I'm struggling.

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Buzz10
Buzz10 Member Posts: 24
in Living with arthritis

Hi everyone.


I joined this site in 2012, after being newly diagnosed with RA at 21. I got under control with Sulfasalazine (Spelling ??) And for the most part had a long period of manageable pain.


In October last year, after a spate of different illnesses, the flare up returned and has been on and off really bad, and resulting in a particuarly bad flare from the end of March.

Due to being in some what of a 'remission' my treatment seemed to come to a standstill (probably not helped with covid) but i was continuing to take the sulfa and had blood tests as and when the GP surgery called me. Before the flare up, at an appt with my GP in July 2022, he noted i should have seen my consultant by the start of 2022, and advised i should try and get an appt. I did try, but admit i wasn't getting in touch often as everything was ticking over nicely.

Since October i have fought and fought for appointments, and extra pain relief. I managed to see nurses in October who give me a steroid injection near my thigh which did settle it down. They also upped my sulfasalazine dose and said i'd get an appt with my consultant. Again i heard nothing, but when it got particuarly bad at the end of March i managed to find a number for his secretary and she got me in within a week. He suggested then that it would possibly need to be a knee replacement, but would need up to date xray (did this whilst at the hospital) and a full body MRI to check what is going on as due to the way i am walking i am getting mega pain in my bank and spine. He also said he would refer me for physio.

I had my appointment on the 14th April, and i appreciate that it's not that long ago, but how long should i be waiting? Every day i don't have an appointment i am defeated. I get everything is understaffed, but i can't remember ever struggling this month.

Pain wise it is constant (I did manage to get another steroid injection last week, which has eased but not as well as the one in October) and the pain killers (Codiene and Naproxen) from the doctors don't seem to touch it. Do you have any suggestions on what i can ask for?

I am also unable to walk normally on my knee and my foot seems to point to the right and i can't get it to walk 'straight' do you have any suggestions on the best knee support i should be using?

I sometimes have to travel long haul for work which doesn't help and had a trip end of April, so i'm not sure if that has affected it more than usual also.

I have recently weaned off antidepressents also and i feel like i did that, and then the pain kicked in and i'm not dealing with it as well as i would.

Any advice and support would be greatly appreciated, and sorry for the long post.

Comments

  • ljt79
    ljt79 Member Posts: 16
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    I'm sorry not to be able to offer much in the way of advice, but just wanted to say I'm thinking of you and hope your appointments come through soon!

    Lx

  • frogmorton
    frogmorton Member Posts: 29,446
    edited 16. May 2023, 08:49
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    Morning @Buzz10

    You were neglected a bit by Rheumatology weren't you?

    Now you are back in the system which is good and probably need your knee sorting out. Still you must chase it up honestly these days we have to be advocates for ourselves.

    It's clearly not in your nature to be 'pushy', but I think you should now be assertive and chase it. Maybe via your GP in the first instance if you don't feel comfortable contacting the 'big guns' just yet.

    Best of luck and please do let us know how you get on.

    Toni x

  • Buzz10
    Buzz10 Member Posts: 24
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    Hi both

    Thank you for taking the time to comment, it's appreciated.

    I got an appointment for a MRI scan over the weekend, which is the middle of June so progress, but also feels like a lifetime away.

    Pain is worse with each passing day, so waiting on getting some medication from GP. But yeh i do feel like i have been neglected, as it was under control for so long they felt the need to not need to see me.

    Appreciate your response, and i am enjoying the community :)


    Speak soon both x

  • Buzz10
    Buzz10 Member Posts: 24
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    So i had my MRI scan on the 15th June, and according to my consultant nothing is showing up and i have an appointment to see him again in October, and he is refusing to see me before hand as there is nothing he can do.

    A nurse told me it would be physio and asking my GP for pain relief.

    On the physio side of things, i was told i would be referred at my appointment in April, and anytime i spoke to the rheumatology nurse i was told i was on the list.

    I spoke with the physio referall team last week, and they only got the referall on the 21st June and the wait time is 6-13 weeks depending on where i am triaged. My consultant wrote in the letter that i had gone downhill a bit (despite surgery being spoken about) so i don't think i will be classed as an emergency case.

    I have today requested a second opinion, wrote to PALS and my local MP.

    I am struggling more than ever and unable to sleep due to the pain.

    I do appreicate the state of the NHS at the moment, but absolutely am lost in the system.

  • Bettyboo22
    Bettyboo22 Member Posts: 23
    edited 5. Jul 2023, 17:37
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    Eh @Buzz10

    I'm sorry to hear of your experience it really is frustrating but very pleased you have made the decision to write to PALS and request a 2nd opinion. I have everything crossed for you that it works for you and you get somewhere.

    Have you made an appt to speak to your GP ? if you explain how bad things have got they should try and provide alternative pain relief.

    Have you seen this announcement - maybe you'd like to tell your story:- Are you waiting for surgery and the waiting time is longer than expected? — Versus Arthritis

  • Loggiemod
    Loggiemod Member Posts: 221
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    Hi @Buzz10 quite right that you have asked for a second opinion, I hope they get you one soon. As you say the NHS is not at bits best at the moment, but keep perservering and I hope that they sort you out an appointment soon.

    Good luck.

  • RavenHairedPixie
    RavenHairedPixie Member Posts: 36
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    I normally end up on Prednisone when I have a flare up! It does normally help me through it. It’s not ideal to take steroids but if you are really struggling it’s worth a try x

  • Buzz10
    Buzz10 Member Posts: 24
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    https://community.versusarthritis.org/discussion/comment/709835#Comment_709835

    My GP was trying to chase up the physio team.

    One of my main problems is, i am quite emotional, so sometimes feel i can not ask for what i need when it's face to face or over the phone.

    I've had some success writing to PALS and my MP.

    Pals has sent me onto the rheumatology service manger, and my MP has wrote back and is going to look into it from their side (although i am less hopeful for an outcome from him, but we will see!!)

    Appreciate the response, and i will look at the link you sent. Apparently i don't need surgery now (Which i'm thankful for if it is the case) so not sure if my story will work.

  • Buzz10
    Buzz10 Member Posts: 24
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    https://community.versusarthritis.org/discussion/comment/709839#Comment_709839

    Hopefully getting somewhere. Thank you for the reply :)

  • Buzz10
    Buzz10 Member Posts: 24
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    https://community.versusarthritis.org/discussion/comment/709846#Comment_709846

    I will look into this with the GP, thank you for the recomendation. I did have the injection twice, and it worked the first time, but not really the second. x

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