I have been attending physio at my local hospital every couple of weeks since October but yesterday my Physiotherapist informed me that I have used up all of my NHS sessions, so will no longer be able to attend, and he has signed me off, despite originally being told they would be available long term!
They were my lifeline, keeping me fit, mobile and motivated to exercise. I am shell shocked and worried about how to cope without them in the future especially as everyone commented on how well I was doing when I was having them regularly. I have tried to arrange private sessions but there seems to be a lack of physiotherapists in my area, and apparently the NHS are not able to recommend any type of therapy practitioners to me, thus leaving me high and dry! I don't relish the thought of starting again with someone new anyway!
I am feeling lost and abandoned, totally demotivated and actually just plain angry about it at the moment! I think my physiotherapist was trying to say that there was no more he could for me and the NHS can't fund long term care for repetitive treatment. I can only do very basic exercises so that would be classed as repetitive
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sparkle247
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I joined a local gym after my sessions and do what the physio taught me. Now the instructors who are all trained in musculoskeletal work help my programme and keep an rye on me. Xx
If you look up the professional body for physiotherapists - they should hold a list of physios in private practice [they don't all necessarily advertise] and you should be able to find one either near to you or one who will travel. Nuffield hospitals also have physios and I would imagine all private hospital groups do and check out your local private gyms they normally have physios working there at least part-time. Good luck:-}
Cece x
ps any manipulation of your joints is not recommended - I was advised not to continue with using a chiropractor by my rheumy.
Thank you for your replies, I think my original post was too long and it didn't all come out!
I have tried pool exercise, but got "stuck " in the pool when my muscles contracted and I couldn't move so the lifeguard had to rescue me. Probably one of the most vulnerable and embarrassing moments of my life. Also I have tried the gym but got disheartened with the little I could do compared to everyone else, so stopped going.
I am just looking into a chiropractor but will cost me a fortune £40 - £50 a time, and not sure manipulation is going to bring on a flare? My physiotherapist said it wouldn't be a good idea to go to one but others have said it may be beneficial when I am feeling well.
If I am honest, I am at my lowest point ever, somewhere I never want to be again....
I felt as though I was climbing a huge mountain. After so much hard work I finally managed to reach halfway but just as I was celebrating how far I had come and much I had achieved, my guide suddenly stopped and told me there was nothing more he could to to help me. Grabbing the only parachute he jumped off the side of the mountain, leaving me alone and helpless, with no means of going up or down on my own. As the fog set in, it felt as though the only option was to follow him off the side... But there was no spare parachute.
Fortunately for me I have a huge support of family and friends and they came to find me in the fog. Gradually they guided me back down the mountain.
So, here I am now, at the bottom of that mountain, and really not sure I want to try again, just in case the same thing happens.
But sometimes you have to keep on trying and often all you need is someone to hold your hand and tell you everything will be ok...
All motivation has just flown out of the window and there is a Self pity party in full swing over here! Sorry for the longwinded post, just needed to vent
Also I am so angry as it just makes no sense physically or financially for the NHS to allow you to relapse and then start all over! Short sighted treatment........I feel my soapbox coming out! lol xx
Hello
I went through the treatment you describe thirty years ago and I had treatments for near on two years. You will find that after treatment you will suffer pain on the joints that they are treating. and possibly could have fares. You will be looking
at pain effecting you for three dayss after treatment, getting better with time. There could be wear on the effected joints.
One thing they are trying out in different areas for weight loss, so they may be able to do for you Your GP may have the power to prescribe a private trainer in a sports centre, you could try that, discuss with GP
The other way is you apply to a sport centre and you could use all their facilities, including possibly a pool, there is a minimum charge although it would work out cheaper than other forms of oardstreatment, as you know what exercises you have to do.
The other way is to purchase some equipment so you will be able to workout at home, sometimes it may be possible to purchase stuff in the classified of from news agents board.
Thank you, that is very helpful. I am going to buy a gym ball at home. I am underweight at the moment due to a bad flare in September and have not managed to put it back on yet, but I find exercise benefits my pain, I just need the motivation to do it when I am in so much pain. Vicious circle I went to the gym for about a month but being quite competitive I got quite frustrated at my lack of ability to do what others could do there. Think I may try the pool again, just a different one to the one where the lifeguard had to rescue me!!! That would be too embarrassing!!
Is it worth going back to your GP and asking if you can be re-referred under the circumstances, or whether s/he can refer you for some other kind of exercise that might benefit you? Hydrotherapy perhaps? If there's nothing free available, if you can afford it it might be worth looking at local private gyms/health clubs. They are often quite quiet during the day so you might not feel put off by the serious gym bunnies (not that you should be - we all do what we can do) and sometimes the pools are warmer and have slopes/shallow steps which might avert the need for rescuing. My mum went to one which was owned/run by a physio. Occupational therapy might also be able to point you in the right direction, or your rheumatology nurse/consultant.
Don't despair, the right thing for you will be out there.
Thank you hun I signed up for the private gym and pool, spa etc in December and went every day for a month before getting disheartened (and stuck in the pool!) I did enjoy it to begin with but then remembered how much more I used to be able to do. The gym trainers were all great and did keep an eye on me, but it became a bit of a running joke that the cycle machine would turn itself off if you didn't pedal fast enough and that quite often happened Funny to begin with but sometimes you just need a bit of encouragement! Lol!
My physio seemed quite adamant there would be nothing further he could help with even to the point of when I asked if there were any particular exercises or massages I could do to stop my glute muscles contracting and stopping me from moving, he replied... well, I could keep on showing you different stretches for certain areas but the next day it will be a different area affected so there is little point.... Surely if it gives me half an hour pain free then there is a huge point? And was he implying it's a bit like flogging a dead horse? Because that is how it feels right now
I thought it might be up to the physio to refer you to hydrotherapy or occupational therapist? We did initially discuss hydrotherapy but decided physio would have quicker results. Wish perhaps I had gone for the hydrotherapy route now?
I belong to local arthritis care group and they hire the hydrotherapy pool out for two hours once a week at local hospital. I pay £2 a week to use the pool, I can move my joints in the very warm water and there is a physio on hand to guide us in the types of exercise to suit whichever joints. I am totally exhausted after but I believe this is what keeps my joints from total collapse. You can stand up to your neck in the bliss warm water and there are steps or a lift to help you in and out. Might be worth checking if you have a group like this where you live. Lynda x
Oh Lynda thank you. What a great idea. I have no idea where to start looking for that type of information, how did you find out about your one? Council or just through your local group? I tried to get in touch with a local RA group but seems they are about 15 miles from me which I find difficult to get to xx
Xx
in reply to
Yes I would be interested to know about this as well. xx
in reply to
Look at Arthritis Care on line, click on 'your area' and some of the venues and activities are listed, otherwise ring 0808 800 4050 and ask for details of your local group and whether or not they offer hydro. Hope you live in an area with a good group.
By the way you can also ask for hydro referral through your GP or rheumy. I have been having hydro sessions for over 10 years now and the original referral was thru my GP and physio. I find it most soothing and helpful. Lynda xx
Thank you for that information, very helpful. I am actually feeling quite angry that I have not been offered more help really. Do the NHS seriously think 7 sessions of physio will help a long term chronic disease?
I have just checked out this site hun, and it is very helpful! thank you! Have e-mailed local support group, as in just down the road!, signed up for info on self help courses and just found an interesting section on physiotherapy... Stating that it is usual to have six sessions. Looks as though I outstayed my welcome then!! So short sighted of NHS though, why not continue the therapies if they work and stop them if they don't?? Common sense never prevails x
Hi Sparkle, Hope you get some help from Arthritis Care. Is there a hospital near you with a hydrotherapy pool, I assume the one you have been getting physio does not have one. If this is the case you may have to be prepared to travel a bit in order to access a pool. I would say that in addition to my weekly hydro session I do sometimes go to our local council run swimming pool if I am feeling up to it. I am able to get in via the new steps they have installed and just do a few little stretches etc. you would not believe it but when I was 16 yrs I swam for my County, now I cannot even swim a width for fear of my knees locking up!!! Life can be very unfair really, because the entire love of my life has been swimming, scuba, or just messing about in the water. Hope you find some help, keep us informed, wld love to hear how you get on, lynda x
Just e-mailed a local group to see what is available
I feel bereft sometimes when I think of how active and competitive I used to be. I loved scuba diving too! Hubby desperate to go back to the Maldives to dive, don't think my RA has quite sunk in with him yet!
That's really not very sympathetic of the physio, is it How rude. You may be able to self-refer to Occupational Therapy. If that's not the case in your area, then either the GP or the Rheumatology clinic should be able to sort that for you. Also it might be worth speaking to the gym people - maybe the manager - and explaining how you feel about needing some encouragement. They probably thought they were being encouraging and jolly, but didn't realise the impact on you. Can they reset the machines so they don't turn off? Or you could just find a nicer gym!
Thank you for your support Dotty. I think I will make an appt to see my GP this month (appts are always hard to get with your own Dr round here! ) and have a chat with her. Xx
Not sure your age so my suggestion my not be of any use! Age UK (Age Concern), in my area do six week courses for free on different modes of educational and physical lessons. I have been trying to get on the chair sessions before I try the pool ones. You have to put your name down on the waiting list, which is quite large in my area, but yours may be different. xx
Thank you Georje, I am 44yrs old so not eligible just yet, but may try and find some other options somewhere. Time to get proactive in sorting my own treatment plan! X
I can only repeat what many others have been told, as have I...Do Not Go To a Chiropracter!!
They are trained to treat injuries and the damage caused by injuries. Not systemic diseases as RA or other Inflamatory diseases. Especially involving the spine. Vertebrae become so fragile with the disease, Chiropractor can cause permanent damage to the vertebrae and nearby nerves. Just not worth the risk!!. Besides, the expense..they generaly will keep you going back for months and years! A local gym with their own Physio is a great idea. They will assess you and help you reach your own potential.
Bless you Lorann, Thank you for your advice. I have checked the charter for physios in my area and there just aren't any around, except one guy who specialises in sports injuries and works for the local football club.Probably not quite the one I am looking for!! Our gyms all have Personal Trainers but again not trained to deal with arthritic problems, one of them even suggested I use the power plates at their gym!
I have booked an appt for an assessment with the chiropractor to see if I am going to be a suitable candidate and go from there. Feeling more positive I am dealing with it myself and not having to rely on the NHS to dump me halfway up a mountain again!! I am in charge this time!! LOL!! xxx.
I am with Lorann on this.... Dont go to a chiropractor especially if u have ever had any sort of spinal pain. I was manipulated by one who had a fantastic reputation but he didnt have the knowledge to know my symptoms were from spinal stenosis and cord compression in the neck, not the muscles. That night I was in agonizing pain because at manipulation he caused the disc to protrude further into the spinal canal.... I lost the total use of my arm until they operated on me urgently by doing my first spinal fusion.
As a lot have said, there are other ways to go (even the sports guy would know heaps about musculoskeletal medicine) so please just be careful. I hope you have some luck, its awful that you were placed in this predicament.
Aww, Netbuddy, that does sound awful I hope you are ok now?
I have e-mailed my rheumatologist and asked his opinion. I think if he perhaps suggested not to go ahead, then I wouldn't but I have heard so many fantastic things about it chiropractors helping RA patients, as well as a few bad experiences.
To be honest I am absolutely desperate at the moment and feel this is something I need to try to get me back on track and keep my general well being moving upwards, and not constantly sliding backwards.
Thank you for your advice, hopefully I will have a better outcome than you did.
Sparkle only you know what situation you are in so I think it was a good idea to email the rheumy and no matter what his answer is, I hope whatever it is you try, works for you Every case is different and my case was unusual so I am tainted by it forever ...lol.... not really but I do feel people should be aware of things that can go wrong.
I think we are all guilty of feeling tainted by one thing or another after bad experiences.
It would be a lie if I said I wasn't nervous, but with the lack of support I am feeling from the medical profession I am trying to claw my way back to where I want to be to keep on top of my RA
Jolly interested in this discussion! I have been poorly since June 2010, and used to do keep fit and gym regularily. Now in flare up and much pain, but would love to go back to gym etc, but fearful of relapse. Just started to go to physio after going to osteopath for 6 weeks for hip pain - he said I had groin strain! Gave up as not getting better. Physio thinks might have nodules on hip joint agrivating hip flexor muscles. Just want to be able to walk again! Anne
My physio didn't divulge any information on his findings, just that I had very little movement in my hips!
I certainly find exercise works wonders for me, I am underweight so not for weight loss, purely to get everything moving and short term pain relief. BUT I struggle to find the inspiration to exercise when my body is crying out in pain, hence my plea for some help in getting me motivated. Sadly there seems a lack of this through the NHS
Sometimes I feel like curling up in a ball to sleep, but more often than not I want to be proactive to get on top of this rubbish disease, but just need a helping hand.
Plenty of medical professionals around to help start you on the ladder, but none that have the time, power or inclination to keep moving you upwards.
Time to take control of my own treatment plan, I have booked in as a new patient with a local chiropractor and have my first assessment a week on Monday! Eeek!
I will worry about the cost another time!
Feeling nervous, but much more positive that I am in control, and not reliant on the NHS. .
Thank you all for your support, I will let you know how I get on and whether or not it works, or makes it worse!!
Don't give up on the idea of a sports physio. The lady I saw was a sports injury specialist, but she certainly knew her stuff about rheumatoid disease and arthritis, and also spotted my joint hypermobility. She was also very good at explaining to me which aspects of my immobility were related to arthritis and which ones were just from falling off too many horses. She sorted out lots of troubling stiffness and it hasn't recurred - I think those were the horse-related ones. But I was referred to her by my rheumatologist, so I guess he had faith in her abilities; it's a different business when you have to find one for yourself.
Thanks Dotty, just wasn't compelled to book with him, especially as you say if you don't really have any recommendations! It can be quite a hands on therapy! Will give the chiropractor a try first and then speak to my GP if that doesn't work and see if they have any suggestions xxx
Have you an exercise referral scheme in your area? This scheme permits GPs and practice nurses to refer people with long term health conditions for exercise. The person is then assessed and can then attend for exercise therapy, usually at the local leisure centre. In this area I know that a lot of people go to the leisure centre on this scheme at a low cost.
Some people in the aqua-fit class that I go to (I can't manage the floor based exercises) have come via that route, although I just booked in after the physio course in the pool (which was fantastic for me). I spoke to the instructor before the first session about my health problems and she is very good,telling me what exercises that I, or the others with disabilities, shouldn't do and giving alternatives.
The aquafit sessions keep me mobile and sane. They are a lovely group too and I really missed the exercise and the people when I had shingles and couldn't go recently. Everyone seemed so pleased to see me back!
Thank you for that hun. I could be referred to a cheaper session at the gym for up to 15 sessions, I think it was? Then I would have to pay full rate. However, I admit to being a bit wimpy after the experiences I have had at other gyms. I purposefully chose gyms that were not local as I did not want to bump into people I know! The subsidised gym sessions on offer are at a local gym, and having recently left a high profile community job where I couldn't walk to the shops without being accosted by clients, I feel very self conscious of my lack of ability these days and can't face the thought of seeing anyone I might know. x
I went to see a very good chiropractor, but that was for a prolapsed disc. He got me 80% and then I had two epidural injections. It is possible I may have to have surgery. I have suffered years with RA and going through a really bad flare up at the moment, waiting to see my Rhumey later this month. If you can find a really good chiro, try it, it is expensive but I felt it was well worth it. Good luck and all the best with your pain relief.
Thank you, that is very reassuring I feel confident that the local, family run practice I have chosen will be able to give some good advice after my assessment and let me know whether or not they will be able to help with pain relief. X
Your welcome, I hope it works out for you, it's best to go by what your Rhumey advises, mine agreed to me seeing a chiro. I did find hospital staff to not agree with chiro's on a whole. We are all different and respond differently to various medications. I tried MTX but had to stop taking it as I would get very sick the next day. I have Enbrel injections every Friday and not sure they are still working or if the flare up is just due to the time of year and the cold damp weather. I really do hope you feel better soon, take care. Sue
Bless you thank you! I have just this moment sent an e-mail to my consultants secretary asking for some advice. Really, really trying to stay off steroid tablets...have hydroxy tabs and steroid injections but did not want to start pred tablets unless I was desperate as only recently diagnosed! Think I might be giving in soon if chiropractor does not offer any help.
As you say we are all different and what works for one person may not work for another. Willing to try anything and feel more positive taking it into my own hands instead of having to jump through hoops with the NHS.
At least this way if something works for me I have the choice to say, yes please that's great, and I want to continue, rather than it being dangled on a stick and then whisked away from me!
And if it doesn't work, well then I can say no thank you
I visit a brilliant chiropractor 3 times a week. Been going for over a year and can't imagine not going. I was having a lot of pain in my rt shoulder last February, went for my appointment and he did a manual adjustment. The pain was excruciating off a few seconds, but have not had any recurrence to date. Do give it try, hope this helps. X
I have to admit to be being a bit nervous about my first assessment! My first one with the physiotherapist had me in quite a lot of pain for several days (felt as though my body had gone into shock!) and I really don't relish the thought of starting from scratch again. But seeing as it is the only option now and I need to move forward, I have to think positive thoughts and just get on with it!!
At least if I know I have an appt with a medical professional, and an exercise plan to keep to, I will, and must, do those exercises each week, and that is the key to my future health.
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I signed up for the private gym and pool, spa etc in December and went every day for a month before getting disheartened (and stuck in the pool!) I did enjoy it to begin with but then remembered how much more I used to be able to do. The gym trainers were all great and did keep an eye on me, but it became a bit of a running joke that the cycle machine would turn itself off if you didn't pedal fast enough and that quite often happened 
How rude. You may be able to self-refer to Occupational Therapy. If that's not the case in your area, then either the GP or the Rheumatology clinic should be able to sort that for you. Also it might be worth speaking to the gym people - maybe the manager - and explaining how you feel about needing some encouragement. They probably thought they were being encouraging and jolly, but didn't realise the impact on you. Can they reset the machines so they don't turn off? Or you could just find a nicer gym! 
Does anyone else get flares after MTX dose? 
Explaining pain and fatigue to colleagues
Knee replacement in March
Very little help from my rheumatology team. 
Posture/Gait specialist - recommendations & advice pleeaasse :)
