Yesterday morning i received a phonecall out of the blue. My hospital rang to say i had been referred by my rhumotologist for physio, they had a cancellation for that afternoon would i like the app. Talk about throwing me into a flat spin !! I had to make a decission within a couple of minutes . This is not easy, i had to get my head to remember if i had anything else on for the afternoon, ask myself how much pain i was in as i would have to drive 45 mins to York for the app,let alone pluck up the courage to go alone as my husband was at work.
I decided to take the app as the next one would mean waiting till the end of April. So i managed to get ready and leave in plenty of time so that i could take a steady drive.Lucky yesterday was not a really bad pain day.
Having parked the car i could have done with an hour to sleep!! but no time for a rest. I walked to the main entrance and had to follow the signs for physio, felt like i had entered a parrellel universe. Felt like the world was rushing past me and i was stuck in time. Weird feeling.Talked to myself , told myself i could do this just focus !! self coaching !!!!!!!
Ok horay i found physio, took a seat and waited. ouch, pain in lower back kicked in following the drive. Then i was called in.
The first question i was asked was, what do i want to achieve through the physio? call me stupid but i said the obvious, to have less pain and be able to move more freely . I was then told that pysio could do nothing for the pain of fibro. He had never known pysio to ease the pain of fibro.Can you believe i spent an hour in a cubicle talking to the pysiotherapist about how fibro affects my life and how i can only really help myself to live with it.
I apparently need to loose weight ( currently 3 stone overweight) and decide what i want from my life. He talked about the isolation of being at home and my lack of social life was having an impact on how i was feeling.Clever!! tell me something i dont know.
Tell me how i can loose the weight, i have tried but with limited mobility my weight stays put.
Tell me how i can meet new friends when most of the time i have so much pain i am only happy in my own company.
Tell me who will offer me a job when i dont have the ability to be reliable from one day to another. (i physically and emotionally feel unable to work at present , i am not claiming benefits just being supported by a very understanding husband)
After an hour sitting very uncomfortably i had had no pysio , thought i had stumbled into physciatry.!!!!!!! I told him i didnt think he realised how much it had taken for me to even get to the app on my own and that to me was a huge achievment.
I am going again in 2 weeks when i will be given an MOT to check i am moving correctly. I have also been put on a waiting list for a support session where a group of fibro sufferes meet to learn about helping ourselves to live a fulfilling life through diet and excersie.I am looking forward to this so that i can finally talk to others who totally understand.
Then the sting in the tale, £5.40 car park fee and a 45 min drive home wound up that i had had no physio treatment. I was given home work too, i have to work out what i want from life!!!!!!!!!!! Fibro wont go away so i have to learn to get on with the things i want to do!!!!!!!!! After i have recovered form my app at physio !!!!!!
Great !!!!!!!!!!!!!!
Written by
fibrolou
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I would actually suggest that you complain to the physio department. Your rheumatologist referred you for physio and instead of receiving physio assessment and treatment, you got a lecture, wasting your appointment.
And a psychology exercise as "homework" is completely inappropriate from physio IMO.
This is what we say people should get from physio with Fibro:
* Assessment to check for anything not related to Fibro (joint impingement, swelling, etc - often a physio will be the first healthcare professional to really look at your body).
* Assessment for hypermobility, if not already diagnosed.
* Exercises to strengthen joints without straining them, to protect the hypermobile joints and prevent future injury.
* Assessment for postural imbalances. Particular attention should be paid to the spine area, because of the implications of Postural Cervical Cord Compression (PC3) on Fibro.
* A graded program of prescribed stretches and exercises to correct any postural imbalances (ie. start very slowly and gradually build up - the physio shouldn't expect you to do too much at first).
* Teaching you how to exercise in a good neutral posture - without putting strain on your neck.
* Assessment for myofascial trigger points and wider areas of restriction.
* Stretches to help relieve myofascial restrictions.
* Possibly trigger point release manual therapies to help relieve what myofascial restrictions you have at that time that are most problematic.
*Possibly referral to hydrotherapy if this is in the hands of the physio department. Advice should be given on all the above points to enable you to get the most from hydrotherapy though.
Everything in that list apart from trigger point release manual therapies are assessments and physio treatments that you can take forward after your sessions with the physio end. They are aspects in which a physio can really help someone with Fibro long-term.
I had a similar experience. I went for physio several times but he would not do anything on me as I was in so much pain. I was really upset but he referred me back to my doctor. I have now been referred again via a clinical assessment and have been waiting weeks. I have had my time and money wasted and im the one left in pain.
I think we get pushed from pillar to post because the medical profession really doesn't know what to do with us!
Thank you for the information LindseyMid, Having looked at what i should have been offered i actually feel totally humiliated. I was so unprepared for the app i really didnt know what i should expect, surely that was the physios job to tell me.
I will attend the next app and if i am not happy that i am receiving the correct physio i will then make a complaint.
Don't feel humiliated. If anything, get angry. You had a particularly bad experience! It's very common that healthcare professionals do not know how to do deal with Fibro and find it a bit nerve-racking TBH.
I would like us to produce a 'Fibro & Physio' factsheet, but ther's only so much we can do at any one time!
you need to rest after such an ordeal. i agree with lindsey. don;t allow them to humiliate you again. i would print out lindseys advice and take to next meeting just for contingency. you know how stress can affect our cognitive and we all become isolated, so it can be really hit and miss on the day. get angry, you are suffering greatly. the support group sounds good. x
Can I ask where the support group is that you've been referred to? It caught my eye when you said you'd had to travel to York as I'm in Leeds but I haven't been aware of any support groups nearby and I'm feeling so isolated with my fibro. p.s. you did so well to get through the day!
The support group is part of the york district hospital. I think they gather a few patients and run a workshop type group for a few weeks.I too would like to find an ongoing support group but there dont seem to be any in my area ( Ryedale)
It makes me mad that people who are there to help us just dont get it.
I would of been the exact same as you, fighting with my head and body to even get there never mind on your own, as for spur of the moment i am too confused and cannot think what i have to do quickly on the spot.
Well done you for going through it, and it proberbly wiped you out for nothing.
Sorry you can proberbly tell i am mad for you lol.
Good about the support group though, really hope it helps you. Let us know how it goes.
In Wales they don't allow physio for fibro at all as they believe all you do is chase the pain round the body (I found this out after my appt for my knee, which is nothing to do with my FM, kept being bounced as they kept seeing the word FM on my file!).
Many physios do seem to offer Fibro patients treatments which only have a short-lived effect - e.g. direct trigger point release or acupuncture. But they could use their time so much better by giving you the assessments and skills that you need to move forwards.
I haven't seen a physio for Fibro related stuff in years, but still use exercises and stretches I have been prescribed in the past.
You need to be referred to a pelvic pain clinic.I travel a very long way to get to queens sq in London.there is also one I Bristol. I feel sure there is one in Manchester but you need to do some googling. I too. Have experienced physios who act more like amateur clinical psychologists and have left in tears!
Ask your rheumatologist about pain cllinics,not physio
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Physio worries me!!
Physio
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Please can someone enlighten me, I feel like I am going insane 
