I have just been diagnosed is it norm... - Fibromyalgia Acti...

Fibromyalgia Action UK

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I have just been diagnosed is it normal to have good days and bad. Also my legs are really painfull at the moment.

Libbylou profile image
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Libbylou profile image
Libbylou
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10 Replies

Hi

Fibro can be a fluctuating illness so yes it is common to have good and bad days or even bad and good weeks. Some people can even go into remission and it can feel like the fibro has gone but this is not common.

Conversely you can get what are called flare ups when your symptoms all get a lot worse. The trick is to learn to pace yourself and not get carried away when you are having a good day as you will pay for it later. For me learning to accept my limitations has been really hard. And I am not alone. So be gentle with yourself as you are still getting to grips with the wonderful world of fibro lol.

Libbylou profile image
Libbylou in reply to

Thank you. I'm trying to pace myself today as I am feeling good so taking breaks before doing things as I know I will feel awful tomorrow.

jillylin profile image
jillylin

Hi,

yes, it is very possible and very normal, if Fibro can be normal in any way. I find pacing helps though.

Sorry you have had to join the fibrofamily but you have found a wonderfully supportive place.

Libbylou profile image
Libbylou

Thank you. When you tell people you have it, they respond as if you just have a cold. It's difficult to describe the tiredness and pain.

in reply to Libbylou

Hi

Tell them to imagine the pain and achiness and sheet fatigue they get when they have had a genuine bad dose of flu (not man flu) as that comes somewhere near the truth and most people have had flu.

Mdaisy profile image
Mdaisy in reply to Libbylou

Hello Libbylou,

When I posted this a while about explaining Fibro, it seemed popular at the time

healthunlocked.com/!/#fibro...

Hope this helps

Emma :)

in reply to Mdaisy

Thanks for this Emma. It is spot on. If I had £1 for every time I've been really cold and people have said to me "it's NOT cold". I have at long last come up with the courage now to say "you may not be cold but I am"! xx

Ginsing profile image
Ginsing

Hi Libbylou

Pacing is a funny old thing. We try to set ourselves things todo and still we do to much. You need to try doing a tiny bit every day and it may sound barking but little by little the amount you achieve will grow. We need to rest we need to sleep and those chores have to be limited .

Telling people is difficult unless they are aware of \fibro CFS Me they are so similar. Show them the spoon theory you can find it on line and sometimes it helps our nearest and dearest to understand how difficult it is to balance our energy levels so we still have some left at the end of the day. xgins

reikilady58 profile image
reikilady58 in reply to Ginsing

hi gins what is the spoon theory ?? I also have trouble explaining to people but I have been more out spoken about FIBRO trying to help people understand the impact on us especially at work thanks x

Libbylou profile image
Libbylou

I just googled spoon theory, it is interesting reading.

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