drinking-Water&id=558947
 
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