Feels like starting over…

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Rach2405
Rach2405 Member Posts: 4
edited 14. Jun 2021, 15:33 in Living with arthritis

Hi there!

I’m Rachael nice to meet you. I hope you don’t mind a loooong first post but I figure you guys will know a bit about this arthritis life!

I was diagnosed with arthritis (no idea what just told I was sero-negative) when I was 23. I had a huge flare in my knees and hips and elbows for a few months before being diagnosed. Then I was given lots of steroid injections and put on sulfasalasine.

I took it for a while and continued to see consultant at clinic. Then we went to 6 monthly then yearly check ups.

The thing is I’ve always been a forgetful person, and slowly but surely I missed doses, which then became days worth and ultimately ended with no medication at all. I’m quite an anxious person and during my 20’s I gave everything to my work which meant self care and bloodwork appointments became a thing I just didn’t do. So I just slowly slipped away from the system and said I was feeling fine and didn’t need the meds anymore and the consultants were fine with that because of no flare ups.

I think, and I’m not trying to come across as feeling sorry for myself, that I have simply gotten used to the aches and pains over the past 7 years as I keep relaying back to initial diagnosis when I was really bad and thankfully it has never gotten that bad since. But when I look back at the last couple of years I have had lots of achy joints.

I did go back to the consultant clinic after I had my wee girl because I was sore, but but I struggled a bit being a new mum and unfortunately I didn’t pick up my prescription until about 6/8 weeks after the consultant told me over the phone to go back on them. And when I had my appointment a couple weeks after that the doctor said “ well that tells me it’s not that bad because if it was you would have been desperate for the pills” and gave me a bit of a telling off because of my weight. I left that appointment in tears and have been so afraid to go back since then but Covid struck and I only had to do phone appointments which suited me fine because I could just lie over the phone and again I haven’t been taking any medication.

Last year I had a pain in my elbow and I seen a private GP (Covid hospital totally overwhelmed and I was happy to seek support elsewhere to leave space for those in desperate need). Anyway he gave me a kenalog injection but it didn’t help much so I figured it wasn’t arthritis. 6 months later it was still hurting so tried physio and they thought it was golfers elbow. So tried the exercises and it gradually got worse with restricted movement. Seen an ortho consultant and long story short (lol yeah right size of this post) I had an MRI and an elbow arthroscopy with release. Biopsy showed chronic synovitis which as far as I can tell means active arthritic disease.

So I have had a massive fright because I haven’t even had 8 years since diagnosis and already needed a surgery. I have been back in touch with the hospital and they have advised to have a face to face appointment to discuss medication.

They would’ve give me methotrexate before because I hadn’t had a family yet but I think I would be better placed to take that than 6 sulfasalazine a day? But I’m so anxious for my appointment because I think they will think I’m non compliant and have been wasting their time the past few years. And I truly am grateful for everything the NHS provides, I just don’t think I gelled with the last consultant.

But I honestly believe I just wasn’t ready to face it in my 20’s. it was a pretty big and shocking diagnosis and I know all of you will know how it feels. Just looking for some words of encouragement for having to go back and start over. Has anyone else been in the same position?

Jeez I really did ramble on so if you’re still here we’ll done and thank you!!

Hope to get to know some of you.

Rachael x

Comments

  • jeddison1985
    jeddison1985 Member Posts: 211
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    Hi @Rach2405 firstly let me welcome you to the forum I hope you find the information and support you are after from our wonderful community.

    I can see from your post that you have had a long varied journey with arthritis over many years with a range of experiences with healthcare services. I can see that you have recently had some news and updates on your condition, with recent surgery, questions around medication and the condition. As a person who also had a scary diagnosis around arthritis in my 20's I can completely understand the challenges you outline with coming to terms with it but you are not alone.

    The site is full of information and I wanted to signpost you to some information that could help as below:

    Firstly a couple of stories about Seronegative arthritis:

    Some information related to elbow arthroscopy:

    Information on Sulfasalazine and Methotrexate:

    Please feel free to search the forum for others with similar experiences and I am sure that some of our community will be able to help offer some useful suggestions.

    Take care and I hope you get some relief and answers soon.

    Thanks

    Joe

  • Rach2405
    Rach2405 Member Posts: 4
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    @jeddison1985 thank you so much for these links they are really helpful. Hopefully get myself back on track and I’ll just need to try and get my head in the game! Take care!

  • Jona
    Jona Member Posts: 406
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    Hi Rach2405,

    Welcome and so sorry to hear your story of your struggles and I understand completely, as for some consultants and other medical staff they can be rather arrogant believe me I’ve had some run ins with them but you must not let that put you off you must learn to fight back and tell them straight and honest they respect that more

    I was paying for private consults and I could not afford it but like you I thought they were busy in the nhs but had to go back to an nhs consultant we are just a body to some, others really care

    anyway don’t let them bully you over your weight either just explain honestly to them what happened honest they’re not allowed to bite good luck just think you need treatment and they’re there to give it nothing personal just business

    love Jona 😊💪

  • Rach2405
    Rach2405 Member Posts: 4
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    @Jona thanks a lot for taking the time to respond it means a lot! I know I need to just get my big girl pants pulled right up and face the music! It’s just a bloody club no one invited themselves too isn’t it! Glad this whole thing is here though it’s pretty cool to just be around people who get it! Take care of yourself xx

  • Jona
    Jona Member Posts: 406
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    Hi Rach2405,

    They say walk a mile in my shoes and see if they pinch, big girl pants pulled up tight and do a Rocky haha no seriously we are human I was called a serial attender once by a person who wasn’t even a dr after several bouts of illness one after another including shingles let’s just say he will think twice before he says that to another patient including his receptionist very very rude but hey ho who are they as they also say what goes around comes around be strong and straight talking my mum used to say they use the toilet like everyone else

    be strong and let me know how you get on

    love Jona 😊💪💐