uni+arthritis

skinnylizzie

Hi!
I'm new to the site, and I'm 26 and have been diagnosed with inflammatory arthritis...not sure which type yet, but am being treated with hydroxchloroquine and etoricoxib. The rheumy wants to put me on methotrexate, but after reading all the posts about the side effects I'm a little nervous!
I just wondered if there was anyone out there who is also struggling with uni? I'm in my 2nd year of a BA English Language and Media degree, and haven't been to class for nearly two months now due to the unbearable fatigue and pain...and I'm in contact with the disability team who are hopefully going to help me to 'adjust' the pathway to allow me to continue but with less contact time, maybe by extending by a semester.
How do other people cope with uni+pain+fatigue? I'd be grateful for any tips!!
Thanks!

tjt6768

Hi hun, sorry I just spotted this.. Can't help on the Uni side of things but just wanted to welcome you to the site.. I am quite sure there are some on here at Uni, hopefully someone a bit more helpful will be along at some point...

Be well... You'll be glad you joined, there is lots of advice to be had/shared etc.. Fn to be had on the chit chat section too, it's not all about the arthur!

valval

sorry can not help but wanted you to know we are here it sounds like uni sorting and do you think you should give meds a chance you might find they suit u something needs to be done what you are on not working think about it talk it over with doc good luck val

Lisaa

Hi Im Lisa and im 19

With regard to the methotrexate side of things i wouldnt worry about it, i know everyone is different and some things wont help one person but do wonders for another. However, i was diagnosed last summer and was put on methotrexate. It has totally given me back my freedom and massively improoved my life. I was at the point where i couldnt dress myself, wash my hair, and the pain was so unbareable that my mum would have to come give me my tablets in the morning, then i would wait for them to work before i could consider getting out of bed.

Its hard to ajust to being on it, especially if your used to going out and drinking, i have to say im not so good with that side of it. But i am back to being able to lead a relativly "normal" life again, and have a job.

Unfortunatly the college i was at were not as understanding as your uni seems to be and i ended up having to leave, although i feel that i would now be able to go back to education and have applyed to universitys again this year.

Good luck and let us know how you get on
Lisa x

stlucia

Hey, methotrexate was the thing that got me through uni. I found then that it was totally brilliant!

julie47

Morning skinnylizzie

Can't help you with the uni side of things but it does sound as though they are trying to make things easier for you.
Methotrexate.....I have been on it for a few years now and it has helped to keep arthur under reasonable control .

Good luck
and take care
Juliepf x

tkachev

Welcome Lizzie

You have done the right thing in contacting the Uni disability team. Hopefully they will help you make the best decisions regarding your education and make allowances for your condition or make changes to your accomodation as required.

Methotrexate has helped me in the past. If you get any nausea then ask for anti-sickness pills or methotrexate by injection don't just put up with any side effects. Overall it should really help with your pain a lot. Try not to delay too long, like me, as I suffered longer than I shoud have.

Let us know how you get on and best of luck with Uni. Hope you can start to feel better soon. Are you on any medication at the moment.

Elizabeth

piratequeen

[/color]Hi Lizzie,
I'm 23 finished university two years ago. Like you, I found it difficult with fatigue and pain and also with starting new medication. When I first started I was just starting Sulpha and ended up off uni for about a month because I was constantly being sick. Second year I struggled with MXT. Then in my final year I ended up having about 5 months off due to gall stones and eventual removal of my gallbladder (not related to RA I know but still off ill)
My university were really supportive, at the end of the day you are paying for your education and tutors etc will help you. Though sometimes you have to ask. Not only were my disability officers a great support but so was my personal tutor and head of department. I think so long as they know you are genuinally struggling they will do what they can to help. Many a time I spent crying in my personal tutors office due to pain, fatigue and stress.
Things that were offered to me (and apologies if you already have discussed these or got them)
Disability student grant, got me my laptop, printer, comfortable chair, voice recognition technology, dictaphone, refunds on all books (so long as they were on recommended reading list, or recommended by a tutor), refunds on all photocopying, ink cartridges etc That helped me not to have to keep travelling backwards and forwards to the library.
Extensions on pieces of work- that let me pace myself a bit better thus reducing fatigue
Extensions in exams plus access to write them on a computer as my hands get tired easily
I was for a short time given access to a note taker for me in lectures, but found that I preferred a dictaphone and then transcribing them myself at my own pace at home
Access to lecture slides before the lecture so I could make some notes, etc beforehand
Finally when things got really bad at one point we talked about deferring the year, wasn't really an option I explored but it is there. Perhaps worth taking a break to see if the MTX makes any improvement on your symptoms.
Also I was granted special consideration on some pieces of work/exams I had done, in that they were marked slightly more leniatly/ not capped due to late hand in. However does often need written evidence from either your tutor or doctor.
One last thing, have a word with your lecturers (or get head of department) to do it for you. I founf them all really responsive and helpful. Lecturers want to help you learn, and they really respond well to someone who wants to learn. They were more than willing to meet up with me outside of lectures to go over things I needed help with either due to absence or simple RA brain fog.

Sorry for the massive post, hope some of it has been useful. Best thing to do is chat with your disability team and personal tutor. See what help is available for you.

Best Wishes

skinnylizzie

Thank you so much to everyone for their kind posts! It seems like everyone is so supportive on here!

tillytop

Hi skinnylizzie (love the name ) and welcome from me too.

So sorry you are struggling so much at the moment and feeling so very rough but I am glad that you are getting support from uni which will hopefully allow you to continue.

Re the methotrexate - I know it's scary but I would say "go for it" because I reckon it's got to be worth a try if it can make you feel better than you do at the moment. I am on my "second go" at methotrexate although it's currently not enough on it's own it certainly helps and I know that, RA wise I am better with it than without it. New meds are always scary, particularly when you are new to the arthritis malarky but, over the years, I have found it helpful to think of starting a new drug as a "trial period" to see how it goes, if it helps and how I cope with it. I don't necessarily tell the consultant I am thinking that way, but it just helps me to feel more in control of things. And for you it is early days and if meth turns out not to be right for you, then there are lots of other things out there.

Glad you have found us and please do continue to post and we will do our best to support and offer helpful advice!

Thinking of you.

Tilly xxx

meanyjarReA

I am currently at college and have applied for Uni. I started taking meth recently and have been put up to 20mg and then was hit with fatigue. Without the meth the arthur would continue to affect new joints as it pleased and also would hurt me a hell of a lot more. My body will adjust eventually to the new dosage and I am sure the fatigue won't be quite as bad. I have changed my diet to help combat the fatigue and am going to change the day I take it as the fatigue only lasts for two days after. I will speak to the rheumy nurse about possibly skipping one week when I have exams.
Sounds like you already have a lot of fatigue anyway with the pain so I would suggest that the sooner you start taking the meth, the sooner your body would get better and the sooner your body will adjust and stop making you feel so tired! The arthritis will persist without taking it. I would also suggest eating very healthily as that will lessen the fatigue anyway but because your immune system won't be as strong you may get lots of pesky little illnesses like sore throats etc.
It sounds worse than what it is but given the choice between arthritis or meth side effects I would take side effects any day!!!

rissfish

Hi Lizzie,

I'm 25 and was diagnosed with RA last year. While I finished uni quite a few years ago, I am a journo so high fives to the English/media degree!

While I can't relate to being at uni still and starting all these crazy drugs, I can certainly relate to be incredibly busy, writing a lot (as a news and features reporter) and coping with the methotrexate and a host of other drugs. I'm sure though that any university will be very receptive and helpful with your condition and give you the space and time you need to fit in all your assessment around being tired and the like.

I'm a bit of a crazy workaholic though, and never (well maybe one or two days) took time off even through the worst part when I was first diagnosed and I cried through the pain washing hair/brushing teeth/getting on the tube every single morning. Tough times but all my meds are doing the trick now so I'm very lucky!

All the best and let us know how you get on with your diagnosis and your studies.

Marissa

woodbon

Hi, Good luck with your studies, don't give up or get too depressed. I have worked at 2 different University's and seen people with disabilities manage with help from the uni and their peer group. Let your friends know and the tutors and I'm sure things will work for you. Take care, love Sue xxx