too many changes to cope with..

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too many changes to cope with..

Postby MissLeona » Wed Apr 09, 2014 1:20 am

I was diagnosed with FM and chronic migraine in January after 2 years of testing. I feel like my lifes been turned upside down.
Finally my family realise that i have a disability and its not just laziness, but still alot of people don't understand this and the changes in me. I use to be such an outgoing person but now i hardly leave my house, my friends have all basically abandoned me because im in so much pain and had to cancel so many plans, had to go sick from my job (i was advised that i was going to get fired through the amount of time off i had) i have to move out of my home as i can no longer get up n down the stairs, i was studying to be a social worker aswell but had to pull out due to the amount of time off from the course.

I'm worried about what will happen with me in a few months/years down the line, i have a son and me and my partner would like another child but with the way i am now i doubt i could cope, my partners been great, his mum has FM so he knows what im going through but i just feel like crying every day, im in a constant battle between what my mind what's to do and what my body can do.

will this get easier in time and with the right meds or is that it for me.
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Re: too many changes to cope with..

Postby jenfitzy » Wed Apr 09, 2014 7:48 am

No you won't always feel so bad, there are times when you can cope and surprise yourself how much you can do. You could be having a flare up now, which is why is is so bad, keep on at your doctor to try different medication to ease this. I raised three sons and went to college, and held down good jobs until my late 50s.
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Re: too many changes to cope with..

Postby tich » Wed Apr 09, 2014 8:27 am

Know the feeling but their will be good days and bad one just keep your chin up and enjoy the good days and rest on the bad ones. I use my tens machine a lot its my best friend on bad days. Take care small genital hugs hope things get better.
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Re: too many changes to cope with..

Postby libbiek30 » Wed Apr 09, 2014 8:59 am

Hi you will get used to ways to cope and hopefully with the right care from it gp u can get on with it life. I work part-time and have a 12 year old I tried for more but it didn't happen. I had long course of acupuncture and it really reduced my pain and I only get mild migraines now. Ask it gp if they can refer u. I had it at my local hospital. Hope this helps u can live a fairly normal life :-D
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Re: too many changes to cope with..

Postby nicola75 » Wed Apr 09, 2014 9:09 am

Hi Hun,

So sorry to hear you're having such a hard time at the moment. FM can be so hard to get used to, you are going to grieve for the person you were and for the things you used to be able to do and are no longer able to. I was diagnosed last year after 10 years of suffering and being fobbed off by doctors......but it does get easier.

The one thing I've learned is to listen to my body, i've learned that I have to pace myself when doing anything, some days I feel like I can do anything and others I struggle to get out of bed, you will learn to do the same hun. I am a single parent and I'm so lucky as my children understand that mum can no longer do some things with them.

Like you I've lost all but a couple of my friends cos of being tired and in pain and having to cancel plans on them so many times, (they just don't understand what we are going through)

You will learn to cope with all this hun, it's just a slow process, but make sure you talk to your doc, you will probably try different meds until you find the right combo for you.

Keep your chin up hunnie and gentle hugs to you.

Nic :-) xx
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Re: too many changes to cope with..

Postby teddybear7 » Wed Apr 09, 2014 11:17 am

Hi I understand exactly what you mean. I am recently diagnosed. I look so well it's really hard to make others understand. Even close family. When you think they've finally got it they do or say something that makes you think omg I'm going to have to start all over again. I have cut working hours down to about 20 a week I'm self employed which means I can pace myself. Although it has been hard to get my partner to understand that when I say I can't do something I actually can't. I am trying with no meds although I do take cocodomol When it's really bad. I have an autoimmune liver disease too so meds make that bad. It's all about pacing and rest. Friendships too have been hard I ended up writing it all down on paper and posting it through my best friends door. It was very therapeutic for me and now she understands. Keep going and remember pace and rest gentle hugs (I know they hurt).
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Re: too many changes to cope with..

Postby philippa13 » Wed Apr 09, 2014 12:33 pm

I must say having fibro is crap. Your tired nearly all of the time the pain is unbearable. even when you put on your make up to try and mask the pain in your face so that what's left of your friends and family can look at you without that look that pity's you. Ok you might look like your old self but by god do you feel a million miles away from it. I have lost my friends, family, job and career my pension is also crap so I've no money, it broke up my relationship, every day is a struggle and it's been like that for five years longer if you count the years I lived with it before it won and I just couldn't push myself any longer. I've had pneumonia also been diagnosed with arthritis in both shoulders I've so many dam symptoms now I wanna cry all the time. So yes I can relate the good days are very few now but I still have hope that a cure will come.
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Re: too many changes to cope with..

Postby Tennisfan21 » Wed Apr 09, 2014 12:42 pm

I have no one to talk to about my FM anymore as I hardly see any of my friends as I think they have got so fed up with me moaning about how much pain I'm in and cancelling plans. It's hard enough trying to get my head around this without my friends abandoning me too, some days I feel so lonely I just think what is the point of carrying on!!!! Last weekend I spent 3 days in the house and didn't see or hear from anyone in that time. I push myself to go to my tennis coaching just so I see people outside of work. I went on Monday and now I am paying for it by aching like hell. I was diagnosed in March and told to go and look at a website about it and that was it, I have not seen a medical professional since and just been left in limbo. They did send me another appointment to see the specialist but not until August. I am completely in the dark with everything. Sorry for the moan, hope you feel better soon. x
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Re: too many changes to cope with..

Postby FluppyPuffy » Wed Apr 09, 2014 2:14 pm

:welcome: to our little sanctuary Leona :cow-wave: :cow-wave: :cow-wave: With this being your into post, I've moved you into here as it's a more suitable board, and things won't get lost in amongst the other topics that are posted to the board you were originally on.

How you're feeling at the moment is fairly typical of what happens after you have been told you have FM. Everything that you knew as life has been whipped out from under you, making you spin round and round until you come to a stop and find yourself on your head with everything strewn out all around you.

It's a stage that most of us have been thru. It takes a while to find your way thru it, and it will be a bit of a bumpy ride, but you will come out of the other side of this, with things hopefully being a little lighter and brighter. How long it takes is virtually impossible to say as we're all so very different when it comes to FM.

What may happen in the future is also difficult to say. For some, they quickly find the right mix of meds, treatments, therapies etc for them and are able to get things behaving in a more suitable way and lead a fairly normal life. For a lot of us tho, this stage can take quite a while to find a way thru with needing to try out various meds, treatments etc in varying combinations and dosages to try and find some easing. How we find our way thru is to go day~by~day, or even hour~by~hour, take what comes and deal with it the best we can. As each day passes tho, you will learn a little more about the condition, how it affects you, and what your capabilities are with this condition in your life.

Wrt wanting another child, there's no reason why you couldn't add to your family. For the moment tho, it may need to be a place or 2 further down on your list as getting yourself into the best place/health you can be in is necessary first. As far as your studies are concerned, altho you have had to give them up for now, being able to restart them again at some point in the future may be a possibility, something to aim for along with other wishes/hopes/plans you may have.

When it comes to friends, something like FM does tend to bring out the true colours of those around us, and the results can be rather :shock: :shock: :shock: Those that are the true and genuine ones will stick with you no matter how many times you have to rearrange/cancel plans. Some need a bit of extra time and info before they show their true nature.
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Re: too many changes to cope with..

Postby topcatt72 » Wed Apr 09, 2014 4:27 pm

Hi.....i to have fm and my family dont or wont understand my condition.....i to used to be ssssoooo out going and i had friends and went out loads..... but now like u iv lost friends and im more housebound than goin out places......but since being on this site iv found that i do have friends...ok they cant pop round for coffee but if i have a prob or feelin down/in pain then i know other people on this site are nice and remember u have lots of friends....just on here :-) :-) :-)
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Re: too many changes to cope with..

Postby MissLeona » Wed Apr 09, 2014 5:48 pm

Thanks for the reply's. I'm glad this site is here just for me to be able to understand it more and to speak to people with fm. I have spoke to a few people in my area that says they have it but they no nothing about it or even remotely feel like i do.
right now im stressing myself out over all the battles im having with doctors, benefits and moving. I know stress is a major factor in a flare up and i can try prepare myself before the flare really hits, my skin seems to erupt in rashes and tiny sore lumps then i get an awful migraine then a flare up.

regarding my friends its heartbreaking that they have just disappeared, one of them i have helped through alot of family illness and personal problems and felt he could come to me any time he needed help or someone to talk to, yet when i needed help or just a moan he was gone.
i suppose its true that people show there true colours in times of need.
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