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men get fibro too
8 Replies
joeboy - March 22

i found that out and i am having a really really hard time seeing why i want to stay alive... I need a reason to live i am 45 years old; was extremely active; cycled 40 miles at a time; just married to a wonderful woman... I cannot imagine that she will want to stay with me much longer. right now, it is my 13 year old daughter that keeps me alive.... but i dont want her to see me degrade over time.... i would rather her remember her dad as the vibrant active man she knew... i am only about 4months into this whole ordeal... my wife keeps saying we will get THRU this... she is in denial and thinks that i am going to get better. I am in constant pain, cannot sleep without drugs, wondering how many of you have BREATHING ISSUES].. i must think about breathing now.... otherwise I forget to inhale for like 4 seconds or more.... I have terrible fatigue and am about to lose my college teaching job which i have enjoyed for 15 years.... HELP!!!!


Noca - March 22

I am male too and have FMS. Are you seeing a Rheumatologist and attending a pain clinic yet? There is always stronger medicines out there. You can get through this. I would talk to your doctor about your breathing problems as they sound more severe than we can help here.


mdak - March 22

joeboy- Wow, I have been there a few times. It is not fun. I finally got the right support with the FM and I also have numerous other medical problems. It was april of last year I didn't want to live. Please let us help support you.It has taken several people in my life to put me back on track. Sometimes this happens, but if you are that depressed you need some help. I was wondering if you have a family medical act filled out at work. This would help you keep your job, so you can get control of your life. I did seek some psychologist and counselors who deal with chronic illness. I let others know that I need support and someone to call and check on me daily. I did my part with a workbook that has pulled me out of bed some days. My therapist knew that my pain is what caused my severe depression, so we made sure that I had good control of my pain. It made a huge difference. I know the extreme fatigue that goes with FM, you have to listen to your body. I know you have a job and that is very hard. I was wondering if you have long term insurance with your work place. I did and it payed off for taking it out. It is so important for you to seek some help with others and let your spouse know. Secrets on depression is very dangerious. I know.
I do know anxiety goes with FM. The breathing problems could be related to medications or anxiety also. Reading and getting informed is one of your defences against FM. I know it can be very scary, but if feel if you get the mental suupport and pain control it will make a huge difference. On your fatigue you will have to accept and change your life style to stay on top of it. Letting your family know that maybe you can't go on the bike ride, but I can play a board game or watching a movie together. I am the same age as you and a retired nurse. I hope we see you back on line for support. We all help each other!


kvc33 - March 23

Oh, how I understand. I am your age and have been ill most of my life. Here's the thing..if you end your life, that is what your daughter will remember, not how well or how sick you were. I'm sure it's devastating to go from being very active to inactive but your value as a human being is not in your activity level. I spend most of my time at home in bed yet I have an amazing partner and much to be grateful for. I often have the difficulty breathing. For me it coincides with low blood pressure. I take salt pills to bring it up. Get a monitor and see how you are doing throughout the day. My bf lost the ability to talk when he first got CFS and had to learn how to talk and breathe again. He saw a speech therapist for that. He got through it and no longer has to think about his breathing. You will getter better, it's not hopeless. However, as you know, this is a chronic illness and it is doubtful that you will go back to cycling 40 miles at a time. In reality it was never a good idea in the first place. Too much exercise stresses the body. Give it time, four months is a very short time with this illness.


January - March 23

Hi joeboy - some excellent advice in the previous posts, but I have to add my two cents. You do sound anxious and depressed, and who wouldn't be! Please get some help with a good therapist. You know, nobody gets to stay completely healthy forever; everybody is going to degrade over time - you had 45 really active years, lots of people don't get any. You are probably in very good physical shape, so you are not going to become an invalid overnight. OK, you have fibro and you have to deal with it. YOU are worth more than your physical prowess and your earning ability - you are worth something as a person, you have intelligence, and you have a family that cares for YOU. Lucky man. Please don't push them away. It's OK to need some help.

Here's the big word to remember: *LOVE* My father got really sick when I was a kid. (I suspect he had fibro on top of his other issues.) I watched him go downhill for a decade and then I lost him. Do I TREASURE those years I still had him around? You bet. Was I HAPPY to do little things to help him out? You bet. Do I wish he had asked for even more help? You bet. I even asked him not to work so hard because I'd rather have him around than have money. But he did push himself, even though he was sick, and he died way too soon. Are you hearing this?

Your daughter needs and loves YOU - not your active lifestyle. She needs your love, your words of wisdom and encouragement. She just needs you to be there, even if it's in a wheelchair. I KNOW this is true.

And maybe your wife needs and loves YOU too - she is telling you "WE will get thru this"- that sounds like she's in it for the long haul, right by your side. Maybe you aren't hearing her correctly. Maybe you need to rethink your definition of "manhood." Barring an accident, every "man" on earth is going to get ill. But...

Fibro is not a death sentence, it's just a pain in the ass, that's all. The Universe is telling you to slow down and smell the roses and be human. You can LIVE with this. There are meds and supplements to help with your pain, fatigue and sleep issues. Educate yourself, get a good doctor, and see what works for you. Above all, right now, sleep, rest, eat healthy and take care of yourself. Love yourself please. Your family does.

There's a lot of info on here about supplements and treatments that help people feel better, so I hope you will read up. And you might be able to work again once you start taking care of yourself. Maybe you can take a leave of absence for now just to rest up and find a good regimen of treatment.

Sorry this is so long - but I saw your post and thought of my Dad. I wish he had taken better care of himself so I would have had him around longer. I hope you will do that for your little girl. I've been LIVING with fibro for at least 30 years. Yes I'm worse now, but I'm older. I still get around OK - and just looking at me, you wouldn't even know I had any problems. So chin up Joeboy.

Please check in and let us know how you are doing.


kvc33 - March 23

Very well said, January. I hope it was just what joeboy needed to hear. We live in a stupid society that tries to convince people that their worth is in their productivity. You know what? I don't even LIKE busy people. They are too full of themselves. I prefer to be around people who have challenges and are doing their best anyway. They are far more interesting and inspirational.


firomama - March 25

hi there. im not a male and im 'only' 32 but i remember going thru my grieving period 3ish yrs ago when i was first diagnoised w/ FMS.
like you, i was very active....never cycling 40 miles but i was def. very active. i was a single mom of a sp. needs child. worked full time and went to school full time. 4 1/2 yrs ago, i had my beautiful daugther and all seemed alright. but when she was about 8 mos old i started to feel bad, really bad all the time. finally after 5 or so dr's and alot of tests i was told i have fibro. i refused to believe it at first. after all who wants to be told that they are 'broken' for life..? even now, after ive had a few yrs to deal w/ the idea and limitations of this disease, i still get mad. resentful. BUT, i had a bunch of wonderful yrs, very active yrs. and i still have a wonderful family. fibro can NOT take that from me. just like it cant take that from you. and your wife maybe going thru denial, but she will be there for you. and i have often said that if it werent for my kids......but thank goodness i have them, and a partner that loves me so much. i know they would be devestated w/ out me. that even though i cant do even 1/2 the house work i used to and i cant just go outside to play w/ the kids...hell, i cant just make love whenever...even w/ all those "i cants", im still needed, wanted and loved. thats awesome. there are still lots of things we CAN do, you just have to figure that out. getting your symptoms under control will help, so will acceptance. good luck and remember, your not alone and you are loved!!! good luck...gentle hugs


joeboy - March 25

Thank you so much for all of your kind words...I guess one of my biggest problems is that everyone around me is in denial EXCEPT me! NO one wants to believe it... they keep telling me I am gonna get better; that I am just depressed... of course its all too clear what is going on inside my body. anyway, I NEED YOU ALL!!


January - March 25

Hi joeboy - glad to hear from you! Have your support system folks read this site to get a better feel for the disease. It really is different in everyone, ranging from mild to severe. But it sounds like you're going through what we all do - most people without chronic illness and pain just don't understand. It's frustrating when you want to be heard and understood, and all you get is "cheerleading." So it's important to find a counselor who is trained to really "hear" you, and who won't dismiss your concerns. Maybe some family therapy would help too.

But please don't assume your life is ruined! Not true!! Once you get a good treatment plan in place, you really will feel better. It sounds like you have good people around who love you and are trying to encourage you - they just don't yet know how to do it the way you need it. Again, a good counselor can teach them how to help you. Hang in there!

kvc - you made me chuckle - busy people are kind of a bore, and pretty exhausting to be around! I agree, the coolest people are those who have had big challenges!



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