Physio stalemate : I am fed up!!!! My physio can’t go... - NRAS

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Physio stalemate

25 Replies

I am fed up!!!!

My physio can’t go any further even though I had worked very hard. He said I really have put the work in but until I start my new meds and get my disease stable we are at a stalemate. He feels my ankle needs further investigation but again until it’s stable no point. He can’t understand the delay although he has a few patients waiting to start biologics and it’s taking time but they are people going on to biologics for the first time.. yet another email and voice message left again today 🤬🤬🤬

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25 Replies
Mmrr profile image
Mmrr

It must all be so frustrating for you, I've always found the physios very good, but also frustrated with the system.

I just don't understand the 'partial' care approach, it seems so wasteful.

I've been discharged by the physio twice saying that my disease needs to be better controlled before exercise can be undertaken.

Hopefully things will move forward soon.

springcross profile image
springcross

And on and on it goes, sorry to hear that - it really is a pain - literally!

allanah profile image
allanah

Keep plugging away. Hopefully the physio will pass this info to the rheumy team. But keep phoning and telling them you are feeling worse .

Neonkittie17 profile image
Neonkittie17

I understand. 💗. My physio had to be very careful with my ankles whilst I had inflammation there years ago and it could involve a lot of flaring by even small movements. I hope you are sook less nflamed and can do more. l have always done lots of little movements with flexing and gentle rotation as otherwise when I stand up I am seized. Hope you can soon have some more physio. x

Pat9442 profile image
Pat9442

I have rheumatoid changes in my neck which cause a great deal of pain. Exercises did nothing and although I was very sceptical my physio wanted to try acupuncture. Wow, such an improvement after just a few days. I can even sleep! I have the third session this week. Even if it gives relief for a short while it’s worth it

Not surprised you are so frustrated, I guess when they booked the physio in they thought the disease might be under control ?

Its better they stopped rather than continuing and snapping something off 😜

No but seriously it's like putting the cart before the horse isn't it. I've had physio whilst disease not under control (never been under control) and they've emailed me the exercises for when I'm better.

Hope they sort your biologics out ASAP x

Ms-D profile image
Ms-D

Oh no i wish i could give you a hug but heres an air hug🤗. It take the mick when they dont understand the pain we suffer. Pls dont give up and if you want I can ring on your behalf as im very persuasive lol. Thinking of you x

in reply to Ms-D

Thanks x

Amy_Lee profile image
Amy_Lee

With the pain all over, the arrangement of the physio is so lousy hence the frustration. I can certainly understand it very well. However, continue to call them as you do need the physio to help you get better.

During the peak of my RA, I had muscle wastage and my rheumy sent me to both the occupational and the physio therapists. I was in pain all over, how could your physio told you to get better before you go over? Suggest to get some picture to follow or go to youtube to see what is available while waiting for your physio to get back to you.

Most importantly, do not give up. Though I have been in remission since a few years back, I am still doing my exercises until today. At the early stage, I could not do any proper exercise but merely to work my my joints to keep them flexible.

I will post some of the fingers exercises that I do to work on my fingers, I hope that will help some of those whose fingers are not really functioning well. I am doing the exercises because I want to keep my fingers strong.

Have you done PALS system if getting from a hospital? This is a saga and a half for you x

in reply to

I’m on it Dee..x

in reply to

Go tiger it’s been way too long offer to collect?

in reply to

Can’t collect needs to be sent by a private firm. 🙄🙄

Monkeysmum profile image
Monkeysmum

So frustrating for you. I’ve had similar with tendon problems in my left ankle - Rheumy sent to physio, physio said I can show you the exercises but you won’t improve until you get the inflammation down, tendons are too ‘spongy’. Not having much luck with that so hobbling on! Xx

in reply to Monkeysmum

It’s a bugger isn’t it. We try so hard but the support is just not there.

We will get there

From one hobbler to another xx😂

Pippy25 profile image
Pippy25 in reply to

What a load of hobblers! Sadly to say though, it's a group we don't want to join and am sorry to hear of your frustrations. Sometimes I wonder if we are just getting 'sticking plaster solutions' as I feel like I am going round in circles and are just going from pillar to post with no improvement.

Pippy25 profile image
Pippy25 in reply to Monkeysmum

Nothing seems to 'flow' if that's the right word as we get passed from pillar to post or that's how it feels. Sorry to hear you are having problems with your ankle and are having to hobble. It's no consolation but the brace has gone back in it's box...my GP called it a contraption and wondered how on earth I would manage to get it on when she saw the photos of it. So another limping, hobbler sadly joins the group here! xx

in reply to Pippy25

Oh poo. Bet you wish you could tell .. so called.. specialist.. told you so ..🤬 he didn’t listen and just dismissed you . I like your Gp. What’s your next step? Pardon the phrase x

Pippy25 profile image
Pippy25 in reply to

Well apart from turning the brace into a hanging plant stand or water feature as my next step, my GP has suggested a private consultation (a one off) with another chap, although feels at the moment the risk is too high with this virus and I've just started another bout of shingles on my scalp and face so am on anti virals. So getting no where fast is the answer and I think my GP gets frustrated with these consultants too.

in reply to Pippy25

you oh really are in wars at the moment. Why is it so hard.. I fear this is the sign of the times and the NHS is not going to recover not only from covid but neglect. So many suffering from many illnesses. Hope you recover from shingles quickly.. mind boggles where we all get these bugs etc we don’t go or see anyone to get them x

Pippy25 profile image
Pippy25 in reply to

Thanks J1707, I never under estimate stress and what it can do to the body and I know RD likes nothing more than playing along when we are frustrated and stressed. xx

Monkeysmum profile image
Monkeysmum in reply to Pippy25

I’m not surprised you have had to give up on the brace Pippy, always did sound more like an instrument of torture than anything else, but if you can’t even get it on what else can you do? So sorry to hear about the shingles, moving house is supposed to be one of life’s most stressful experiences isn’t it, so I hate to imagine how stressful it is to move house in the middle of a pandemic whilst dealing with RD pain and limitations and rude dismissive doctors 🤦🏼‍♀️😕. Really hoping you feel better soon xx

Pippy25 profile image
Pippy25 in reply to Monkeysmum

Thanks Monkeysmum xxx

Leics profile image
Leics

If it was me I would contact your consultants secretary directly and be very firm that it’s gone on too long and you’re struggling to cope. It’s perhaps someone in the chain not doing their utmost for patients we know they exist lol. If PALS don’t move things along that is. Last resort and I’ve had to do it once when my appointments were cancelled constantly only for them to send me a shi**y letter saying I had missed an appointment which I didn’t even know about, thankfully it was about 5 years ago now but a quick letter to my MP and I’ve never had the problem ever again, I have to say it was a last resort and I had tried every other option but that’s what they’re there for. Good luck I really hope you get someone to listen and move things along for you.

LinaM profile image
LinaM

I’m keeping my fingers crossed for you J. Xx

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