When was your diagnosis - How did you feel?

Brynmor Member Posts: 1,755
edited 28. Nov 2023, 14:07 in Living with arthritis

When were you first diagnosed with arthritis or a musculoskeletal condition?

Join in our first ever poll with the Online Community to tell us how long it has been since your first diagnosis.

Add how you felt on learning about your diagnosis in the Comments.



  • stickywicket
    stickywicket Member Posts: 27,726

    I felt pleased and 'I told you so' as my Mum & Dad thought I was making a big fuss about mere chilblains. At 15 I was blissfully ignorant. I have become much less ignorant now😉

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • jamieA
    jamieA Member Posts: 745

    I was completely floored by the doctor when he told me. I wasn't even seeing a rheumatologist but the 2nd line A&E. I'd gone for a 2nd time in a month to get my swollen knee aspirated and be given a steroid injection. The first doctor I saw had been unable to do the procedure and so called in her boss. I was lying flat on the treatment table looking up at the ceiling while the boss tried to aspirate my knee whilst having a conversation with me. I told him my hands were now causing me issues and he suddenly appeared in my vision and asked if by any chance I had psoriasis. When I said yes he finished the aspiration and injection, looked at my hands and told me he thought I had psoriatic arthritis. He then explained that although he was the head of the 2nd line A&E unit he previously had been a professor of rheumatology. He kept me there, made a few phone calls, came back with a months supply of Naproxen and Sulfasalazine and told me I needed to see a rheumatologist quickly.

    And down the rabbit hole I tumbled!

  • Lilymary
    Lilymary Member Posts: 1,743

    I'd had achy joints in cold weather all my life and thought everyone did till someone said I had rheumatism, when I was 12. I found so long as I kept my feet and legs warm all the time I was ok.

    I'd had various random pains in my left leg for years, my physio suspected I might have "a bit of arthritis in my hip" but the GP didn't think it was bad enough to xray. When they finally xrayed after a fall a few months later, my hip was already so bad I went straight onto the list for a new one. I had no idea I had osteoarthritis at all, and the GP was confused by my surprise (rather than relief) that he was referring me for a new hip. I was devastated. I went from fit and able to constant pain and drastically reduced mobility in just a few months. Then the pain really got going .... and then came lockdown. and it just got worse and worse, rapidly, even with maximum pain relief meds. A year later it took me an hour to walk a mile round my village, in terrible pain, and I just caved in and went private, rather than wait a further 18 months for a new hip.

  • Fif
    Fif Member Posts: 115

    This came out of the blue. Suddenly my hands became swollen for no apparent reason. I don't like going to the doctor for something I thought would sort itself so I carried on for a few weeks, but when things didn't get any better and the pain got worse l phoned for an appointment. As face to face appointments had to go through a triage system because of covid, I first spoke to the duty doctor on the phone. He said to come in and see practice nurse in first instance and she would consult doctor if needed. The practice nurse didn't really know what the problem was, so the doctor arrived. He had a good look, said he wasn't certain and wrote a letter for me to be seen at A&E because he thought I needed tests to get to the bottom of it. So, the same morning I was in the hospital having a range of tests, chest xray, cardio etc. Eventually I was told that the most likely cause was RA and that I would be referred straight away. I was prescribed with naproxen in the meantime. This was last October. I saw the rheumatologist at the beginning of November and he confirmed the diagnosis, gave me a steroid injection and set out next steps. Never having had a serious illness in my life (I'm 71) and being very fit and active this has come as a complete shock and I must admit I have struggled to come to terms with it. I've now been on methotrexate since the beginning of December and inflammatory indicators have been reducing, but I'm a long way from being able to do what I did before. I'm trying to stay positive and keep making myself do what I can. Both the physiotherapist and the occupational therapist seem to think I'm doing OK but it's frustrating having to struggle with things I used to do without thinking. I do feel that I'm in good hands though and our NHS has been fantastic considering the strain the pandemic has put on the system.

  • Fran54
    Fran54 Member Posts: 214

    It was just at the start of lockdown, when we were allowed to exercise outdoors for up to one hour. During this time over several months, I found that my right knee and lower right leg was aching particularly during my walking. I also had numbness/tingling like pins and needles in my right foot. Spoke to a Doctor who thought it was Vit. D deficiency and prescribed Fenbid Gel. As time went on I found that the pain was limiting my walking and gardening. I also had slight lower back pain. I spoke to a Doctor again in July 2020 and thought I had sciatica.

    I was given Naproxen and Omeprazole. Fast forward to June 2021, when the pain was getting worse and my mobility less and less, I spoke to my Doctor and suggested I would like to have my knee x-rayed. The result came back that I had mild arthritis in my right knee.

    To be honest, I thought that there was something more than back pain and was relieved in a way to get the condition confirmed. It was only a little while later that it hit me that this was something that I would have to endure for the rest of my life. Although I told close family members, I still felt depressed and had negative thoughts that I would never be able to do things like gardening and walking again.

    Now further on, I have been given physio exercises and try to do them most days. Also, finding this website and learning from people's experiences on here how I can try and keep myself positive has been a great help. I am now trying to look forward to what I can do and not look back on what I cannot do anymore. I also pace myself with everyday activities and be kind to myself.

  • nicholaj
    nicholaj Member Posts: 64

    Suddenly hurt in lots of joints last May. Thought I had a virus at first. However X-rays showed severe degeneration in lower back, hips and knees.

    Felt very despondent as went from walking over 5 miles up hill and down dale to hurting even when climbing stairs. Feel a sense of loss and weary of being in constant pain.

  • Mike1
    Mike1 Member Posts: 1,992

    I had a mixture of feelings when I was diagnosed with Degenerative Facet Joint Disease about 15 years ago; firstly I was shattered as the Consultant said that I would end up in a wheelchair but he could not say when and all I could see was an end to the physical aspects of my life. I was also surprisingly happy that I had at last a diagnosis explaining the pain that I was in. A year or so later I was diagnosed with OA in my hands and wrists, since then it has spread to all of my joints and the Consultant was right - I use a wheelchair!

  • Jona
    Jona Member Posts: 406

    At first I felt vilified that after being told it was in my head and oh well it’s expected because of your age then after a while I was angry at the sheer lack of care and understanding now I’m just disgusted at the complete segregation I wish the medical profession and people would realise just how strong a person has to be to deal with so much pain instead of hurry up your in the way

  • Rosemary1
    Rosemary1 Member Posts: 5

    This isn’t really relevant to my synovial chondromatosis as the bits can be removed surgically so reducing the swollen knee.But thank you for your reply. So sorry you felt angry.

  • Loggiemod
    Loggiemod Member Posts: 229

    I have had arthritis in my left thumb for many years - probably double figures now. But Christmas Eve 2020 as I took early Retirment my right hand got it! Couldn't believe it. For a couple of months I had a lot of pain in both hands. Then it subsided a bit and went back down to what I call manageable, but the last couple of weeks has flared up again.

  • Rosemary1
    Rosemary1 Member Posts: 5

    This is not relevant to my condition.


  • Arthuritis
    Arthuritis Member Posts: 445
    edited 22. Feb 2022, 15:58

    @nicholaj @Jona @Fif Your experience seems similar to mine, in terms of surprise onset of symptoms, well, surprise at what it was, not the very slow creep up with tiny initial signs slowly building up.

    [Text deleted, negative comments on the NHS as a whole are not allowed]

    [Text moved, this paragraph was not related to this discussion so has been moved to a new discussion]

    Yvonne_H Admin

  • JenHB
    JenHB Member Posts: 137

    I saw a sports physio end of August with a very swollen knee (but no pain, have always been very active and was meant to be doing a HM at the end of September), which resulted in her writing to my GP, having blood tests and being referred to rheumatology. I had my knees aspirated and steroids put in but was left as they would keep an eye on it as although rheumatoid factor was high nothing else was acting like RA. Fast forward to a couple of weeks ago and noticed had slight stiffness and slightly reduced movement in knees and a slightly swollen knuckle. Left a message with the rheumatology advice line and had a call back the next working day asking me to come in. Have now had more blood tests and a chest xray and will be seeing the methotrexate nurse specialist in a fortnight before starting treatment. Currently feel like I'm in limbo and would much rather just get started on treatment!

  • Jona
    Jona Member Posts: 406

    im afraid I’ve been treated very badly by most of clinicians I’ve seen made a complaint once and was treated like rubbish after that too so my faith in them has gone now

  • Blue22
    Blue22 Member Posts: 2

    Hi thank you for the add to your group I was diagnose with arthritis 15 years ago still not sure about thing.

  • Baloo
    Baloo Member Posts: 434
    edited 24. Feb 2022, 01:20

    Hopefully a short read. Working from home to practice social distancing was a big change. No more commuting, and no more 10k steps a day exercise. A short while in I had a stressful night at home and my legs seized up. To get out of bed I used a rope then my arms seized up. I was hospitalised for four days with all kinds of tests being done. This felt like falling into a nest of angels. I was diagnosed Seronegative Arthritis (nothing shows up in blood tests). This feeling is harder to describe, I report the latest version of the nuisance (eventually), follow the rheumatologist superior advise, and get on with nursing myself along.

  • AnnR
    AnnR Member Posts: 52

    2 yrs ago I was fit and fairly active for 67. Then I experienced pain in my groin which I thought was a pulled muscle. Eventually I couldn’t walk the dog and I contacted the Dr. We were now in lockdown so I was referred to a physiotherapist by phone! He sent exercises by post and rang me up ever 2 weeks. As things got no better I asked for an X-ray. When this came back, the GP was shocked to see extreme deterioration in my hip and referred me to the hip replacement team.

    I admit I was stunned. I hadn’t ever thought of arthritis and that it was so bad. When I saw the consultant whilst he was very polite and showed me what needed to be done he was quite matter of fact and had no idea what a shock this all was. Then I was hit with another blow.

    I’d had a ‘dodgy’ shoulder for years and had injections but it was getting worse. I eventually persuaded the GP to X-ray it and of course it was falling apart with arthritis. I saw a consultant within 2 weeks and am preparing for surgery to replace the shoulder within weeks. I’m in so much pain. I have fibromyalgia and a back littered with arthritis. I’m on slow release morphine and still feel sad at the way it’s all gone and I’ve been reduced from an active lady to an old lady, struggling to walk, confined to my home and just waiting for it all to happen. No idea when I’ll get the hip replacement.

    I feel fed up and in pain

  • Jona
    Jona Member Posts: 406

    Hello @AnnR ,

    It is rather a shock I’m so sorry for your pain I too feel like I’ve gone from middle age to old age rather suddenly it is horrible, I hope you get your op soon

    take care

    Jona 💐💐😊

  • Lynnski
    Lynnski Member Posts: 5

    When arthritis was mentioned after an x-ray I had mixed feelings, mostly relief at first as it meant I wasn't exaggerating or making it up (the pain!), but then the MRI showed it was quite extensive and now I'm fed up and sore. I'm only 47 (48 in May) so not exactly old, and to think I might need to put up with this for the rest of my life is quite overwhelming and depressing. I'm very glad I found this community!!

  • JudeM
    JudeM Member Posts: 6

    I’m in exactly the same position. Just been diagnosed with osteo arthritis of the neck. 10 weeks now feeling like a vulture with a sore neck. Having physio, using creams, having acupuncture etc etc. starts to feel a bit better and I get my hopes up and then goes back again. I think is this it now, I will have to live with this for the rest of my life!!!

  • Coddfish
    Coddfish Member Posts: 85

    I had had stiffness in my right hip since around 2012. The physio I saw then said there might be some arthritis in it, but I would probably be able to manage it with exercise. Eventually, and by then in my late 50s, I took up running via Couch to 5k, and developed a bit of an addiction to parkrun, alongside Aqua classes, swimming, and lifting weights. By the end of 2019, my running pace was on the decline but I put it down to age. The stiffness was worse, particularly on moving between sitting and standing (and vice versa). Getting out of the car became a huge faff. Then came the 2020 lockdown and just about all my ways of managing it became more difficult to access. I was on the brink of seeing someone about it when it started to improve following the reopening of gyms / pools. Of course it was temporary and the 2021 lockdown saw me in trouble again. The problem manifested in some difficulty walking, and a seemingly endless set of running injuries. By May 2021, I realised I wouldn’t be able to run again unless I did something. Running has been a major benefit to my physical and mental health, so this was rock bottom for me. I went back to my physiotherapist, got referred (privately) to a hip surgeon, got x-rays, diagnosis, and eventually, in September 2021, my wonderful shiny new hip. I have some arthritis in the other hip, but it’s not a major problem at present, also in a couple of fingers.

  • raphacondor
    raphacondor Member Posts: 21
    edited 7. Mar 2022, 15:07

    Diagnosed via phone call, left in pain-still in pain. No clear direction, I still think my problem in my knee is not OA but other prognosis. The pain is to severe.

  • Nic2022
    Nic2022 Member Posts: 3

    I was diagnosed with spinal osteoarthritis and spondylosis,I was left with that diagnosis with no direction as to go from there from my GP

  • PeterJ
    PeterJ Administrator Posts: 906
    edited 8. Mar 2022, 11:52

    Hello @Nic2022 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 has spinal osteoarthritis and spondylosis and are looking for some guidance. Have you had a look at our website? It contains a lot of useful information and I would suggest having a look. To help I've put a couple of links in below.

    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 thoughts and experiences as well.

    With very best wishes

    Peter (moderator)

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

  • UneJ
    UneJ Member Posts: 1
    edited 7. Mar 2022, 15:08

    My shoulder and knee right side and both feet. My shoulder is very painful it disturbs my sleep