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| Chronic pain and what I learned at INPUT; Pain Management Programme | |
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| Tweet Topic Started: 23 Oct 2010, 05:09 PM (281 Views) | |
| Mrs R | 23 Oct 2010, 05:09 PM Post #1 |
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Hi all I have decided to put my forthcoming second surgery on hold after doing the month-long residential pain management course at INPUT, St Thomas's Hospital, London. I cannot recommend this course highly enough to anyone who is struggling with long term pain after surgery, or been told they aren't suitable for any surgery, and feeling helpless, frustrated and frightened the way I was. It has helped me start to get my life back. The course is in 4 week-long sections and you go home at the weekends to try and put into practice what you have learned. It is an intensive mixture of learning about the body, the nature of acute pain and chronic pain, pain medications and what they can and can't do for you, relaxation techniques and physical stretches and exercises (mini 'circuits') to be done every day. They teach you how to pace everyday activities eg house work, gardening as well as exercise and build them up slowly so you can increase your activity without increasing your pain levels. All of us on the course got fitter, more flexible, stronger and more physically confident, including the people on the course who'd been in pain for in excess of 20 years and had done basically no exercise in most of that time. You also get help if you want to cut down any pain medications eg long term opiates which will have ceased to help your pain due to tolerance, but which still give you the side effects. There is also a large element of psychology and occupational therapy. The psychology is based on cognitive behavioural therapy and aims to help you recognise the impact of constant pain on your thinking and emotions and help yourself to break negative thinking habits which increase your distress. There is an afternoon in the third week where friends and family are invited to some sessions about communication and improving relationships which have felt the strain of the impact of chronic pain. The occupational therapy helps you set short, medium and long term goals and make a plan to work towards them. Mine is to try to increase my tolerance of some of the various things I have difficulty with due to the pain in my legs, using various techniques I learned. The most important thing I learned about pain is the following, which I have copied from the very comprehensive manual we were given on the course: Acute pain is short term pain. It is a warning signal that tells us something is wrong with the body, for example as a result of an injury eg a sprained ankle, burn, toothache. It can last seconds, minutes, hours, days or weeks but does eventually stop. Chronic pain is long term pain, which persists more than 6 months after an initial injury or surgery, and can then go on indefinitely, despite treatment. We know that for all tissues in the human body, the healing process is complete after up to 6 months. The pain persists beyond the stage of healing and is not a warning sign of ongoing or further damage occurring. The causes of chronic pain are not completely understood, and knowledge about chronic pain continues to grow, but it is known to be due to changes in the functioning of the central nervous system (the brain and spinal cord). Normal signals of touch, pressure, movement etc pass to the central nervous system but are interpreted by it as abnormal/painful. Thus pain is felt though there is no damage occurring. This is called ‘central sensitisation’. We were taught that as well as pain, you can also feel numbness, tingling, burning etc, and that due to the plasticity of the nervous system, pain can spread from its initial site (me - back of left leg) to other places served by other nerves in close proximity (me - back of right leg and front of both legs and feet). I have also learned that for me personally gentle regular movement helps control my pain, this is an example of the 'pain gate' theory in that it is thought that the movement sensation blocks the transmission of some of the pain signals to the brain ie only a limited number of signals from the body can get through the 'gate' into the brain. Heat works the same way. I have been shown, and I am trying to master, the art of doing the right amount of physical activity to manage my condition, not too little or (my usual problem) too much. Having my pain explained to me properly has really changed the way I cope with it. I am less frightened and frustrated and taking far far less medication. Though I think I will probably be on pregabalin for the rest of my life, I have stopped the anti inflammatories that were probably doing nothing for me 8 months after surgery when there is no inflammation still present, and am taking oxynorm and dihydracodeine much less frequently (twice per month instead of 3 times per week) as I am managing to control my pain better with the techniques they taught me. I feel I have got some control back and am more positive about the future. I was sceptical about how much good a pain management programme could do me. I thought that if they couldn't cure the pain, what was the point? But I have found that if the pain can be managed better, in effect you experience less pain and far less distress. I am so glad I did it rather than take the risk of another operation which my surgeon described as 'a stab in the dark' as to whether it would help the pain down the back of my legs. It might easily have made my pure chronic pain in the areas it has spread to since my first surgery a lot worse, or even spread further, as this is something I sadly am clearly prone to. Who knows whether the pain down the back of my thighs would have been helped but with what I know about my pain now, I think the odds are against it. If anyone wants to know more, am happy to answer any questions, feel free to PM me as I'd like to try and help anyone who thinks the INPUT course is something that might be relevant to their situation. They take patients from anywhere, as it is the only 4 week residential course which the NHS funds and it is supposed to serve the whole country. |
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2004-05 After 12 yrs of serious competitive sport, degeneration and tears L5/S1 and L4/5. 6 wks off work and went back p/t only. Told too young for surgery at 31 and that it probably won't help 2005-09 Dorsal root ganglion/steroid injections, amitriptyline, physio, osteopath, pilates and swimming 4 times per wk, back to working f/t 2009 Pain worse, saw Mr Lam at Guys. MRI: further degeneration in both discs and tear in L4/5. Discogram May 2009 14 Jan 2010 ADR L4/5, fusion L5/S1 by Mr Lam | |
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| Lynda | 23 Oct 2010, 06:56 PM Post #2 |
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Thank you Mr R for giving your excellent account of the pain management course you recently attended. I have wondered how youwere. I have heard such reports about the INPUT course a St Thomas' before and am pleased you have benefited and it has helped you "start to get your life back." Knowledge and understanding, about any condtion, not just pain is helpful and individuals really do benefit from being as informed as they can about their own condition. You have done really well with cutting down your medication intake and I wish you continued improvement in the future. Very best wishes to you Lynda |
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May 2008 onwards - Lumbar facet injections - First post-op ones four years post surgery, have lost count of the number I've had since then but they do help. Pre-op they didn't make much difference- Mr Shackleford, Warrington Feb 2008 - Cervical TDR, (Activ C's) C5/6 & C6/7- Mr Shackleford, Warrington May 2006 - Craniotomy and resection frontal lobe brain tumour - The Walton Centre for Neurology and Neurosurgery Feb 2004 - Lumbar TDR, (ProDisc's) L4/5 & L5/S1 - Mr Shackleford, Warrington | |
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| ajj1001 | 24 Oct 2010, 03:43 PM Post #3 |
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Thanks for the report back. It sounds very similar to the Salford Royal Pain Management Programme. Were there many people attending from around the country? Did you discuss your next surgery as part of the programme or was the decision to put on hold one you reached independently? I hope you can now reap the benefits of the course now and enjoy a bit more control of your ongoing issues. |
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Std Meds Gabapentin, MR Tramadol, Paracetemol, Laxatives 2011 Sept PLIF L4 - S1 2010 May Discogram L2/L3 & L3/L4 both looking ok. 2009 May PLG Fusion L5/S1 Charite in situ April Dismissed 2008 Caudal Epidural failed to work 2007 Deterioration L5/S1 Facet arthritis, Loss of disc height. 2004 Returned to Work 2002 Aug - physio March 2 level ADR Charite L4/5, L5/S1 2000 Broadbased disc prolapses L4/5, L5/S1 | |
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| csutton1 | 24 Oct 2010, 04:36 PM Post #4 |
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it also sounds like the pain management course at fairfield in Bury except for the residential part of it. that is run over I think it was 12 weeks and we did all the CBT stuff and some circit training, etc I did it a few years ago and still practice a lot of their techniques such as pacing and keeping some mobility. I hope it continues to do you good.
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Take Care Carole 1986 X-Ray .DDD. Physio 2005 Spinal rehab 2006 Scan abnormal Lumber Spine and Pelvis. Severe DDD 2007 Epidural, a told to lose 3 stone for freedom disct L4/5 and L5/S1. more Physio 2009 2nd scan rapid escalation L2/3, 3/4, 4/5, 5/1mr ross referred to mr Shackleford scan on 15/10/09 see Mr C 17/12/09 told can not operate to much damage now. 24/6/10 Discograme not suitable for surgery After 3 years wait . (Angry) 11/7/12 new scan 27th july warrington. | |
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| Mrs R | 26 Oct 2010, 10:58 AM Post #5 |
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I think they said INPUT is the NHS model, has been going since 1987 and we had observers in every session from other trusts. They have research which showed that patients seem to have a beter outcome from the intensive residential experience so it's a shame the NHS won't fund more than 1 residential course. There were several people on my course from outside London. I have my first follow up soon, am really looking forward to seeing people from my group as the support is really useful. We've been emailing and facebooking since the course which has been great. |
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2004-05 After 12 yrs of serious competitive sport, degeneration and tears L5/S1 and L4/5. 6 wks off work and went back p/t only. Told too young for surgery at 31 and that it probably won't help 2005-09 Dorsal root ganglion/steroid injections, amitriptyline, physio, osteopath, pilates and swimming 4 times per wk, back to working f/t 2009 Pain worse, saw Mr Lam at Guys. MRI: further degeneration in both discs and tear in L4/5. Discogram May 2009 14 Jan 2010 ADR L4/5, fusion L5/S1 by Mr Lam | |
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