Fibromyalgia

Hi guys,

Basically I'm just looking for some advice. I was (finally) diagnosed yesterday with joint hypermobility syndrome and fibromyalgia after many years of joint and muscle pain and extreme fatigue.

I am in third year studying French, and while on the whole I wouldn't consider myself disabled or severely affected, my condition has worsened in the last year and has affected my uni work. I have days where it is simply near on impossible to physically get myself out of bed let alone face the 40 minute drive to uni, attend lectures, concentrate in lectures and take notes etc. Some days I have no hope of concentrating on seminar prep or essay writing. Other days, I can do all of these things no bother. Should I declare to the uni that I have been diagnosed? I really just want their support in knowing that I won't get hassled if I miss lectures/seminars, and that I could ask for assignment extensions if necessary (I've only missed a deadline once, and wouldn't want to use my condition to these ends). Would they agree to this?

The other thing I've seen a lot of talk on here is about DSA. Can anyone explain if I would be eligible for any support. The only thing that would really help me would be a voice recorder as note taking can be physically tiring for me. I also can't carry heavy books around due to muscle pain so money for print cartidges/photocopying would be helpful. Would I be likely to get a notebook computer to use in the library so I didn't have to take books home? You can NEVER find a free computer in the library and my laptop is too heavy.

I'm reluctant to ask for too much as I really don't see myself as disabled, but some things would make my life easier. I start a Speech and Language Therapy degree in Sept which is going to be real intense, so I'd like to have some support strategies in place.

Thanks! (Sorry for the length of this post!)

Reply 1

Tiger Rag

You say you're in your third year - is that your final year? Because you may end up having to borrow stuff on loan if that's the case.

Reply 2

Rhonaa

Original post by OU Student

You say you're in your third year - is that your final year? Because you may end up having to borrow stuff on loan if that's the case.

Yeah it's my final year, but I start another undergrad in September. Would I have to go through the whole process again?

Reply 3

sosotalk

Original post by Rhonaa

I'm not going to be much help as I'm not actually in university yet (Hopefully this September) I also have fibromyalgia so I was wondering how you cope with the hours etc.

Personally, I declared that I have fibromyalgia and CFS as I know I'll be unable to do certain things e.g. carry heavy items, walk long distances and I wanted the university to be aware of it. I guess it all comes down to personal choice in the end.

Reply 4

Tiger Rag

Original post by Rhonaa

Yeah it's my final year, but I start another undergrad in September. Would I have to go through the whole process again?

I've done (not completed) two different courses. Unless your needs have changed or the nature of the course is completely different, (I did computing and am now doing computing and maths; so no change really) then you may not need to be assessed again.

Reply 5

Rhonaa

Original post by sosotalk

I'm not going to be much help as I'm not actually in university yet (Hopefully this September) I also have fibromyalgia so I was wondering how you cope with the hours etc.

Firstly, good luck with your uni application!
I think the major difference between my uni experience and yours will be that you have a diagnosis. I'm halfway through third year and have just got my diagnosis, so you will have help in place (hopefully!) that I didn't. What course are you applying for? Some have more contact hours than others. I'm generally in around 11 hours a week and for the most part the hours themselves are ok because they're spread out across 5 days so it's not too much. I think the key is managing your time well, make sure that you don't leave coursework/essays etc until the last minute, because that last minute could be a day when you're having a bad day! If you've declared your condition to the uni, they should be quite flexible with attendance and extending deadlines, which wasn't a luxury I had and added to the stress! Revise continually throughout the year so that your stress levels don't get too high at exam time, causing you to have a flare up. Because I didn't have a diagnosis, I just left stuff to the last minute, and always paid for it because the stress made me worse! The only times I really struggled was on teaching placement as I was in school 9-4, five days a week and I ended up really ill!
Are you planning on going into halls? I'd think seriously about this, can you ask for a quiet hall? Halls are really noisy, and as you know quality of sleep is really important in managing fibromyalgia, and my time living with others definitely didn't help!
My main problem in my time at uni has been socialising, rather than actually managing the academic work. There's just no way I could ever keep up with some of my friends who go out drinking and then get up for a 9am lecture - it's just not possible for me! So I do feel that I missed out a bit on that, and it sort of marked me out a bit as I would have to turn down nights out because I was tired. I did still make friends, but I missed so many nights out that I did feel a bit on the outside. You could try to make the effort to join societies or something. That way you could socialise at meetings etc, without it being a full on night out.
On the whole, FM has definitely affected my uni experience, but don't forget that I was undiagnosed and it was going untreated, so you have a headstart there! Academics wise, if you're managing Alevels/Highers at the moment, you'll probably find first year workload even lighter, giving you time to adjust to uni.
I hope that helps a bit! It's weird for me because I was living with something I didn't even know I had! Do you have any tips for living with FM? What treatments have you had if you don't mind me asking? Did they help? x

Fibromyalgia

Quick Reply

Related discussions

Latest

Trending

Trending

Articles for you