Facing who knows what

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jan1ce
jan1ce Member Posts: 14
edited 28. Nov 2023, 14:06 in Living with arthritis

I'm Janice! I'm an urban explorer and describe myself as 'slightly weird but always sweet'. Nothing makes me happier than being out and about with my camera taking photos of my colourful urban environment wherever I am. I've had arthritis for maybe 20 years now - mainly in my left knee. Ten years ago I tore my meniscus (although it was diagnosed only by manipulation, no scan) and since then things have been difficult. There were good days and bad days, then more bad than good, until I noticed no good days at all among the bad. About two months ago I did a balance assessment for a fitness class, which involved standing on each leg in turn to see how long I could balance. I managed the same length for both, but the next day I couldn't put any weight on the left leg at all, not even for a second. Scary! Eventually I called the doctor when it didn't resolve - I noticed only a small improvement. They referred to me to an NHS Physio clinic (I am waiting to be contacted) and I insisted they support me in the meantime. The practice physio called me and arranged an XRay. This showed that my OA had progressed to severe. Meanwhile, I can't really walk any distance, even with a crutch (I use just one) and have said that until I see a physio and have them actually put their hands on, I'm reluctant to do any exercise. I now have no idea how long a wait I have, what - if anything - they can do for me. Lockdown is hard enough but I fear going out at all - I have three flights of stairs to navigate to get back into my flat again after I've determined I have had enough,. So what to do? What to expect? How can I bridge the gap between now and my first appointment? Between that appointment and getting any sort of fix? That's my OA story in a nutshell. Hoping to get some advice and support here. Thanks for listening.

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  • Lilymary
    Lilymary Member Posts: 1,740
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    Hi @jan1ce , sorry to hear you're in so much pain. I understand from my ortho surgeon that this can happen, ie OA can suddenly get much worse. In my case it was a mildly wingeing leg that turned to full-on drama queen after a tumble onto my backside. Xray showed severe OA and I was put straight onto the list for replacement.

    In my case we suspect the tumble knocked off what was left of my cartilage which then wreaked havoc in the joint before either disappearing altogether or sulking in a corner. After the initial flare up that lasted about 3 months (I wish I'd kept a diary during lockdown/OA drama), I was left with very limited mobility that has got much worse in recent months, as it's bone on bone, so is gradually wearing away/dropping to bits even more, so I'm unable to walk outside without a stick and sometimes have to use it in the house now.

    Now if I try to do anything remotely "normal", while it may not hurt at the time (eg pottering in the garden) I will be in agony for 2-4 days afterwards. That's probably what set your knee off after your fitness class, as it will have inflamed the joint. You probably need to modify your exercises to avoid high impact and excessive stretching - exercises for "opening up joints" is not ideal for arthritic bones.

    There are some exercises you can do for knees which may help support the joint:

    https://www.versusarthritis.org/about-arthritis/exercising-with-arthritis/exercises-for-healthy-joints/exercises-for-the-knees/

    There are also pain management techniques you may find useful.

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

    But if you are pretty much bone on bone there's only a limit to what a physio can achieve. Steroid injections may help, but it may be time to start considering the surgical option. I would ask for referral to a rheumatologist, or at the very least a pain clinic to review your meds. You can't carry on like this just toughing it out if you can only get around using a crutch, when there are drug treatments and surgical options that could be tried.

    If you are determined to try the physio first, you could consider going private, as the NHS is still in turmoil. Mine is around £45 per session, and worth it to avoid a six month wait for only six sessions from the NHS (which is the current offer where I am).

  • jan1ce
    jan1ce Member Posts: 14
    edited 5. Apr 2021, 08:34
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    Thanks, @Lilymary ! I have so many questions. NHS physio I agree that it's not ideal, but I was hoping it might be a stepping stone to the other things. I asked about Pain Clinic and was told 'not appropriate' and at no time during this long journey has a rheumatologist been suggested, although I've asked if I could see one - ignored. Is this normal? Should a GP be the first and only port of call? I went to a private clinic for a couple of visits but need something closer to home, especially right now. A NSAID was also briefly spoken about, but I've always found the stomach upset more difficult to handle than the pain - so NO! Pandemic I understand, but this has been going on since 2010 and exercise has been the only thing talked about. There must be more! It's what I'm here to find out about.

  • Lilymary
    Lilymary Member Posts: 1,740
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    Unfortunately they have "procedures" they have to follow before they refer you. This means trying the simple, non-invasive stuff first such as xray, pain relief, physio, steroid injection(s), then when they've run out of options, eventually surgery. Someone on this site wisely told me (I suspect a retired surgeon) that orthopedic surgery is basically extreme pain relief, and that all other options have to be exhausted before they resort to this, as while it's now fairly routine, it is major surgery, and comes with the usual potential complications.

    I normally never take NSAIDs for the same reason as you but have been taking them for the past year with Omeprazole (on prescription) and have had no problems. My 92 yr old mother had allergic reactions to omeprazole and ranitidine so just uses Gaviscon Advance and finds it works fine counteracting the anti-inflammatories. You could perhaps give it a try?

    At the end of the day, some GPs are better than others at (a) taking pain seriously and (b) referring you u p to the next level. I find it hard to understand why they are being so dismissive when you can only get around with crutches and in extreme pain. However, hopefully this is "just" a flare up and will settle down a bit in time to more manageable levels . In your position I'd give the private physio option a try if it will get you mobile quicker, although they may also say it needs time to recover.

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