Im new to this....: Morning everyone... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Im new to this....

G4AUD profile image
18 Replies

Morning everyone .

I was diagnosed with fibromyalgia towards the end of last year after numerous tests visitation doctors and consultants and time off from work .

I was a fit person regularly down the gym and had a great social life. I've been single quite some time so getting out and about was important to me.

Fybro has completely changed all of that . I work Monday to Friday and if I can manage to get through a whole week when I come home from work I eat then go to bed... Repeat for 5 days !!! At the weekend I normally feel to exhausted to do anything . I rarely see anyone don't really have a social life and It's a constant struggle just to stay awake most days and fight of the headaches and pains. All I'm taking right now are pain killers . I don't really suffer too much with the pain it's just the headaches and tiredness .

Anyone out there who could recommend anything . I want my life back 😓.

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G4AUD
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18 Replies

Hi And welcome to the forum :)

I can understand what you are saying as I try to stay away from pain killers if I can, but tiredness and headaches are ever present. I have started drinking more water and do gentle exercising to include stretches which can help with the headaches. Other times it is get the medication out. I work five days a week but only 4 hours per day and again it means I can usually get some rest in the afternoon if I really need it.

I presume that you work full time, if so, could you shorten your hours if allowed and finances permit :P Can you manage to sleep at nights, I have found that taking Amitriptyline allows me to sleep at night which in turn helps with the tiredness during the day :)

I am sure someone will be along soon with more information for you. I hope you find something useful :)

G4AUD profile image
G4AUD in reply to

Hi.... i'm a single woman so i have to work full time and unfortunately my job is quite stressful but i have to pay the bills. I struggle during the afternoon and by Thursday i'm totally burnt out and at least one Friday a month i'm off work in bed.

It's so frustrating in this day and age all of us on here have to suffer daily.

Thank you for taking the time to reply .

in reply toG4AUD

Your are most welcome.

It is difficult to work full time and as you say when your job is stressful it adds to the problem. Money constraints always dictates actions :(

There were posts a little while back about the advantages of the power nap. Maybe your day could be restructured to allow you to rest up midway. I know in some jobs it is not possible and there are a lot of people who have had to give up jobs they love as they couldn't cope any longer and that is always sad. Can you talk to your boss about restructuring...you say one Friday a month you end up off, if you can manage without that money could it become an actual unpaid day off for you to recharge your battery?

Sorry this is me trying to think so it may not make a lot of sense :)

G4AUD profile image
G4AUD in reply to

When i was examined by my company doctor they advised my hours to be reduced so i do two late nights a week now but i guess over time that will have to be reviewed.

I've seen quite a few posts on here where people have written about them having to give up work. That would be a disaster for me i would just like to find something that helps to manage the symptoms but is there anything ?

I appreciate your thoughts it really has been so difficult to try and get friends and work colleagues to understand the symptoms of this illness.

in reply toG4AUD

It certainly can be. I hope you get some thing sorted. Maybe your own Gp can sort out some medication that might help and if need be ac occupational health may be able to offer some solutions for reducing pain if your are at a desk job. There are leaflets that can be printed out to give your employers or work mates.

Hopefully someone more knowledgeable will be able to offer better advice :)

G4AUD profile image
G4AUD in reply to

Until a miracle cure is found at least we have this site and can pass on information and more importantly discuss our issues.

Have a happy healthy weekend.

stumpedok profile image
stumpedok

Hi there.....Fibromyalgia IS tough and depending on how severely it affects someone and it's combination with any other conditions, it means change to some degree....understandably you want your old life back......no one chooses to be unhealthy....but how realistic is this? This site is littered with people's stories, mine included.....instinctively we seem to want to 'fight' it as if we can bulldoze it away......sadly that seems to be a fallacy, a dangerous self delusion. .....eventually many of us 'get it' that we need to understand and accept how this illness works and cooperate with it so that our lives are not a miserable round of 'push and crash'. There is no one size fits all magic solution BUT there IS a range of useful measures we can take to live better with Fibro.....sometimes that means making difficult decisions including around financial issues.....good luck with your journey. All best.

G4AUD profile image
G4AUD in reply tostumpedok

Hello, thank you for your kind reply.

Push and crash is such a great way to describe my weeks i push myself daily to gain some normality and then eventually crash !!!

It's so comforting to know i have people to discuss these issues and understand how i feel.

I wish you well.

stumpedok profile image
stumpedok in reply toG4AUD

You're welcome G4AUD...but I can't claim to have come up with the term 'push and crash'.....it's been around for some time....but it's a very apt description!

Sometimes I find it helpful to come at this from the opposite end ie 'what's going to happen if I don't do/change something now'. Yes the answers that come up can be very challenging to face up to but would you rather be proactive or reactive? Hope you don't mind me being a devil's advocate here! Take care.

PS have a look at the poster image posted earlier of Fibromania ...says it so well!

G4AUD profile image
G4AUD in reply tostumpedok

Yes very apt...only being on here a short while i'm still learning how people deal with this situation and the terminology used. I'm sure i'm going to find this site very helpful and so nice to have people like yourself to discuss your issues with :-)

stumpedok profile image
stumpedok in reply toG4AUD

Hi...you might like to take a look at the following site as well as fibroaction charity site......chronicfatigue.about.com/od/copingwithfmscfs/ss/lifestyle changes. ........covers all aspects including work and Fibro. All best.

G4AUD profile image
G4AUD in reply tostumpedok

Thank you so much for the site address I had a look over the weekend . Very helpful.

stumpedok profile image
stumpedok in reply toG4AUD

Glad you found it helpful....I only came across the site recently ....I'm still reading! The better informed I am about Fibro the greater my chance of living better with it. All best.

countess profile image
countess

I can completely understand how you're feeling & spent years fighting this before being diagnosed last year. I've had to give up work & that hurt!! Now I'm leading a simpler life, less of a social animal but I'm learning to appreciate different aspects of my new life. Financially it isn't easy but acceptance & managing this is the key. CBT has helped to get to this point. Now I'm applying for early retirement at 55yrs & looking forward to developing some small bizz ideas once I'm physically more stable & I'm excited by that. Good luck & PACE yourself x

G4AUD profile image
G4AUD in reply tocountess

Thank you for your response and I understand totally the position you were in. I pray and hope one day financially I will be able to take a job less stressful and with less hours. Until then I'm just going through the motions like a zombie !!

TheAuthor profile image
TheAuthor

Welcome to the forum and I sincerely hope that you find it useful, informative and loads of fun! I am so genuinely sorry to read how Fibro has changed your life and I want to sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

G4AUD profile image
G4AUD in reply toTheAuthor

Thank you for your kind words. Thus site is a great forum for discussion and most importantly understanding .

Many thanks .

fedupme profile image
fedupme

this fibromylagia is a real problem would never have believed it can cause so much agony neck been the latest big problem anyone with any suggestions fedupme

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