Recently diagnosed.: I'm only 18 and I... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Recently diagnosed.

emma2013 profile image
38 Replies

I'm only 18 and I've only been diagnosed with Fibromyalgia a few months ago. It is all so overwhelming! Because of my age, I'm constantly being labled as 'Lazy.' Because I simply can't do the things people my age would do, like go to college, go clubbing, walk around town with friends and so on. Even some close family and friends don't fully understand the way I'm feeling. I'm constantly knackered all the time, regardless of how much sleep I have, the tiredness just never seems to end! And the pain is ridiculous, even simple things like washing up could cause my arms, shoulders, hands and wrists to swell up! I'm still young, I've only felt like this for around a year and already it's driving me insane (not literally.) Will Fibromyalgia stick with me for life? Is this it for me now, or will things get easier as time goes on? I hope so!

38 Replies

Hello and welcome to our lovely forum Emma, you are most welcome here!

Take a look around our Questions, Blogs and Tags, there is a wealth of information there, advice, support, personal experiences and friendship too! Please read our FibroAction Guidelines, you will find these under Blogs at the top, please select FibroAction Blogs and then scroll down. We ask all our new members to read these, many thanks.

There is also lots of info on our main site at FibroAction, please click on the link below to take you there -

If you have any worries or concerns, please do not hesitate to ask us, we are always only too happy to help. We all understand, we are all in the same boat here.

I hope you enjoy your time at FibroAction! :)


Hello Emma, what a pretty girl you are. I am so sorry to hear that you have Fibromyalgia at such a young age, you sound a very strong person from your message above.

It's very common for our friends and family not to understand the nature of Fibromyalgia, we look ok so we are ok sort of philosophy, but as you know it isn't as simple as that for us. Even Admin and our Volunteer Team have Fibro too, so we all understand.

Regarding Fibromyalgia getting worse, unfortunately it is not unusual that without effective treatment, someone with Fibro will get worse over time. However, Fibro is not a medically progressive condition where it would get worse no matter what and you can also improve, no matter how severe the Fibro is. A comprehensive and accurate diagnosis and getting effective treatment are key. To get these, most people with Fibro in the UK need to educate themselves and become expert patients.

Some people even go into "remission" and become symptom free, although of course there is no guarantee of this.

It is possible to still lead a good full life with Fibromyalgia and also for our general well being to increase and for our quality of life to improve with a good understanding and effective treatment/s.

I hope this helps a little. Please be assured that we will do all we can to help and support you along the way and we are happy to help in any way we can.

Take care.

(((hug))) xxx


emma2013 profile image
emma2013 in reply to

Hiya Libs! Thank you for that bit of advice, it has really helped me :) You've not got it wrong there, Fibromyalgia can get better, but there are no promises! My auntie's husband had M.E, it was that bad to the point where some days he couldn't even get out of bed, until he decided to slowly build up his stamina, even if it was just as simple as going downstairs to get a glass of water! He did little things everyday and progressed over time, and now he's running London Marathons! So there is hope for everyone! Thank you for being supportive and it's nice to know there will always be someone there and the same applies to you also :)

Hope you're well!

Emma x

in reply to emma2013

My pleasure Emma, happy to help any time! :D

There is always hope. The more we understand about Fibromyalgia will help us to ensure we get the correct meds and treatment to be able to live our lives with this condition. We can all be hopeful, there is a lot of hope out there with increasing awareness too.

Thank you for your lovely message, much appreciated. xxxx :)

charlii profile image

Hi Emma and welcome to our lovely fibro family. Wow! You are one gorgeous girl!

My 18 year old daughter suffers from sacro-elliac joint dysfunction and like you she looks normal on the outside but struggles every day with things that others her age take for granted. Shes at university now and at the moment shes really unwell but managing with her meds and loving being independent. You need to get the right balance too as it can make such a difference.

Please look after yourself and we are always here, someone is usually around 24/7 if you need to talk or just a good moan as that can help to. You have already found the best way to help found us!!!!!!

Much Love Charlii xx

emma2013 profile image
emma2013 in reply to charlii

Hiya Charlii! Aw, thank you so much :) Oh bless her! I'm really pleased to hear your daughter is at uni, good on her! She could have easily used her disability as an excuse not to do anything, but it seems she's not going to let it bring her down and so she shouldn't! It's nice to know that people are always willing to talk, as there's just some things you need to ask, or other things you need to get off your chest! I feel sorry for my mum, me sitting here moaning all the time lol, so coming on here has helped knowing that I can write things down and you'll always have someone who can relate and understand you :)

I hope you and your daughter are well and I'm here if you need to talk!

Emma x

bbstport profile image

Hi Emma, and welcome to the group. Yes you are only young and i have met young people at the past fibro management group at my local hospital. Yes there may be things you cannot do but the biggest thing for you to master is "DOING THINGS DIFFERENTLY". You need to plan your day but plan only what you think you can do. If maybe you had a 8 drawer chest and you want to tidy it out maybe plan to do 4 days take a rest between drawers and the other 4 drawers the following day. You need to look after yourself. Yes you will come across people who think you are just lazy as we all do but you and your body will know what you can do and when you can do it. Are you on any meds for it ?

Hope this may help you and as previoius messages say we are all here to help with anything worrying you or a question you may have.


Belinda xx

emma2013 profile image
emma2013 in reply to bbstport

Hiya Belinda! I know exactly what you mean, I definitely don't over do it as it could lead to me being in bed the whole of the next day, so I limit the things I can and can't do :) I do take medication, not that I'm happy to, but if I didn't, I would be a lot worse! I take tramadol, amitriptyline, and paracetamol which have 30mg of codeine in them. Their not the best things to be taking, but they seem to be the only things that help! A long with eating properly, gentle exercise and a good sleeping pattern. This has helped me, so thank you :)

I hope you're well!

Emma x

Hi Emma, welcome to the forum sorry you have found us but there is so much information available here and we all know where you are coming from as we all have fibro and some of us older ones... Yes I,m old enough to be your mum have other illnesses too. From my personal experience , I was diagnosed at 25 by a very good GP and with painkillers and a carefully thought out exercise regime I had seven years of remission where I drove met my Husband worked full time had a child, I,m not saying this WILL happen for you but because fibro is so unpredictable you may well find some good meds and then get back to some semblance of the life you should be having right now....

Dont be afraid to ask any questions

VG xxx

emma2013 profile image
emma2013 in reply to

Hiya! You're right, there is so much information on this site that has helped me a great deal already! If something out of the ordinary happens and I get worried, I come and here and it seems I'm not the only one that it's happening to, so I'm not stressed thinking it's something serious! I'm happy to hear you have a full-time job and a child, that's great knowing that even with your fibro and other illnesses, you're still pushing through it! It just goes to show that there is hope, and I might not be like this my whole life! Thanks a lot for sharing that with me :)

Hope you're well!

Emma x

Ginsing profile image

Hi Emma welcome and also sorry we have to welcome you, this group is marvelous it covers all ages and is easy relaxed an we do have fun as well as being very serious and informed, As you can see from different peeps it does dissapear sometimes for great big swathes and then comes back. So never give up hope have courage and a bove all keep smiling it helps xgins

emma2013 profile image
emma2013 in reply to Ginsing

Hiya gins! No need to be sorry, I'm glad I've joined as already the forum has made me feel better with all the support and how welcoming everyone has been! I'm glad you can all have a joke and a laugh, as being serious 24/7 can be a bit depressing lol.. Don't worry, I'll always believe that things will get better, sitting here feeling sorry for yourself only makes things worse! And I'll always smile :)

I hope you're well!

Emma x

Cat53 profile image

Hi Emma, it sucks doesn't it? My Grandson is your age and suuers with CFS. His life has crashed to a halt as well. It takes time to adjust. You will find lots of advice and support on here. Speak to Funkyfairy too. She is your age.

emma2013 profile image
emma2013 in reply to Cat53

Hiya :) It sure does! Bless him, I know what he is going through, it's not nice, but the best thing to do is to tell yourself that the illness you have isn't nice, but there's people out there going through 10x worse! It helps, it makes you appreciate things more and makes you realise that things aren't as bad as they may seem, and things will get better! I only joined this site yesterday and already everyone has made me feel welcome and they've showed me that I'm not alone!

I hope you and your grandson are well :)

Emma x

Cat53 profile image


jjojay profile image

Hi Emma, there's other girls same age as yourself with Fibro . I used to cut a girls hair for her with ME and Fibro . Your not alone on here , we all know the feeling of our families not understanding . They will come around in time. When I see my young friend again . If you like I will mention you and maybe you can both compare notes . I have a lot of sympathy with you I know the feeling of not w ting to go out. Ex use my spelling I am having trouble this morning . X

emma2013 profile image
emma2013 in reply to jjojay

Hiya :) Oh bless her, my nan has M.E and Fibromyalgia and I see how much she struggles! It's nice to know I'm not the only one who has fibro at such a young age, as I've only ever really heard of people in their 30's+ being diagnosed, so I was quite shocked when I was told I had it! (I was hoping it was just a very long term virus that would disappear haha.) I hope my friends and some of the family do come round soon, as it puts stress on me which makes the fibro even worse! But I'm not going to prove myself to anyone, only we know how we feel! Ah that would be good, thanks, it'd be nice speaking to someone my own age who is going through the same thing! Your spelling is fine, honestly lol.

Hope you're well :)

Emma x

cmdrpolly profile image

hi Emma

you will get lots of good support on this website - I was diagnosed at 12 years old and have had times when the fibro was calm and then flare ups - good diet- understanding doctor- educated family and gentle exercises - stretching, hydrotherapy will help you mentally and physically - i have survived over 50 years of it

take care best wishes xxx

emma2013 profile image
emma2013 in reply to cmdrpolly

Hiya! Oh wow, bless you, 12 years old is very young! It's hard enough at 18 where people judge you and think you're over exaggerating, let alone 12! Plus you've said you have had Fibromyalgia over 50 years? Fibromyalgia isn't really well known now, so god know's how you coped back then when I'm sure it wasn't well known then either, even less so than now! I've read up on ways to control Fibro, like you said, diets, gentle exercise etc, so I will definitely be making some changes!

Hope you're well :)

Emma x

cardiff69 profile image

people who call you lazy aint got a clue,its destroying my life i already have a terminal illness but this is impossible,i also have a child with A.D.H.D. AND A.S.D. life couldn,t be worse.but as i know nothing about this sorry i cant be of more help.

emma2013 profile image
emma2013 in reply to cardiff69

You're right, they haven't, I just laugh at them and think 'You really haven't got a clue, so why judge something you don't know?' I'm really sorry to hear that things aren't going so well for you at the moment! I hope this site helps you feel that you're not alone and things WILL get better! I'm always happy to talk if you need to get anything of your chest :)

Emma x

dragonfly45 profile image

Hi Emma, sorry to hear you have been diagnosed so early, but chin up. You can only do what you can do, dont let what other people say get you down.

I am 45 and I thought I was the only person with Fibro until I found this lovely site, the people on here are great, they will give you support and advice,they have helped me alot.

I havent been on here for long, but for me its a life saver cos everyone knows how you feel. Let your family see what people are going through with Fibro by showing them this site,it might help.

Take care hun,

Sue xx

emma2013 profile image
emma2013 in reply to dragonfly45

Thanks a lot, Sue :) I will try my absolute best to ignore what people think, as only we know how we feel, so I just think to myself, the people who judge us are idiots as they haven't got the slightest clue! I'm glad this site has made you feel a bit better, I only joined it yesterday and already it has made me feel a whole heap better, knowing how much people generally care about you and understand what you're going through! My mum and nan also have Fibromyalgia, so hopefully I can get them on here too and show them it's not all bad!

Hope you're well :)

Emma x

Smudge91 profile image
Smudge91 in reply to emma2013

Me and My Mum are both sufferes of Fibro - i just feel useless when she is in Me and My Mum are both sufferers of Fibro - i just feel useless when she is in pain and I can’t help her plus I feel guilty because my sister and my dad have to do so much for me (even get me in and out of the bath on bad days).

I also suffer with the stigma taht comes with Fibro as my boss at work is very unreasonable which makes working ten times worse, she is so bad i am often at home in tears but as my mummy says its water of a Fibroducks back :D

insomnia1 profile image

Hi Emma nice to meet you and so sorry to hear you got fibro so young.I was diagnosed when I was 24 and have deteriorated over the years but have found it helpful reading about fibro and getting a better understanding over the years.It helps to learn to adapt to your situation ,pace yourself and find ways of doing things you struggle with.take care

Claire xx

emma2013 profile image
emma2013 in reply to insomnia1

Hiya Claire :) Bless, sorry to hear you haven't been getting any better! I've only had it a short time and it's hard enough as it is, it's scary not knowing what the future may bring, whether I'll get worse, better, or stay the same! But yes, you're right, reading about Fibromyalgia has definitely helped a LOT! Also joining this forum only yesterday has cheered me up to see I'm not the only one (Not like I want anyone else to go through it!) It just goes to show how many people do care and you're not the only one going through it! Thank you for the support, it does help :) I hope you're well!

Emma x

phlebo123 profile image

Hi Emma -- and welcome :) Now that you have been diagnosed I suggest that you try and read as much as you can about about fibro to help you understand it better. As a good starting point The Fibroaction website has lots of info.

As regards your family and friends learning to understand you, I would suggest that you get them to read "The Spoon Theory" (this has been mentioned on here many times before!) ......

Has your GP/Consultant suggested a Pain Clinic to help you learn about Managing Pain and Pacing yourself. There is a great website .... .. .. this has a great booklet that you can print off called "The Pain Toolkit" which helps you understand managing your pain and reducing it.

You have to work very hard at achieving a "happy balance" of activities and don't forget to praise yourself for every thing that you manage to achieve (no matter how small it is!!). Find activities that you "enjoy" (eg I enjoy small walks with the dog, yoga, swimming, baking cakes, sudoku puzzles) -- make sure you try and make time to do some things each day that help you relax.

Finally don't forget that "you are not alone" and everyone is here to support you :) xxxx :)

emma2013 profile image
emma2013 in reply to phlebo123

Ah that's great, thank you, I'll definitely be having a look at those later :) My doctor hasn't suggested a pain clinic yet, no, but I may have to ask him to refer me to one as apparently they can be a good help! I do little things at a time, and my mum praises me for whatever I do, however big or small, the same way as I do her, as she also has Fibromyalgia, so we do our best to help each and praise each other!

Thank you, I appreciate it, and the same goes for you :) Take care x

LindseyMid profile image

Emma, has your doctor explained why you are getting swelling? Fibro should not cause noticeable swelling, so please ask your doctor to explain this or refer you for tests and specialist care if they don't know what is causing it.

emma2013 profile image

Hiya Lindsey, my choice of words weren't very good there haha, it's not noticeable swelling that I get, it just sometimes feels like my whole shoulder has swollen up, it is sometimes noticeable but not by much. Because of the pain and it lasts for days, it can cause the shoulder to swell a little, according to the doctor this can happen in people with Fibro, it varies from different patients. My mum has Fibro and when she does washing up, one of her wrists swell a little because it hurts that much, so it can and does happen, but not all patients suffer from this :)

Emma x

dragonfly45 profile image

Hi Emma,my wrist swells up when i use my stick ,and also if I try to do anything.

Also my knees swell if I walk too far,so YES you are right it does happen to some Fibro Sufferers.

I'm sorry to hear your mum and nan have fibro it genetic then.

Fibro does affect more women than men tho, although I think sometimes I must have been aright cow in my past life with all my health issues.

Don't worry about replying your fingers must be sore with all the typing you have done.

Hope you have a good weekend, take care, Sue :)

wallflower_fairy profile image

Hi Emma,

I am so sorry you've been diagnosed with this thing at such a young age. I was diagnosed at 16 and a half and I wouldn't wish it on anyone - the worst time for me was probably pre diagnosis (the summer of 2010 was the worst summer of my life - all my friends going to parties and celebrating the end of their GCSE's when I was stuck indoors most of the time. Or watching from the side lines). I seriously was misunderstood and considered to have a negative or lazy attitude. My parents also thought it was an anxiety problem. (I am happy enough to realise I am a pretty anxious person - but I knew this was different and knew my body well enough to realise something wasn't right).

No one believed I was ill and then when I was diagnosed my parents soon changed their tune. I know though, that diagnosis or not - it's still never easy to get people to understand. They seem to put on a lot of pressure on me to do well even though sometimes I feel too ill. I'm 18 too (last July) and it's not easy trying to lead a normal life, I am trying though. It doesn't appear that many people are age suffer with illness - we are about though, you just have to look hard enough - it's sad that it happens, but it helps to be there for one another.

And we have to believe things will get easier don't we? There are ways of managing it; everyone's different, we just have to find things which work for us - get to know our bodies (I know it's sounds depressing talking like this, at our age we shouldn't have to be so cautious - speaking of which - have you heard of the spoon analogy? It might be a starting point of explaining it to your parents. Let me find it for you:

Hope this helps.

I believe there are different stages we go through with the condition and there will be someup times and down times. You certainly get a lot of insight into friendships; you will know with more certainty who your real friends are, and make new friendships with people who really understand. We are all here for one another, even if we are from all different areas.

I have found lots of things which help/aggrevate all my symptoms - so if you ever feel like chatting some time - I would be more than happy to share my advice with you. :) Or even if you fancy just a chat. :)

Gentle Hugs (((( ))))


wallflower_fairy profile image

Sorry for the length and the way this is written - tend to waffle :) xx

wallflower_fairy profile image

Maybe my choice of words wasn't great either. When I say 'never easy' I just mean sometimes it can be hard - but there IS more understanding out there than before.

I just want to say sorry if anything in here sounds negative - I was trying to sympathesise but am now worrying that my post is coming across as clinical or even depressing (told you I was anxious didn't it I?) And that's the last thing I could want. :) It DOES get easier. It did for me. :) The best thing you can be is positive: when I WAS finally diagnosed it was like a weight had been lifted - and I thought myself - ok, so I have this condition - what can I do to make to make it better?

And I did. :) I've had a really stressful few months which is probably why it's showing more lately - as stress causes flare ups. But I am starting to get the better of it now and I believe I have started to make progress. Generally I am a positive person even through the tough times. That's not to say I haven't 'vented' on here like mad - but my usual pattern is always to have a positive after a negative, and to try and remain mainly positive.

Just please don't do what I did a few months into when I started feeling better: forget you have Fibro and sit on FB till one in the morning! :O

You can lead a normal life with Fibro :) but please remember to be careful

Ok - I feel better now.

Gentle Hugs (and I apologise in advance for your getting 3 emails saying 'wanderingwallflower left a comment on your blog' I tend to do this a lot) xxxx

CharlotteMck profile image

Hey Emma,

You've just inspired me to join this site after reading your blog.

I'm in the exact same situation as you, I'm only 18 and recently

diagnosed with Fibro too, I'm at my wits end at the moment I've

been noticing changes for the worse already such as more frequent

headaches and also twitches in my arms and legs when the pain is so bad

I've also recently started a new job working in a nursery which I love

but i was diagnosed with fibro halfway throught working there, they don't

Quite understand what it's like and how much pain I'm in all the time.

It's so difficult I don't quite know what to do with myself half the time,

I end up going to bed with a hot water bottle every night, and taking so many,

tbalets a day which I don't like doing! I agree with you that one of the worst things,

Is not knowing how bad it's going to get and what your able to do in life.

Take care, and sorry for blabbering on!!

Charlotte xx

Smudge91 profile image

Hi Emma,

I know exactly how you feel I’m 21 and was diagnosed last year but they have said that I have been living with it for a very long time and they have only just added two and two together. This might not be what you want to hear but it really is a blessing that you have been diagnosed very early as you can work closely with your doctor to find which medication works for you; you can have a very good lease of life. One thing I found was that my social life became non-existent because I was pushing myself so hard at work and trying not to appear 'weak' that all my own time was spent in bed or rattling due to so many pills and I found my friends even my very close ones didnt understand or just didn’t care so I have now found who are my TRUE friends and who aren’t. I am currently very well at the moment (fingers crossed will last more than a few days). What I find hard is finding people my own sort of age to talk to about issues such as, not being able to wear my lovely high heel shoes any more :( ect - Hope you are having a good day - Gentle hugs xxoxox

secretldy profile image

hi emma

sorry to hear you have fibro, but the positive thing is, your not on your own when you join this forum, i don't come on the much, but i do look in and see whats happing. i was diagnosed with me about 5 years ago now, and they said that it was possible that i had it some time before my diagnosis. i was diaganosed with fms last year and i have had a lot more health problems to go with it. just remember that fms affects different people in different ways,but i have found that i match with a few the people on here. i recently got transferred from work related esa to support esa. which has helped as it has taken a lot of my mind.

Try not to stress, as stress can make it a bit worse. i have decided that i'm not going to get stressed. easier said then

hope you make friends on the forum.and hope the doctor can help you get sorted so your noe in so much pain

trustingtiddles profile image

Hi Emma,

Like all here I am sorry to hear that you have been diagnosed with Fibro at such a young age. I have been diagnosed since July 2011 and have been lucky enough to have found a fabulous GP and Rheumatologist to help me work out the best meds and treatments for me. I also have a 21 year old neice who has suffered with Fibro and ME since she was 15. Its been a real struggle for her for years trying to find the energy to attend school, college and take exams. She is now in her second year of Uni living away from home and thankfully showing me that we can keep going with the help of family , friends and the medical proffesion along with good old determination.

I really hope that you find peace with this condition and get the help and support needed to keep going. Like all the others on here we are here for you when you need us. Take care

Jacqui x

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