arthritis at 17 for 2 years and still struggling

codie96
codie96 Member Posts: 6
edited 15. Aug 2015, 07:16 in Young people's community
Im really desperate for advice and help.
Im 17 and found out had I arthritis almost 2 years ago and I still find myself constantly depressed and upset about it. I have never been able to cope with it. I don't understand because Im such a bubbly loud energetic person but when it comes to specific situations I let my condition get the better of me.
My arthritis is in all off my joints but worse in my left knee, it is really sore, swollen and stiff. I was on methotrexate and sulfasalazine for almost a year whilst also having my knees drained (which was very uncomfortable) and a injection into my bottom. None of this has worked for me and I suffered quite badly with the side affects.
I used to work as a waiter but it all got too much being on my legs running around all day so I had to quit my job. I am applying now for jobs that are good for my health but having no luck and I really need to be earning money, please can anyone help?

thankyou!!!

Comments

  • stickywicket
    stickywicket Member Posts: 27,686
    edited 30. Nov -1, 00:00
    Hello codie96. I'm so sorry you're having such a hard time of things. Arthritis ata ny age is a lot to get ones head round but it is extra hard when you're young and all your mates have so much more energy than you do and don't really get the constant pain. I'm not young now though I was (15) when first diagnosed. Our young people do come and go rather more than those of us on the Living With Arthritis forum. I take that as a good sign that their meds are working well. However, we do have several young regulars on LWA so, if you re-post there, they will, hopefully see your thread and answer.

    I'm a bit puzzled as to which meds you're on now. It sounds as if you no longer take methotrexate and sulphasalazine. is that right? If so, you will be suffering.

    What about giving our Helpline people a call? You would have the time and opportunity to talk round it all at length and try to hammer out some decisions.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • codie96
    codie96 Member Posts: 6
    edited 30. Nov -1, 00:00
    Thankyou for your reply.
    Yes, I am currently on no medication as the hospital are leaving me to flare up and then take further action as no medication has seemed to work yet.
    I'm new to this website so I'm not to sure how to get the page you recommended?
    Thanks again for your reply and your help
  • stickywicket
    stickywicket Member Posts: 27,686
    edited 30. Nov -1, 00:00
    That seems a very odd decision on the part of your consultant. Usually, they like to hammer this disease on its ugly head before it can get a grip. When did you last see your rheumatologist? What are the arrangements for seeing him / her again? I noticed that you said on the thread about PIP on the Living With Arthritis forum that you have applied for PIP so you must be really struggling. Please make another appointment and get started on a proper meds regime.

    (I see you did manage to find the Living With Arthritis forum. Just start a new thread of your own there and I'm sure you'll get some replies :) )
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • codie96
    codie96 Member Posts: 6
    edited 30. Nov -1, 00:00
    My nurse at the hospital was going to start me on a bio therapy (an injection) but at my latest appointment 2 weeks ago when I was meant to get this new treatment she told me she was not going to give it to me and recommended that she puts me back on methotrexate but i told her that it hadn't worked before after being on it for months and suffering with really bad side affects! So her desicion at my last appointment was to just leave me to flare up everywhere which is very upsetting because I struggle so much and I'm in constant pain, I dont feel like priority when I'm in her care which is also upsetting.
    Yes I applied for PIP a year ago and no one has got back to me.
    These are the reasons I visited this website because I feel like no one is helping me to cope with my condition or how to get on in life.

    Thanks so much for listening and giving me advice I really appreciate your kindness
  • stickywicket
    stickywicket Member Posts: 27,686
    edited 30. Nov -1, 00:00
    I do hope you will be able to get the help you need. You seem to have had an exceptionally unfortunate time of it.

    I wonder who suggested the biologics to you. Nurses usually only act under the guidance of the rheumatologist. However, it's not usual to give biologics until a person has failed on three DMARDS though it does sometimes happen. It seems you've only so far failed on two. Did you try methotrexate by injection at all? That can bypass the worst of the side-effects. Were you advised to increase your folic acid to counteract the side-effects?

    I'd suggest a couple of things. Firstly, give our Helpline people a call on the Freephone number at the top of the page. Secondly, make an appointment with your GP to discuss what happened at your last rheumatology appointment. By now he should have the consultant's report and might be able to throw some light on the decision to leave you without medication.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Theatergirl
    Theatergirl Member Posts: 2
    edited 30. Nov -1, 00:00
    I am also 17 and I was just diagnosed with psoriatic arthritis, it holds me back from doing average day to day obstacles such as going to work for 4 or more hours or doing nursing Clinicals for 6 hours a night :?
  • codie96
    codie96 Member Posts: 6
    edited 30. Nov -1, 00:00
    It's not good is it I struggle so much every day of my life I can't even work because I can't hardly walk and can't lift my arms because of my achy elbows and shoulders

    How have you been coping?
  • 09hanser
    09hanser Member Posts: 1
    edited 30. Nov -1, 00:00
    Hello! I'm Hannah, and I have Polyarticular Juvenile Arthritis (pJIA). I've been suffering from pain in multiple joints for the past 3 years, but was only diagnosed December last year. I'm 17 now also, and have found this page today and think its fab, I know no one my age with pJIA or JIA, and wanted to send you a message to say you're not alone!
  • stuthebru
    stuthebru Member Posts: 12
    edited 30. Nov -1, 00:00
    hi im age50 had since age7,,i cannot believe all these stories of treatments,i have only ever been given pain killers and tried anti inflammatories,which always give me stomac pains so i give up on.
    maybe its living in wales and not being welsh
  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi stuthebru welcome to the forum,you will find everyone friendly and ready to chat and help you as much as they can.Our busiest forums are Chit chat and LWA,but you choose the forum you are most happy with.
    From Fridays Moderator :)
  • 36katieo
    36katieo Member Posts: 7
    edited 30. Nov -1, 00:00
    hi codie, im 17 too got diagnosed two years ago with sacroiliitis arthritis but had it for like 3 years previously before the doctors actually did what they were paid to do. I'm now on humira which is an anti-tnf. I know what you mean about your moods, I was good at sport, happy and sociable but since the arthritis I can't do much at all, im very isolated and I really struggle making and even maintaining friendships cause I either dont have the ability or people misunderstand my inability with just looking for an excuse, even close friends. How im trying to deal with it is to act like being alone is what I want, that I dont want to go were everyone else is. Doesn't work much but sadly its the best I can do.
    Just try your best to at least get out of your bed, thats all ya can do, sorry this isn't very useful but c'est la vie.
  • May13
    May13 Bots Posts: 4
    edited 30. Nov -1, 00:00
    Have you tried the food supplement r2? Older people take this and said that the pain seems getting lesser and lesser. I just don't know if this will have the same result for people of younger age. By the way, this is not recommended for people under 18.
  • stickywicket
    stickywicket Member Posts: 27,686
    edited 30. Nov -1, 00:00
    Please don't take any supplements unless your doc or pharmacist has assured you they will not interact with your medication.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • May13
    May13 Bots Posts: 4
    edited 30. Nov -1, 00:00
    R2 is the only food supplement that is listed in the Physicians' Desk Reference. If UK and US uses the same reference on prescription drugs, it wouldn't be hard for your doctor to check it's components.
  • stickywicket
    stickywicket Member Posts: 27,686
    edited 30. Nov -1, 00:00
    May, I googled 'Physicians Desk Reference R2' and this is what came up.

    “ageLOC® R2 is delivered as alternating Day and Night formulas to help balance two interconnected aspects of youthfulness. ageLOC R2 Day resets youthful gene expression related to cellular energy production while ageLOC R2 Night resets youthful gene expression related to cellular purification. Together, ageLOC R2 targets aging at its source to promote physical vigor, mental acuity, and sexual health, as well as to support the body's ability to neutralize and remove cellular waste and metabolic byproducts.*”

    This is nothing to do with any form of arthritis.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • BigJ1111
    BigJ1111 Member Posts: 3
    edited 30. Nov -1, 00:00
    codie96 wrote:
    Im really desperate for advice and help.
    Im 17 and found out had I arthritis almost 2 years ago and I still find myself constantly depressed and upset about it. I have never been able to cope with it. I don't understand because Im such a bubbly loud energetic person but when it comes to specific situations I let my condition get the better of me.
    My arthritis is in all off my joints but worse in my left knee, it is really sore, swollen and stiff. I was on methotrexate and sulfasalazine for almost a year whilst also having my knees drained (which was very uncomfortable) and a injection into my bottom. None of this has worked for me and I suffered quite badly with the side affects.
    I used to work as a waiter but it all got too much being on my legs running around all day so I had to quit my job. I am applying now for jobs that are good for my health but having no luck and I really need to be earning money, please can anyone help?

    thankyou!!!


    Hi Codie96

    Im John, Im now 32 BUT ive suffered badly since I was 16. it all started with a shocking bad right knee, initially i went for arthroscopy so find I had wear and tear, I was a usual kid, loved football, golf, climbing trees, biking bla bla bla, I had no memorable injuries to my knee, kust happened all of a sudden

    I was doing my dream job as a greenkeeper at a nice golf club but really sturggled with the pain.

    bythe time i was 21 I had 3 knee ops, removing cartlidge skimming etc and was told I had arthritis, was on many different disease modifying drugs (methotrexate, sulphasalazine, leflumonide, gold injections, anti tnf etc) and I hated my life, i was in the gutter to be honest, put on weight and lost my job, took another couple of years of operations, draining of the fluid ever 2 weeks and medication to start to feel normal again, I was always very laid back and i lost that, i lost my smile, then everything changed, i met someone, got married and had a son, then my outlook changed, there is someone worse than me and thats what keeps me going.

    im now 32 and have 2 kids, my whole body is falling apart but i have just started methotrexate again as the inflamation is back along with the rheumatoid problems, i also am starting new anti tnf treatment this week(embrel).

    i have just had my left thumb joint removed and fused with wires which hurts alot but hopefully will allow me to get better use of on my left hand, im also booked for total knee replacement in november, i have spondilitis in back and also ciatica creeping in. its taken 15 years but i percivered, i stayed strong and positive and it no longer beats me, im in extreme pain every day but I work every day in a great job, i spend all my spare time doing things with my kids, i would not be able to do this without speaking to people in groups like this, without the help of the nureses at the disease unit and general friends sticking by me.

    what im trying to say is, stay strong, keep head up and take the pain killers, make the most of the good days and make sure that when the bad days come you keep smiling!!!!!