I need tips on how not to be fobbed off when I go to docs next week

[voluptuagoodshag]

Had sore hip for over a year now. Visited doc months ago and was referred for physio. The exercises given did no good and the physio kept changing them as nothing was working and in most cases, the more I did, the worse it was.
I am a size 8-10, physically very fit, very flexible (I do yoga and stretch regularly) and have continually maintained that its a pain in my bones rather than muscular. I used to cycle regularly and could cover good distances (30-50m miles), I could also manage a 5k run in about 30 mins but now even a short ten mile cycle and it's throbbing afterwards. Have given up on running until it's sorted.
So I'm heading back to doc next week. I hate this and do not want to be demanding but I feel like no-one is listening to me. How do I progress things so that I'm not back at square 1 and she says it's muscular, see the physio again.

I would ask for an orthopaedic opinion. Could you ask the physiotherapist to do a report to the GP. I find physios are often pretty good at suggesting possibilities so I'm surprised they haven't suggested another line of investigation. I would probably refer at this stage or maybe some bloods to see if any inflammation.

Thanks. Wasn't too happy with physio to be honest. He was a private one via my DH's work insurance and he kept insisting it was muscular, gave me exercises which I would do religiously to no avail so then it would be another set of exercises, same thing. Then he said my ham strings were tense too and massaged my calf so hard it left bruising. Then suggested I buy (from him) a pilates roll. Insisted they don't make a profit from these and sell them at cost price. Tried to charge me £30 for it. I pointed out that it was from Aldi and then they charged me a tenner! [hmmm] Can't shake the feeling they just saw £££ signs when they realised I was an insurance case.
If I have to be referred to an NHS physio then so be it but felt the private one was ripping me off.

Here are some tips re not being fobbed off ...

Tell them very bluntly that this is not a muscular pain. Keep saying it feels like a bone pain and it's severely impacting on your quality of life. Say that you've tried physio/ painkillers / anti inflammatory tablets/ hot baths/ whatever and they do not ease the symptoms at all. Be very clear as to the outcome you would like - and that's a scan of your hip.

Don't leave until you either have this or a promise for a referral. And if by some chance you don't get it .. then make another appointment in a week or so's time and repeat the above.

My Dr said that when hip pain presents, the doc must always consider arthritis as the cause.

Watching this with interest as I've had hip/pelvic pain on & off for years(after severe SPD in both pregs) & also get told muscular etc. I'm also size 8, fit etc.Tried physio countless times (they put it down to my hypermobility) & won't listen when I tell them it just does not feel muscular. Have taken Ibuprofen, voltarol, co-codamol 30/500, heat rubs, iced, hot water bottles etc...nothing, absolutely nothing touches the pain. I often get a popping feeling when I move. It's horrible. I just feel as though no one listens. 2 weeks into a 'flare up' just now & struggling to cope with daily activities.
I can certainly sympathise OP & hope you get the correct treatment soon.

I know the feeling love. The trick I've learnt to is be persistent and absolute about what you think you need!

Many people feel they can't go against the word of a doctor because of their profession and the authority it entails. The simple truth is that to get anything done, you need to stand firm and be strong.

If at first this doesn't succeed, try again and insist the pain continues. Best of luck!

Jings! Thanks for all these comments and sorry to hear your pain Glasgowlass. I know what you mean about a flare up, I'm in the middle of one right now and am so tired as I can't get a decent solid sleep coz I keep wakening when I turn over so that I can do so at glacial speed so I don't hurt more.
Will let you all know of outcome but interesting to hear that other people get told similar when you just know it isn't. Hyper mobility was mentioned to me too and my Mum has osteoarthritis. I just feel like I'm on a production line which in the long run, will use up more NHS resources. Right I'm fecking determined now. Tune in next Tuesday afternoon [determined face]

Write down all your symptoms in a time line (if you can remember)
Include physio sessions - what worked what didn't
Write down all your medical history, including your mum having osteoarthritis.

Then write any questions that you want to have.

Sometimes it is such a battle that you forget the points you want to raise. This way you can refer to your notes and keep yourself on track.

I've found with my various medical/nurse appointments over last couple of years that this method helps me.

Good luck!! And my deep sympathies for all the pain.

Fingers crossed for you for Tuesday. Completely understand the production line thing, you just get passed from one HCP to another without any significant outcome. The turning in bed also rings bells for me. It's amazing just how detrimental it can be. Hoping you are pain free soon.
Think I will be making a GP appt soon also.

Is the pain on the outside of your hip or in your groins?

Have you been to the GP more than once? If once, then physio probably was a reasonable suggestion.

In what way does it feel like bone pain? (I have never had bone pain so I don't know what that feels like)

No the pain seems to emirate from the inside. When it's on fire it spreads along my lumber region and can twang up and down my thigh.

It feels like bone pain or joint pain because I can prod and poke my muscles and feel no pain. It really feels like something is rubbing on something and sending everything else into spasm.

Thanks again for all the tips. I will go and make some notes. I had one visit to GP then mentioned it again during a followup visit for something else.

Good luck - I sympathise and good advice here - take notes and also check nice guidelines for this type if pain - and what the possible instances are (ie arthrisitis)

This sounds like a sacroileac joint problem to me (I'm hypermobile and recognise the pain - I'm not a medic or physio!)

With hyper mobility the joints can jam up. The first time it happened to me it was so bad I couldn't get my right foot flat to the floor. The clunking you mention and tight hamstrings are also very familiar. It may present as 'one leg longer than the other' but will actually be because one SI isn't moving as it should do so the pelvis isn't aligned. Do you have a tight pulling feeling round the back of your hip where there is a knobbly bit of bone? That radiates pain up your back and down the back of your legs!

It was an excellent sports physio (trained across many disciplines) who fixed me - with just a few ortho-style manipulations. But it's a weak spot for me and only regular core strengthening helps. But muscle strengthening can't help when it is already locked!

I'd recommend trying an experienced sports physio/ortho and explaining your history and pain. They should assess your movement, check hip levels and joint movement etc, and should be able to set you straight (literally) before recommending strengthening exercises. But no amount of muscle release (massage) will undo a joint that is locked up. The muscles are tight because the joint doesn't function properly, not the other way around.

Paradoxically, with hyper mobility, some joints and muscles are too stiff because they are under constant pressure to go beyond the normal range.

It's a complete bugger!

Shoot, yes there is a tight feeling, like I want to do a massive stretch but that makes it worse. It can go into my groin area too, like a period cramp. The only thing that gives me brief respite is if I hang by my fingers from a door lintel or the rafters in my shed. But once standing again, the pain comes back after about a minute or two.

I always try to see sports medicine consultants for these (ongoing!) issues, sometimes having to pay for it although have had some NHS support too. They tend to want you to get better, rather than the awful 'it gets worse when I exercise', 'well then, don't exercise' type conversations I've had with GPs!

I have had the same experience asleep - the first time I had an MRI but when it wasn't micro-fractures I was told 'just don't exercise for 6 weeks'. Terrible advice.

Mine was a private physio OP and he's been outstanding. Obviously your diagnosis may be different but what you describe sounds very very familiar to me (in fact I have been locked up for several weeks but I am pregnant and I'm not sure if they can treat me effectively - I must go find out!)

Dysfunction in the pelvis really will cause a lot of fallout - I have had knee, ankle, and foot pain and injury as well as back and neck pain. It's amazing what a good physio can do!

Hmmmm, seems like I got a bad one. Just my luck. Having now read up on SJ pain, I have all these symptoms and the pain is pinpointed exactly where these joints are.

I really do wonder sometimes about the machinations of health professionals. I think the NHS is fab and do a great job under a lot of pressure but surely more time is wasted by not listening properly and reading a patient's medical history.

Yep. And for whatever reason the NHS isn't formally behind good physio - amazing to me that pain meds, stopping exercise, and even scans are their default plan A. I guess physio is expensive!

I'm pretty sure I have joint hypermobility syndrome but although I have a hypermobility diagnosis from an NHS physio (after X-rays, an MRI, 6 weeks on crutches revealed I didn't have a foot fracture after all) but the next step seems to be impossible!

Some GPs may not be enthusiastic about physio because for quite a lot of things the evidence is a bit limited. That could be because the funding isn't there to do the research, or because it doesn't actually consistently work better than placebo.

Most GPs refer for physio in my experience though, as we have limited other options. Many will refer to specialist physio if it's available if you have hypermobility (or another specialised problem) and have found normal physio unhelpful in the past.

Honestly I think most GPs want to listen. BUT if you tag a problem in on another consultation they may not manage it. Ten minutes is not very long and you really should only bring one problem each time. If it's hard to get to an appointment etc book a telephone appointment to give the problem full attention (if you've already been examined and nothings really changed). That's a plea - most patients seem to think that ten minutes is long enough to discuss 3+ things and it really, really isn't.

makemine it struck me as I wrote my last post that I was probably generalising too much and yes I agree that evidence is piecemeal, one assumes partly from the vast range of qualifications and expertise available to massage therapists/physios/chiros etc!

Well I'm going for an x-ray this week and have to take it from there. Fingers crossed for progress of some sort.

Good luck with the X-ray. I'd start looking for a good physio if you can afford to do it independently

Update. X-ray was fine so was left wondering what to do next. I don't want to count my chickens but this seems pretty amazing.
Was digging in garden (yes it was sore but I'd rather be doing some thing sore than sitting around sore). Afterwards I came in, had a shower and was waiting for DS to brush his teeth so I could put him to bed. At this point I was lying on the floor on my tummy. I asked DS to stand on my lower back/upper bottom - it just seemed like the right thing. He did and though nothing clicked I actually experienced a pain free night. It's still ok this morning though could probably come back. So I'm making an appointment with an osteopath to get this done properly rather than my DS jumping on me.

My xray was fine. After the pain continued I just had to go back. Was referred for physio, which made things worse . Then back to the hospital, then more physio.

When I finally was referred to see am orthopaedic surgeon he spotted my issue on the then 3 year old xray. Straight away. After a bit more of a wait and a few more tests, I've finally had an operation to remove bits of bone that were causing the problem. It must have taken 5 years from first going to the doctors to getting to where I am today.

Yours doesn't sound like my pain at all, but I suppose my message is not to let a clear xray put you off persuing an answer and going back of things don't get better.

Sounds promising voluptua. Love that post-clicky feeling!