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Fibromyalgia Action UK

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Hi to everyone

Normski57 profile image
18 Replies

Hi I'm a new member as I've just been diagnosed with fibromyalgia and have a few questions to ask you please, firstly I'm not ashamed to admit I'm quite scared of what's going to change in my life Are people with fibromyalgia able to work? I feel so exhausted and in constant pain I don't think I could do an hour never mind 12hrs a day that I have done till I went sick.can fibro be controlled? Or is it necessary to be doped up with so many meds? And last but not least my husband has said we will sell up and move abroad if the warmer climate will help? I wish you all well xx

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Normski57 profile image
Normski57
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18 Replies
Dizzytwo profile image
Dizzytwo

Hi there, let me wish you a very warm welcome to the group. I realy don't think you need to do anything as drastic as move countries. I've had fibro for 30+ years and I'm still here lol

As for been doped up I can honestly say i'm not.

I have tried all thevmeds on offer and personally they did nothing for me. So I take each day as it comes and deal with it accordingly.

One thing you should bear in mind no matter how bad you feel Fibromyalgia is not known to kill you.

Mo

in reply toDizzytwo

Hi Mo,That's very interesting what you mentioned about the meds. I have tried several and found they didn't help and the side effects were not good and don't take any for fibromyalgia now. I pace myself,rest when needed and am learning to know my limits.

Jacqueline

Dizzytwo profile image
Dizzytwo in reply to

Good morning, as you can see by some of the replies Fibro is different for each of us. So there is no one plan fits all. To be honest the hot weather makes my fibro worse. For others it's a great help.

Some can still work and others may be house bound. I myself am a wheelchair user due to fibro. This does not mean you will be.

I guess the two main tools that have helped me is learning to pace and distraction.

Mind you after 30 years i'm still working on the pacing lol

just listen to your body and don't measure how you feel against how others feel.

You do have a life my dear its just not the one your used to. There is no miracle cure and we can't see into the futer. Sitting and thinking what if or but is a waste of time and good energy and we all need to reserve as much of that as we can lol

Now you take care and enjoy a relaxing Sunday.

Mo

TheAuthor profile image
TheAuthor

Hi Normski57

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I have pasted for you below a link to our mother site, FMA UK which hosts loads of useful Fibro information:

fmauk.org/

I would say, as Dizzytwo said, and take each day as it comes. Fibro affects everyone differently so there is no one size fits all when it comes to work and play. Some folk can work yet others cannot. I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

Normski57 profile image
Normski57 in reply toTheAuthor

Many thanks to you you are so kind

TheAuthor profile image
TheAuthor in reply toNormski57

Good luck my friend.

BonnieSue profile image
BonnieSue

Our Florida weather is very hot and humid and I can't imagine needing it any hotter! Where are you that you are wondering if you should move?

Can fibro be controlled is your next question. Yes, to a degree. If you don't aggravate it you save yourself a lot of pain. In order not to aggravate your fibro you have to avoid repetitive movement and working very long at all, no matter what you're doing. For repetitive movements you have to switch hands and switch arms frequently such as when using a computer mouse or even writing, scrubbing, sweeping and using tools.

If you keep using one arm or hand quite a bit, you have to stop for the day and wait until tomorrow to do some more of that activity unless you want muscle spasms and pain that won't just go away. With the muscle spasm you can't fully use the arm or hand anyway, so you are forced to not use that body part after all.

Stretches are helpful when you're starting to overuse a muscle. It helps you not to leave the muscle cramped up and you might avoid some pain that way.

The only meds I know that help with fibro are Savella/milnacipran and Cymbalta/duloxetine. I'm sure there are others that help in some way but I'm not familiar with them. I wish you the best of luck with managing your fibro!

Normski57 profile image
Normski57 in reply toBonnieSue

Hi bonnie sue thank you for your time replying to my questions ,I'm living in the northeast of England so it's very cold for long periods which depresses me a lot and would love to have the sun on my back all year so maybe Spain would be nice , Take care x

Fibrolife profile image
Fibrolife

Hello! I am so sorry you are in pain. Fibromyalgia is a tough illness to deal with day by day. I do a lot of praying.

Be Blessed!

Normski57 profile image
Normski57 in reply toFibrolife

God bless you

Benson66 profile image
Benson66

I work 30 hours a week with fibro, its a case of pacing and getting rest when you can. I have other health issue but also manage them with working. I think it is important not to let fibro control you but you control it. Working gives me a reason to get up in the morning, mix with some lovely people and do a job l enjoy. I would not want to sit at home just thinking of my pain and discomfort.

Jaqs2017 profile image
Jaqs2017 in reply toBenson66

Hi Benson66 , I am relatively new to the site, I am currently working as a nurse and I have dropped from full time with lots of driving and desk duties to part time 30 hours, however I am still finding that I struggle, learning alot about pacing myself but finding it the most difficult advice to put into practice as my shifts are long and when I feel I am causing an increade in my pain levels I just after keep going until the end of each shift....we all know the result of pushing ourselves, can I ask what you do please and how you manage this (if you experience the same)....I suppose the ideal would be to have a job which offers flexibility but unfortunately they ate few and far between in nursing x wishing you all well and a peaceful, pain free day ♡

Fibrolife profile image
Fibrolife in reply toBenson66

It depends on what type of job you worked. I made very good money working as s janitor

Try cleaning 5 buildings every day 8 hours a day, 40 hours a week!😳

Nobody wants to sit at home, but try doing that!

Jan810 profile image
Jan810

Hi, how lovely of your hubby to say that. He must be very doting to your needs. Everyone is different, and your symptoms may not change, or you may feel as if you have good days and bad days, you may feel better for periods. Everyone's pain levels differ. I suffer more with tiredness than pain, but some people are in agony daily. It's all about pacing yourself, not doing to much on your good days or you will suffer. It sounds like you suffer terribly from the tiredness. I think working is a personal choice wether you feel you can or can't. Only you know what you are capable of. X

Normski57 profile image
Normski57 in reply toJan810

Hi thanks for your help and taking time to message me I will take on board the things you have said I'm a fighter and will do my utmost to make the best of a bad thing take care x

bluebell99 profile image
bluebell99

Hello and a warm welcome to our friendly fibro forum where you can find good advice, help, support and understanding.

You must be feeling all sixes and sevens at the moment and it will take a little while for you to become used to the idea. For some it is a grieving process for the life they used to lead, for others it can be a relief that it is an illness which has finally got a name, and although it is lifelong you will not die from it.

Do please have a look at our Mother Site fmauk.org as this is full of useful information, including links and guides.

You may find the weekends a little quiet with responses but there is usually someone about.

So many of our members have spoken about pacing. If you google "The Spoon Theory" you will find advice and information explaining how to do it.

I hope we find you joining in around the forum.

Kay

Normski57 profile image
Normski57 in reply tobluebell99

Hello Kay many thanks for your kind words of wisdom ,I have learnt so much by talking to all you lovely people ,Especially as everyone else has the same , but it differs from one to another how it effects us all take care x

Jaqs2017 profile image
Jaqs2017

Good morning Normski57 , nice to make your aquaintance, welcome to the group....I am newly diagnosed and new to the group too, already finding lots of helpful advice and positivity ♡ wishing you a peaceful day x

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