What do I do next?

bloodredroses

I was diagnosed following a nuclear bone scan, with OA in my knees last April.
It was unexpected as I was being tested to find out what the calf pain I'd had was (turns out it was a tibial stress fracture) and I had just one 10 minute follow up appointment with the specialist who was running late and basicly discharged me as there was nothing that could be done further.

During that appointment I had no questions to ask as I hadn't expected the result I had and being 29 I thought anything I got could be repairable- I got from the specialist it would only ever get worse and was told never to run again. I had to be honest and said I didn't think I could do that (long story involving exercise compulsion/addiction and depression- its a big part of how I manage). I was told injections were not something they liked or wanted to do and that surgery was only ever 50/50 and it wasn't worth the risk.

It didn't hurt at that time and I walked away thinking it would be fine and I'd be fine and the results were just OTT to try and get me to stop exercising. I spoke to sports massage students not long after and they noted the 'juddering' and said it was more obvious then I felt it was.

About a month ago though I am starting to get knee pain. I have been talking ibuprofen but it doesn't seem to make any difference (it doesn't for anything though) and I'm wondering what I should do. I have over the past year cut back on the exercise anyway and its not made any difference, I run/cycle/use gym machines a total of 5-6 hours a week plus an hour of yoga and added stretching. I don't think my exercise is a bad thing despite what I have been told as I constantly see exercise being suggested here as a good thing. I don't over do it like I used to.

What do I do? Do I see my GP? They seem not to help with most things- just refer. I have seen NHS physios in the past and they take a look at my notes and always seem to assume I am over exercising, lying about what I do and they seem to not be at all helpful -though take loads of notes. I am just repeatedly told 'don't run' and then at the same time 'oh exercise is brilliant but just swim.' (I hate swimming a great deal!) I doubt my GP can offer any suggestions as even for the most simple things the response I get back is "what would you like me to do about it" and if I say I don't know they don't seem to either.

HELP!

helpline_team

Hello,

Thank you for your post to Helplines and welcome to the forum. There is really good peer support on the forums - you'll tend to get lots of personal support if you post on 'Living with arthritis' for example.

I'd just like to acknowledge that you've been given some bad news and you'll need to take some time to decide what this may mean to you. If exercise has been a key way to manage your emotions then it's going to be tough to make changes, and you might find getting some support a help. The BACP website can give you some possible signpostings.
http://www.bacp.co.uk/

In the short term can you explore exercise which is not 'high impact' - which basically means doing things instead of running. If cycling works for you then that's maybe a start.

Our booklet 'Exercise and arthritis' has plenty of suggestions about non high impact exercise.

If you'd like a chat or would like some of our information do give us a ring or private message us your name and address and we'll post you more information.

I hope that helps

Guy

elnafinn

Hi BBR

I think the best thing would be to go and see your gp again. They can do more than refer but you must also be willing to help yourself too. From what I have read, rest was crucial and I suspect you did not and continued to run and your body is telling you something big time. It was before but you chose to ignore the signals. I am sure that you will be able to get back to running but you have to think about your health and in the big scheme of things a good few months not running but perhaps exercising on an exercise bike, step aerobics, deep water running, weight training-nothing that has any impact for a good few months may be the answer.

I wish you well,

Elna x

bloodredroses

Hello and thanks for the replies above. Sorry I had not responded sooner- to cut a long story short something really ....difficult happened to me in early February (unrelated to this) and its taken a very long time to get through it- still not through it!

I am able to make another GP appointment but as far as my experience goes, GPs don't do anything other then prescribe pills for known issues and for unknown issues they just forward you to a specialist. I have already seen a specialist who discharged me as soon as I was diagnosed, apparently nothing more could be said or done? I'd imagone going back would just have the same effects and worse, if I were referred to the physiotherapy well they are actually worse, they seem to see my running as the only thing thats caused this- despite me only really picking up running about 6 months prior to the scan which diagnosed me cartilidge damage in my knees. I do not feel anywhere near as much pain as I do when cycling compared with running or even stair climbing yet they kept on saying running was out and cycling was fantastic and best to keep doing that. I said cycling hurt and they seemed to be under the impression that just pottering about was my only option. I am 30, walking around for the odd 2 minutes every day does not seem at all plausable to me in order to keep fit or even just keep healthy!

I am at a loss as to what to do about things and my back just keeps on getting worse despite any rest despite any pills despite any strengthening.

bloodredroses

--sorry, should explain the back thing!

Prior to me running, roughly 6 or so months before I ran (I had been using the gym but only for cross training type machines, the bike and stairmaster machines) I began to get lower back pain. It felt like a niggle more then pain and I felt like I needed to stretch it out so I'd stretch...only that just made it WORSE!

I saw my GP who just gave me a "back book" and told me to do back strengthening exercises which I did religiously and really hoped and believed they'd make a difference....only they didn't. And if anything the back pain got worse!

I was sent to a physio who said I just needed to do core strengthening exercises, which I did and actually became quite good at them (if I do say so myself!) I was then advised to take up their Pilataes classes, 6 sessions 1 per week which I did and as a result of my past exercise practise wasn't too bad at them and found them quite easy but still quite painful. One physio commented on my back maybe being hypermobile which I then read about and realised there is a strong link to hypermobility and osteoarthritis.

I then went back to my GP a few months later as the Pilataes classes had done nothing but cause more pain and the GP sent me to someone who specialises in osteoarthritis. She seemed intent on not beliveing me, though friendly when I said I had cartilidge damage in my knees she wouldn't believe me (odd/rare/I doubt it) until she'd seem on her computer the scan results. I said I may be hypermobile but she said I wasn't -until she saw my back and then said one area was but not every area (despite not testing every area). She said it was osteoperosis yet I do not have osteoperosis in that area (and a bone scan would be able to confirm this) its almost as if they think I have made the whole thing up and am some hyperchondriac.

Meanwhile I have lower back pain which only seems to get worse and no one that will offer any advice or suggestions other then "it can't be this and it can't be that". They said my leg pain was nothing until they did a scan, I had to fight for that scan and it took years to do that! I am now worried I will have to fight for another scan to pick anything else up and I don't want to have to wait years to do so!

Pain in my lower back is far worse then that in my knees has ever been and yet its my knees which had the test and the diagnosis- and that was on the hunch of a specialist who for whatever reason chose to run that scan.

helpline_team

Dear Bloodred,

I wonder whether you'd find attending a self-management group worthwhile? They can be great source of support if you feel there's a lot that you may need to explore.

http://www.arthritiscare.org.uk/LivingwithArthritis/Self-management

As you may be aware from reading the forum, we are not medically qualified, so have to be very cautious and not get into advice giving. And without medical advice it may be difficult for us to respond fully to your points.

Do private message us if you'd like specific information to be posted to you.

all the best

Guy