Recently diagnosed : I have just... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Recently diagnosed

amymiller94 profile image
4 Replies

I have just recently been diagnosed with Fibromyalgia after being wrongly diagnosed as having joint hypermobility 5 years ago. I am constanly in pain and tired. All I do is sleep, is this normal? I am currently working full time but can barely get myself up in the morning to make it to work. Does anyone have any suggestions? I am unsure if quitting work is the best thing for me as I am only 20 years old. I want to be doing the things people my age are doing but physically don not have the energy to do so!

Any help would be appreciated as I am still getting to terms with having this illness

Thanks

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amymiller94 profile image
amymiller94
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4 Replies
Fibrofoggiest profile image
Fibrofoggiest

Hi there amy and welcome to what I consider to be the best, most informative and friendliest forum for fibro. I would urge you to take a peep at our mother site fibroaction.org where you will find a huge amount of information which I think will be of interest to you.

Like you I find exhaustion is a key feature, together with the pain, and your frustration at not being able to do the things people of your age can do is very understandable and I can only sympathise with you, as fibro does Impact hugely on many peoples' life's. I wonder if you have been referred to a pain management scheme because a lot of what we all have to do includes pacing, working out and prioritising what you want to do and what you have to do to be able to achieve it. For instance if you are hoping to go out with friends one weekend, then make sure that you get as much rest as possible in the week leading up to it, it doesn't always work, but it may be a possibility. It is so hard to give concrete advice as fibro effects each of us differently.

Sadly you ask if sleeping all the time is normal and I always tend to think that there is no normal with fibro, and you ask about giving up work, that also is not something I can really advise you on, though I know I ended up having to give up, but I am a fair bit older than you. Having said that I have suffered with this since I was 17 and worked my socks off, which probably served only to exacerbate my problems.

I'm sorry not to be more constructive in my help for you, but I am sure others will come along and give you help too, but do know we are always here for you and there are others of your age who you may meet and be able to get advice from.

Sending lots of positive, healing vibes your way :-) :-)

Foggy x

aliwade profile image
aliwade

Hi, I have Hypermobility Syndrome, as well as Fibro. A lot of people with Fibro have issues with feeling sleepy all the time. I am the opposite, in that I can only stay in bed for about 7 hours most nights (there are some exceptions when I can actually have a lie-in). I get really stiff and painful first thing in the morning, and getting up and moving around helps with that. I had to give up work back in 2005, but was 34 then and my hubby is able to support us both financially. Can you do flexible hours or part-time? Ali x

TheAuthor profile image
TheAuthor

Hi amymiller94

Welcome to the forum, and it is wonderful to make your acquaintance. I genuinely hope that you find the forum useful, informative and loads of fun! I think that Fibro symptoms are different for everyone, in the same way that we all respond differently to our medications.

It may be useful to discuss how you are feeling with your GP or Medical Specialist, as I do not know what medications you are taking, and many of the usual Fibro drugs contain a sedative component and this could be adding to your issue?

I want to wish you all the best of luck with finding the answers that you so desperately desire and deserve.

All my hopes and dreams for you

Ken

Guccigirl profile image
Guccigirl

Hi there

I am so sorry your suffering and at such a young age too.

Are you working full time, could you maybe try part time to see how you are? But I'm sorry to say you may have to give it up until you are stable enough to go back. I would suggest a good long talk with your GP and rheumatologist ! It's just that pushing you're self can cause you more pain and exhaustion.

There is a great little video clip on lupus uk site, a lot of things similar as far as exhaustion , just it gives a few wee hints on managing your time and pain, to allow you to do things with your friends.

Being diagnosed with Fibromyalgia now means you will have to change the way you live, not stop!

Keep you chin up

Gucci girl x

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