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Rheumatoid Arthritis at 23 - advice needed!

Posted , 12 users are following.

joe01457
joe01457

I've been having issues with my joints for years. It started about 3 years ago when I was 20, when both of my knees we're in so much pain and so stiff I could barely walk. This went after a few days and came back again a year later, exactly the same and at the same time of year.

I finally saw a DR a few months ago when I realised something more serious could be up. In my most recent flare it spread everywhere - from my knees to my ankles, hips, elbows, hands, shoulders and neck. I last had a flare up about 4 months ago, which was the worst one ever. It seems my flare ups are spreading throughout my body, are much more frequent, longer in duration, and much more painful. I am so fatigued throughout the day it almost feels like I have flu, and during my last flare up I could barely walk enough to leave the house for over a week. And it's happening again - a few days before my final exams! 

My DR is referring me to see a specialist after some blood tests come back. I stupidly left it months before getting the blood test because I was out of the flare up... Alas I regret this now as I could have this sorted already, but I didn't think I would flare up again so quickly. But as soon as these are back I will be referred. The two DRs I spoke to said they are 'fairly certain' it's RA as I'm a textbook example but they are unable to give me an official diagnosis until I see a specialist and other things are ruled out. 

I'm just feeling in limbo right now as I don't have a diagnosis yet, have no treatment for this other than painkillers (which do not work), I'm in pain everywhere, and again having difficulty walking. 

Are there any other young people out there who have been diagnosed? How do you manage to carry on doing your usual stuff when in a flare up, like uni/work? Is there anything you recommend which could help my ability to walk?

A lot of questions I know - but any advice or just your own experience would be helpful.

0 likes, 13 replies

13 Replies

  • gaz1234
    gaz1234 joe01457

    Posted

    Hi

    Totally understand you asking for comments from other young ppl as you are young yourself and can i just say i and may others on here sympathise with you and understand you. Your symptoms do sound like RA. I was 40 when i was diagnosed, my neighbours son who has just started secondary school also has RA and he's 12.

    You will get diagnosed properly but sadly it takes time. Dont let the pain beat you at this vital time in your life (exams) what painkillers are you taking. I take codeine and paracetemol side by side so if im taking 2 or 3 codeine i will take the same paracetemol. It works for me to an extent. Take care, stay well and stay focused on your exams.

    Regards Gaz

    • joe01457
      joe01457 gaz1234

      Posted

      Hi Gaz,

      Thanks for your reply. Its (weirdly) good to know there's other people out there, of any age, that understand what we all go through. Especially the long process of diagnosis! Most people I've spoke to instantly think of Osteoarthritis, or compare it to their aching knee from the gym... Both are very different from RA and many don't understand how it can effect any age; just holding my head up right now hurts!  

      I've been taking paracetamol and ibuprofen gel. I'll make sure to pick up some codeine/co-codamol tomorrow and hope that will get me through exams. 

       

  • lyn1951
    lyn1951 joe01457

    Posted

    Yes sounds like RA or a version of it, stress only makes it worse, has your flares come every time you have exams, and or really stressful times in your life.

    ?Do you suffer from psoriasis or execma on your skin.

    ?Try this - it worked for me, only took me 15 years to figure out, cut out ALL WHEAT, and I do mean ALL WHEAT, check every label before you put anything in your mouth, for me about 8 hours after cutting out wheat I started to notice less pain in my shoulders. 

    Have now got to the point of specialist saying to me whatever you are doing keep doing it, your bloods are the best they have been in 15 years.

    ?Learn what you bloods levels are, ESR & CRP, mine havebeen as high as ESR 77 and CRP 35, ask, they are you indicator if you are on the right meds, and if they are working or not, my specialist is very good about sharing information and helping me understand of what I am doing is working or not.  

    ?I have one med that works wonders for me, but it causes me extremely high blood pressure, and even on lowest possible dose I still have issues with it, so I worked out that if I half the tablet, yes I get relief at half the dose without the side effects, that is normal for anybody else, that's why you must be aware of what is going on with you.

  • carol303055
    carol303055 joe01457

    Posted

    Hi Joe, I’m not young but if I could chip in my 2 penny worth? Would your doctor consider some oral steroids in the interim? Worked wonders for me when I had severe flare ups like you’re describing.  I so feel for you. Hope you get some answers/ relief soon. Carol
  • esther77657
    esther77657 joe01457

    Posted

    I just want to express my sympathy to you.  I am no longer young but I was diagnosed at the young age of 21, having suffered the same symptoms you describe for about a year.  That was indeed a difficult time as, like you, I could barely walk to the end of the road and back. Proper treatment is the key; this will help you enormously.  In the meantime, to help cope with the stiffness and pain, you could try getting up early and taking a warm bath.  In my experience, this really helped.  The longer I spent in bed, the stiffer my joints were! (Others may argue that you need lots of sleep; perhaps you can take a short nap during the day?) Find comfortable shoes (try Skechers; they have  memory foam soles). Confide in a close friend, being specific about the things you find difficult.  Most people will not understand that somebody so young can have arthritis! I was told so many times that I could not possibly have arthritis at my age!! This is really unhelpful but understandable.  You just need at least one person close to you who understands. This can make a tremendous difference.  There should be people at University (Disability services) you can speak to about your physical limitations and your needs.  Even without a diagnosis, they should provide help for you. I really hope you receive the medical help you need very soon and wish you all the best. 
  • beverley_18828
    beverley_18828 joe01457

    Posted

    Hi Joe, you poor love, you have my sympathy, all that pain when you least need it, like Lyn says, the stress isn't helping but there's not much you can do about that, and I'm with Carol, steroids, oral or injection could be a quick fix for you until you get your medication sorted, co-codamol is good for pain relief but see if you can get it on prescription as over the counter co-codamol isn't as strong. Hope you can find something that helps you and good luck with your exams.

  • braeanna1502
    braeanna1502 joe01457

    Posted

    I'm 24 years old I was diagnosed with rheumatoid arthritis late January... At first I was worried about taking medication for it so I tried living a healthier life and after awhile it was not working for me and the pain started getting worse. I had started to miss so many days of work bc I couldn't do anything. It was hard for me to interact with my 2 children and that started to stress me out bc I did not want to do anything at all so I decided to go back to the dr and they prescribed me prednisone and it started working instantly for. In April I finally got to see the rheumatologist and since January my levels went up. They prescribed me methotrexate and I have been on it for 7 weeks and I am still in pain. I am also still on prednisone and I don't think its working for me anymore bc I am starting to be in pain a lot more. This is the worst pain I done ever felt in my life and it's stressful for me mentally.

    • gaz1234
      gaz1234 braeanna1502

      Posted

      Hello

      You are young but sadly RA strikes all ages.

      Ive had it about 17 to 18 yrs now. I was just past 40 when it started.

      You need to speak to your Dr or Consultant to get things moving along.

      Methotrexate alone wont take care of it although for me it is a part of my meds and i have no probs with it but some ppl do.

      I take17.5 mgs weekly and humira which is a self administered injection once every 2 weeks. Diclofenac for swollen joints and painkillers. Mtx has some p/killing properties but not much, so with medical advice play around with the painkillers until you find the right amount that works for you. The best bit of advice i ever got was from a nurse on the rheumy ward when i had a stay in there, she said do what works for you as you have this thing for life. The hardest but most important thing is to stay positive. DONT let it beat you. Get up early in the morning eat something and take your painkillers, put the news on tv and put your feet up for 20 to 30 mins. The pain relief will have kicked in. NOW face the day.

      Same thing tomorrow and all your other tomorrows.

      Take care stay well and stay focused, its hard but this is the hand were dealt and how we deal with it defines us.

      Regards Gaz

    • jane07731
      jane07731 braeanna1502

      Posted

      Hi Anna,

      7 weeks is still early days for the methotrexate to take effect, it can take 3 months or so for this.The dose may need adjusting of course. Prednisolone is usually only used till methotrexate takes effect. Unfortunately methotrexate does not work for everyone and if not your rheumatologist will go through the various medications till they find one which will control your RA. More modern biological medication is often added to methotrexate if the methotrexate is not effective on it's own. You can still take simple pain killers meantime. Try and stay positive, which I know is difficult, but there are some excellent medications available nowadays for RA and I am sure it won't be long before your disease is under control, whether by methotrexate or one of the other disease modifying medications. If you are really struggling contact your specialist rheumatology nurse at the hospital.

      Hang in there, things will improve!

      Best Wishes,

      Jane

  • jane07731
    jane07731 joe01457

    Posted

    Hi. I was diagnosed as having rheumatoid arthritis aged 20, while at university studying medicine. At that time there were few options for treatment, unlike nowadays. Early diagnosis and treatment are very important. Most rheumatology departments run quick access clinics for possible new cases of inflammatory arthritis and your GP should be able to refer you into one of these. There are other possible diagnoses, from your symptoms and your age, such as Reactive arthritis but the rheumatologist will sort that out. The important thing at this point is to get referred urgently, diagnosed and commenced on appropriate treatment.

    Best wishes

  • jeninek
    jeninek joe01457

    Posted

    Hi

    really just rest when you can and do specific exercises every day you can access these on the nhs web site. keep a healthy diet but unfortunately until you have a diagnosis there's not much else you can do.

  • tasha78786
    tasha78786 joe01457

    Posted

    I have been dealing with ra since I was 20 n I'm now 29 it doesn't get any easier...

  • Noushy
    Noushy joe01457

    Posted

    Hey Joe.

    How long until they you will get to see the specialist?

    They should at least have given you steroids to manage the inflammation until they decide on what treatment they want to use.

    Don't panic. It is stressful at first especially when you aren't used to the pain. Hopefully they will get you on some medication soon.

    Things that help are warm baths, just take your time in the mornings that's when the pain is usually the worst. Try and stay active, I always find that helps.

    Try not having too much sugar or caffeine a lot of people say it aggravates flare ups.

    It will get better. x

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