Confused and in agony

zoe2x
zoe2x Member Posts: 5
edited 28. Nov 2023, 14:08 in Living with arthritis

Hi, I heard about this site on the radio and thought I'd give it a try.

I've had hip problems since I was 16, after years of complaints and appointments I was dianosed with polyarthritis in 2015. Over this last year It has progressed greatly and I am now having to walk with a stick.

I had another xray and bloods done which all came back clear, but have been referred to muskoskeletal again. Over the years I have seen these guys which didn't help, I've had numerous physio sessions which caused so much pain I couldn't do the exercises and was signed off. I've asked for MRI but Dr said he can't refer me as I'm now under muskoskeletal and it's up to them. I can't get an appointment until May and am struggling so much.

Im a single parent to my 9 yr old son, and I can't do simple tasks or activities with him which is heart breaking. This arthritis also affects my lower back, ankles, knees, shoulders, neck and hands. I feel like im not being taken seriously and feel at a loose end 😞

Comments

  • PeterJ
    PeterJ Administrator Posts: 948

    Hello @zoe2x and welcome to the community. We are a friendly and supportive group and I hope that that will be your experience as well.

    I understand that you have issues with your hip and that arthritis affects your lower back, ankles, knees, shoulders, neck and hands. Our website has a lot of useful information in it and I would recommend having a look at it. To help I've put a couple of links in below. Keep chasing your GP/Consultant as they are the only ones who can help with the referral and often it is just a case of being persistent.


    Please do keep posting and let us know how you are getting on and I am sure that others will connect with you to share their support and experience as well.

    With very best wishes

    Peter

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • stickywicket
    stickywicket Member Posts: 27,764

    I see where you're coming from. I was diagnosed with RA at 15 and it was at its worst when my two sons were young. Thanks to DMARDS and joint replacements things have greatly improved for me.

    What I don't get is why you are being referred to musculo-skeletal yet no mention is made of a rheumatologist or DMARDS. If you have polyarthritis a rheumatologist must have diagnosed you so why not just ring your rheumatology helpline to see if your meds needs tweaking. Has no-one suggested this? To me, it's the first, clear, port of call. If your polyarthritis is flaring pain meds alone won't deal with it.

    I have found, though, over many years, that exercises are vital. I've always been told to do basic Range of Movement ones when flaring and follow up with the more strenuous ones when the flare has subsided. If things are very bad it's best to take some pain relief about half an hour before starting but, in any case, to start very gently, slowly and frequently. (With the exercises not the pain relief😉) A basic, healthy diet also helps as does no smoking.

    However, I do think your best bet is to get back to your rheumatologist. Good luck!

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • zoe2x
    zoe2x Member Posts: 5

    Hi stickywicket, thank you for taking the time to reply to me.

    It's complicated..i didn't know I had been diagnosed with polyartritis until I had an ESA assessment for mental health. It was this guy who informed me (in 2018) about the diagnosis from 2015. So I don't have a Rheumatologist, I was referred to them before muskoskeletal but they refused my referral as there was no RA showing in any of my results. Also the muskoskeletal dep have no record of me being there previously, and nothing is shown on my records on the nhs app.

    It's like I never existed, and highly frustrating as having to start all over again. I was taken off naproxen as it wasn't working even after doubling as requested by Dr. I've been given codeine even after I told Dr it makes me vomit. Grr!

  • stickywicket
    stickywicket Member Posts: 27,764

    I feel so frustrated for you. If you have an inflammatory arthritis such as polyarthritis, it's essential to take DMARDS. And any rheumatologist should know that there are forms of inflammatory arthritis which are sero-negative. Who diagnosed your polyarthritis? Only a rheumatologist can do that.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • zoe2x
    zoe2x Member Posts: 5

    I have no idea who diagnosed me with it, when I've mentioned it to the Dr I have now, they can't find anything on their system. Although it is clearly there because it's on my NHS app under conditions. Another Dr referred me to Rheumatology, he said even though there is nothing coming back in my bloods I could still have it. But when I chased it up my Dr said they declined it because I didn't meet their criteria...whatever that means.

  • stickywicket
    stickywicket Member Posts: 27,764

    I can't make any more sense of this than you can, Zoe. Maybe you could try giving our Helpline people a ring and/or. printing off, or photoing, your NHS App records to take to your GP or just to email them to him.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • zoe2x
    zoe2x Member Posts: 5

    Thank you! I will do that, I swear they think I'm making it up. I will get to the bottom of this!

  • Beeper
    Beeper Member Posts: 8

    Hi Zoe2x,

    I've just read your posts and it sounds familiar.

    I definitely think you should return to your GP. I understand how hard and frustrating this can be. I don't understand why rheumatology have refused your referral, especially if you have hand pain.

    I was referred to rheumatology last September (My bloods were also negative for rheumatoid factor) and I'm still to be seen face to face. So even then it's frustrating, but I would recommend you persevere and ask again to be seen by rheumatology.

    Good luck