frustrating physio appt, how do you get your voice heard?

[kirstycakes]

This week I went to my second physio appt for my current knee flare up. On my first visit, 3 weeks ago, it was at its worst which I was relieved about, as they were able to see how bad it really gets. I was only given one exercise and told it was going to be slow going to get it back up to strength.

This week I had my follow up appointment, and this time it was not such a bad day. Despite me trying to say several times it is still very up and down, and can sometimes still be even worse than it was on my last visit, all he kept telling me was how much it had improved since the last visit and that the exercise is working!

Do you find it difficult to get your voice heard, and how do you cope with it? We are the ones that see all these symptoms every day, yet the health professionals only seem willing to treat you on what they can see on that day. I have had the same with consultant visits as well, because on that day it seems quite under control, they refuse to increase medication etc despite trying to tell them I'm really struggling most days.

[oldtimer]

Keep a daily diary for a while before seeing them perhaps with a scale for how bad it was. You can do this by hand or use a computer/phone. If you use a computer and excel you can even get it to draw you a neat graph with it going up and down. That would really impress them!

[kirstycakes in reply to oldtimer]

thank you, I have downloaded an app on my phone which allows you to record pain everyday and creates a graph so will see how that goes. Although I now have to wait until December to see a consultant which seems like an awfully long time when things aren't going well.

[helixhelix]

Yes I keep a diary, and take photos of swollen joints. I also keep records and turn things into diagrams and spreadsheets. I've learnt to be polite, but stubborn. When first diagnosed I made flip books so rheumy could see how I'd been in a few seconds. Whatever it takes!

[Minka1]

kirstycakes. all i can say on this is i have met a few of these people in my time and unless they have had it they dont even understand Newton's ist and 3 laws.

i will explain what i say to them his 1st law their is 15 pounds per square inch of air pressure pushing down on every part of your body all the time (this is called gravity The body has it on centre of gravity ie when we stand up the body maintains a vertical center of gravity to spread the load BUT IF ONE TAKES ONE SHOE OFF AND TRIES TO WALK IT FEELS FUNNY why is that because the body your spine your leg everything tries to find a new center of gravity (try it) which in turn makes the body say hey their we need to make some ajustments here im not standing vertical So the spine the legs the ankles every thing tries its best to adjust for having one shoe off. now the 3 law of Newton's. newton said that when in nature a force is applied of say 20 pound forse in a leg moving forward their is allways an opposit load of 20 pounds going in the opposite direction HAS TO BE. That in turn means every mussle in the leg has to take this load So if one is weak or has something wrong another part in the leg has to compensate for this error. THIS USUALLY BLOWNs THEIR MIND A LOT BECAUSE PHISIO DONT THING IN TERMS OF SCIENCE and you cant get round the apple falling down AND not upwards.

SO IF THEY HAVE GIVEN YOU ONE EXERSISE THEY ARE WRONG IF ITS A QUAD EXERSISE STRENGTHENING THE KNEE. BECAUSE THAT WONT HELP UNLESS THEY GIVER YOU THE EXERSISE FOR THE VMO MUSSLE WHICH HELPS THE PATTELA TRACK IN ITS GROVE AND STABALISE THE KNEE JOINT because the nerves their must fire that signal at the same time . NEXT TIME YOUR THEIR ask them should i not be exersisisng the knee quad and vmo mussles otherwise the knee wont stabalise.

im trying to recover at moment from a microfracture 2cm square of the knee that is not working and my ankle joint hurts cos everything is compensating for loss of cartlidge in the knee.

it makes my blood boil that they dont check everything out properly before they start pussing people on ballance boards etc and messing up somthing else.

hope this give you a laugh kirsty but i would like to see his face if you ask that question

[kirstycakes in reply to Minka1]

There are some really interesting points there, thank you! Likewise I keep being given quad strengthening exercises because that muscle has now wasted. They just seem to ignore all the pain and swelling thats actually in the knee joint! He reduced me to tears just pressing it! Think I will go to the GP to see what else can be done.

[Minka1 in reply to kirstycakes]

if the knee is swollen their is something wrong with it And giving exersises will not address this situation only make it worse. You either have an infection in their or their is some bone material in their upsetting the knee.

Do you get any grinding in the knee when you bend it while sat down Put your hand on the knee cap and see if you can feel any grinding in the knee or grating you will be able to feel it

If the knee is swollen it may be needed to be drained off and then some of the contents checked for any bacteria in the joint. Reading up on this strep can get in through your mouth or throat or eyes and cause this do you have any sore throat bad teeth or anything of this nature Its funny how this can transfer to joints. But if its ra then what you get is the immune system looking at tissue and saying i dont recognise this and then it puts down think its white blood cells deposit a material and along come your immune system to attack the what is a good joint which destroys cartlidge in the knee. THE IMMUNE SYSTEM IS A VERRY FUNNY THING WHEN IT GOES WRONG. TELL ME ABOUT IT

I note in your reply the quad has wasted this is through not being used and if its painful to do the exersises you could get a tenns machine and this will exersise that for you and may be of help i got mine of ebay for 25 quid

HOW LONG HAVE YOU HAD THIS PROBLEM WITH THE KNEE SWELLING UP

regards john .

[kirstycakes in reply to Minka1]

Hi John,

I have had an MRI and they have told me there is fluid on the joint and I have an inflamed tendon but they've said the only option is physio. However when I had the MRI things were no where near as bad as they are now so I feel like they are only going on that and not the suffering I'm dealing with every single day.

The pain first started last August, but it was only every so often and did not really prevent me doing the things I normally do. However in the past couple of months most days I struggle to climb the stairs. I had a moment the other day where I had a shopping bag in each hand and opened the front door to discover I could not even get up the step into the door without putting the bags down and dragging myself up. That did end in a little cry as at 24 I feel so limited in how I can live my life.

Thank you for the advice about a tens machine, it's definitely worth a try!

Kirsty

[stbernhard]

It took a long while for me to get a tailor made exercise program. I was friendly, but very stubborn and wanted an explanation of every exercise, what muscle, what benefit, which tendon is this affecting etc. I got there in the end and it's now part of my life. So take the advice of Oldtimer and Helix. Be persistent, it will pay off in the end. All the very best.

[kirstycakes in reply to stbernhard]

Thank you, I'm someone who lacks confidence so it will hopefully pay off to try and speak up a bit more!

[Trulysad-76]

I have to agree with Oldtimer, the way to get your voice heard is to keep a diary. I keep a pain score diary so that they can see how my pain is on a day to day basis. On the front I write my own personal 1-10 pain score. 1 being no pain and then as it goes up what I live with.

I hope this helps you

[kirstycakes in reply to Trulysad-76]

Thank you, I've now got an app to monitor pain, fatigue etc each day and produces a graph so will take that to them next time.