Has anyone had any experience of having physiotherapy , either NHS or private?
I have had RA for 6 months now and although the methotrexate and hydroxychloroquine are bringing down the swelling it is painful to raise my arms above my head or reach behind my back. My wrist is still swollen and I have a limp due to my right ankle. I so miss being able to walk short distances.
I have seen other posts and understand the importance of exercise and how good swimming can be. I have also seen the online exercises for people with RA. I wondered if it would be helpful to have an assessment from someone with expertise so I have a baseline and then to have some tailored exercises to build my range of movement and strength. I also wondered if it would help getting a Blue Badge if things do not improve.
I would welcome any thoughts....
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spartacus101
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Yes, I really recommend getting assessed. A lot of physios are very knowledgeable and can give targeted advice, even refer you for other treatments.
Where I am you can self-refer to physiotherapy so no need to go private. And with your diagnosis you may get seen quite quickly.
Our physio department in the health centre where my GP is has a gym. Once you've got an exercise plan, the physio can book you in for independent, supervised sessions so you're not left to do it all alone and there's equipment you can use.
In short, you've got nothing to lose by trying it. But physio is a commitment and it can be hard to stick to the regime and fit it around daily life. Often you need to do quite boring and repetitive exercises, several times a day.
Thank you. I can see that it is likely to be a bit of a postcode lottery as to what might be available. This has given me the confidence to do some more exploration into what is available and kit myself out with an audio book or music on headphones!
Hi, It seems you’re very lucky to have a gym at your health centre and that you can have a specific plan of exercises as well as being shown/be supervised how to do the exercises properly. It’s most important since we’ve all different in experiencing pain and disability. May I ask where you live?
This is not my experience of physios! All they do is tell you what to do!! Didn’t even give me a plan showing exercises on paper… I had to request one and frankly it was so basic it was useless. Checking on YouTube was more helpful. They also didn’t take me through the range of exercises… I can hardly use my arms etc, I had to ask them to do so, which they did reluctantly and very briefly ! They obviously think it’s not their job to take patients through the exercises and monitor them. They tick a box after the appointment. Job done. Useless to patients.
However, I went to see a reputable physio privately, in 2017/18 post full knee replacement surgeries and it was amazing how he worked… NO comparison to the NHS physios… I did have 2 sessions post op with NHS physios….what a waste of time. It was never that poor, even 10 years ago, I am sorry to say. Unfortunately going privately is expensive. It should not be that way.
The physios nowadays think they have a desk job! They phone you but no real support and monitoring. So I have to admit I was most surprised in reading your post. Your situation is not descriptive of what is actually happening in most areas nowadays. How lucky you are indeed.
I'm in south-west London and NHS community physio services in my area are contracted out to Connect - i.e. not an NHS service but providing NHS care.
I don't want to rub it in, just illustrating how good it can be - but you get access to an app with your exercise programme on it. Each one links to a demonstration video in case you forget how to do any of your exercises. You can tick off each session on the app to keep a record, and even make a note on any problems like pain or if you couldn't finish it.
The only thing that annoys me about this is I had the idea for this app years ago, when they used to just give you a sheet with basic illustrations on it. I should have taken my idea to Dragon's Den! But my version allowed you to play a song for each set of reps to keep you motivated 😆.
Thank you for replying. I agree the usual practice is pretty poor. I live in Leicestershire. Indeed you’re very lucky to live in South-West London… pretty affluent area. The system seems to be excellent. I like the way they work. Indeed seeing how to do things is always better than looking at a piece of paper …. Naturally once one gets such a good support then it is up to one to carry on doing the exercises regularly.
What a shame you did not show your App on Dragons’ Den… you would have become a wealthy person… 😄. Take care.
I have had loads of physiotherapy over the years. I’ve had NHS and private.
The wait for NHS tends to be long - I waited months and months when I fractured my sacrum. In the end I saw a very good guy that my physiotherapist Pilates teacher recommended and was well on the way to recovery by the time the NHS appointment finally came up. I went to see her rather than say I’d seen someone else - it was on.y a one off as I was already doing everything she would have advised but she did a very good baseline for me. I didn’t want to be labelled as having cancelled an appointment.
I broke my wrist badly in January 2020. When the plaster came off my wrist was a mess - I had CRPS which didn’t help - the NHS physio for that consisted of exercises drawn on an A4 shirt of paper! Totally useless. Eventually the osteoporosis physio rang to see how I was doing because her class had been cancelled because of covid and I told her my wrist was fine but my hand was trashed.. She got me online consultations with a hand therapist.
Just as that was finishing something happened to my shoulder too I couldn’t put my hand behind my back - fasten my bra - raise it and it was absolute agony so I set about finding myself a private physio who specialises in hand / shoulders and who was seeing people - covid restrictions were tailing off by then. She worked on my shoulder with me for about four months, a mixture of manipulation, massage and exercise. I stopped as it was costing me a fortune but I carried on with the exercises and now my shoulder is back to what it used to be. My Pilates teacher keeps saying it is amazing how well I’ve done.
Come summer 2021- I fell over backwards and landed very heavily on my tailbone the GP was useless and said that at my age it was probably a ‘touch of osteoarthritis’ - I knew it wasn’t as I was in absolute agony. I saw a GP in our local hospital who gave me painkillers and put me down for the NHS physiotherapy. In the meanwhile I found a really good private guy who on my second visit said if I was willing to pay he could refer me for an MRI which I did. That showed my ‘touch of osteoarthritis’ was actually a fractured sacrum.
There are some very good physiotherapists out there - they seem to specialise in various areas of the body, it’s best if you can get a recommendation from someone, I’ve just seen one who specialises in nerve damage - I was getting dreadful stabbing nerve pains almost all the time and she was magic - I had some acupuncture, some manipulation and I came away with three simple exercises I can do myself and I’d say 99% of the nerve pain has gone. I still do her exercises though and I do Pilates twice a week with a Pilates teacher who is also a physiotherapist and who is very experienced in dealing with - dare I say it ‘older’ people with osteoporosis.
When I broke my sacrum I thought I’d end up with a blue badge and trading my car in for a mobility scooter - I couldn’t even begin to imagine being mobile and pain free ever again but I am.
So I’d say, get an assessment, get a baseline, get yourself some simple exercise to get you mobile again - and do them regularly. You’ve got to do them - just knowing what you should do won’t help you unless you do it.
In our Pilates group we say ‘use it or lose it’ and that’s so true, if I didn’t do my exercises, my Pilates, climb my stairs and walk every day I just wouldn’t function and I’d be in an awful lot of pain.
Much appreciated. I found that really helpful. What I have taken away from this is that it is possible to find effective help to deal with persistent misfortune but you have to have the tenacity to find it. Your pilates teacher sounds like a treasure.
Hi, yes one has to persevere but one also needs to see a good private physio as well as explained by Fruitandnutcase! Unfortunately the NHS physios are pretty useless nowadays. It wasn’t like that even 10 years ago. So paying for decent help is all very well as long as one can afford it. Sadly not everyone can do so, most unfair.
However if you can it might be a sensible idea to see a good private physio a few times then you can carry on doing the recommended exercises at home afterwards. Good luck.
Thank you. It has been really useful to understand what other people have experienced as it has helped to manage my expectations. The bar has been lowered.
Sorry I could not express more positive information regarding NHS physios. Sadly it is what I, and other people, have experienced for a few years now. Indeed the bar is much lower now but keep on trying to get the best you can from a broken NHS. Of course if you can afford to pay for a good private physio for a few consultations, then carry on practicing the programme of exercises they will have specifically worked out for for needs, it should help. We need to do all we can to help ourselves.
Good points but people nowadays need to pay for a decent physio who will actually make a difference. Most NHS physios are pretty useless. I should know… Do hope you don’t have anymore misadventures.
I think NHS physios must vary. The follow on from my broken wrist was absolutely appalling! A sheet of A4 paper from a doctor, goodbye and diy. You should have seen my arm and hand. It was obviously not right. When I saw my Pilates teacher who is a physiotherapist the following week to see if it was ok to start back she looked at it and asked if I had seen a hand physio because she had never seen anything like it. I don’t suppose the CRPS helped either.
When I finally spoke to the osteoporosis physio she was really good and got me fixed up with a hand therapist- both NHS.
The NHS person I saw for my sacrum just listened to what I was doing at Pilates - all good solid stuff - and said that I was doing all the right things and that there was nothing more she could give me. Unfortunately that appointment came months after the injury which wasn’t much good. Fortunately I had paid for my physio and two private MRI scans by then so at least we knew what the problems were.
It was very lucky you could afford to pay for 2 MRI scans plus a top private physio. Many people could not afford doing so and have to live with the consequences of a failing collapsing NHS service. You probably wouldn’t be able to do Pilates anymore, nor walk and do as much as you’re able now. So lucky escape.
Indeed too many medical professionals do not really help… as you said , a sheet of information, diy and goodbye…. Box ticking, job done! There are a few who still care but one must be lucky to meet them. Take care.
I know because I would never have got anywhere with the doctor - she told me the hospital was busy and that ‘at your age it is probably just a touch of osteoarthritis’. Long story but we have since changed surgeries. When I heard the price of the second scan - it took longer, so cost more - I have to admit I balked at the price, I said I didn’t think I could lie in the machine for the hour it was to take - but what really shocked me was the price. That plus an extra £25 each for my other half and I to get to London anyway, I thought about it and rang back and booked.
I look at it this way - other people spend their savings on lovely holidays etc - mine goes on propping up the NHS by paying for things myself. It’s not how I ever saw things but it’s how it is and as you say I’m lucky I was able to afford to pay for it.
Maybe I should have been more forceful with the GP but I felt shocked and horrified that I was in such pain and the ‘at your age’ comment was the best she could do - she didn’t know me. Our surgery (where we had been good, polite patients for 40 years, not ‘regular flyers’ by any means ) had been taken over by a company from miles away then all the staff left one by one until there wasn’t a single one of the original doctors left.
The ‘diy physio’ - I saw a very young doctor - a much older nurse was in the room at the same time - keeping an eye on him from the look of it. While he was talking to me she went over to a filing cabinet and brought out the sheet of paper which she slapped down on the desk between us. When I asked him about physio, she pointed to the sheet and said ‘that’s it there’. First class customer facing skills.
The osteoporosis physio was definitely one of the caring ones - she told me how to start desensitising my CRPS and fixed me up with a video call from the hand specialist who worked with me for several weeks. Without her help I would have been absolutely sunk because it all happened at the start of the first covid lockdown.
Please do not feel I was critical of your decision in getting expensive private investigation and treatment when a decent doctor or consultant should have ensured you got the necessary investigation and treatment on the NHS. You do not need to justify your decisions and actions. I was simply pointing out how worrying the services offered by the NHS are really poor. The system is falling apart.
The trouble with GP surgeries is that they are privately run, contracted out by the government, hence their most important aim is not patients’ welfare but making money. Greed taking over care. I get the exact same uncaring comments ´What do you expect at your age and with having RA plus for so long? Many people who have had aggressive RA like you have died’ …. Yes! How shocking is that…. they started saying that as soon as I turned 70, am now 77. I have lost respect for most GPs and some consultants now. I alway have to push, demand etc. Yet they can see how rapidly my health/mobility have deteriorated even in the past 6 months, and I live alone, family living a long way away and having demanding careers. They can see the pain I am in. To no avail.
So please do not feel guilty. Although you’re lucky to be able to afford private health (well, look at the USA), it is your money and you’re entitled to use it as you want, prioritising your health. I do sometimes resort to seeing a consultant privately in trying to speed up the process, I always feel guilty.
I was listening to a programme on Radio 4 a few weeks ago (and also read articles in the national press) stating that the UK was the penultimate country from the global rich countries to provide the worst health service, leading to premature deaths. The only country being the very worse and bottom of the list is the US. No surprise there. So this explains what is happening here.
No, I didn’t think that for a minute. I do wish I hadn’t dumped my private health company years ago though. I’d paid in for years, the first time I wanted to use it to see a specialist they refused to pay because they said they didn’t support anything to do with teeth / jaws. How did they know what the problem was without me seeing someone what the exact cause was? Anyway in a fit of pique I left them. So I pay for it with my own money.
The health service really is on its knees which is sad - the NHS and I were born in the same year. I’ve never seen anyone privately to speed up the process though - my money goes on my teeth, feet, eyes, physiotherapy, Pilates all stuff to try and keep me fit and away from doctors.
To say that ‘Many people who have had aggressive RA like you have died’ is such a cheek isn’t it. A friend’s wife who had her thyroid whipped out and who just hasn’t picked up was told by her endrocrinologist ‘I’ve saved your life, what more do you want’. I said tell him ‘how about you want to feel better?
Yes, sadly the NHS is possibly not as much the envy of the world as our leaders keep reminding us it is. When it’s good, it’s very good and we are lucky to have it but there is a lot of room for improvement.
So pleased you don’t think I was criticising you. The fact I went to see a few consultants privately was because I kept passing out, either while walking in the garden or worse while sitting at the table having a meal and often came round on the floor, the chair having fallen too. Also while I was sitting on the sofa watching TV or reading. Yet the GP wasn’t bothered to refer me…. Yes! So I had to fight my own battles alone although not feeling well at all. I was born 2 years before the NHS was set up but i was born in France so was used to a pretty good health service. When I first came over to the UK for studying purpose I noticed quite a difference. Of course the NHS was/is a great idea nevertheless. Sadly it is on it’s way out, hence the lack of necessary care. What a great pity.
I've had physiotherapy twice - once for my shoulder and once for my hand . Both on the NHS at a time when the wait wasn't so long. The rheumatology team didn't hesitate to refer me. Both were very helpful - I had a thorough assessment and was given a programme of simple, but effective exercises to follow at home. I still use them for 'maintenance' .
I've had physiotherapy in conjunction with acupuncture for mild osteoarthritis in my hip. Works a treat! Not a long term cure but certainly gives me some sustained relief from the discomfort. I'm not very good with keeping up with the exercises at home but after my weekly Pilates class it usually feels much better.
When my RA was at its peak in my hands it was an occupational therapist that I was referred to at the hospital. They gave me simple exercises to follow at home eg gently squeezing a soft rubber ball. The combination of that together with hand massage and hot wax therapy three times a week for about 3/4 months was hugely beneficial. Fortunately my RA has been very quiet for nearly 20 years now. It morphed into SLE with subsequent treatment.
I am sorry to hear that you still have ongoing problems. I haven't tried Pilates but will do some research as I can't do the weight bearing in yoga that I used to be able to do and my balance is shot.
How wonderful you had such good care especially for your hands. I have lost the use of my hands, cannot prep food properly, can’t dress myself properly, well in a fashion… and it takes ages to do anything… writs are most painful too, all my fingers are swollen…. Twisted, deformed. Can’t hold onto things because of pain. Life has become most difficult, especially when living alone. I also have neuropathy in my finger tips now. My RA isn’t well controlled nowadays. So, yes, I get most frustrated as was very independent, and fed up. The pain (in my whole body, shoulders, elbows, etc,) is unbearable at times. RA is a nasty life changing disease. No miracle is available when one’s immune system is destroyed.
I'm sorry to hear that. Yes I was lucky that I was able to access therapy early on. Anecdotally (although I know others have experienced this too) my RA improved dramatically after being hospitalised with a particularly bad kidney infection and receiving iv antibiotics and then went into remission after a subsequent pregnancy.
As you say sadly there is no miracle cure. Take care.
Note I do not have RA but a diagnosis of Adult Onset Stills Disease which is of rheumatoid nature. I’ve paid for physio and had NHS physio for joint pain, stiffness and immobility plus an ankle injury which resulted in enthesitis. I agree with others that recommendation is important otherwise you can spend money and achieve nothing, I can say that imposing the exercise on yourself is vital to recovery, only you can do it. I swim when I can which helps all my ailments, if you can, yoga snd pilates etc are excellent, personally I cannot weight bear on any joint so can’t participate but if I could I would . Walking with limb support is great. Wishing you better days .
Thank you. I am sorry to hear that you are not able to do as much as you would like to. The responses have given me a lot of avenues to explore. What does limb support involve?
When I was first diagnosed 1979, I had rigid metal ‘splints’ fitted at hospital to both wrists and a less rigid version to the knees. I wore these for about 5 years during the day then slowly less snd less each day until I was able to use lighter more flexible supports. These days I use elastic bandage (tubigrip) on my wrists knees. I use a sports ankle brace following an injury to my leg which left me with a slight limp and allowed Enthesitis to develop but that was injury related rather than caused by my condition. I think limb support is quite usual amongst sufferers. Sorry you can’t enjoy yoga any more, I read about chair yoga somewhere….
Yes….definitely ask your rheumy team for a physio referral.
You are newly diagnosed, so don’t try to run before you can walk.I am 20+ years diagnosed & there are still movements I can’t make.
In fact you sound very fortunate that you are already anticipating getting moving….it can take people years to get where you appear to be. ..well done.
But as I said….speak to your rheumy team..they will assess how soon you should get physio…..pushing yourself too much too soon could slow your progress.
But congratulations on being so fortunate that your prescribed drugs are working so well.
Let’s hope you won’t need that Blue Badge after all.
Just be a little bit cautious here, as it’s my understanding that physio shouldn’t be undertaken if inflammation is still present in joints. My Rheumatology team includes specialist physiotherapists, so perhaps approach your own team for advice?
Just had another thought. NRAS has a marvellous section on exercises for RA patients, but please don’t do anything that increases your pain. It’s still early-days for you, treatment-wise. Good luck with everything.
definitely get rheumatology to refer hi for physio, or refer yourself if that’s an option. Where I live anyone can apply for a blue badge. I don’t claim any benefits although I’m told I should apply for pip. I just submit copies of summaries detailing my diagnoses and relevant test results, like my MRIs and lung function tests. All 3 times I’ve applied I’ve been awarded my badge without any need for assessment.
Whoops, I forgot to hit the reply button. I don't have PIP because at the moment I don't think I would meet all the criteria but I will look to see what other medical evidence I have. Thanks.
Contact your rheumatology team either by phoning their helpline or emailing as most have physiotherapists attached to them who work specifically with RA patients. I have used this service a lot during my many years of RA. You may struggle to get a blue badge after only having this disease for 6months as it doesn’t sound like your meds are doing what they need to do and again I would advise telling your rheumatology team your symptoms. No point suffering in silence with RA
I have had physio both NHS and private. From personal experience, the private was superior to NHS - easier to get an appointment and much more detailed help than NHS. However, that may depend on where you are in the country - down here in Cornwall the wheels of the NHS turn very slowly
Physiotherapy has kept me going through 27 years of RA. I have used NHS physios but unless your GP surgery has an in house physio I find the wait is too long. I use a private physio who I also do Pilates classes with (Which are brilliant for RA). The exercises and advice they gave me have kept me mobile through all my various flares and problems. I find the feeling of having some control over my RA really helps mentally too.
Thanks. The replies have confirmed that I do need to find some expertise. As a newbie I am surprised that the NHS doesn't really work in a holistic way. The consultant didn't really deal with income, mental or physical health, which fortunately NRAS has covered.
Hi. I’ve worked in the NHS for over 40 years as a senior orthopaedic sister and practice nurse ( now thankfully retired) and although I love it and it’s a unique organisation it can never be accused of working in a holistic way!
It always astonished me that throughout the years it has mopped up, stitched up, cleared up, knitted together and variously treated its patients but managed not to communicate effectively with other departments or hospitals on an epic scale. Indeed, we still don’t have a functioning, joined-up IT system after all these years. Mental and physical health don’t stand much of a chance as they are still largely divorced from each other and the staff who are still working are knackered.
I would love to see really effective reform so that those of us with the sort of long-term problems we have to cope with are treated by a single service designed round the patient. There are such health services in other countries and best practice research shows they work very well but of course they depend on political will, dosh in industrial quantities and management which actually has qualifications to do the job…..
Hey ho, until that pig flies we’re destined to muddle along but I wish we weren’t. Having had RA for 34 years and having used the NHS until it has squeaked I can’t praise the staff highly enough but the organisation has serious flaws……..
Gosh, that was a rant 😡 Good for NRAS - they’re great and always good for advice and help. Hope your quest for a physio is successful.
I completely agree with you. The NHS is left to pick up the pieces of very poor decisions time and time again, at huge cost to individuals. Don't get me started on prevention, infection control, staff retention, long term planning, IT etc. I get twitchy when decision makers talk about 'reform' when really it should be 'improvement'. Off to email the rheumy team and I suspect it will be a quest.
Agree with you Amnesiac - every dept / doctor seems to treat ‘their’ part of you in complete isolation. I have osteoporosis now but when I think of the missed opportunities to avoid or at least reduce the condition I could alternate between weeping and screaming.
I’ve screeched about this for so many years. The idea of treating the bit on offer on the day and totally ignoring the rest of the body, particularly when you’ve got RA, is bizarre. As you rightly point out you’re treated for only one presenting complaint in isolation and that’s where we with RA are at a significant disadvantage often for years.
I have now left all that excitement but being a patient patient is not in my DNA so I shall keep on screeching and hope others do too!
The last NHS physio I saw (this was before the PsA diagnosis) was not just useless, she was dangerous. I obeyed her, I did her damn bridges for 7 months, and not only did things not get better, they actually got worse! When I stopped doing the exercises she told me to do, the pain went away.
During lockdown the physio department at the university I am registered with started offering online consultations and wow, what a difference. She was appalled at the way I had been treated and dismissed by previous physios. And also the NHS ones tend to only do a single body part and are only geared up for acute injuries, not chronic and lifelong conditions. I have Ehlers-Danlos as well as PsA, so formal exercises need to be differentiated for that.
She said that bridges weren't good for me, suggested a few other little exercises, also pointed out that I was doing too much! Gardening, putting the rubbish out, chasing chickens... and yet the NHS ones and even my rheumy never bothered to ask what I do in a day, they just assumed we all sit around doing nothing!
Like others have said, while there is inflammation going on still we shouldn't be doing those exercises. Sadly I am still unmedicated so there is still inflammation going on, so I just keep moving in my daily life and haven't been able to do any specific exercises to increase muscle strength.
That's really helpful. I am going to need to find someone who knows what they are doing. I am afraid that chasing chickens is still very much aspirational for me but my husband says he is willing to drag a packet of chocolate digestives in front of me so I can build up stamina.
It sounds to me that your RA is not well controlled yet so first contact your Rheumy team for advice as your medication may need tweaking.
Also ask your GP for a referral to Occupational Therapy as you may find some equipment helpful that they can offer.
As you are struggling to walk even short distances I agree applying for a Blue Badge is a good idea. I got mine early on in my RA journey when I was suffering very similar problems to you.
Frankly with my symptoms I did not find physiotherapy much help at all until my RA symptoms were under better control. Then hydrotherapy helped a lot. Swimming is good if you can get to a pool. I’ve also started Yoga again - from a chair to start with but now I can get down onto a mat and up again!
Thanks. It is good to hear that you are able to get up from a mat again as I am really missing doing yoga. I didn't have any idea about how long things can take to even see a small improvement.
Keeping moving is hard but so beneficial. The other professional I would recommend is a good podiatrist. I was having severe knee pain and the physio suggested this. New orthotics got rid of the pain completely. I agree that the NHS wou,d be better with a more holistic approach. The consultants focus on the drugs but they are getting better at suggesting other routes. It is sometimes a battle to get the help you need but if you persevere it is worth it. Good luck, you will be your own expert soon!
Thank you. I will bear this in mind. I remember the days when 'cocktail' used to mean a tiny umbrella in a drink. I have learnt quite a lot since then.
My Physiotherapist is my front line health care person. She is the one that keeps me going with exercises etc. My GP gave me a requisition for wrist braces, my physiotherapist told me where to go. Showed me pictures of different braces and which one she thought was the best. She gives me exercises but the rest is up to me too do them daily. I see her when needed for updates or if I am having problems. I find her knowledge and help invaluable but the work and finding the time to do them is up to me.
where I live Physio is a 6 month waiting list and then you just get a phone call with some exercises, so on my doctors advice I went private. I had a frozen shoulder could not do my bra up or lift anything, arm was useless, with in 3 sessions with a private therapist I could use my arm , it was £40 for 45 minutes, he was excellent xx
I had a fantastic Physio. Referred to via my consultant. Derriford hospital Plymouth. I could not move my arms above my head or behind my back. I could not grip a cup or cutlery. He was brilliant . About 4 years ago now. Never looked back 😁😁
I agree with most , the NHS physio and the community physio are beyond useless. Mum was diagnosed with dementia first and they didnt bother with her. Now that its confirmed she had PSP it's too late for her to have meaning ful physio they say.
Can anyone recommend a private physio who can do home visits in London west side ??
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