I have had RA over 40 years. So I am quite used to seeing Rheumatology Physio's.....but this latest physio has me speechless....I am in stage 4 RA...drug intolerant for 20 yrs. My mobility is very bad...so I was referred by RA consultant to see if physio could help..on my first visit physio examined my very sore and swollen left ankle...its fusing....and referred me to podiatry for boot with caliper .This has helped me walk a little .On my next visit 2 weeks ago...big gap because of covid..I asked physio would she check my joints as my arms were hurting badly from using crutches.....my thinking was if i could strengthen my arms it would help me with my walking plus reduce some pain....the next statements rendered me dumb. The physio informed me she had looked at my ankle and the xrays of my ankle last time....and did not need to see anything else...then said " I don't deal with pain just movement"....the rest of my hour time slot was then taken up by the physio and assistant assisting me to stand and sit from my wheelchair...when stood they wanted me to hold on to some bars.....both my hands are badly deformed my wrists are fixed and my left elbow is almost fused bent ..they then said how often would i like to come to help me with my "movement" ...I received a next appointment ..In 7 weeks....I was thinking more on the lines of every two weeks...In all honesty....the whole day was a painful waste of my time and everyone else....getting showered dressed and getting to the hospital for me is now like a military manoeuvre....with lots of pain for me.....ps I can stand from sitting myself with a few swear words...
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Mrspainting48
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Oh dear that doesn’t sound good at all. I have found the rheumatoid physios at my hospital very helpful. I was given one to one Pilates classes weekly or fortnightly for over a year to help me build my core strength. They never just concentrated in one place of my body as my RA effects all my joints.
Maybe you should contact your consultant and physio by email always good to have a paper trail and say you are having problems with your upper body particularly your arms from the crutches and can you please have support to ease this. By copying both in the email you may get a better response. I have to say mine are very proactive to emails.
Hope you get sorted soon and I agree 7 weeks seems far too long. Sounds like the physios are overstretched
That does not sound like a professional person at all speaking to you like that, not acceptable. Maybe a wee letter to the physio department saying that you were disappointed in your session as your pain level was not taken into account, and seven weeks between appointments seems a long time.
Adding in , is there anyone you, or someone on your behalf could speak with, to reach an amicable resolution ?
A letter sounds a good idea. It could be framed positively explaining what you would really like/need help with and ask if there is any way that the seven week gap between sessions could be sorted. Maybe you could copy it to your Rheumatology Department and/or your GP, depending on who referred you. Hope you get something sorted soon.
Poo!! But yes in My experience . I too had physio for my ankle and when I was there mentioned problems with my shoulder mobility and was told only referred for ankle and would need to be referred to a different physio as they only deal with their particular area. 🤷🏽♀️
That does sound like the physio had had a bad day! Very little empathy. I'm sorry you had to put up with that.Sometimes I've found the physios have got the wrong idea from the referral letter (e.g. I was once referred for treatment of my shoulders instead of my hips).
Other times they are overloaded with referrals and I get an assessment, a chart of exercises to do and a comment written 'Adequately motivated to do exercise' and discharged to do things at home.
I've had to fight sometimes to get hydrotherapy (which is what I find most helpful). At other times, the physio has said 'What do you need from us?' and that's much more helpful.
I recently went privately because of Covid and had a really good assessment and programme of activities both land based and hydrotherapy. But it was expensive.
You are right about hydrotherapy. I had a course of hydrotherapy once after a major flare left me with restricted movement in my shoulders and arms. It was great and really improved my movement and strength. Used to be a hydrotherapy pool at the hospital I attend but no more.
That is terrible. Just a little aside, do you use gutter crutches? There’s no way I can put my weight through my hands and wrists on normal crutches. I insisted on them when I had a new hip. I hope you get some satisfaction and sorry for all your pain. Rheumatoid is so not understood. Physios I’ve had have been great adapting exercises to accommodate pain. Sounds most unprofessional.
I’d be upfront but polite and ask next time is there anyone here who does deal with pain then? I’ve not seen mine for 3 years but he would just do whatever I needed but I have known him 23 years. Surely the physio would need to investigate pain to recommend exercises/help diagnose an issue? Sounds like it could one person’s philosophy or a certain way the department operates. I’d ask the rheumy if this is so when you next see them. Good luck.
I can assure you i put everything i needed to say in plain speaking.Over the years i have had some wonderful Rheumatology Physio's who looked at me holistically and were great helps...
20 odd years ago the consultant i was under for my RA declared after many blood checks i no longer could tolerate RA drugs or indeed any pain relieving drugs....He took me of his list saying he could do no more for me....i also lost my physio and any support at the hospital i got...
So seeing this physio was a monumental feat ....i moved to a new area and was accepted under a R A consultant..I thought at last help and support.....
Then I’d not want to see that particular physio again if they weren’t helpful to your specific issues as they person seemed to be dismissing the pain aspect and had a different approach that wasn’t right for you. We can request which physio we want but if it’s the senior one it may take a bit longer to see him. As he is the only one I’ve ever seen since 1995 I’ve always stuck with him. Hoping you are able to see a physio who helps you more.
Sorry but it seems very limited as to what you are able to access re the pain element and physio at the moment. I wish it a better service for you/a new physio with a different way of thinking. Haven’t seen if you’ve said you’ve mentioned to your rheumy as they are not always aware of how the rheumy physios work. My rheumy and head physio normally meet together every week at least once.
Thats how i thought it still worked....As i said i have had some great care over the years....But sadly this new DIY system has me confused even thought i worked for the NHS from my early 20s
With the government opening everything up and most people resuming social activities etc, I think it seems strange to many that a ftf appointment with a GP can’t happen easily for some patients. I expect there will still be a lot of triage by phone for some time to ascertain if you need a ftf. I believe my GP practice are planning this. They changed from a walk in emergency access clinic on the mornings a couple of years ago and you had to phone 8-10am to be seen on the morning. Now it’s phone as soon as you can after 8am to get a call returned. I can’t see them going back to how it was anytime soon.
I remember my childhood GP who I saw from birth until I was 22 when he retired. There isn’t one ruling for all either so some GP practices get it more right than others.
My rheumy has recently referred me to back to rheumy physio for sciatica and severe cervical disc degeneration.
I was a bit surprised as I don’t have RA anymore - mainly overlap connective tissue disease issues and severe degenerative disc disease - particularly in my neck.
Last time I was under her care she was very focussed on persuading me to use a rolator rather than a fisherman’s perching stick. I resisted and she then referred me on to neuro physio - who were better but who’s main focus was on neurological disorders which we both decided I don’t have. She then went off on maternity leave and then came the pandemic - never heard from her since.
I don’t really understand why there are all these different physio teams for all different rheumatic diseases when they are rheumatology physios so should be able to work with patients across the spectrum including osteoarthritis which many of us have as well.
Also the rheumy one is very senior yet misdiagnosed my hyperextending, wobbly knees as osteoarthritis where they are actually just very hypermobile. This has since been confirmed by x-ray.
My first physio was a general physio, even though I had RA, and knocked spots off all the others I’ve seen. She made me customised splints, gave me putty and hand exercises to stop my ulnar drift, referred me to OT and massaged and manipulated my problem areas, always worked things out correctly and was just brilliant. Maybe she wouldn’t be able to do so much for me now as rules have changed -but I still fall back on her old exercises and splints and OT devices regularly.
She’d never even heard of Sjögren’s when I was rediagnosed but took the trouble to go away and read up. She was the only one who spotted that I had joint hypermobility disorder / EDS - which sadly since I moved to a new area - no rheumatologist has ever confirmed.
I am so sorry you are struggling so much. The visit to the physio must have been a real challenge for you. I am sorry but I really can't think of anything to help you except to suggest that you go to your GP and ask for a referral to someone who can help you with your pain. I wish you all the best.
Thank you .....but in the whole of covid i have not seen hide nor hair of a GP......I can only speak to a practice nurse.....even when i got a bad infection in my foot..i saw only the district nurse......i had one phone call from a lady who said she was a doctor.....did a prescription for antibiotics.......The NHS is no more......i dont understand this new way of health care......
The care is missing and its more DIY....
I am a retired theatre nurse .....Holistic nursing was our way....with a capital Care....
The carers are still there......but they cant do their jobs because of bad management...time and motion and money..............waste......
I was born 1948 one of the first born in the new NHS......I worked NHS.....
I cared .....now i need care and I cant seem to get the help....
That is so sad after all your work for the NHS. I know things are very different now during covid and weren't brilliant before due to either lack of funding or many areas being run by trusts which presumably are very expensive. On saying that both myself and my husband have excellent care from GPs, hospitals and rheumatology so I can't complain. I can get telephone appointments with my GP if I ring at 8.00am for a call before lunchtime or 1..00pm for a call late afternoon, if they are available. It has worked well for me. I hope you get to see or at least speak to someone soon.
Good morning, don't know what to say over your dreadful experience. Is this person in the right job and does she understand? Since my diagnosis several months ago I have good and bad experiences with staff as have others and days when I cried with frustration. If swearing makes you feel better and does not affect anyone else do it if only to release some of the tension. sincerely hope things improve soon for you.🐕
Its seems to me since i became drug intolerant the change in my care has seriously diminished..While i was still on drugs i had the works.....Hydro.....Physio....OT....
Support Rheumatology nurse...
When my Rheumatologist Consultant took me off his list....it all went.....I asked almost begged not to loose the support.
So they kept me on for one year with the Rheumatology Nurse....
Then nothing I asked for alternative help and was told there was no money for that anymore.....
I moved home to another area and got to see a new Rheumatologist...who referred me to Ortho Consultant and Physio.....but covid struck and all clinics closed and patients were shelved....I was getting my own alternative help from Prince Charles wellbeing centre...but they too stopped....
So getting a face to face with physio was fantastic......
But to be told she only deals with movement not pain......I sat there feeling quite hopeless and once in my life i was speechless.
I guess the fight has gone from me I am tired and weary of asking for help.......this last year has been a constant nightmare....
Pain 24/7 no easing......
Sadly its not just me there are thousands of others with different illnesses asking for help.......
Please, please don't give up. There is always the Samaritans to offer emotional support when things get too much. They can't offer advice on anything but having someone to listen does help and if you can't speak for a moment or two they wait and offer encouragement.🐕
Thank you......i am not disappointed about living .....just very angry how a wonderful thing like the NHS can be destroyed......The caring ones who's dream it was must also be as confused as many of us are.....
Sorry if I misunderstood but how sad that so many of us are having poor experiences. I've had good and poor. One nurse was so reassuring another mediocre. Have now decided to look into alternative medicine and thankful for my 2 moggies who help keep me occupied and due to warm weather and long coats covered in their fur even with regular grooming.🐕
Oh dear, Mrspainting48, this sounds very similar to my own experiences with physios. You are a long-term sufferer with multiple problems - 40 years. The particular part of your email that attracted my attention was your referral to your arms and hands. They sound very much like mine - fused wrists, deformed hands and fingers, and a fused elbow joint. I was recently in hospital after fracturing my right femur. and had to explain very carefully that I would not be able to use walking aids - zimmer, crutches, stick - because of my arms and hands and also the ruptured tendons in both shoulders.
They were not reckoning with RA! The physios ( 2 of them) did manage to get me up and walking between them, but it took 4 weeks in the Cottage Hospital. They admitted not having experience with anyone like me (54 years with RA), but once they accepted that I couldn't leave the hospital until I had some kind of mobility they did a good job on the whole.
The problem starts later when you have to rely on Community Physiotherapists. The one who visited me at home was a good physio - but had no experience with RA. I've had this wretched disease long enough to know what I can tolerate and what I can't - I know how much irreversible damage has been done over the years, and how much regular gentle movement, within limits, can help, but I'm afraid many of the exercises he gave me were not of that order.
He could see the damage in my hands and wrists, but still couldn't understand why I couldn't grip anything!
I sympathise so much with the awful struggle you are having and I know what a fight it is to be understood. I was told early on in this disease by a GP (in the 1960s) that never force yourself to do exercises you know you can't do - it can only worsen the damage. Well, I know we've come a long way since then, but physios today have no experience dating back that far so are not able to cope well with patients with long-term damage.
Listen to what they say, but be firm and make them listen to you.
Thank you for your reply...You have walked in my shoes....and the empathy you have is very much appreciated.....Most things in life are very rarely text book perfect....but because it says how the norm should be we are treated in the text book manner...and when it does not work......nothing.
I go on about holistic care....but every single person with RA or any illness....are not the same...
We need to be listened to ...we live with our bodies we know what is good or bad for us.....
In the end chronic pain is pain...
Its there as a warning........and only the bearer can say how it effects them.......
I have another appointment with the physio.....28th this month.
She said she would like me to walk holding the bars and she would aim for that...
I would love to walk with the bars........but if I don't get help to try and build my core strength in my arms and hands first...I don't stand a chance....if I had got this help years ago i think i would not be as advanced in weakness as i am now....
My thoughts are to cancel the appointment......as i know i will talk and they won't listen....
They want a quick fix.....my body is not broken it will not fix.....my connective tissue all over is spent.....I am very lucky to still be here....many many with RA .. I knew have passed......
Once again thank you My thoughts are with you......x
I do wish you well with your next appointment - that is, if you keep it. I know what a dilemma that is.
I agree that the body has to be treated as a whole - not chopped up into separate bits; each bit being treated as if it were disconnected with the others. This attitude is particularly irritating in a disease like RA which can effect every cell in the body. But the medical profession is divided between disciplines - each discipline in a different department - "and never the twain shall meet".
Even though many medics recognise this, nothing is being done to alter it. I don't know what the answer is. Over the years I've been batted from department to department, each specialist saying the overall problem is not their problem - go and see this or that specialist.
At the moment, nobody will see me! My rheumatologist has taken early retirement, and according to the rheumatology nurse the department is under pressure. The GP is still only conducting telephone consultations. So I'm in a kind of limbo.
I'm holding my fire; trying to keep stress at bay - something that can cause havoc with the immune system.
Do take care; I find it very helpful to practise deep breathing when I get a quiet time on my own. It slows down the heart rate and is very calming.
My thoughts are with you and everyone in our situation...fighting to survive in what seems against all odds...a hopeless fight.....Your so right about Consultant's dealing with parts of us....
I got a Staphylococcus infection on my left foot it turned into a very large blister filled with fluid causing great discomfort...weeks of antibiotics and the district nurses dressing the wound.....I had a telephone appointment with an ENT consultant. Who informed me he only dealt with the Ear nose and throat.....even though Staphylococcus is a nasal infection that can live on any part of your body if it gets an opening can cause numerous problems..
I do remember receiving excellent care and attention nearly 30 years ago...a wonderful consultant and Physio's and OT's....they treated all types of Arthritis all ages....
They encouraged support groups and asked if I would start one at the hospital...I did and its still running today as part of Arthritis Care....
This was at Steeton Hospital Keighley West Yorkshire....
Unfortunately because of family i had to move ....
I suppose i expected all Rheumatology teams to be the same.......
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