Physiotherapy discharged today :-(

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Physiotherapy discharged today :-(

Postby kazisedso » Tue Oct 29, 2013 5:00 pm

Hello folks gentle hugs to all,

So, went for physiotherapy today, but to be honest over the last 5/6 months it's been more like a talking therapy!!

First assessment appointment was great and I was given some really gentle exercises to follow to try and help strengthen my core muscles and hopefully help support my back.

Have been doing said exercises but tbh I am still in the same place as I was when I started... Cannot walk more that 10-15 metres without having to sit down, as the pain in my back and hip is really bad.

I have been provided with, rollator and wheel chair and wrist support through physiotherapy but, unfortunately as I have said, I am still the same.
I don't really know what I was expecting, I know that a magic wand cannot be waved and give me my mobility back ( mores the pity!) but I did have hopes of some improvements :-(.

My physiotherapist was a really lovely lady
and understood fibromyalgia and said that she wouldn't push me too hard as we have to be guided by the amount of pain I'm in.
But , there's not really much more that can be done for me until my pain is under more control.
She has discharged me but has said should I need help again then just to get re-referred by my gp.

I was expecting to be discharged but I now feel a bit deflated and wondered if I could have done any more to help myself!?
I am starting trigger point injections at the end of November. I am trying to stay positive regarding these, hopefully they may help.

Has anyone else had physio and thought hang on I'm getting now where fast here? Or is it just me?

Karen
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Re: Physiotherapy discharged today :-(

Postby julesleics » Tue Oct 29, 2013 6:23 pm

HI Karen

I was attending physio after an operation on my shoulder the other year and the physio I had was really nice and suggested I get re referred for physio for fm (he did state there was not a lot they could do but there were some things) so I had a new referral with the same physio who gave me some exercises to stretch the muscles and also some gentle build up exercises. Alas in our area we are only allowed physio for six sessions and then if you need longer you get another referral but due to cut backs it is not possible to get another referral so basically I ended up being discharged after a second referral. The advice I was given is to try and do gentle stretching exercises to try and loosen the muscles and if you can try and do a little gentle exercise but as you know it is easier said than done when you are in pain and exhausted. Like you Karen it was more like talking therapy because the first couple of sessions were looking at things to help i.e. wrist supports. I didn't do a lot of exercises and I was only there for about 10 minutes at a time but I felt my physio understood my problems.

I don't think there is an awful lot they can do hence the reluctance GPs have in referring. There are gentle exercises to try and stretch your muscles and strengthen them but there is not a great deal they can actually do at least I don't think there is. I think with me I felt that when I went at least it was some kind of support if that makes sense and I felt at least I was being taken seriously by someone who acknowledged the fact I had FM amongst other things and it wasn't easy. Whereas now I am being told learn to live with it and manage it with no support as this is all i keep coming up against from the doctors.

I know that it is a chronic illness but just to be told now basically to get on with it is hard. It is not you Karen I felt much the same. I think some people do benefit from having the exercises but it is not easy to do them when you feel like death.

Sending you lots of gentle hugs too.
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Re: Physiotherapy discharged today :-(

Postby whoami » Tue Oct 29, 2013 6:42 pm

Karen, over the years I have been sent to numerous physiotherapists. Each one had their own way of treating fibro. some with ultrasound treatment others with tens, gentle stretching, massage and so on.

With each try we reached a limit of me benefiting from treatment. I could only lift, pull or push a certain amount. I could only do stretching very limited.

When it comes tona point when nothing is changing or symptoms increase then there is no point anymore. It is what it is. We all have our own breaking point and when we reach it, it is over.

Karen, you don't need to feel you could have done more. You have the skills they taught you. Do what they showed you as best you can. That is all to be expected.

I have had both trigger point injections as well as nerve blocks. The trigger point injections can give some relief. For how long depends on each of us. Some get weeks, days or months. They are "very" painful to get. That is normal. They inject into the place that is causing the pain so until the medication is in it will hurt. If it doesn't hurt they are not in the right spot. This is what the Dr who gave me mine said. He also has fibro.

I hope you get good results Karen..........Lorraine x
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Re: Physiotherapy discharged today :-(

Postby *Lisa* » Tue Oct 29, 2013 6:56 pm

My rant on NHS physio...

Mine stems back over 10years :shock: Was first refered pre FM diagnoses after i was told by a GP to pay privatly for a chiropractor to get things flowing quickly for me.

If the report from the chiropractor said i needed investigations then instead of waiting over 6months i'd be refered within 6 weeks :shock: so thats what i did. He noted to GP i was the worst case of all over mucle stiffness he's ever seen.

GP sent me to NHS physio. My main symptom back then was neck pain/stiffness.

Physio was great and she worked hand on around my neck which helped and relieved the tension after 6 sessions. A few months after the pain/stiffness returned as so back i went seeing same lady and again it relieved this for a time then back i went again :roll: after the 5th time the physio called my GP and said that the symptoms were on going and nothing was being cured and so i need to see a rhumatologist as this is not right for a young person to have such chronic symptoms. She also suggested i may have fibromyalgia, talked to me about it, handed me a leaflet and then GP called me about it.

Off i went to see rhumatologist... FM was diagnosed.

Went back to GP for more physio as this helped me for an acute period which at the time was very important as my kids were young and i needed to be on my feet.

Off i went again but this time a different approach as i now had the FM label :-? was just given stretching exercises to do and then told i will not be able to be seen again as they do not fund illnesses they cannot cure!!! :nono:

This then severely set me back and so my health and FM deteriorated.

I needed that hands on therapy again to keep me afloat yet NHS would not see me now with an FM diagnoses.

I had become so stiff all over that doing the exercises for eacj muscle effected would be a full time job!! plus i felt i was making myself worse as trying to do these alone was a nightmare and found many a time i agrivated the pain not heloed it :roll:

I needed hands on therapy as there were places i was stiff that i couldnt stretch myself.

I ended up gettin a loan out against the mortgage to fund private therapy. I went to all different places , saw many different physio's and spent thousands!!!

I eventually after many years decided to find my origanal NHS physiotherapist to see if she would see me privatly. Luckily after a while i tracked her down. :-D :-D and she was doing some private physio.

Anyways she now comes to me and works on me for an hour each time , working on the muscles from my back to front to neck to lower back to ribs and much more. No way could i stretch the muscles that are effected now :shock: i now pay for this out of my DLA moneys.

So... a few months ago my back went , like it does :roll: and i was told i could be refered to a physio (for muscle sprain not FM) i said NO :nono: stick it up ya jumper!!! as i knew exactly what would happen!! more stretchin exercises! waste of my time and theres :roll:

Not sayin stretching isnt a good thing because it is but when your so severely effected like myself its totaly impossible to do this for every muscle in the body :crazy: :crazy: when it was sat in one area i could try but not now :crazy:

NHS stopped doing hands on therapy for fibro many years back and this new regime is supposed to help us long term being more beneficial but we all tend to be different. Some needing stretching exercises and some that have gone way past that. One glove just dont fit all!! :nono:
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Physiotherapy discharged today :-(

Postby whoami » Tue Oct 29, 2013 9:14 pm

Do you find a lot of insurance agencies stop treatments if there is no significant improvement.

After my accident 25 years ago, that triggered fibro right away both the government health care as well as the workers compensation stopped all physio and other treatments once they considered that the illness/injury was not going to get any better.

My hubby is going through the same thing. He put his hand through a table saw and because of over using his good arm he damaged it also. He now, after three years has been deemed maximum medical recovery. Therefore any treatment will stop. He has to live with it.
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Re: Physiotherapy discharged today :-(

Postby *Lisa* » Tue Oct 29, 2013 9:52 pm

Very few people in the UK use insurance for health as majority of UK citizens have the NHS.

I dint have any health insurance so had to pay out of my own pocket for therapies because the NHS stopped treatment when fibro was diagnosed but does sound very familuar :shock:
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Physiotherapy discharged today :-(

Postby julesleics » Wed Oct 30, 2013 11:37 am

What works for one doesn't work for another and I think that is the problem. That was the problem when I went to pain management the physio was the same for everyone even though everyone had different problems and we had people on the course who worked out at a gym so the exercises were an absolute breeze for them and the physio upped the exercises and there was me and this other poor lady who just couldn't do it to the physios disgust and she made us feel awful because we couldn't do it. The pain management I just couldn't get on with for various reasons and was unable to complete the course but I can remember when I went to physio at our local hospital the other year he said pretty well the same everyone is different and what works for one doesn't work for another. The main thing is working on the stiffness which is why they recommend stretching to try and loosen the joints and muscles up.

The main thing though with physio is that I think a lot of areas now only allow you to go for so long (our area is 6 sessions) and then you are discharged.
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Re: Physiotherapy discharged today :-(

Postby whoami » Wed Oct 30, 2013 2:03 pm

Lisa, Does NHS not acknowledge fibro, is this why they stopped your treatments.

I must say, in general we have a great health care program. Like I have said before I have had many surgeries, cancer, stroke, babies etc. and have not paidca penny out of my pocket for anything. Our Ontario Health Insurance Plan is available to all Ontario citizens no matter what their illness or income. They do stop treatments such as physio on something that is not getting any better and considered maximum medical recovery.

i am lucky also in one way . Because my injury at work triggered the fibro all my drugs for fibro...patches, anti depressents etc , any items such as canes and what not and any treatment are covered by them. It is great because my prescription bill a month is around £500.
Any meds for other illnesses cost me about £1.50 each.
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Re: Physiotherapy discharged today :-(

Postby julesleics » Wed Oct 30, 2013 4:36 pm

I don't think it is so much that they don't acknowledge it it is just that it is a chronic illness that they cannot cure and I think the resources are such that they don't want to spend too much on something that has no cure if that makes sense. I think they will give you so much and then basically it is you have to learn to manage and cope with it as best as you can.

I think as said before Rheumatology will make the diagnosis and then refer you to pain clinic or back to GP care. If they think physio will help then you can go but only for a limited amount of sessions, same as counselling again you are limited to how many sessions you can have.

I think the emphasis is very much on learning to cope and manage your illness as best you can. Trouble is though if you are not under a clinic and the GP is not behind you then it makes it difficult with other organisations such as DWP who then argue that you cannot be that bad or you would be under a consultant and be seeing your GP regularly. It is a no win situation
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