Is there any men out there that has this condition - EDMESH

EDMESH

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Is there any men out there that has this condition

louise67 profile image
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louise67
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cromanovska profile image
cromanovska

If you mean ME/CFS.. yes i know several

louise67 profile image
louise67

Hi cromanovska, thank you for your reply. The reason i asked if there was any men out there with CFS is because my husband has got it he has also got fibro and we have never come across any men that have one or both

edmeshscot profile image
edmeshscotEDMESH

Studies have shown that there are about three times as many women affected as men.

See hfme.org/methemedicalfacts.htm

I know some men with ME too, but they're definitely in the minority.

This article might be worth reading too: cfids.org/archives/06-10-ch...

louise67 profile image
louise67 in reply to edmeshscot

Thanks for that i will have a read

myhealthneeds profile image
myhealthneeds

Yes we have at least two men in our Group. They are the ones who attend the Support Meetings anyway. One of them decided to become self employed as he cannot cope with being employed, as he never knows how he will feel and he couldn't cope with the stress of trying to find work. I also have a friend who took ill with it years ago and it wrecked his career. He seemed to cope better for some years but when his wife died he got worse again but he is now retired so can rest when he needs to or visit his brother for a break.

I used to go for art classes with a very nice teacher who also plays bass in a band. Having depression myself plus various other things, I was suspicious that there was something wrong with him and one day he told me had M.E although his GP would not actually confirm it. When it all came out it turns out that he was in a right state, having had to give up his job hence becoming a part-time private art teacher, and his wife had to be the main bread-winner so she was working full time and he was looking after the kids. I was really shocked, not that he was a man with this problem, but at the state he was in, the lack of help he was getting and the extreme efforts he had gone to to hide it from people because he felt so ashamed. He has good days, bad days and terrible days but I haven't seem him for a while. Next time I see him I am going to make a point of talking to him.

louise67 profile image
louise67 in reply to

Hi Arrow thank you for your reply,yes my husband has been in a really bad way he had to give up working 15 years ago due to this illness some days he can hardly walk and like your friend he was ashamed to admit this illness was doing this to him,the thing with this illness he can look well when in fact inside he is dying then he thinks people do not believe him. It seems to be more common in women than men that is why i asked if there was any men out there will this

PaulWD profile image
PaulWD

Yes, I do.

I am 39 and first experienced CFS symptoms when I was 15. I have had ups and significant downs since then and it has never fully left me. However, I just about manage to work full time, but need quite a lot of 'down time' when home. I have just yesterday started as self-employed and I hope that this will allow me the flexibility I need in order to take better care of myself than 9-5ing did.

louise67 profile image
louise67

Yes that is what worries my husband holding down a full time job he had to give up working 15 years ago when he was 30 and he is still not fit for work,may i ask how old you are now? I think going self employed would be better for you hopefully that will take the stress off you,i hope you have a breakthrough very soon from this awful illness

tonyo profile image
tonyo

I do too.

I caught a virus June 2009.After almost 9 months of the most incredible pain, multiple hospital/gp visits,countless blood tests (each 1 coming back 'normal' ) I was diagnosed with ME/CFS . I lost my job,my social life all the energy and vitality that makes you who you are...amoung so many other things I got zero help/support from any health agency or DWP. It has been a terrible time for me and my family. It has taken me 3 yrs to get my head round it. To know that i will most likely never work again is very hard, after working ones whole adult life and with a 15yr career behind me and now to be thrown on the scrap heap at 48 is devasting

BUT i'm lucky to have an amazing wife and an understanding family its only now i'm making progress in my outlook. The illness is still here but i feel brighter inside. I hope you find something that works for him. All the best

louise67 profile image
louise67

Hi tonyo first of all i would like to say thank you for your reply,like you my husband has been struck down with this awful illness and we havent come across any men with it. My husband became ill when he was 30 and now he is nearly 49 and like you he had to give up work,which i still think he hasnt come to terms with he worked full time and played football twice a week so it really hit him hard to find out he will never be able to do these things again. When he first became ill the doctors thought it was all in his head and they didnt give him much support,but now they are starting to understand this illness we have been in some very dark holes in the last 15 years to the point he tried to take his own life,but he is now starting to take control of the illness instead of the other way round. Thank you once again for your reply

tettridge profile image
tettridge

Hi

I am a bloke with ME.

Sorry for not replying sooner but I have been in Hospital for a while and am slowly recovering from Pneumonia.

I had a bad cold way back in 89 and as you do kept working with it until I found I just did not have the energy to get up out of bed. to actually go to the toilet would exhaust me totally. I had a year of this with loads of hospital trips etc until one day a doctor who was visiting a friend of his in another bed in the ward took an interest in me (I was out of it at the time as anyone who has it knows what I mean) he spoke to my wife and went through my notes and he was the one who gave me the diagnosis of ME.

I had this terrible thing wrong with me that I honestly thought was going to kill me but I was to tired to care.

It took a long time for me to get back to work and from 1990 until today I find I really have to fight it.

I have as I said just had Pneumonia and this is not helping, I have Chronic pain in my spine and joints from Osteoarthritis and some days with a few other things (no Thyroid for example) that I find fighting it really hard. So my advice to anyone with it is to set yourself a goal that you can achieve and no matter how small it is stick to it on even your worst day.

Mine unfortunately is walking our dogs (Shih-Tzu's) but at this moment I have had to stop it until I get a bit better.

Sorry for going on.

Take care and Kindest regards

Terry

Knackered_lad profile image
Knackered_lad

Yes, men have it; anyone can have it - I have for just over 6 years. Other than the actual disability there are two areas of frustration with it. These views are my own personal ones so someone will likely have different ideas.

Both relate to acceptance of what you can’t do, and what you can do….and how much.

Firstly, you really have to be very conscious and cautious slowly finding your way about, and carefully look for any knock on effects that may come later, even 2 or 3 days after which is common and may last for sometime.

Take it all in baby steps, I wouldn’t aim for any targets though as you will likely suffer for it. Take it all nice and easy, no matter how little you do.

Do not fight this disability – you won’t win, go with the flow of it, and let things run their course, that’s the way I managed to have some quality of life. Learning to live with it I guess.

Secondly, part of the acceptance is get informed – the more you know, the more you can tell your, family, friends, work colleagues etc so they can have acceptance. The easier it will be for everyone to appreciate your limitations. There are some very simple easy to read reports on various websites. Action for ME have some that I found helpful. Print copies off and let those around you read them.

It can be an extremely stressful thing to live with, I have lost my job through it and I am currently trying to fight the case which often leaves me exhausted. This condition can be awful, there is no doubt about that. As I mentioned earlier, learning to adapt and live with it can make it more bearable. Don’t get your hopes up you will be better in 6 months, 6 years or 16, just understand you have it and accept it.

I have a computer full of reports and medical papers that I have collected and would be happy too forward them on to anyone that wishes. There are some really good helpful ones.

myhealthneeds profile image
myhealthneeds

I'm currently assisting a young man to fill in forms. He tries to hide his condition from others, especially young friends, and has a 'fake' Facebook where he portrays himself as 'ok' and puts pictures on there, week by week, of something he did for a short period last year, but it makes it appear that he is out there, 'having a life' all the time! It's sad, but the way he copes with his severe condition. He has a 'dream life' that makes him feel that he isn't totally useless, as he has a high IQ but at the moment has no future, can't plan his life and is just waiting to feel a little bit better. He was offered some work but just a little made it impossible to live from day-to-day as everything takes him so long and is broken up by days 'out of it' or times when very little happens but he finds it hard to admit that he cannot really do anything repeatedly or in the time-scale required to be called 'work'.

lizor56 profile image
lizor56

yes have had me for 7years now it is very upsetting for me as have family to teen age children. they have had to put up with their dad not being able to do very much all of their growing life it hurts me to see the looks on their faces as now am in bed alot with no energy.and i find it very hard to explane to them what is going on.but i do have a loving and understanding wife who has stood by me,even when i have told her to find someone better who can look after her.