Questions arising after and during Pain management courses

[sarahh]

Hi all just an update still waiting for the pain management course to run near me probably june/july. Am not seeing that horrid pain nurse again I will speak to her on the phone but not seeing her face to face again after I was in tears afterwards. I don't need her adding to my problems.

Sarah x

[Hele]

Hi everyone,
I am so glad to read your posts about pain management courses.
I started one, but it was just too far for me to drive, when i asked to not do the exercixes they were making everyone do because i was worried about being able to drive home and then pick my ittle boy up from school they belittled me in front of the rest of the group, they didnt seem to understand that i only had a certain amount of energy and when that was used up i was stuffed. I finished the session then sat in my car and cried, so rang and candcelled my place. I got a very frosty call back saying that i had wasted their time and taken someones elses place.
Now i am struggling to cope with my pain and need some help, am just too worried to go back to the pain management clinic.
Hele

[Rosie]

Hi Hele

Unfortunately, this seems to be a typical response from pain management courses. They are not all like it, but I was put in a similar position when I attended one at Bronllys. They could not seem to grasp that we have acute pain as well as chronic pain. I could not get them to understand that I needed to take care of what I did because I did not want to cause myself more pain. They insisted that this would not happen, and that may be true for chronic pain, but showed a complete lack of understanding of how we are more prone to injuries, and hence to acute pain! On some courses the staff seem to have more know knowledge of HMS/EDS3 and are more informed about the type of exercises that are appropriate for us, but after my course I requested and was given physio for core stability, and even after 9 months of that I still could not do some of the 'gentle' exercises on the course, and I still can't.
My course was residentail, mainly because they did not believe that a working mum could devote enough to a pain management course if she had to go home and cope with family, house, etc and that turned out to be a really good idea. Being on a residential course also gives paticipants the support of each other as we socialised in the evenings, and had loads of time to talk things through with each other. I do hope you find some help for your pain.



Rosie

[gila]

oh hele- even taking the general probs we all had into account- yours totally takes the biscuit!!!!!
belittling you ARRRRRRGGGGGGHHHHHH!
on a course that is supposed to 'psychologically' help you dealing with pain??????!!!!!
oh yeah... belittling is a very well known and respected psychology tool (meant utterly sarcastic!!!!!!)

why does everything that is supposed to help us turn into us having to fight our corner...
(must say the only times it doesnt for me is when seeing prof g or dr hakim....)


I feel like saying "fight them"....but I also know that that takes soooo much energy....which you havent got...
and I dont know whether it would be worth fightin...
though I think you need to get back to them to at least explain...otherwise they'll have you down as a "reluctant/uncooperative" patient....


but...wondering...I know we as individuals should write to our respective courses and 'complain'....but must admit am doubtful about how much notice they would take...

so...would it make sense/be feasible if the HMSA as a well established, respected body could write something re the "oi, we got chronic as well as frequently occurring acute pain- therefore need to be treated/taught somewhat differently" - maybe discuss it with prof g and get him behind it as well- and send it out to all pain management courses.... ???????
xxg
ooops-edited to remove some emoticons

[naama]

I've got an appointment next week with the physio for the COPE programme in London. I'm terrified after all this time of getting onto a programme that they're going to say that because I've been referred to a consultant to discuss surgery on my back they won't take me for the programme. It's taken me two years to get onto the programme and I've already had to postpone from this May to next January.

[Hele]

Thanks Gila,
I think you are right when having an assetive day i will ring the clinic and see what they say.
Hele

[sarahh]

Hi Hele I am so sorry, the shouldn't make any one do what they feel they cannot do due to joints, travelling etc they are out of order. They really take the biscuit saying that to you. Go back to the pain clinic and tell them what went on you do not have to do these course just because they have put you on one. I am still waiting for mine they offered me one an hour away by car from me and I told them no way that I couldn't drive there and back I cannot drive more than 30 minutes away even then my body doesn't like it let alone an hour each way apprently I am meant to be on one next month but we shall see I am only going to please some of the health professionals I see, I told my parents I will go to one and see how I go, if I don't get on with it I won't go again and it doesn't matter what my pain consultant says about it, its my body they can only advise things. Tell them the truth hun what went on, no one can make you do what you don't want to your not a child.

[barkingmad]

Hi all,
Hele I cant believe that they said that to you ! Did they not invite you back for a 1-1 session with the nurse specialist or the clinical psychologist to discuss what the problems were? i agree with the others it might help if you get one of the specialists and the HMSA to write as well.

I'm due to start my pain management course in September, but after yours and some of the others experiences i think I will speak to them tomorrow about the acute and chronic pain issues. Luckily, my old physio is supposed to be helping on this course and she has knowledge of EDS/HMS and she is hypermobile without the syndrome herself, so I might make sure she is still scheduled for it. To be honest I was down to go on it purely because it was part of my rehab but after going for the interviews I was having high hopes for it!

Gila did a good write up the other day on different pain etc which was really helpful, did you see it?
donna x

[Rosie]

Hiya naama

I was surprised on my course to find that we were 'only there because all other treatment had failed to help'. I did take this up with some of the tutors, and they were (mostly) happy to accept that I was following advice from HMS experts, and on the course to learn techniques and life changes that could help me as well. Only one woman expected me to ignore the advice from HMS specialists and do the exercises she said instead!
For the cope course, maybe stress that the surgery is only for your back, you still have chronic pain elsewhere that won't be addressed by the surgery so you need to attend the course for that? Also is the surgery likely to completely remove your back pain? If you expect to still have pain from your back then you will need all you can learn on a course for your back as well. Good luck



Rosie

[naama]

Hi Rosie
Thanks for that. Yes, I totally agree with you. I think I'm going to go along to the physio next week anyway. That way I can talk to someone who's involved with the course rather than risking getting an administrator who thinks she knows everything!! The points the others have made about acute pain are totally relevant. Plus, I have no idea whether they will do the surgery or not or how long it will even take to get an appointment to talk about it! The person on our back class who had the surgery said he waited four months from referral to operation but that the average was supposed to be six months. On that basis I still need to be able to mange my pain from now until then. I guess the only risk is that the surgery happens around the same time as the course. I don't want to be taken off the list for the course though. You're right. I still need educating on how to manage my chronic pain and also how to manage any back pain I'm left with.

[sarahh]

Well its september now and I am still not on a pain management course was told I would be, I knew it wouldn't happen stoopid pain clinic .

[barkingmad]

i'm in week 2 of my PM course now! Didnt like the exercises, especially the knee and neck ones, but they accepted that some of the exercises I wont do now, did them the first week and it caused too much pain.
They are also happy to discuss the fact that I get acute pain.....just not in class they prefer to concentrate on the chronic pain. I was surprised about how in depth they go..and I think being to visualise all those pain messages and signals going up and down my spinal cord will help...altho when woke up on Sunday nothing helped at all!!
Have to say I was surprised too about the fact I was there because it was the 'end of the road' last ditch attempt to help kind of action.

What I did like was the senior physio telling me that someone was very wrong to tell me to use my elbows as my brain was falsely telling me that I was injured...of course I believed them used elbows and ripped something elbow ...he was more furious than me!

Altho for education purposes I think it will help, I have to admit I cant see how it is going to dramatically change my life! But I will keep going and do what I'm told...just worried because if this is their last ditch to help, does that mean I cant go back to my pain specialist as I want to change tabs for patches etc?

[sarahh]

Hi Donna Glad you are on your PM course I know what you mean seems PM is the last resort seems if all else fails put the patient on that. I will more than likely be the same we all know how we cope with our pain and day to day lives let alone someone telling us to visualise this and this they have no idea and they aren't just set out for people with hms they seem to have the world and his wife on the pain management course with all sort of problems so some that apply won't apply to others.

My pain consultant will not see me until I have done this course dunno what he expects the course to do for me. You should be able to go back to you pain consultant if he was the one that reffered you for the course in the first place.

[loosebones]

On Tuesday I was so thrilled...I had been accepted onto my local pain management course in November.

Unfortunately this clashed with my appointment in London. I've now had a call back from the pain clinic and because of the clash, I cannot do the pain management course. The next one is in January. I'm gutted.

Looks like my questions will have to wait.

One question I do have though, is;

I've been asked to make a list of active and passive activities that I enjoy to schedule into my week as 'me-time'. Bar reading and cooking, I'm stumped. What else counts?

[hannah]

Activity ideas for LB:

gardening
Any particular TV programs?
What about shopping? Cinema? Pub? coffee with friends?