This is my first post here so apologies if I manage to mess it up! I've been having a flare up for the past few days, to the extent where I haven't been able to look at my phone due to light sensitivity (even now I'm wearing sunglasses and it's on the darkest setting) and I've just been far too exhausted and in too much pain to move much at all.
I've had fibro for around 5 years now and I'm 18 years old, which I know is quite young to have it. I've been thinking a lot about the lack of awareness and prejudice I've encountered so far and it's got me really down about my future. I'm meant to be going to uni in September (depending on the covid situation) and I can't help but imagine how dreadful it will be if/when I have a flare up like this.
I've been very lucky with my schooling so far - my school has been, for the most part, super helpful. Even though they don't understand it, it's recognised I'm in pain and I can leave lessons etc whenever I need to (which is often), etc.
So anyway, university feels a lot more daunting and obviously is far bigger than my school, so I'm worried I won't get any support. I've got one close friend who is (hopefully) going to the same uni as me so it's mainly the staff (and other students) I'm concerned about. Since I don't have any experience, I can't tell if I'm overreacting, but when I think about even just sitting in lectures it sounds dreadful--I can't sit down for longer than 30 mins, an hour on a good day, so I don't know how to get through that, let alone other uni stuff. Also, I'm considering applying for DSA - does anyone have any experience with it?
Also does anyone have experience being young and having chronic pain/fatigue, or perhaps could someone older and wiser offer advice? I'm glad not too many young people have to deal with fibro because I know how debilitating it is, but at the same time I feel utterly alone at times.
Thanks to anyone who took the time to read this, sorry it's so long any advice or own experiences would be really appreciated.
Lots of love, Chloe x
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sorry to hear your having such a bad time . I think you might also have M E . myalgic encephalomyelitis a condition some doctors mix up with F M . the sensitivity to light plus your inability to sit comfortably for any length of time are common in m e you could compare your symptoms with those of m e at the science for m e website if you notice your symptoms get worse the day after you have been doing anything that goes beyond your energy limits this would be a good indicator of an m e diagnosis . as for university you can ask for accommodations to help facilitate your further education you may need to contact your chosen uni in advance to discuss how debilitating your condition is .
Oh yes, I completely forgot about M.E! I don't think I'm officially diagnosed with it but CFS/ME has been mentioned a lot to me from doctors- you're right about the symptoms (thanks for the link), they certainly seem to match up with what I experience. Thanks for the reminder- hopefully once covid dies down I'll be able to return to the doctors and I'll investigate an M.E diagnosis.
Hi chloe I’m sorry for your diagnosis. There will be support for you at your uni. FM is recognised under the Equality Act and it is a legal requirement for them to provide support to those in need. Google support services for your university. You will be surprised how much help you will get. I wish you well in your future studies. We must not let our condition define us x
Yeah, the general impression I'm getting is that I ought to contact my uni for support- I should probably also do some proper reading on what I'm legally allowed to claim to support my education. Thanks for the encouragement, I hope you're doing well
Hi Chloe I’m so sad to read your post I’m 65 and was diagnosed in my 30’s with fibromyalgia the light sensitivity I also have it’s a very debilitating disease, but take heart hun you have to manage it not let it define you. A little at a time creep out of your flare, the more you learn about it the more understanding helps. It’s a case of pushing yourself a little but also be kind to yourself, don’t beat yourself up this disease has ups and downs as you go through life, remember when you are at the bottom there is a way back up to a point it’s manageable. Accepting it is half the battle, then learning to listen to your body when it’s warning you, give it time to rest, this will help you not to go down in the depths so far and then come back up easier. The other rule I have lived by is use it or lose it, so push myself to get up and always do a little and avoid stress as much as you can as FM thrives on it. Finally I wish you well and remember it takes time to learn ways to managing it. Also make sure you have a dr that understands you and fm and is giving you the help you need. Best wishes for the future and remember you have a life live it! X
Thank you for your long reply, I really appreciate it- I'm really sorry that you've had fibro for such a long time but at the same time I find it comforting to hear that you've made it through thirty years or so, it gives me hope for my future I'm impressed with your attitude and I hope it's something I'll also be able to have with time. I think I've finally accepted my diagnosis, but I'm certainly not good at being kind to myself.
I unfortunately am not comfortable with my GP at all, I've requested to change several times but nothing has been done, but I'm hoping once I move to my uni I'll be able to get a new GP.
As for creeping out of my flare I find that a really nice phrase and I'm taking your suggestion and building up slowly. Sometimes my fibro just flares up even when I'm not over-doing it, but there's nothing I can do about that so I'll do my best to build my way up- it'll be a long journey I'm sure but now seems a good time to start.
Hi Chloe. I have worked at a university for the last 19 years in an administrative role. My advice to you would be to make sure that you inform the Disabilities team as far in advance as possible of your condition and how it can affect you. They are used to helping people with all sorts of conditions students suffer from and will be able to help and advise you.
Thank you for your response, it's really reassuring to hear from someone with so much experience (more experience working at a uni than I've been alive, wow!). Would it be sensible to inform the disabilities team before I even get my A level results, do you think? Because of my cancelled exams I'm not 100% sure I'll get in, but if I wait until August I'll only have a month before uni starts, assuming it starts as normal. Since covid is complicating things as well I'm a little unsure when I should contact the disabilities/learning support team.
Hi. It's best to wait until you know which uni you'll be going. Don't worry about there being only a month from your results to the start of the course uni staff are used to dealing with whatever comes their way durinb this period x
Hi Chloe and a warm welcome to our community. Here you will find information, support, friendship and laughter too. You will find more general information on fibromyalgia at our website fmauk.org
You can order a copy of our young person's booklet and other resources at fmauk.org/resources
Your uni should have a student support/disability support who will be able to help you - I would suggest getting in touch with them just now so any support needed can be in place for you starting .
Thanks for the welcome, I've been snooping around on this forum for a while now but it's nice to be an active member I've had a look at the link and it looks like there's lots of useful information there. I'm quite nervous to get in touch with my uni but since so many people have suggested it I agree that it would be a good idea so that I have support once I start. I hope everything is going well for you x
Some unis will have better support services than others - but it's definitely worth having a chat with them to see what they can do to help you
I know when my daughter was in college, she had her own, memory foam chair instead of basic class chairs, she also had a scribe/recorder for recording classes and taking notes, extra time for assessments etc
A feel your pain the thought of living like this especially in a v bad flare up can be overwhelming deppressing very very very deppressing.i hold it all in then every now and again it gets to much and ill sort of cry a wish a cld have a good cry sometomes.but my life and everything thats happened over the years has left me pretty emotionless sad but true boxes within boxes in my brain.be strong push on enjoy your good days and try and just roll with the bad.life is amazing a gift to us all.you will eventually learn how your body works with fibro and flare ups ect.and it makes it easier.chin up and push on.hope your ok.if it gets to much see if you can get some CBT sessions might help.helped me a few times over the years.and avoid the persistant pain group if offered to you as i found it highly deppressing as every one there was much older and i just thought wow a shldnnt be here at my age when. I went on the course all the best 👍
Thank you for your solidarity, I agree that flare ups are so so depressing, I often find myself turning to my friends but of course it's sometimes tricky for them to comprehend the level of pain I'm in, so it's comforting to hear from someone that understands. Still, I'm very sorry that you also have a hard time, especially with the emotional aspects of the condition, which I feel is often overlooked.
Your attitude towards life is really uplifting, so thank you for your kind words I've never tried CBT but I've studied a little psychology and have a rough grasp on the concepts, but knowing it's an option is always a comfort and I'm glad you've found it helpful.
A few years ago I was invited to a pain group and I did actually join it. It seems so silly that they'd ask you to join despite the disparity in your age and it's such a shame that it didn't help you. I was lucky because the pain group I joined was just for young people, so for a while I got to spend time with other people my age with chronic pain. It was really good fun (especially the yoga class) but it ultimately got cut due to funding I'd love to find a group like that again- this forum is really useful in that respect.
Sorry for this long reply, wishing you all the best as well x
Cool you sound like youve got a good heed ont shoulders ha.push push push.with the obvious none pushing in bad times.wont beat me yet.a will not stop till i work a combo of vitamins amino acids protein.mixed with a healthy diet. Am going to work somthing out ten plus year sufferer but a still push.and want an answer!!!! Most crucial physical injury mental emotional overload all together to me yes 100% brought mine on am learning to live with it now.been a battle christ.this groups a god send.thanks to all who contribute
Hello there, I would speak to your doctor for perhaps a written letter you can take to the university and also surgeries normally print out information on fibro, my heart goes out to you as my daughters best friend was always off school with fibro going back 20 years, I had not heard anything much about the condition, little did I know it would happen to me in my fifties, my daughter has it mild , try and pace yourself as much as possible and learn to say no to others if you do not feel up to socializing after studying, a good friend (or friends will get that) xx
I think you're right- it seems I'll likely need a recent written letter to claim DSA- I'm really not happy with my GP but once covid dies down a little I'll have to return and get that letter. Wow, I can't imagine the stress of being diagnosed with fibro twenty years ago, I feel lucky for the resources I have now. I hope you and your daughter are managing well
To be honest I'm a little unsure about how to approach friendships in uni because most of my friends have known me pre-diagnosis so I never had to bring up fibro with them. Do you think it's something I should tell people about soon after meeting them? There's still so much misinformation about it, I don't want to scare them away. But then again, it's an important part of my life/identity, and if they can't understand it, perhaps they aren't the people for me, haha. Alternatively, I could just wait for a natural time to tell people about it, but I'm not sure if such an opportunity will arise.
Thanks for your reply, it's given me a lot to think about x
Evening, like you say there might be a time in a conversation when that opportunity comes up to bring it into the chat and it feels more natural that way, somebody might be talking about a friend or family member with a condition or illness and you could say while we on this subject of conditions I’ve been diagnosed with fibromaylia have you heard about it ? and if they say no not really you can say well this is what can happen on some day s and how it can effect you, anybody worth having as a friend will understand and any that dosent close the door. There will be days that go okay and you’ll look back and think oh that wasn’t too bad ,then will be days you will feel not so good and that’s okay too. I always say I feel like I’m on a rollercoaster ride if you get what I mean (the ups and downs) I’ve had a bumpy week again but it’s the people around me (close friends, my little grandboys, friends send me txt s the , boys FaceTime me and their the people that have my back and keep me smiling through it all xxxx
I have been in chronic pain since I was 5. I have chronic migraines, IBS, Fibro, Insomnia, Depression/anxiety amongst other things. I was at boarding school when things got bad, I got punished a lot because they didn't believe me. I was in dormitory with more than 20 beds in it until I was 17, it was hell. It left a few scars hence the anxiety....
Obviously life has not been a picnic. I am not a strong person, and I have had more than one nervous breakdown purely because of the never ending pain. I did got to Uni, I studied Fine Art, I was 5.5 stone when I graduated and had to drop out for year to try and get myself together enough to get over the finish line but I did graduate.
Anyway the point to all this depressing stuff I'm telling you about is that life can get better, fibro can go into retreat. You can do many things even with all these conditions, that I have at least. I've been to pain groups etc joined some buddhists too to try an achieve some level of acceptance, didn't think it helped much at the time but later I realised it had. I've just come out of a 6 day migraine as it happens eerg but still I was told by doctors I shouldn't have children because I'd be too tired, I've got a 2 year old and a 5 year old. It is tiring, but I'm tired anyway so I might as well have a family. Before Covid I was doing 5 HIT classes a week, and 6 hours of kung fu a week. I run a house ( sort of ), look after two kids and I have a studio and I still produce art, I go scuba diving every summer if we can afford it. I have lots of bad days, lots of crying, I don't have a lot things other people have. Couldn't manage the career, have a smaller social life than I would want because I don't have the energy to do all the social up keep required. But I do have a lot more hope than I used to have, and I'm not suicidal anymore. I feel I have found a way to live.
The most important thing I would say that I have learnt about 'our' kind of existence is that time spent asking "why me" is total a waist of energy even if it is unavoidable from time to time. I would say time trying to get others to really understand what you are going through is also a waist of energy, they will never know, not really, don't try and get people to forgive you for your inability to be like everyone else, they rarely do. Instead focus on what you can do and if you are dealing with other people as we all have too try and show them that side of yourself and rest then when you can. It's all about priorities, people like us have to be more choosey about what we really want and do our best to forget the rest exists.
Hi Chloe, I have fibromyalgia and am 24. I was diagnosed last year but it has been going on for much longer than that, probably since I was about 19/20. I know how difficult it can be. I think uni is something you need to think carefully about. For me, it was the best years of my life and I would have regretted not going. But you need to think about your long term goals (aside from health problems). For example, will a degree get you your dream job, or is it something that you don’t really need to do to get to be where you want career wise. It’s a very personal decision and you need to consider all the options and what’s best for you. You don’t want to look back in 20 years and wish you had done something different (whether that’s going, or not going). It ultimately needs to be your decision. I wish you all the best and hope you can find support and a way to manage your condition.
I’m a youngish one so hope I can help a little bit.
I’m 26 but I don’t really know anyone with fibromyalgia either so it can feel lonely, I have supportive friends but it’s hard having to give the reasons you can’t make plans all the time etc.
Have you noticed what can trigger your flare ups?
I made a diary for a few weeks so I could work our what was causing mine so now I can manage things better to avoid them, I can understand you’re worried about sitting in lectures for a long period of time but what about contacting the uni and explaining your situation and seeing what help they are willing to offer to chronic illness sufferers like yourself.
I imagine there will even be similar people to you there before that may of needed to reach out for extra support.
It can be really daunting dealing with this kind of illness when you’re young. I struggled to come to grips with it when I got diagnosed, I felt like my body had given up on me already. But with the right medicine, daily baths to loosen up, adapting your bedding/pillows even helps me with the morning stiffness etc. And just regular excersise and a good diet, there are foods that can trigger flares I didn’t know this at the start now I’ve adapted to foods that agree with me I’m much better than I was.
There’s hope darling, don’t let something that is potentially manageable get in the way of your ambitions and a bright future x
Hi Chloe_x If you have decided you want to go to Uni, and you get a place, then I would be thinking about living in the moment and enjoying every moment.
Like the others say, tell the Authorities what your problems are and let them worry over it because it will be someones job to do that. In other words let them use their experience to help you.
Then, when you get there, you go about your Uni life with all the help and advice you have asked for, and get enjoying this great opportunity.
You will find sometimes, you feel great, like a normal person. You may find other times, you really don't. At the times you don't feel physically good, are you also fighting against the flow of life? As a Fibro, fighting against that flow will tire you quickly. It's your cue to look at why you are fighting instead of enjoying your life and going with what brings you joy and ease.
You don't want to be going to learn to go against what your heart desires. If you have to screw yourself to be something you are not, to fit in with Uni, or any other thing, you are likely looking for your life in the wrong place.
You were born with a set of unique gifts. Should should be able to use them without causing yourself pain.
Relax into life. There are others who can help you. Go have the best, most wonderful time. Listen to your heart and your body, and if it is saying no, ask where the yes will take you.
You can live a life that excites you and brings you joy. You should do. Choosing your life, fearful of pain, is likely to bring a life of more pain. When you imagine bringing your future to you, can you be happy in your now and imagine more happiness in your future?
The problem with pain, is we fear it and want it gone. Can you imagine coping curiously, starting to understand what the pain is? Is it telling you something? Trying to guide you maybe? Can you imagine coping well and joyfully with it and anticipating a future where that same wonderful feeling of joy is present?
The problem with anxiety, is we fear it and want it gone. Can you imagine being joyful with it? Maybe saying 'Goodness this is an exciting feeling. Kinda like the old roller-coaster but without the queuing and having to pay for the experience?' Can you imagine laughing putting your hands in the air and shouting Wheeee! as the anxiety moves through you? Then saying Wow, interesting feeling. Wonder what fun stuff is next? A cup of tea maybe?
I think a lot of times we do stuff because it is expected, not because the drive to do it comes from our inner being. Then we get cross with ourselves that we are having to drive ourselves to keep up with others. Others who may well have chosen their lives from their inner being. Others who are going with the flow of their lives.
Shoulda woulda coulda. Made a life that we truly desired.
You are young. Make sure in every moment you are surrounding yourself with a feeling of joy. Inside and hopefully outside too. Go with your flow. Go where your heart means for you to go. Don't follow the well trodden path, the herd, others expectations, and then expect to be well and happy. Own who you are now. Own your desires. Desire to be happy and joyful in every now.
Find joy in washing up. In looking after yourself. In the little things life requires of you, to look after your human body. Then once your body is cared for, find joy in taking it out and living the best life. Don't worry about specifics, you can make that up as you go along. Trust your intuition to build the life you want.
If you wont go for your dreams and be joyful, there really is a world of pain and anxiety ready and waiting to eat you up.
You don't have to do as others expect. You don't have to try to make others happy. (You do have to be happy yourself, to be well) Your life should be all about you. Let others join you for when they want to go your way. Be a good friend but don't compromise your dreams for others. They will never thank you for it.
I hope you get the life your dream of. Dream well.
Many fibros get dragged down by life. 'I have to do this, others expect that. I can't be selfish and do what I want.' They deny their dreams often because they are trying to be kind and help others. But also they may fear letting others down and taking risks. They fear fear. They fear pain. They fear anxiety. As life gathers momentum, life gets too much about obligation and if we are not careful, joy disappears.
How many times do you hear people say, I want to help others? Not, I want to be happy and if that makes other peoples lives better too then I'm gonna be really really happy.
Think about being happy. Joyful. Imagine how that feels. And look to keep that feeling. That is how we are meant to be.
I am a lot older than you but went back to Uni in 2016 to do a Masters. I got all my letters together from my GP and from the Rheumatologist who diagnosed me. I applied for DSA which took a while to come through. The DSA person who interviewed me was very helpful in letting me know what kind of things might help my Fibromyalgia and asked me to think about other things that might help too.
I was given a standing desk for home which meant I didn't have to sit for too long or stand for too long; a laptop (which I had to pay £100 towards), the laptop came with an all-in-one printer, headset and software so I didn't need to type but spoke into the headset, I also got an adaptable office chair (wasn't any good for me as it was huge, lol), footrest, something to put my papers on, laptop holder, ergonomic mouse and recording hardware for lectures, etc.
I also got one-to-one support whom I met with once a week and was supported throughout the course.
There is a lot of support out there for disabled students. You have to think about what is easiest for you to help you get through it.
I had difficulty sitting through lectures so I would get up and stand for a bit until I had to sit down again (here's where the voice recorder came in handy, plus I had carpal tunnel). If I couldn't get to a lecture from not being able to get up physically, I was able to email the tutor and ask for them to send their powerpoint notes to me via email and I was also able to ask another student for their notes to be sure I didn't miss anything.
I suggest you check the university's website (if you know which one you'd be going to) and check out what they offer in terms of supporting disabled students. Make a list of anything you think you might need to support you, from equipment to counselling and additional short courses to help with studying better and more efficiently, etc.
You should be able to get the support for the length of your study so that shouldn't be a problem.
In terms of friendships, I am not the most outgoing of people but found so many good friends by simply going up to people and saying hello and asking about them, which was easier in the introductory week. I didn't tell many people about my Fibromyalgia except my closest friend and my personal tutor as I didn't want it to be a big deal but people would still ask me if I was okay because you can't always hide how much pain you're in.
Hi Chloe. I was diagnosed at 29, which was also when I started uni. I did my first two years over four years (kind of half a year at a time) so that I didn’t overload to much, and then I had to do the final year full time which was awful at times but I coped. There were tears, but I did it and I’m just so thankful that I did. I was allowed a special chair to sit in, I could walk when I needed, they supplied me with a laptop for classes (but now we all have phones you can photograph a lot of what you need). I was allowed a computer for exams and extra time when I needed it. Some days I just couldn’t even go to class but most days I managed. I made use of the campus counseling and took it one day, or assignment at a time. I’m now 47 and would never have believed at 29 that I would not only finish my degree, but have a career doing what I love, and then go back for a post grad certificate while working (don’t do that, it sucked lol).
You can do it, one day at a time. I used to worry so much about what I wouldn’t be able to do, and it did take a few years to adjust to focusing on what I am able to do. I still worry, we all do, but the best thing you can do is try. If it’s too much then make another plan, but you’ll never actually know unless you take the step. Don’t let this stupid illness take away your hopes and education, you are in control of your perseverance.
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I'm glad not too many young people have to deal with fibro because I know how debilitating it is, but at the same time I feel utterly alone at times. 
However picking up what you've wrote your certainly not gonna let this get in your way xx
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Sorry, I need a rant.........
