Where do I go from here

Suzanne

Hello

My knee has been steadily getting worse over the last 3 months so I was sent for an x-ray and prescribed naproxen. Last week my knee gave way and I fell over - onto my knees. I could barely walk and couldn’t drive so my niece took me to the doctors. He told me I have wear and tear on the knee and spurs growing and arthritis. He also told me that I would probably need a knee replacement but he couldn’t even refer me until my BMI is below 35 due to new criteria. He suggested cocodamol for the pain until I reminded him I’m allergic to codeine so he then suggested paracetamol. I cannot drive at the moment, our nearest bus stop is a mile away and I am caring for my 84 year old mother. My husband is visiting relatives in Australia for 3 weeks and it will be easier when he gets back but at the moment I am feeling a bit abandoned by the NHS. I’m trying to be positive and keep moving but walking is painful. I’ve lost 7 lb this week and I’m feeling quite motivated. The naproxen isn’t working so I’ve stopped taking it. At night I wake up every hour in pain so I’m hardly sleeping. Where do I go from here?

[Deleted User]

Hi Suzanne,

Welcome to the forum, it's very hard to be told you need something and in the next breath told you can't have it because of your weight, which possibly went up as you got less mobile!

Losing half a stone is great, keeping going is hard but you have a goal ahead so lots of motivation. We have lots of forum members who have done well - lots of experience and support for you.

It might help you to have a chat to our helplines, they can help you see a way forward, it's 0808 800 4050.

Here's a link to the Arthritis Care booklet 'Living with arthritis'
https://www.arthritiscare.org.uk/assets/000/001/893/OA_2017_Update_original.pdf?1510589554

Do post soon to let us know how you are getting on

Take care
Yvonne x

wazz42

Hi Suzanne,

I feel for you as I know that pain well. I've just (3 months ago) had a knee replacement and for me 'Daisy new knee' is so much better than the original. I also worried about weight, BMI was high for me too, borderline but I was worried in the wait if it went up ...

Pain relief is important. There are stronger pain meds that your GP can prescribe, paracetamol is the base line, but as its not worked go back and ask again. There are many anti-inflammatory drugs too, like Naproxen, you can try and I take Amitrypteline at night as a muscle relaxant. Ask how you get in touch with physio too.

So what helped me, well resting with my leg up was good, as was warmth, I used a tens machine too, very low power electricity on both sides of the joint sort of confuses the pain, well that's how I thought of it. Physio was great, especially once I reached the waiting stage. The exercises you learn are the same ones you get after your replacement. No getting away from it, they hurt. But it won't make old knee worse and those strong muscles help new knee beyond measure. I did the exercises on both knees and am waiting on a replacement for that one now but I'm in a much better state than I was with my first wait.

Well done on losing weight - you are half way to a stone already!

I used a low carb high fat diet. My oh and I both lost weight and my Mum, bless her dieted too via low calories. We each lost 3 stone, I have more to lose, I put on 9 or so pounds around Christmas up to now, I'm back on the diet now, though I was still using the same principles I'd learned, and losing again, planning to get back to original and then lose another stone. Look at the diabetes.co.uk website if you want more info.

I use a stick to get around, part necessity, part fear of falling, part to let others know I'm a bit wobbly, two if needed. I plan more carefully, when I was in a house I only went upstairs once - we had a downstairs loo and I piled things to go up on a stair ready for a visitor, family or myself to take up at bedtime.

Does your Mum live nearby? Maybe she could stay with you, or you with her until your husband gets back?

Sending love and some spare energy
Wazz x

Suzanne

Thank you soooooo much for all the positive comments and very welcome advice. It’s very comforting to realise that there are so many other people who have dealt with this and are getting on with it. Reading a lot of the comments on here I realise that there are a lot of people who are in a far worse situation than me. I think my daughter has a tens machine and I will be borrowing that. I will go back to the doctor and try and discuss alternative pain killers and physio.

Hopefully in 6 months time I can hobble back into the surgery and tell him ok done that so now refer me. I also hope that eventually I will be in a position to offer advice to new members in the same way that you have all done.

It’s a sunny day so onwards and upwards

stickywicket

Hello Suzanne and welcome from me too.

You've had some pretty comprehensive replies there from Mod Yvonne and Wazz so I'll try not to repeat anything though I would endorse all they say.

Firstly, well done on losing the weight. We know it can be done with arthritis because we have several real successes on here. One lady, wheelchair-bound, lost 5 stones. It does take a lot of determination, though, especially when pain is making its presence felt.

The NHS is strapped for cash so weight and age are now factors in replacement joint surgery, weight because knee replacements are more successful if they don't have to suppórt a lot of weight and age because the younger the age at replacement the more likely it is that a second one will be needed and that's a bigger operation.
Many people with a diagnosis of OA feel a bit abandoned. The NHS can offer physio, pain relief (I will NOT call them painkillers as they don't) and not much more until surgery becomes an option.

I'm not sure what to say about the need to care for your mother as I don't know what you do, how often or how far you live from each other. I do think it would be a good idea to discuss this with our Helpline people on Monday. Before my TKRs (and after) I had my young sons to care for (I've had RA since I was 15). It was difficult. I had to pace myself, forget about tidiness (and sometimes cleanliness) and accept the need for ready meals or takeaways sometimes. But they were, at least, living with me and my husband, though at work all day, was very supportive. All I can suggest is that you keep a flexible mind and be prepared to think out of the box if only until your husband gets back. Of course, this will entail your mother's acceptance and 80yr olds can be feisty and determined but it's in her interests too that you remain as mobile as possible.

Good luck with the whole thing and do get back to us and let us know what you think of our suggestions and how you're doing.

dreamdaisy

Hello, it's nice to meet you but I am sorry you have had to find us.

There are around ten million arthritics in the UK, with the majority having OA so you are far from alone. It is GPs that deal with it but, in truth, there is little they can offer apart from pain relief, maybe an anti-inflammatory medication and referral to physio for specific exercises which must be regularly done. It can take years for joints to reach the point where the NHS will consider a replacement so, in the meantime, it's up to us to make the best of things.

I began twenty-two years ago so have had time to adjust, for you this must be very new and unsettling. Like everyone else with arthritis we have to grit our teeth and get on with things as best we can but developing the skills and mental strength to do so is far from easy. Walking is painful, driving can be but I coped when it was just one knee that was affected and I still cope today because I have bought aids, changed my car, in fact moved house to accommodate the needs of the diseases (I have an auto-immune arthritis which led to the OA). We all get it on here because we've all got it, we have lived with it for years, we have carried on raising families, caring for loved ones, work, because if you don't the arthritis wins and that isn't a good option.

I hope you find the forum to be of interest, more people look in on the Living with Arthritis board where there are many threads about the challenges people are facing and how they are dealing with them. You might also find The Spoon Theory and There's a Gorilla in my House to be interesting reads, they're web articles about coping with long-term conditions.

I wish you well. DD