COPE pain management programme

[gila]

hi techiebabe
as an 'aside'... have you had your vit D levels checked (simple blood test) ? low vit D in itself can cause fatigue, quite a few bendies have had it and found supplementing helpful.
also have you tried low dose (much lower than for depression) amitriptylene? this can help pain and getting deep sleep phases, if you dont get those... you can sleep 'all you like' but never feel refreshed.

I did the cope course too, long time ago though, and yep also found it helpful - and I did a lot of fidgeting, getting up moving about AND lying on the floor in basic pilates position and nope they dont mind at all-
and it could be 'doubly' helpful as one of the 'techniques' you'll learn- pacing- is also used for chronic fatigue syndrome

but from my experience with chronic fatigue (I "luckily" got hit by that only some time after having done cope) I sure understand you worrying about making it to the course/making it through the day...
but as naama said get yourself to the assessment and see what they reckon
(oh- I didnt know about the vit D thing then and ami made me NOT sleep... but I feel both might be worth a try, might help a bit)

oh and silly bit of advice... if they still do things as they did then... dont carefully read all the course notes before doing the course... or it might get kinda boring
good luck from a fellow 'eastie beastie' - I's in ackney
xxg

[techiebabe]

Thanks naama and gila, I do appreciate your replies.

Naama I agree, it would be six very tough weeks, but it is pretty much my last option so I have to find a way to manage it. I have to!

Gila, I take vit D supplements, just in case. I also take co-enxyme q10 which my consultant suggested. So far, no difference, but anything is worth a try! I did also take amitripyline but even at very low doses it made me sleep forever. (This is before the chronic fatigue.) For once I didnt dream. I slept through alarms and my husband was concerned because he couldnt rouse me. And I didnt change positions in my sleep which meant I woke 14 hours later in agony! So I stopped it. I now take pregabalin instead but it doesnt make me sleep, just shaves a small amount off the pain.

Thanks for your suggestions though. Any more are welcome, I will try pretty much anything!

[techiebabe]

Me again. Just to update you, I was assessed for the COPE programme but both I and the assessor agreed that I wouldnt manage the whole days required on the course, so they will give me individual therapy instead. This has the advantage that I should be able to manage it and be awake, but the disadvantage that I will miss out on a group dynamic.

I am very happy - relieved - that this is possible and I wont have to force myself to whole day sessions, as I would struggle to attend them, would probably not be awake enough to take much in, and would certainly have to spend days resting to recover afterwards. What a relief that there is an alternative way for me to access the programme, rather than having no other option.

I was given the impression that this is not common / advertised, I think the assessor referred to one other person who was unable to attend the group sessions and so has individual therapy, like I will.

I am waiting to hear the next steps (ie waiting for a place / appointment to come up).

Anyway, thanks everyone for your input. If you would like me to update in due course when I get to see someone, let me know, otherwise I will just say thanks for the advice, and best wishes to everyone on the COPE programme in the future.

[gila]

updates always appreciated by this v curious bendy
xxg

[andreak]

Hi, I have just received a letter to attend the information session for COPE
I'm also about to start a full time College Course this week
I was wondering if anyone has any idea of the days this course runs as an outpatient - days and weeks would be brilliant if anyone has it
I have the option to switch groups for my course which may mean I can minimise disruption and absence by building in visitis to London on my shortest day or a day I dont have tuition but as the groups are going to be set by the end of next week and the appointment isnt whilst the 4th October Im asking for information from any of you who have been through the course
Thanks
Alison x

[andreak]

I know theres a topic already open for this but wanted to ask a specific question [Modnote: please do this by adding to the existing topic. Many thanks.]



We have received a letter to attend COPE information day on 4th October at 10:30am
I have just started college and am really struggling atm with severe back pain
We live in Yorkshire so have a 3-4 hour drive to get to hospital that day and the letter gives the option to just be placed on the list for an assessment at a later date
For those of you who have attended the information session, how helpful was it and did any assessments take place on that day
I have telephoned the secretery who informs me attendance is compulsory and that an assessment will take place on the day, but contact on the boards doesnt seem to suggest this is the case
As we live such a long distance from the hospital I would prefer to minimise travel costs wherever possible so any ideas or thoughts would be appreciated
Thanks
Alison