Questions arising after and during Pain management courses

[parent]

Hi Everyone,

Steph had her assessment yesterday for PMC. She has being offered the course but it is an opt in programme, basically we go away and think about what the programme provides and decide if Steph wants to do it. (yes i can hear you saying and the problem with that is ??) The problem is two possibly three fold.

Firstly Steph's sleep pattern is a cause for concern their words not mine. Despite everything we have tried, with sleep hygeine Steph cannot maintain a regular sleep pattern, actually she can but it is the opposite of everything classed as "normal" Steph goes to bed same time every night but does not fall asleep until 5am consequently she can't get up in the morning and is often not up till late afternoon.

Secondly Steph's current levels of stamina, Steph is unable to do anything for more then 1.5 to 2 hrs without her pain & fatigue increasing and is unable to do this level everyday.

Thirdly Funding if we opt into the pmc the local pct has to fund her place.

I am more concerned with first two probs as Steph is well below their baseline for taking patients onto the course as it is very demanding. Mon-Fri 9-5 for 3 weeks they said it will most certainly cause her a flare up, she is in one all the time both Steph & me know it will be agony, we both know that physically she would not be able to endure this level of rehab and i'm sure given time it would affect her mentally. I feel very sad and have had a cry as we have both been knocked down yet again.

The Assessors said yesterday that they do push the patients and that the patient will hate them, and for some will want to leave the course

So although we could opt in for the programme, she couldn't start straight away would have to go on the waiting list. I would have to get her to the baseline at least for Steph to have any hope of doing the course so we are left to our own devices yet again.

AAARRRGGGHHH!!!!

[lil_miffy]

my physio wants to refer me to a pain clinic. im happy to do this but have no idea what to expect, what they will do and how often i will have to go.
im nervous that becuase of where i live they wont have much experience of hms. the physio also wanted me to have some kind of psychological help but i said no striaght away. i hate that people see me once and assume that my problems are becuase i can't cope. I am a very positive person and do everythign i can to manage my condition postiively . i hardly ever get down about it. I dont want to have any psych help becuase of what happened with the psych team and my medication making me blind. i know i dont need it and its not that im just not open to it. Will people at a pain clinic think i need psych help too just becuase of my past mental health issues?

[hannah]

psych help related to pain management, in my experience, isn't about it being because you are messed up in the head, more recognising that life with chronic pain is difficult and coping strategies are needed. I think psych support can be offered as routine.
things like CBT, goal setting, pacing, communicating with friends and family are covered in the general PMCs.

Hope it helps you. But remember, when they say that your pain 'doesn't have a physical cause', they aren't talking about acute dislocations, they are talking about the background levels - where the nerves have been annoyed so often that they are sending the wrong signals. They also aren't sating it is 'psychological'.

Good luck,
H

[barkingmad]

I just want to say that Hannah is right. We get a lot of people calling the helpline confused because they are told their pain is in their head by professionals who mean well but dont realise the implications of what they are saying.

Basically they are talking about how our brains receive amplified pain messages through the spinal cord, ie you stub your toe pain message shutes up spinal cord, in chronic pain it gets amplified in spinal cord so message that brain receives suggests that you have had a major injury, when it was a stubbed toe. hence pain is in your head should be pain is in your spinal cord and brain!

The psychological help offered in pain management is in the form of CBT, sometimes its offered on a one to one basis. but it isnt designed to examine your life from a child to adulthood. Its designed to challenge your thinking about pain messages and thought, behaviours and emotions. So dont be worried about it, it is true that sometimes people 'realise' that their pain is mixed up with some history, but that is because of learned behaviours and how you coped with situations at that time, ie arguing with hubby caused extra pain, you went to bed for 4 days, therefore never disagree with hubby again...admittedly that is a very simplified example but how we deal with pain and what we observe in others who have pain (and quite often with us it could be our parents and siblings) is usually mixed up in how we cope with pain.

Chronic Pain is always amplified by stress whether it is physical, emotional or pyschological. So hence the intro of pain gateways and the strategies to stop the pain.

I hope this helps, I think I needed to explain this to myself as much as anyone else today, as I have started my swimming!

[sueiz]

Last week on my pain management course, they wanted to record our "base level" of functional ability - ie satnding, sitting, walsking, picking things up, stairs etc.

One of th4e tests was standing up from & sitting down onto a standard office chair. We weren't allowed to use our arms, and we were timed to see how long it took us to repeat this action 5 times (once being stand up, sit back down.) I explained to the pain physio that this was nigh on impossible for me, even once; a standard height chair is too low and causes my knee and/or spine or hip to sublux. She still insisted that I carry out the test, despite the fact that it caused me intense pain.

Guess what? on the first attempt my knee subluxed and I collapsed back into the chair; on subsequent, extremely painful attempts my hip subluxed, and my spine was in agony. I managed to do the 5 repeats, but only after extreme exertion & pain, to the point that tears were pouring down my face and was unable to continue for a good 15 minutes afterwards.

This all after 2 hours of activity which had already pushed me beyond the limits - and then wouldn't let me miss this week despite it being my daughter's birthday!!

It just makes me laugh when they spend ages telling us to pace, to not overexert ourselves, to stop before it gets p[ainful.....am I weak to have subjected myself to that?

I'm still in pain from it, my hip feels like I've been kicked by a mule; but in the spirit of pacing and doing despite the pain I've carried on regardless....but is that wise?

I'm so confused; I understand all the theory, Ijust don't see how making me do far far more than I should or could is helpful?

[Rosie]

Hi Sue

I met similar attitudes on the Pain management course i attended a few years ago,(OK- 5 years ago). It is vey difficult to get across to some people running these courses that doing wehat they ask will in fact cause you more injuries and pain. The courses are really meant for people with chronic pain, so a comment like yours about making things worse for yourself is ignored. The aim of the course is to get people through the perception that pain means something wrong to a point where they can disregard the pain and continue with their life. If they can someone through this barrier then it usually results in that person being able to cope with their chronic pain more successfully, and stop them restricting their actions in the belief that walking/sitting/exercis is going to cause more pain. This theory works well for many people with chronic pain. BUT, we don't fit this very well as of course we have both the chronic pain that this condition brings, and acute pain caused by injuries, subluxations, dislocations etc. This is often poorly understood by people runnign these courses.
So, you may have to out your foot down and say no, maybe do it once to demonstarte your problems, and then leave it at that, although be prepared to be told off for being unco-operative etc. At the end of the day a pain management course is meant to be about you getting control back over your life, rather than letting the pain rule it, and to me this means being firm with them, as well as the pacing etc that you mention? Do you have a key worker on the course? or a counsellor? Can you discuss it with them. Point out that if they insist on you doing things that cause you injuries then you are unlikely to be able to complete the course.
I was also told that the reason I was on the course was because everything else had failed me so it was Ok to ignore all previous advice about my condition, and I disputed this by saying that I wanted to learn pain management techniques that they could teach me, in order to supplement what I already knew could help me, not to replace it entirely. They couldn't really argue with this, although one woman did try. My major issue was the exercises that they wanted me to do, some of which I knew weren't suitable for me as I was subluxing my shoulders and moving my hips, knees and spine into their hypermobile range in order to do the exercises.
I hope you do manage to complete the course, but don't cause yourself a major setback in order to comply with everything.

Rosie

[everhopeful]

I am seeing a pain management doctor at the moment who has the reputation of being "very good". So far he has changed all my meds and I have noticed that it is a better combination for me. Instead of codeine/paracetamol and amitryptyline, he has changed me to tramadol and paracetamol together (as apparently, they do different jobs) and a slow release tramadol at 8pm with nortryptyline instead of ammi and has upped the amount I take.

Next is a visit with pm nurse, and then a few weeks after that, the pm physio....at which point I may go onto a group course. He also mentioned the possibility of tens (does anyone have experience of using tens on a pmc?) I think he has already hit the nail on the head from my questionnaire's at my first appointment.......PACING!!!

I am open to suggestions that they have to offer. Any problems with physio and I will refer them to my Hospital physio as he is brilliant at understanding hms excercises. The only reason I can't go to him at the moment was that my POTS was getting in the way and I couldn't stand to do the excercises at the double bars. I can't go back until the GP gives me the all clear........I can't take POTs meds because it's the opposite to my Raynauds meds....so that will be a while before I can go back there.

So that has just given me another thought......the excercises on the pmc, are any of them standing excercises? Cos if they are I will just pass out if they push me too hard.
Can't believe how bad all that sounds, but POts is stopping me do so much at the moment! AArrggghh!

[sueiz]

Thanks Rosie for that comprehensive reply!

When I went back the next week, clearly still in pain, I was able to talk to the lady who is observing the course (presumably with a view to running it herself at some point) and she seemed much more sympathetic. Although the comment "your body obviously hasn't read the text books" could be taken several ways - I'm not sure if she was being sympathetic or sarcastic!

To be fair to the pm guys, I think part of the problem is that the course is aimed at those with less complex problems than me, and much less disabled than me! Add to that the fact that I find it really difficult to stop before the pain kicks in (too much army training?!) and hating to be the worst at everything...

I've decided that like others of you, I have to cherry-pick the advice, adapt the exercises - yes, everhopeful, about 50% of the exercises are standing - and have resigned myself to not really being able to adapt the pacing techniques until after the course ends this week! But then, family life isn't exactly easy to shape round my pacing requirements, never mind trying to work too!

To anyone considering a pmc, I'd say go for it, but be a bit more stubborn than me and be prepared for the inevitable "you're not trying" attitudes. I've decided it's a great opportunity to educate them about HMS in return!

[chelseagirl]

I attended my first pain management session today and came out feeling quite positive. I saw the special nurse who said i could increase my dose of Tramadol and to add Paracetamol with it and they will review it. She then sent me to the pain management physio, who will discuss my notes with my regular physio. so that they can work together. They have also booked me in to try Tens Machine and some hydrotherapy. I have not tried any of these before so fingers crossed

[trekster]

How do i find a pain management course?

[Rosie]

Hi all

Trekster, you need to be referred by your GP, consultant or pain clinic to most pain management courses. I haven't heard of any that are slef-referal.

Rosie

[trekster]

Ok cheers Rosie, there is the expert patients programme and ive got a few leaflets on courses from my physio.

[raewire]

Does anyone have experience of pain management courses in the North West of England? I am considering discussing the option of attending one with my GP and was wondering how others with hms have found them? I read a few of the posts on this thread (apologies for not reading them all but there are a lot of them and they go back quite some time!) it seems to me that it is a case of taking the information and adapting it to best suit your individual needs, is this the case? Sorry for all the queries.
Raewire

[barkingmad]

Hi Raewire, it is very much the case of picking bits which work for you. It is worth going back for a read. Good luck with getting a referral to a course in the North West!

[raewire]

Thanks barkingmad,
I see the rheumatologist again on 19th so Ill be asking about a referral then.