In need of reassurance

Hlwcrn Member Posts: 3
edited 11. Aug 2013, 18:04 in Young people's community
Hi everyone, just want to vent really as I feel I can't anywhere else.
Im 24, I was diagnosed with 'undifferentiated' RA five years ago and I'm still trying to find a treatment that works. I also have hypothyroidism, diagnosed when I was 12 and Raynaud's phenomenon which I've had for 6 years.
My blood tests show a rheumatoid factor but all the other things are negative so I'm apparently not a typical RA patient. I don't really understand completely but my grasp of it is I don't fit I to a box, I have a combination of things, some unknown, so I'm told treatment is difficult.
I've been on steroids (oral and injection) hydroxichloroquin, methotrexate, nefedipine and the most recent one of mycophenolate, none of which have done anything AT ALL except make me miserable with side effects - bad stomach upsets to the point where I can hardly eat anything, feeling/being sick, headaches etc etc
I'm so stressed at the moment, Im so tired all the time but can't sleep, I sometimes can't feed myself because my hands and wrists hurt so much,my food gets cut up for me like a bloody child. My knees and ankles are constantly swollen and painful to the point where I can't even sit comfortably let alone walk.
On top of all that I keep having arguments with my partner, she is really caring and she loves me I just still feel like she doesn't completely understand, I feel like no-one does.
I'm due to start Rituximab (MabThera) in a week which I'm really nervous about. I just wanted someone out there to say its all going to be ok. Im usually an upbeat positive person, my motto is 'things can always be worse' but Im just struggling to keep my positive face on. I just needed to vent I guess. Would like to know that I'm eventually going to be able to actually live my life and everything is going to be ok.
Sorry I've gone on a bit.
Just feeling a bit poo...


  • stickywicket
    stickywicket Member Posts: 27,686
    edited 30. Nov -1, 00:00
    Hi there hlwcm. It sounds like you're having a tough time of it and have been doing for some time. It just grinds you down eventually, doesn't it?

    If you read the posts on here I think you'll soon find there are a whole load of 'untypical' RA patients. I'd say it's about 50/50 between those of us who slot neatly into pigeon holes and those who don't. The net result is the same though as we all get the same meds. Some work for some and others for others and the only way of telling if one works for you is trial and error. Plus, as you've already discovered, even if they work on the disease they can have unwanted side-effects. It's worth persevering as much as possible, though, as these often can and do resolve given time and maybe a bit tweaking here and there.

    It must be very frustrating to have to have your food cut up for you. I'm a veggie, which makes that area a whole lot easier as meat used to be my worst offender, but I do still, occasionally, have to ask my husband to oblige. I also never order soup in restaurants as I can't guarantee to get it intact to my mouth :roll:

    Possibly your knees and ankles are worse in this hot weather. It never does my joints any favours. Elevate the ankles and knees when possible. It helps.

    I'm sure your partner, however loving, doesn't really understand. Most of us don't understand other people's illnesses and diseases until/unless we experience them for ourselves. Arthritis is particularly difficult as there is often nothing to show for it. Try googling The Spoon Theory. It's a useful way of explaining things.

    I do hope the rituximab works for you. I know it has helped many but, as I said earlier, there's no predicting in advance. Do let us know how you get on with it.

    By the way, I'm not a 'young person', though I was (15) when first diagnosed many years ago. You'll find more people see your post if you copy it to the Living With Arthritis forum. Good luck!
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh mate, I am so sorry, you are having a rough time aren't you? I second everything Sticky has said btu it may also be worth reading There's a Gorilla in my House. I have two gorillas in mine, one is called PsA (psoriatic arthritis) and the other OA (osteo arthritis) and they are bl**dy awful lodgers. They are not smelly or messy but they sure make their presence felt.

    I spent a few years labelled as an 'inflammatory arthritic' and it wasn't until my skin helpfully obliged with a bout of psoriasis that the metaphorical penny dropped. It made no difference to the meds, however, nor to the progress of the disease.

    People who don't have what we have can't understand it. They are used to being poorly, going to the docs, taking some meds and getting better. We are used to being poorly, going to the docs, taking meds and NOT getting better. That's a whole different ball game. We also tend to look OK, which doesn't help either. Those who know me know that I am feeling very rough when I don't wear earrings, a) because I can't fit them thanks to dodgy hands and b) I can't be bothered even to try.

    Keep talking to us - we may be older than you but we are in very similar boats and have much experience in dealing with this dross. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Hlwcrn
    Hlwcrn Member Posts: 3
    edited 30. Nov -1, 00:00
    Thanks so much for replying. Think I was just feeling a bit low last night, it's so nice talking to people who know how you feel! Wish I'd discovered this forum years ago!
  • Kittkat
    Kittkat Member Posts: 309
    edited 30. Nov -1, 00:00
    Sounds like you have had a rough time I can't give you much advice about the drugs but stay positive this may be the one for you!Also my mum makes all my food for me which is very frustrating my hands are just so sore and hurts to stand up so know how you feel.I don't have a partner but I know my ex didn't really understand my psoriasis (got psa) so I really don't think they would understand the arthritis. I just tell my friends I have got inflammation in the skin and joints. I am 23 with this so message me if you want to chat. Take care
    How am I gonna be an optimist about this?
  • charleeh
    charleeh Member Posts: 173
    edited 30. Nov -1, 00:00

    I am 22 and 5 years ago was diagnosed with Arthritis... sero negative in the end.

    My friend recently put me on to a thing called 'the spoon theory' and it describes my condition exactly in words I could never have come up with. The person who wrote the theory was asked to explain their condition by their best friend, who they thought understood it more than anyone but again as said earlier in this post no one really knows unless they have it. I found it quite comforting to read.

    I am on a bio drug called Tocilizumab now, and its a long story as they are tweaking my dose but there is such a significant improvement in my symptoms its great! (if only it lasted all the month :/ as I said long story!)

    A positive mental attitude gets me through, I find it great taking to folk on here as they understand the condition better as they have it.

    Doctors treat the condition but fellow sufferer's teach you how to live with it I find.

    Let us know how you get on!

    Best wishes