Reposted from a question in June 2012

I've reposted Bracept's recent answer (posted yesterday) to a question in June (hope this isn't against the rules!), as I felt that it may not get any air-time that far back. My response will be below - it's a bit long-winded, but, I hope, relevant ...

bracept yesterday

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Hi all,

Maybe you won't like me posting in this thread (as I am a physio and you all don't seem to like us very much) but I hope I can offer a different perspective. From a therapist's and researcher's point of view I have battled to understand FMS throughout my career. I think a lot of the confusion comes from a poor understanding by many medical practitioners and lack of good evidence to clearly define using a bio-psychosocial model what exactly 'it' is. Yes current evidence defines FMS as a permenant condition however I would challenge this from 2 stand points. Firstly longitudinal studies for the evidence to explain the physical and neurological causes of pain associated with FMS are limited therefore we cannot truly know that symptoms have to be permenant. Secondly maybe symptoms have been defined as being permenant because we are not educated enough to have found the appropriate management strategy as yet.

This does not mean I believe it is or isn't a permenant conditions but to say that we really don't know and it is important to challenge the status quo in pursuit of a more effective treatment of FMS.

I think two of the statements above are excellent by LindseyMid and kraftyk8 basically focusing on the importance of the right lifestyle and medical management willl limit the level of disability caused by the symptoms of FMS.

One of the most interesting papers I read recently researched functional MRI imaging showing differences of those who had a diagnosis of FMS. For me this goes along way to explain FMS as a neural condition affecting the central nervous system, which for me is positive as there is strong evidence regarding neuroplasticity and the capacity for adaptation and change of this system with the right external stimulus. I can provide links if anyone is interested.

On behaved my profession regarding my unknown colleagues who have been cast with the title "physioterrorists" I would like to apologise for inadequacies in care that my have resulted in this title. I would like to express that we always try to work in the best interests of our patients and sometimes it can be a stressful job and we don't always get thing right.

I suppose my main focus of this post is to encourage you to educate yourself as much as possible, not only through these support networks but also by reading and researching the evidence available. I have treated hundreds of patients with FMS overs the last 8 years and thousands of patients with many different chronic conditions and one thing I can say for certain is year by year are skills and ability to effectively treat these conditions improves.

I look forward to hearing your replies and wish you all the best in improving day by day!

Regards,

MB

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  • Hi MB,

    Speaking as a podiatrist, who also suffers from FMS, one of the most important lessons you can learn is to see things from your patient's perspective. I have to admit, I was probably guilty of seeing everything as being a surmountable issue before I started having chronic pain (almost 18 months ago). I could see no issue with anything, because I was able to do it, and the research said this and that, and I knew other people with similar conditions who managed very well. This is not a good attitude. I have - through the very nature of my job - educated myself fully in the supposed mechanisms behind FMS, found out which foods aggravate my concomitant IBS, worked out which foods and activities wipe me out completely and make me useless for several hours, tried to work in gentle exercise to fit in with the current research ... believe me, I've done all that. I've even researched it enough to give a presentation to my colleagues as part of our learning & development programme. I'm still exhausted, in constant (but varying levels of) pain, and being forced to take medication just to get through the day. My hands hurt, so my clinical duties have been reduced; my hips and feet are agony, and my knees give way, so I can't stand for more than 5-10 minutes; my hips and lower back are sore if I sit too long in one position.

    This condition puts us in the firing line for a lot of stick from medical professionals; due largely, I believe, to the absence of any objective tests. As a result, many of us have been made to feel like slabs of meat, inconveniences, hypochondriacs, and malingerers by the people we have turned to, hoping to be allowed to feel like normal, healthy individuals again. Many of us have relatives or friends who don't understand, and speak to us in a patronising or derogatory way, and that just makes us feel more hopeless.

    Please don't think I'm being offensive, but I'm merely trying to point out that, firstly, you will never fully understand chronic pain until you experience it (and I truly hope that you never do) - it changes your outlook on life and affects everything that you used to do with ease. It's not necessarily all bad - I think I'm more balanced now, because I've learned the need to assess everything I do, as to whether the results will justify the potential consequences - but it is a change, and it's hard to accept. Secondly, whilst we all empathise with each other on this site, and many of us share symptoms and problems, we are not the same. We take different drug combinations, experience our pains, fatigue, and bolt-on symptoms to different degrees, and we all have different lives, so are affected in totally different ways by our condition. One person's experience is not everyone's, and we can never judge like this.

    Finally, thank you for taking the time to read research into this condition - if you visit the FibroAction website, there is a section on research which you may also be interested in. However, please also listen to your patients - whatever their condition or complaint - and make clinical decisions on an individual basis. One piece of research does not necessarily agree with the next, and your patients may have a valid reason for not responding well to the treatments that worked so well with someone else. At the heart of every treatment plan is a person, who - usually - desperately wants to feel more like the person they used to be. We're healthcare professionals - we should be able to offer them that, even if it's only by treating them as individuals with feelings, rights, and needs.

    I hope that this causes no offence, and that this site in some way helps you to improve your clinical practice with patients with FMS or other causes of chronic pain.

    Sara x

  • Morning Sara, I would like to thank all physios who have given their time to us Fibromites. Each one I have met has been brilliant, trying to help us as best they can with care and mostly excellent suggestions as to how to help manage our cronic pain. Not all ideas work but any that have helped I have taken on board and endeavour to use daily. If I can.

    I think one of the most important things is learning to pace yourself this being a very difficult problem - it so easy to over do it (what ever it may be) At the moment I am pretty much stuck to bed and chair cannot get very far but I do try this has not been helped by my herniatd disc (say no more)

    So I and many of us apreciate all you do to help in a very difficult situation. Cronic pain can lead to cronic misery which is why I am a little bit bonkers and try to smile a lot. xgin

  • What's in a nickname? Fizzioterrorists is just a play on words, it isn't meant to be unkind. some of end up in more pain after a session with the physio, but ultimately it is getting us moving as far as possible.

    Most medical professionals get nicknames, doctors often get Quack, Bones or Sawbones, Phlebotomists get called Vampires, and when I was in Occupational Health I was called Jill The Pill!

    Cheers, Midori

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