Newbie Still Awaiting Help for Joint Pain

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Molly28
Molly28 Member Posts: 12
edited 28. Nov 2023, 14:08 in Living with arthritis

Hi all, I'm new and just come across this community. My GP has referred me to rheumatology for suspected rheumatoid arthritis but bloods don't show anything so rheumatology have kept my referral as routine- been waiting 20 weeks and counting, but my issues started over 3 years ago after having my daughter. After numerous GP visits and 3 years of strong painkillers every day, I finally got a referral but waiting list is huge. I've been in a terrible flare up since having Covid in September that never went away and now feels even worse after another bout of covid 2 weeks ago.

Situation I'm in now is that both hands, wrists, elbows, feet, knees and shoulders are affected, but my hands are the worst. I'm struggling to drive now (although I have to) and the impact on quality time with my toddler is upsetting. My hands are swollen on a daily basis these days, especially my right hand and my nails are lifting on my right hand. I don't sleep well and I'm struggling to keep going with work, but I feel I have to - I run a school and nursery and don't want to let my team and the kids down with how tough times have been. I can't use my hands the same as I used to and get so frustrated when I can't open things or put lids back on things. No idea how much longer I'll need to wait to be seen, and with no suggestion of anything from my blood results, I'm not even convinced I'll get any help. I feel this is my new life and I just need to accept it.

So, basically, I've come on this community because maybe I'll learn new ways to manage what my body is doing and just generally to feel there's others to talk to. I'm fed up complaining about pain to my family, it's not fair on them.

Thanks for reading.

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  • Poppyjane
    Poppyjane Moderator Posts: 789
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    Hello @Molly28 , welcome to the online community,

    You are experiencing pain in many of your joints particularly in your hands, you are waiting for an appointment with a consultant but are conscious that there is a long waiting list. Sometimes when you are in this situation a phone call to the consultant's secretary may help speed the process along, especially if you explain that your condition has changed rapidly over time and how much it is impacting on your daily life. Some of our members have zero negative blood results but this does not show that you do not have RA.

    I attach some links that I hope you will find helpful

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/


    I realise your little one is now a toddler but I hope the stories from other mums help. We are a friendly group who are all affected in some way by living with arthritis so please join in with the discussions and activities. Thank you for sharing your situation with us and we hope that other members will soon offer to share their advice. We look forward to hearing from you soon.

    Take care

    Poppyjane

    If it would be helpful to talk to someone ring the Helpline 0800 5200 520

    Monday - Friday 9.00a.m. - 6.00p.m.

  • stickywicket
    stickywicket Member Posts: 27,731
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    I'meant afraid many GPS seem unaware that there are several sero-negative forms of inflammatory arthritis and even RA is not invariably sero-positive. It's essential you go back to your GP, print off some extent of the info and get an earlier referral to a rheumatologist. The sooner you're on disease modifying meds the better for your future.

    Having said that, you are in work that must make it hard to avoid covid and that, as you are aware, just makes it all worse. My son used to call my grandson's nursery 'the little germ factory'.

    Check out Sero-negative forms of arthritis' and take the info to your GP. And good luck.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Beeper
    Beeper Member Posts: 8
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    Hi Molly28,

    Sorry you're having such a rough time.

    I can relate to what you are experiencing. I'm also waiting for a rheumatology appointment for longstanding joint issues, swelling, pain and other wierd symptoms.

    I waited 24 weeks for a first appointment which was a telephone appointment. It was to confirm I had joint pains and raynaud's phenomenon. I was informed that my White blood cells were low and I needed a face to face appointment. I was frustrated because the Hospital already had the information I shared on the telephone call, but relieved to be getting a face to face appointment in Connective tissue disease clinic and I was told this would be urgent in 6 weeks. I could wait knowing I would be seen soon. However, I phoned the outpatient department and was told due to the backlog it would be another 4-5 months!

    I am self medicating with over the counter medication, which is not ideal and as you describe, I am shattered and finding everyday things and work much harder. It is so hard waiting. A diagnosis or not some medication prescribed by a specialist could provide some physical and psychological relief. It can be a lonely and worrying place to be, just waiting.

    I have reluctantly contacted my GP and asked for an expedite letter to see if they can speed up this process. My GP has agreed. That was 2 weeks ago and I'm planning to telephone the hospital again at the end of next week to see if it's made any difference.

    I don't know if this will make any difference. I appreciate the Covid pressure, but I don't think over the years, as this has been going on, that I've advocated well for myself.

    You could get in touch with the hospital or your GP and ask for an expedite.

    Good luck, be kind to yourself and keep us informed how you get on.

    :)

  • jamieA
    jamieA Member Posts: 765
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    Hi @Molly28

    I'm no expert by any means but I thought lifting/pitting/ridge nails was a sign of psoriatic arthritis. I was diagnosed with psoriatic arthritis back in October 2020 and your symptoms are very similar to those I experienced. Since there's no specific test for PsA the medics appear to work on probabilities. I come from a family of psoriasis sufferers, although my psoriasis was minimal when I first went down with arthritis symptoms. In the blood tests my rheumatoid factor wasn't elevated but CRP and ESR were. I've got ridges on my nails.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5534507/

    Before being diagnosed with PsA I'd had a series of chest infections/pneumonia which a number of medics (including a Covid triage consultant) thought was caused initially by a bout of Covid back in March 2020.

    I can only suggest you pester your GP to get an urgent referral to a rheumatologist. In my health board area there is a system where GPs can refer patients to what is effectively a 2nd line A&E (it's called the Initial Assessment Unit) as a day visit patient and that's how I was diagnosed. The consultant who saw me started me on Sulfasalazine and Naproxen before I left the unit.

  • Molly28
    Molly28 Member Posts: 12
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    Thank you for sharing your experience and i'm so sorry you have to live with this condition.

    I have actually wondered about psoriatic arthritis. It wasn't something I'd heard of until very recently when looking online. I've doubted it though because I just assumed I'd need to have psoriasis. I had a rash type pain that became broken skin on my hip after my first bout of covid and it lasted weeks. The GP gave me a cream used to treat psoriasis. It's gone away and not come back but I never linked any of this because I didn't know psoriatic arthritis was a thing. My hands are very dry and randomly I need to take my rings off for a few weeks at a time because the skin under my rings gets all sore and bleeds but then it just disappears and im fine again. The GP said it'll just be all the extra hand washing and sanitiser but I've had it before the pandemic. I'm wondering if the swelling could be causing it though.

    My hands are in so much pain. Do you know if it is possible I could lose any nails? This worries me because one seems to be lifting so far up and I keep worrying I'll eventually lose it, and others are catching up. I wish I could get treatment soon. I've thought about sending an email to my local hospital patient affairs. I don't know who else to contact and can't get an appointment with my GP until 27th April.

  • Molly28
    Molly28 Member Posts: 12
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    Hi, I'm so sorry to hear you're going this this awful and very long process of getting some help too. I hope the letter speeds things up for you. I hadn't heard of that before so I'm definitely going to look into it. Thanks for sharing.

    It's so difficult waiting to find out if there are any answers. I feel so worn out but also feel I can't take time off or even go to occupational health through work because what do we even say when we've no idea what's wrong or even if there should be a diagnosis. It's such a stuck in limbo feeling.

    I hope your letter pushes things on for you. Let me know how you get on.

  • Molly28
    Molly28 Member Posts: 12
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    Thank you for sharing this information. It's good to know this and to be more informed for my next conversation with my GP. For a long time I've convinced myself I must be imagining this awful pain.

  • Molly28
    Molly28 Member Posts: 12
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    Thank you for sharing all this information. Being able to research ways to help and to get support will make such a difference. It will definitely keep me going at a time when I just feel like a useless mum and useless at my job. I need to stay positive and focused, so thank you.

  • VictoriaPlum
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    Hi there, so sorry you’re experiencing this. You’ve had a lot of comments with great advice. I’ve had rheumatoid arthritis for 11 years, it’s been a roller coaster! I’m finally on a drug that’s working (Abatacept) but my advice right in this moment are three key things:

    1) talk to your GP doctor (preferably specialist) about hormones and premenopause - don’t let them fob you off

    2) have a private consultation with a top rheumatologist (usually about £200 but worth it!) Then get referred back to nhs after

    3) make priority any practice that relaxes your nervous system such as guided meditation, yoga Nidra, sauna, hydrotherapy etc. And I mean prioritise this! The body has greater self healing power when it’s not in stress or high alert. I wish I had practiced these things more so much earlier in my diagnosis.

    All the best and well done for reaching out 🌸

  • jamieA
    jamieA Member Posts: 765
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    Hi @Molly28

    Yes I'd never heard of psoriatic arthritis until the doctor told me about it - despite me and 5 of my immediate family having psoriasis. You don't even need to be a psoriasis sufferer to get it, the doctor I saw initially said if there's any history of family members with psoriasis that's a pointer. My hands were really bad before diagnosis and treatment began. I couldn't close them or hold utensils - I couldn't butter my morning toast. Initially I was given a number of steroid injections over time and at one point was put on oral steroids - prednisolone - which helped short term allowing me to function. If you can't function then surely you need to be seen as an emergency or failing that I'd agree with @VictoriaPlum and book a private consultation to get you properly diagnosed and onto the first rung of the ladder. I found it was an uphill battle with both my GP and first rheumatologist and I'm really grateful to my wife and adult kids who really pushed for me to be seen and treated - I couldn't have done it without them as this disease really drained my energy. Initially I booked to see a rheumatologist privately but events overtook that as I was admitted to hospital. It was £199 for the initial consultation - with a NHS rheumatologist from the same clinic I'm now with!

    I hope you get treated and stabilised soon.

  • Molly28
    Molly28 Member Posts: 12
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    Thank you so much for this advice. I've sent an email to patient affairs and I'll post a copy to my GP too.

  • Beeper
    Beeper Member Posts: 8
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    Hi Molly28,

    Just an update to let you know that I have managed to get a face to face appointment after a 7 month wait!

    I don't know if it's because of the expedite letter or just good luck on the day. I phoned the rheumatology outpatients department to see if they'd got the expedite letter from the GP and politely explained my situation. The lady I spoke to was very understanding and she offered me a ' cancellation' there and then for the following week. I took it!

    I'm not sure what the outcome will be, I was originally referred because I have family history of psoriatic arthritis, but the hospital seem more concerned about other symptoms that could be systemic sclerosis. I'm just glad I'm finally going to be seen.

    Anyway, I would definitely recommend that you check in regularly with the outpatients department to see where you are on the list and also ask for an expedite letter if you can. It seems to have worked for me, otherwise I would have been waiting another 4-5 months.

    Good luck

  • Molly28
    Molly28 Member Posts: 12
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    That's great news! Have you had your appointment yet? If so, I hope it went well. I haven't checked on on here for a while so I didn't notice your message.

    I wrote to patient affairs at my local hospital and got a response from the rheumatologist quite quickly. It turns out the rheumatologist had previously written to my gp requesting a full examination face to face with my gp to then provide more information so the rheumatologist could decide on how urgent my situation was and my gp hadn't responded; that would be because my gp didn't do this, and I had spoken to my gp after this request had been sent to her by the rheumatologist; she never said a word. So I put my concerns in writing to my gp and had a face to face appointment within days and she said she would write to the rheumatologist and explain why my referral is urgent following her examination. She came across as though she didn't know about the request for more information and said what an awful experience I've had, I actually couldnt believe it.


    Anyway, I've very quickly received an appointment to see the rheumatologist on 25th May after 7 months since the referral first went in. If I hadn't written to patient affairs I'm sure I'd still be waiting.