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 🤬🤬🤬
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
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.
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
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
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I’m on it Dee..x
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Go tiger it’s been way too long offer to collect?
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Can’t collect needs to be sent by a private firm. 🙄🙄
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
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.
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
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
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.
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
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
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
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.
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Newly diagnosed, so many questions!!!
Dilemma and worried 
What colour sharps box 
Rheumatology Nurse
