PAIN MANAGEMENT COURSE

[Qgirl]

Hi, has anyone been on the St Tom's INPUT course recently? I have a few questions as I've just had my assessment, but firstly, I'll fill in a few bits of background info. I've had chronic pain for quite a few years now, mostly through having Fibro/M.E, but also back, neck & knees pain for even longer, so, after visiting a local Pain Management team a while ago, with no success, and very little input, I asked to see the top dog consultant for Fibromyalgia pain. Unfortunately, he said there wasn't a team locally that could help me as my case was so complex, i.e..needing to spend most of the time in the wheelchair, due to very bad Knees' pain & back pain & weakness. I can swing through crutches for shortish distances, but get exhausted due to the pain and M.E...thus referring me to St Toms in London..50 odd miles away. The assessment there appeared to go well, but there was a huge emphasis on stair management, if the amount of walking I'd have to do 7-8 times a day & the intensity of the course, psychologically, & physically, would wear me out. A follow up phone call later from the team reiterated that. I'm a little perturbed, as I get the feeling they're trying to put me off as I need to use the wheelchair sometimes, & could get bad days, that this course is only meant for individuals who have no pain below the waist, are energetic, & don't have bad days, in the nicest possible way. I don't know that there are that many people who suffer from chronic pain, can go 5 days a week for 3 weeks, without some sort physical glitch, however temporary. Unfortunately, I can't make any promises on my good health from day to day with ME, but I really feel this is the course for me though & would benefit tremendously I'm sure! Does anyone know if there were other candidates on the course in either a wheelchair, and/or had ME/Fibro? I now have to return there to see the case manager, which seems like a good idea, but just wish it could have been sorted at the assessment. Should I stick to the plan & hope I'll be well enough for the three weeks, or cancel the whole thing? Help! 😩Please!

[luckyjim]

Girl

Sounds as if the course is tailored for the clinicians rather than the patients, strange.

Regards

Jim

[yellow-rose]

The course is full of people with M/E and fibromyalgia. This probably is because they can derive the most benefit from the course.

Is there a reason you need the wheelchair ? I think others go there with the expectation they won't be able to manage but do in the end. It is very much tailored to individuals.

Maybe they feel the wheelchair is used by yourself as a safety behavior. If you can walk using crutches then that is good. Maybe you can come to a compromise - use the wheelchair to get there and then use crutches once there... If you aren't willing to push yourself within set boundaries, or reconsider using a wheelchair then this probably isn't the course for you.

However if you want to improve and understand that you will face challenges, it isn't plain sailing and that there are obstacles in the way - but its in a structured course you can do yourself a lot of good.

My advice - if you want to improve and get better, you have to go on the course.

Good luck what ever you choose.

[Brownsequardsam]

Hi Qgirl

I was a patient at input 5 years ago and had to use my wheelchair due to having spinal cord injury (as well as osteoporosis, scoliosis and severe chronic pain). The focus of the course is to educate patients in managing our pain, firstly by acknowledging it (no one will deny that you are in pain), and secondly how to deal with chronic and debilitating pain on a daily basis. I had to be in the 'Simon Hotel' accommodation on site rather than one of the patient apartments due to not being able to shower independently or to be able to be independent mobility wise. The course leaders did not want me to be in my chair, although to be honest due to the fact I can't actually walk because of my spinal cord injury they had to accept it.

Other patients on the input course mostly had fibro, ME, or limb injuries so it is tailored exactly for you with your ME. Each person is in the same boat so to speak, so you all can encourage and benefit together. The Clinicians are very experienced in dealing with illnesses like fibro and ME, and actually have all suffered from chronic pain themselves. I did find it very challenging fatigue wise and basically had to stay in my room lying down when I wasn't attending. But I was determined to finish the course and I still use the brilliant coping strategies I was taught there.

Every single member of the group I was in found it life changing and have benefitted in many ways since, as we've kept in touch. The people who don't benefit are the ones who feel that the course content simply doesn't apply to them, but I can't stress enough how much research and expertise has gone into the course and the results speak for themselves. It's about getting your life back - and the key to that is managing your pain, and not letting the pain take over your life and your future.

At the end of the day, it's an opportunity you can take to give yourself the chance to get some control back. You can only try it. Yellow-rose's comments are spot on by the way!

I hope this helps.

Best wishes.