I'm confused!

WelshSquirrel

Hi,

I'm just wondering what it's reasonable to expect when diagnosed with OA in the UK?

A series of x-rays have shown that I have it in my big toes, cervical and lumbar spine and thumb joints. At the moment our surgery is staffed by a series of locums as the previous partners retired at the same time.

I am on a low dose of amitriptyline, which is helpful. Then one GP recommended a short course of anti-inflammatories because of a flare-up in my neck causing pain down to my elbow. Another stopped this after 2 weeks because I wasn't positive whether or not it was helping. I have been given co-dydramol for when the pain is bad, but another locum questioned whether I need it - she thinks that at 50 I am young to be on them regularly, but OA is, of course, no respecter of age! I have been told to take paracetamol everyday, and also that it could damage my liver if I do so regularly.

I am obviously not expecting you to give me medical advice, but I was wondering if this is usual for someone in my situation and if there is any pain medication known to be particularly good for OA? Like most people with arthritis, I'm not asking for pain relief for no good reason, and I certainly have no wish to be on medication for the rest of my life, but the pain is beginning to get me down without it. I'm not often in agony in any one place, but severe to moderate pain in so many places certainly gets trying! And, of course, by the time I get an appointment any flare has usually settled down so they don't see me at my worst!

I have been promised physio but not been sent an appointment (yet!) but have not been given the option of seeing a hospital specialist as (or so I was told) they are only interested in seeing people with RA unless and until your OA is severe enough to need surgery. Is this true?

Any help or support you can give will be gratefully received!
Thanks
Naomi

stickywicket

Hi Naomi. I'm not a member of the Helpline team, just an ordinary forum member but it can be quiet round here at weekends so here are some thoughts.

Firstly, these are the NICE guidelines for treatment of OA. https://cks.nice.org.uk/osteoarthritis#!scenario .Personally, I'd take them with a few grains of salt as I feel it's 'reasonable to expect' them just as it's reasonable to expect children to be educated in schools with roofs that don't leak and to expect people in full time employment not to need foodbanks but don't get me started

I have always found physio exercises to be of huge importance for my RA and OA. Try chasing up your appointment. They do 'get lost' sometimes and, if you are able, say you could take a cancellation at short notice. Meanwhile, you could try some of these https://www.versusarthritis.org/about-arthritis/managing-symptoms/exercise/

You say (and I agree with your wishes) that you don't want to be on medication for the rest of your life but you might have to give in a bit there. That's certainly the ideal and, if you can manage by taking it only now and then, it seems to me to be a good way to go. But there is certainly a point at which the meds work better if we take them regularly.

I don't think there's a med going which doesn't have potential side effects. Paracetamol is one of the safest there is but lethal if the safe dose is abused. All pain relief tends to produce tolerance if taken regularly ie to get the same effect we need higher doses or stronger 'painkillers'. (Many of us call them paindullers for obvious reasons. ) Anti-inflammatories tend to be the 'go to' meds for OA. Unlike straight painkillers, they reduce the pain by reducing the inflammation but they can be harsh on the stomach so, if taking them regularly, we should also be prescribed a stomach-protecting med. Omeprazole and lansoprazole are the usual ones. Amitriptyline's 'normal' use is as an anti-depressant but, at lower doses, is also very effective for neuropathic pain.

As for hospital specialists – rheumatologists deal with auto-immune forms of arthritis eg rheumatoid, psoriatic, ankylosing spondylitis, not OA. Normally, for OA, the specialist is a surgeon and we don't get referred until there's a chance we might need surgery. It is the GP's job to deal with us until then.

There are specialist Pain Clinics and you could ask to be referred to one. I think they get a bit of a mixed press on here.

I hope that gives you something to work on until the Helpline team can reply to your thread

helpline_team

Hi Naomi.

Thanks for your post and apologies for the delay in responding. I’m sorry to hear you are experiencing pain.

Naomi without a conversation I would be unable to provide you with more specific information or advice on what might help you. Therefore I would encourage you to give us a call on the Versus Arthritis Helpline 0800 520 0520 (free phone, weekdays 9am- 8pm) for an informal chat where you can talk with one of us here in confidence about what is going on for you, and we can help you explore more specific options of self-management and treatment options.

Alternetively you will find some very good information about living with osteoarthritis, including pain-management information on the Versus Arthritis website www.versusarthritis.org in the About Arthritis section.

Hope this helps.
Best wishes,

Bharti
Helpline Advisor

WelshSquirrel

Hi,

Thanks both for all your suggestions and understanding! I will try to ring the helpline sometime soon, probably in an early evening after work. I've had a good look through the NICE guidelines too.

I suppose the reason I'd like to see an OA specialist is, at least partly, that I have seen so many GPs and physios, each with slightly (or even greatly) differing views on what's going on in my joints and the surrounding soft tissue and varied suggestions as to the best way forward, that it would be enormously helpful to find someone (an ESP physio would be good if a consultant isn't possible) with the specialist knowledge to give me a definitive answer. I have also had numerous x rays, only to be told that (obviously!) they can only show the probs with the bones, not the effects this may be having on soft tissues such as tendons and nerves, so a scan that made things clearer that way seems an obvious way forward, but whatever the pain levels, numbness in extremities, etc, I have, and no matter how bad this gets, it seems that this will not be possible. I am particularly concerned as I have read online that if symptoms such as finger tingling, hand numbness, etc, are allowed to continue damage can eventually become irreversible. I don't believe everything I read online, of course, but it seems that I have to get to the point where this may have happened, and where, therefore, my health and abilities may have deteriorated to the point where they are seriously impacting on my life and my ability to work before anyone is interested in even finding out exactly what is going on. This seems ludicrous, and quite possibly, more expensive for the NHS and for the DWP if I can no longer work in the long run.

Sorry - rant over! It's good to let off steam where you know you'll be understood sometimes! I'll try to call the helpline sometime soon.
Thanks
Naomi

WelshSquirrel

Ps I have been to a Pain Clinic - I'd agree with those who give them a bad press - never been so patronised in my life! :shock: