26 y/o with arthritis diagnosis. Lost independence, mobility, future hope!

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efd204
efd204 Member Posts: 6
in Living with arthritis

Hi everyone, posting for the first time to try something new. I’ve had reactive/inflammatory arthritis for about 8 months now following the flu/possible Covid at Christmas. I used to be very active, I enjoyed running, walking, racket sports, the gym, walking my dog, etc. I now can barely stand some days let alone walk. I’ve lost my independence - sometimes I can’t even look after myself properly which is difficult because my partner works away during the weeks! I also struggle to socialise these days due to not wanting to be a burden because of my condition. I’m a teacher - I have had a lot of time off already this year and am desperate to be feeling a bit better by September as this disease is damaging my career. I am currently taking methotrexate, it did work a little bit but then I came off it (I thought it was just a 3 month course- oops) and all my symptoms came back worse than ever. back on it now though but already hoping I can be on biologicals. I have two main questions…

1) Lots of advice in VA to exercise your joints and that will reduce pain etc in the long run. Can people really do this? All I can do is swim. I can’t imagine walking for more than 5 mins, let alone all the stretching etc advised on here. If I push through the pain will this really help?

2) does anyone have any positive advice re biological treatment? How long did it take for you to get it, and have you managed to get some of your life back?


thanks in advance everyone and hope you’re having an ok day pain wise!

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  • noddingtonpete
    noddingtonpete Moderator Posts: 1,038
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    Hello @efd204 and welcome to the Community. We are a friendly and supportive group and I hope that will be your experience as well.

    I understand that you have reactive arthritis, been on methotrexate and now hoping to be prescribed biologics. Our website has a lot of useful information and I have put a couple of links in below which I hope you find of use.

    https://www.versusarthritis.org/about-arthritis/conditions/reactive-arthritis/

    and also once you know which biologic come back here and search for info on that.

    Please keep posting and let us know how you are getting on.

    With best wishes,

    Peter (moderator)

    Need more help? - call our Helpline on0800 5200 520Monday to Friday 9am to 6pm

  • frogmorton
    frogmorton Member Posts: 29,477
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    Hi @efd204

    Lovely to meet you.

    I can totally understand how desperate you are to feel better for September.

    Yes exercise can be done and a lot of us do it. Maybe not much (swimming BTW is great!) The art is to pace yourself to not overdo it but to keep moving. No-one is talking marathons or weight training have you read this?

    https://www.versusarthritis.org/news/2020/june/how-to-stay-active-when-you-have-arthritis/

    and this

    https://www.versusarthritis.org/about-arthritis/exercising-with-arthritis/exercises-for-healthy-joints/

    I hope you are maybe being prepared for Biologics? So sorry you misunderstood the MTX prescription. What a shame as it was helping and perhaps isn't now.

    ((()))

    Toni x

  • Fif
    Fif Member Posts: 114
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    Exercise is really good, particularly if you were active before. When I was first diagnosed I felt I could hardly do anything compared to what I'd been able to do before, but by just doing a little bit more everyday I've been able to increase my strength and flexibility. At the beginning I used to be in tears with frustration but I'm pretty stubborn so forced myself to carry on and in the long run it has paid off. Getting outside in the fresh air just for a short walk can do wonders. Good luck and try not to lose hope. With the right treatment and a positive attitude, I'm sure you'll make progress.

  • Arthuritis
    Arthuritis Member Posts: 444
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    @efd204 Please don’t lose hope. You are lucky your rheumy was smart enough to do a proper differential diagnosis and come up with reactive RA. Most take a short cut to straight RA. I have posted a couple of articles on Re RA (importance of getting a proper diagnosis and another article on the role of the gut biome).

    I was in the same place as you a year ago, but a chance treatment with an antibiotic killed off the gut bacteria that were triggering my Re RA. Except my rheumy never diagnosed me with that. I was on the max dose of methotrexate (MTX) and hydroxy (hcq), but susceptible to infections. It is well established that Covid attacks both lungs and gut, so have a read of this UCL research article, see what you think…

    https://community.versusarthritis.org/discussion/60675/ucl-researchers-have-shown-that-damage-to-the-lining-of-the-gut-plays-an-important-role-in-ra-dev


    I am now free of MTX & HCQ and agonising RA pain, on a modified diet to prevent triggering bacteria from taking hold. It’s coming up to 6 months now ☺️

    i am not the only one… if you search on VA for Reactive arthritis there are others… with a hope of recovery when the trigger is removed. @frogmorton has helped so many, I found posts on this as far back as 2009, with another similarly distraught individual at the time. With Re RA there’s hope! Exercise should be gentle and in moderation, to maintain mobility, never to cause pain, but def to stop your joints “locking up”.

  • efd204
    efd204 Member Posts: 6
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    Thanks everyone for your responses, they are helpful. I will keep going with the swimming for now and hope that when I start biological treatment on august 21st I will improve to the point where I can move a bit more.

  • MrDJ
    MrDJ Member Posts: 285
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    I feel your pain @efd204

    It affects everyone differently and is very hard to find the correct treatment but when you do it can help a lot.

    Sadly while they tried to work out what was best for me everything gave way and the damage was done.

    Long story short, mine all started when i was 21 (60 this month). fit as a fiddle in 1985 until one day i got a ache in my left ankle which got worse weekly. saw a rhumy specialist and was told dont plan ahead as you will be in a wheelchair within 6 months. 9 months later i couldnt walk unaided. sent to so many hospitals and dosed up with 60mg steroids daily for a year which caused a cataract in left eye. by time they operated retinal nerve was dead thanks to arthritis atacking that as well. blind in that eye ever since. lots of ops over next 5 years, ankle triple fusion, wrist fusion,hip replacement etc. around 10 years relying on crutches to move anywhere.

    then in 2000 i was asked if id like to be one of the first in the world to test a new wonder drug. at the time i had just lost my dad to cancer and my head wasnt in it so i said no. bad move on my part. a year later i spoke to my rhumy and i was on infliximab anti tnf it within a few months.

    so to your question, does anyone have any positive advice re biological treatment? How long did it take for you to get it, and have you managed to get some of your life back?

    Started on 20mg methotrexate. was previously on 6 sulfasalazine 3 grams a day and many dmards and pain killers but had to ween of that down to 2 as body couldnt cope with both. still on the same doses today so 22 years.

    I walked in on crutches with blood activity of 97 crp and 122 esr. and i walked out 3 hours later without crutches and bloods of 7 crp and 10 esr. working at the hospital i ripped up the result as i was sure there had been a mixup but a repeat was the same. docs were stunned but not as much as me. Thing is sadly the damage had already been done and yes i could walk unaided but was still in some pain exactly the same as i am today. but to be honest without starting that treatment i dont think id be alive today. Im still driving and working for the nhs for past 43 years but since covid im still in part lockdown and they wont let me back to work as cant risk getting covid.

    Now there are quite a lot of different anti tnf biologics out there so treatment for new sufferers couldnt be better. the only problem seems to be the funding and its can feel like a poscode lottery.

    Hopefully they can sort you out soon and with a regime that works.

    good luck and keep us posted.

  • efd204
    efd204 Member Posts: 6
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    @MrDJ thank you for sharing your story. I am so sorry that you have suffered permanent damage from your arthritis. But, pleased to hear of your positive experience with treatment eventually. I am now also needing crutches to walk so perhaps I will have a similar story!

  • Baloo
    Baloo Member Posts: 416
    edited 13. Aug 2023, 03:17
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    @efd204 to me, I think the answer is holistic, your system no longer works self sufficiently and needs both additional exercise, medical support and to me, above all, some wellbeing activity time, to keep on piecing together something entirely new that will work just specially for you.

    When I asked at the hospital doctors if I should push through the pain I was met with blank stares, its not that simple.

    I hate not knowing how stuff works but once I do, I can get the hang of it quite fast.

    I did obtain some sense from physio advice not to continue if the physio is painful. At least to begin with we are mostly not looking for joint and sinew damage, we are looking for muscle strength (or joint flexibility) to come back, and one or other of those very strange physio exercises is going to do the trick.

    I must admit that some of the physio seems a bit tiddly, so I go to the gym as well, but I have to admit that too requires great care so atm I am only using it to gauge my leg strength against the exercise weights.

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