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Getting diagnosed / trying to live with everything

BioluminescenceBioluminescence Posts: 42
edited 5. Apr 2013, 09:12 in Living with Arthritis archive
Hi, I'm new to the forum and I hope you don't mind me getting a few things off my chest.....
I'm 20, in my second year of uni in London and was diagnosed with seronegative inflammatory arthritis just before Christmas. It all started in the summer holidays just with pain in a couple of fingers, which spread to both hands. Since that time it has spread to my jaw, my elbow, my knee and possibly some parts of my feet. I was shocked how fast the pain developed until now I need a walking stick to get around and I walk slow. It feels like stairs are the bane of my life!

They've got me on sulfalazine, and vitamin D. I am taking naproxin and the stomach protector for that but I still feel in a lot of pain. Its hard to know if the pain is getting worse as you start to adapt to it. I have no idea if naproxin really does much? They have offered the steroid shot but said they don't like to give it to young people because of the side effects - do you guys think its a good idea? Do you know if I'm entitled to any help like physiotherapy, an OT or hydrotherepy or something? Are there any that people have found really useful? I'm just on the NHS at hammersmith hospital and I feel a bit disappointing they haven't really offered much support other than the basic meds.

I've applied for DSA and am trying to fill out DLA but its so long and I have no idea if people with similar problems to me get it. All the forms and practicallties start to get really stressful :C

I'm finding uni incredibly difficult now. I feel so stressed and painful I'm starting to miss some of my deadlines. I really don't want to have to drop out but its starting to look like more and more of a likelyhood as my concentration is completely off this term as things have got worse. I don't even like my course much anyway and the arthritis just makes everything so much worse. I feel so isolated at university, I don't have any close friends there and it doesn't help that my department is full of narrow stairways. I find it even harder to socialise through uni now because lots of the activities involve standing a long time or walking to various pubs around london. After a couple of hours at uni and knowing I have an hour commute home I just feel exhausted all time.
Such a long post already and I feel I've barely scratched the surface :/


  • valdevalde Posts: 271
    edited 30. Nov -1, 00:00
    Welcome Welcome to this forum. I am sorry you are feeling so low and do hope things improve for you soon. I am newly diagnosed with Rheumatoid Arthritis and am waiting for my hospital appointment with consultant to come through. I am finding this forum so helpful with the many questions that I have and I am sure it will be of help to you. Good luck and I do hope today will be better for you
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I hope we can help with information and support. I would like to answer at length but I'm afraid I can't as we're going away today for a short while so here's brief one. :wink:

    1. You've started some meds and that's a good thing. I am on sulph (it has never done anything for pain) and I used to take nap (niether did that) but some have found it beneficial. One of the earliest lessons in adjusting to this disease is learning that what works well for one person may not work for you but discovering that can take time.

    2. You may find another drug being introduced in the near future, the usual 'starter' one is methotrexate. Many of us on here take it and rarely experience any difficulties with it although it does not suit some people.

    3. I used to be able to concentrate but, thanks to pain and tiredness, it is much harder than it used to be.

    4. Arthritis is a progressive, degenerative disease but everyone's version of it is unqiue. I began sixteen years ago with one affected joint, now it's around thirty nine (with an unhealthy sprinkling of osteo arthritis thrown in for good measure). Over time you will develop your own coping strategies and learn when to plod on through and when to rest - tiredness is a huge difficulty with an auto-immune arthritis and one that others find very hard to understand. 'But you look so well!' is an oft-heard comment. :roll:

    5. Don't make any hasty decisions about university etc. You are still in the very early days of this and, as yet, are not gaining much benefit from the meds.

    Right, I have to go now but I'll be back on Monday. Take care, keep looking in although I suspect the forum will be rather quiet over Easter. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • kentishladykentishlady Posts: 834
    edited 30. Nov -1, 00:00
    Hello. Am sorry to know you are having such a touch time, especially being struck down with this wretched arthritis at such a young age. As DD has said it is a question of trying to get meds sorted out and, hopefully, helping you.

    With regard to Uni, I am sure you must find this extremely difficult and intense pain makes it hard to concentrate on anything, as most of us have found. If you do decide to abandon uni, would it be possible for you to consider an Open University degree course which you could do from home. They are very helpful and I am sure you would find it easier to cope with.

    Am sure lots of the others will be around to give you some advice soon, although weekends are much quieter on the forum so you may find you don't get many replies until into next week, but keep checking.

    Do hope things will improve for you soon.

  • 19smp5919smp59 Posts: 105
    edited 30. Nov -1, 00:00
    Sorry you are finding things so difficult but I would just like to add that a good idea would be to go to CAB with help filling in your DLA forms. I believe it is getting really hard to get DLA now, so get as much help as possible.

    Best of luck,
    Suzanne x
  • wynniewynnie Posts: 117
    edited 30. Nov -1, 00:00
    welcome ,im sorry to hear you are having all this pain and you so young and in the supposed best days of your life ,can you not get leave from uni or time off and go back to it when your meds are sorted ,hopefully they will get the right meds for you soon ,the dla is a nightmare but i would do as others suggested and go to cab they have facts they can spout to the officials in dss so i would go with them ,i hope that you get some pain relief soon and sorted with dla ,keep us all posted x
  • BioluminescenceBioluminescence Posts: 42
    edited 30. Nov -1, 00:00
    Thanks guys. Is nice to finally find a place to talk things through / get advice. :)

    I guess a lot of it is the emotional thing which is my main barrier, its also a shame I don't like my current course much because it feels like I have to put in so much extra motivation just to get out of bed and attend lectures etc. I feel the arthritis would be a lot more bearable if I looked forward to what I was doing. My counselor thinks I have moderate depression. I've been finding it very difficult to sleep properly as well, which sort of starts a vicious cycle of feeling sooooo tired! Definitely not feeling like the best days of my life! :|

    I have looked into the OU as a backup, they said I'll probably be able to transfer most of my credits. Although it might be a bit hard to fund myself like that and if I were to get a job it might all end up too stressful again. I don't really want to take time out my current course and go back. I'm living alone (well with flatmates) in London for uni. My family are in Wales and my boyfriend is in Scotland so if I left uni I wouldn't really want to go back to London I'd much rather go to and stay in Scotland instead.

    Do many of you find it ok to work / have jobs with arthritis? I am doing a bit of voluntary work for the witness service and they seemed completely fine with it.

    Suzanne: thanks, I will look into it, my mum might be able to help a bit and there and I have a disability rights book which should help. Its so easy to under-play the disease with some of the questions. For instance the questions on cooking.

    I know medication is different for everyone but I was wondering if there's anyone who after taking medication long term felt a really significant improvement so it almost felt 'cured.' My rhummy doctor gave the impression that I am unlikely to end up with deformed joints long term and there is a possibility of feeling a lot more 'normal' health wise. I would just like a realistic outlook on how effective some of the medication is.
  • StarburstStarburst Posts: 2,546
    edited 30. Nov -1, 00:00
    Hello Bioluminescence,

    Glad you found us although sorry to hear of your new diagnosis and struggles. I found myself nodding along with your post. I am 24 and was diagnosed 3 years ago. I also found very little emotional support from people in 'real life' and found the majority of my emotional support on here. So, I hope you find this place as wonderful as so many of us do. :)

    I'm not sure if you've had a google but there are lots of organisations who offer practical support on filling in DLA forms. I have a few online booklets that I found invaluable and I am happy to email/PM them to you. I'm a student social worker on placement and I work with disabled people, so I have quite a bit of info on disablity rights and useful organisations in London which I am also more than happy to share with you.

    I'm a mature student and have also found uni tough going at times. You mentioned your depression and with that, I'm sure it's making it even harder. The OU is a good route to go down and I know a few people who have left other universities, transferred to the OU and been really happy with their choices. I can relate to struggling with socialising and I felt it big time in my first year and would be so tired at the end of the day, all I could do was just about get myself home. I know it's hard but try not to put pressure on yourself with regards to socialising right now. You're newly diagnosed and going through an awful lot. When you receive DSA, you should be eligible for taxis which hopefully will make things easier. I get taxis to and from university (also have a long commute) and without them, I'm sure I would have dropped out by now.

    Sorry for rambling on, I hope you feel a little less alone and I'm more than happy to help anyway I can.

    Take care of yourself and please remember, we are always here!

    Sophie x
  • jpd61jpd61 Posts: 3
    edited 30. Nov -1, 00:00
    I don't know if this is the right place to post as I am also new! Just been diagnosed with oestoathritis in my foot. It has been painful for about a year now and its seem to be getting worse. The doc has advised paracetemol but not recommended surgery as it would restrict my movement further. I have always been fit and active walking and caravanning but this has all but curtailed walking much further than 1/2 mile before the pain becomes to much. Any advice or info would be welcome?
  • NumptydumptyNumptydumpty Posts: 6,494
    edited 30. Nov -1, 00:00
    Hi jpd61, welcome to the forum.
    You are posting on the correct forum, but if you click on "new topic," at the top of the page, and start your own thread, you'll get more replies.
    It's really quiet on here at the moment, but I think things will be back to normal tomorrow.
    I can't offer you any advice, as it's RA I have.
    Wishing you well,
  • Mat48Mat48 Posts: 1,161
    edited 30. Nov -1, 00:00
    Hello Bioluminescence. You have done a very intelligent thing finding this forum and posting here because there will be others who are your age and stage and you will find that you feel less alone with your journey - even though this disease is different for each of us.

    To respond to your question about whether there is hope of regaining normality - I will try and answer honestly and positively. I was diagnosed with RA about 18 months ago after 8 or 9 months of on and off bilateral pain and weird happenings in my joints and tendons. I was 48 when it all started but am now 50 and I take Methotrexate by injection every week and another drug called Hydroxichloraquine. I say "take" rather loosely because I'm currently experimenting with support from my GPs to find out which of my symptoms are add-ons (secondary autoimmune conditions and manifestations of RA) and which are side effects of my drugs. So I've been off the Hydroxichloraquine for four weeks and off the Methotrexate for two - almost three. I also have acceptance issues because I feel that I'm experiencing too little arthritis to warrant the medication and I keep wondering if it's all gone away.

    As it happens I'm now doubting very much that it has gone away but I can tell you that I've gone from being quite a sedentary person (a freelance artist) to doing zumba most days and yoga and walking, sometimes even running (when the mood takes and I'm on soft ground) quite long distances. So the answer to your question is that for some of us - mostly people who use these forums very infrequently - RA/ Inflammatory Arthritis is manageable with the drugs and it's important that you have something to strive for I feel.

    Regarding your studies. I had enrolled on an MLit when the RA struck me and had bursary and everything all set up. I pulled out after much thought and haven't regretted it. My concentration has been very badly affected by coming to terms with what's going on in my body and, similarly to when I was pregnant with my three children, I found that I needed to learn about what was happening to me and everything else became a bit of a distraction.

    Personally I'm not good at pacing myself - which is what everyone always talks about in relation to inflammatory arthritis - because it's systemic and doesn't just hurt, it can make you feel very ill and depressed and fatigued too. I tend to seize the day and if I pay for it the next day - so be it.

    But the thing that strikes me - and I have a son with chronic eczema and an autistic spectrum disorder who is your age at university - is that you're not enjoying your studies. I wonder if this is adding to your feeling of depression? Is it possible to take time out - can you discuss this with your counselor or tutor perhaps. RA/ IA is a big thing to land at your age and one of the things that people struggle with most is the perceptions and ignorance of the general population. If you google RA (which I think is the main heading for several types of inflammatory arthritis actually - or so my rheumy tells me) you will see that depression and fatigue are quite high on the list of symptoms that affect 50% of sufferers. If you have a tutor or counselor who knows and understands this they might be able to help you defer or transfer. There's such a lot for you to learn and come to terms with that I would be concerned that you might not cope without time off to research and explore what is happening to you and come to terms with it all. If I'm struggling still at 50 then I think it's quite reasonable to be struggling at 20 too!

    I hope you will be contacted by others your age (see there's one already) with RA/ IA and other types of arthritis who will be able to identify with you even more. Warmest wishes and good luck. Mat xxx

    PS oh yes and I was born and raised in Hammersmith but have lived for many years in the far north of Scotland (islands). Depending whereabouts your boyfriend lives you might find that living in Scotland is good for you re the NHS and free prescriptions, beautiful landscape, free tuition fees etc?
    If you get lemons, make lemonade
  • BioluminescenceBioluminescence Posts: 42
    edited 30. Nov -1, 00:00
    Thanks Mat48 and Starburst for you long responses, they were very helpful.

    Mat48: thats good to hear that you have become quite active. I went swimming the other day, I use the word a little losely as I used to do laps and now I'm in the warmest, shallow pool gently moving a little. The water was great, so much nicer than moving by walking. I'm hoping to see a physotherapist who does hydrotherapy. I also talked to a relative who used to be a rhumatology consultant and he said there is quite a lot of hope with the biologic treatments (in my case anyway) for regaining normality if the DMARDs aren't working.

    Yeah it might be for the best finishing the degree when I'm less symptomatic, in the scheme of things I think that would work at well. Its just a lot to get one's head around, knowing if its necessary and there would be a slight price as university is King's College London and has a good reputation etc. I bet though looking back later I will think I am being a bit stubborn trying to stay and have it all, focusing on health and doing work.

    I'm not quite Hammersmith, I'm more Ealing really but I end up being there a lot. And he's in Edinburgh. It would be nice to live with him again as he would be able to help me with things and give me a little more support. I used to live in Wales (where they have free perscriptions) and god I could do with those now... Its easily mounting up to around £25 / 30 a month. I did apply for a discount form thing but haven't heard back and don't want to buy the yearly one until I know its gone through.
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    You can apply on-line or over the 'phone, if I was clever I'd do the computery blue stuff, but I'm not. If you google help with healthcare costs it should bring up the right site somewhere. You can get three-monthly certificates or annual ones. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • BioluminescenceBioluminescence Posts: 42
    edited 30. Nov -1, 00:00
    Oh thanks! I thought they only did a yearly one, a 3 month certificate would be a lot more appropriate for now.
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