No diagnosis

Dear Team .

I live in Burwell Cambridgeshire and I know I have OA as I’ve had a knee MRI last year and the orthopaedic surgeon said I had osteomalacia in my right knee cap , a torn meniscus following a fall and OA in the bony ends of femur and tibia. I also get lots of pain in both my thumb joints, my left big toe joint and have right elbow tendinitis.

However I have had nothing diagnosed as such for these and it’s just assumed you have OA from my clinical history as none of my bloods came back with any inflammatory markers . I find there is nowhere to turn for support or advice with a diagnosis of OA . I just get told” oh it’s just arthritis “ and I get the feeling I should just get in with it and suffer in silence … but it’s really impacting on lots of areas of my life . If I garden ( which I love ) for even half an hour nowadays I have terrible pain and stiffness in my joints and need a hot bath . I can’t open jars , packets or bottles abd have bought an aid to help with that and it affects me going up and down stairs , in and out of the car and getting up from a chair .

I would just love to talk to others who have been thru the same and ti hear what they do to cope and live with this much pain and inability to use my thumbs at times. It’s especially bad at times when the weather is wet or a storm is coming . Pain killers don’t seem to work at all . Heat is good . Im 58 and a nurse having worked full time for past 5 yrs and have just gone part time ( which is great after the past 3 yrs in NHS…)

Apologies if I seem to be moaning but I have found so little support with OA and I just feel like I’ve just got to get on with it and learn to live with the pain and frustration of its limitations on my ( once very active ) life

kind regards

Trish

Comments

  • Hi@Trishgem

    Thanks for you post to the Helpline. Sorry to hear that OA is affecting your hands and daily pleasures such as gardening. An option to consider is requesting a referral to a hand clinic. They will of course examine and investigate, to check diagnosis. They will be able to advise on self-management and options.

    For mutual support you may want to post on the living with arthritis part of the forum.

    I wonder if you'd like a chat with us here at the Helpline - it's so much fuller than posting and typing. Being heard can be really powerful. 0800 5200520 Mon-Fri 9am-6pm

    Hand and wrist pain | Causes, exercises, treatments (versusarthritis.org)

    All the best

    Guy

  • DebbieL
    DebbieL Member Posts: 63

    Hi Trish. I’m 55 and was diagnosed with Osteoarthritis in my lower spine a couple of years ago. I had a MRI scan and on phoning for the results was given the diagnosis. No support, no follow up doctors appointment no nothing. I was devastated- felt like I had “nowhere to go” just reduced mobility and pain stretching into the years ahead. I wrote an email of complaint to my doctor and was surprised with the results. I got an immediate appointment with my GP and he talked through my pain relief options. He also referred me to a specialist. The specialist gave me options of physio, pain management or wellbeing. I went for physio. The physio was a specialist in back issues. The previous NHS physios had not helped at all, but this one made a massive difference. He gave me exercises and the confidence to start exercising again. I do ballet, tap and stretch classes, walking and cycling . I rarely need painkillers during the day now but still need them every night. The physio said the more I move in the day the better I will sleep and he was right . I still have bad days but I am a lot more active and have less pain now than when I was first diagnosed. I’ve learned what I can do and what I can’t by trial and error. Medication was also trial and error till I found a combination that suited me. I use heat pads too. I also have a 4inch memory foam mattress topper which is really comfortable and gentle in my hips.

    Push for a referral, specialist help really can make a difference. I hope you find a way forward to less pain and better mobility.

    Take care

    Debbie