Questions arising after and during Pain management courses

[jo-jo]

I go to Bath today for the 'young adults pain management course', i am really excited - but i am nervouse at the same time!!! I have no idea who my flatmate will be- hope she will be nice!! Anyway- i had better go and finnish off my packing,
Xxx em xxX

[Rosie]

Hi Jo-Jo

I hope all is going well on your PM course. Remember they can be very demanding, not just physically but emotionally as well, but this is part of their success, and they are usually very thought provoking too.



Rosie

[SAMMY]

Hey guys. My little brain cell is still confused! Tell me what you are getting out of your pain management clinics. What have you taken with you that no one else has given you?? SAMMY

[leashy11]

I'd like to know more about Pain Management as that's where I'm heading next. The doctors have tried all manner of tablets to no avail and I'm in such a world of pain with my low back and pelvis constantly I can't stand it much longer. I didn't want it to come to this really and have tried to grin and bear the pain for the last 5 years but it's too much to bear so I'm having to admit defeat and go. I'm quite down about it if I'm honest because at 36 a life of ever increasing doses of painkillers doesn't make me feel like I've got much to look forward to while I watch all my friends live their lives. I just can't take the pain anymore.

[Rosie]

Hi all

Pain management courses vary a lot, from a few hours a week, to a fully residential 3 week course. At some Pain Management (PM) clinics you have imdividual appointments, on a residential course most of it is done in groups, with a few individual sessions. The kind of things that can be included are pain management techniques, pacing, goal setting, pain/tension/stress cycles, good practices for sleep, daily stretches/exercise program, medications and how they work, a review of your own pain meds,relaxation techniques, visualizing pain and cures, and general counselling, (oh, and comfortable positions for intimacy)
I found some of these helpful, and some useless for someone with HMS, it really depends on the course and the people running it.

Rosie

[gila]

sr- sounds to me like you were at a "pain clinic" - where if good they work with you on trying different meds, trying tens machines, maybe some accupuncture that sort of thing... and yep if bad (like at my hospital too) nothing but steroid shots on offer...

but 'pain clinic' is not the same thing than a "chronic pain management course" - on the latter they dont do any of the above things, dont deal with 'your individual pain' at all... but with general physical and mental 'techniques' (lots of cbt, pacing, relaxation exercises, some physio exercises...) of how to cope better with living with never ending pain...
xxg

[gila]

yep ... pity enough c p m cs or good pain clinics are still not a v common thing- any chance of something better available out of your catchment area but not too far to travel to?
xxg

[leashy11]

Well, I'm not feeling very hopeful about pain management now! If it doesn't work out I'm going to try and get my GP to try some meds with me, that's all I need from pain management really as I already do stretches and core stability every day and as a Hypnotherapist I'd say I'm more than capable of relaxing!

[SAMMY]

Hi Sr_71. I am yet again so pleased you said it and not me!! All I get offered is a long waiting list for physio, another waiting list for another, specialist, social services, wheel chair assessment, etc. Nothing ever happens when I get to these appointments, I just get referred to another specialist. Sam

[Blaadyblah]

SR71 - There seem to be a couple of hospital based pain management clinics in your area (depending on whether or not you are North or South Staffs). You might also want to look at the expert patient programme - contact PALS in your area, they carry all the information and are usually happy to help you work through the system to get appropriate treatment.

Leashy: It isn't all bad - is it Bath you're going to?

Modnote: Can we stay on topic please? This is not the rant room. Users are reminded that experiences vary, these boards are intended to support, not discourage each other.

[parent]

Hi Guys,

Steph has her assessment on Monday for the adolescent bath pain management programme i read this thread last night that i have now tagged onto as i find i now have questions before we go.

Do i need to bring any letters with us re diagnosis?

I am a little concerned about the physio for Steph & myself, with regards to Steph we have a letter from orthpods confirming her subluxing shoulder & that she has a slight migration of the humeral head, obivously don't want to make things worse but equally don't want to be seen as putting obstacles in the way as Steph really needs this pmc as all things tried have not worked. It is an assessment to see if she is suitable for the programme i believe it is a psych assessment so you probably get where i am coming from. I definately should not do physio as advised by my neurosurgeon unfortunately this is not in writing it was verbal at my appt as things that i should definately avoid as could aggravate my condition also have to avoid heavy lifting, no sudden movements. Anyway Steph and me are going to be polite but assertive maybe this is the way to go any thoughts/suggestions?

Even though i think it is a psych evualation (we have had 2 big forms to fill in ) i was wondering will Steph be physically examined.

Teresa

[hannah]

The big forms are probably the standard pmc ones - and it isn't psych evaulation in terms of 'is it all in your head, are you insane' but more 'are you coping in the best possible way, could you do with some help to cope with what you have to cope with in the best possible way' (if that makes sense)

Polite but assertive is good but try and add some enthusiasm. Remember that although HMS is for life, symptoms can be massively improved with the right kind of exercises/muscle tone and strength. Where exercise is concerned make sure you don't come across as completely anti-exercise. If something they tell you to do will definitely cause big problems, explain and ask if there is a different way of exercising the muscle, or a way of doing it without putting any stress on x part of you. I have found it very useful in dealing with physio's that I love being active. I loved sports, and now I love doing my physio exercises (many of them I do almost as if they were dance moves, to music - because that is more fun). So the exercises I was able to do, they saw that I really tried. Then when I said "I think this one is too hard" they would listen.

re. the no heavy lifting or sudden movements - they aren't a good idea to do near end of range for bendies anyway. Control is what we need, not speed. So make sure you do any exercises given you slowly and with control and this shouldn't be a problem. On my pmc course in oxford I didn't even pick up a weight until the last session - and then it was the lightest one! None of the exercises involved sudden movements either.

Steph might be physically examined in order to guage strength. I think in my pmc evaluation I had to walk a set distance (or until I decided to stop - which I did. Don't put yourself in agony) see how many times I could stand up from a chair then sit down again, and maybe a few other things. But it wasn't an exam of how flexible or which parts are flexible etc.

Good luck,
Hannah

[parent]

Thanks Hannah it all makes sense and very good advice re the exercises, i know this is very important for Steph to build her muscle tone & strength. Would you believe our local rheumy discharged Steph from the physio dept because in her view she had not made any progress the rheumy has even cancelled the orthopods request for Stephs physio re subluxing shoulder. Steph used to be a regular dancer went to a weekly club even done a type of karate can't remember the name now so she had been quite active. Sorry gone off topic there a bit.

A question that Steph has been asking do the physios teach you what is near end of range for bendies, this is something that Steph finds very difficult as she literally does not know when to stop, i am not hm so Steph will ask how far i can move a joint and tries to use that as a guide. When doing physio at local hosp she was never taught what group of muscles should be working/used for a particular joint or taught about end of range movements and how to keep the joints safe.

Teresa

[ickle kitty]

Hi all this is the only thread I could find on PMC's so I'm just gonna pour it out,

I got the referal to PMC and duly received a huge questionaire which was to be back within a week, none of the questions in it seemed to fit my situation, eg

question 1, when did your pain problem, unjury start, how long have you had this problem?

In my case I could only reply, I am 38yrs old now but it began in my early teens with constant cold aching pain in my legs that was brushed off as growing pains, then I had my first dislocation and it has continued since then, with various gynae issues, numerous dislocations of various joints, fractures, surgeries etc along the way. By the time I got to my early 20's I thought everyone went through life in pain so stopped complaining about it and diverted all my energy into my business, now my body has fell apart, refused to take it anymore, quite literally because of all the years ignoring the problem cause everyone said there was nothing wrong with me, but the pain cant be ignored anymore. Also it isn't post injury pain or a slow progressive illness I was born with it.

How do you answer silly questions that don't apply to your problem? Been sent to this cause my sleep patern is non existent due to pain, getting bout 3 hour max, now n then, not every night. On enuf meds to fell a horse, pick me up n shake me and I swear I'll rattle, on crutches, got various splints, supports etc and a crumbling spine as proved by MRI.

So on reading some of your info on this thread about the excersises etc and some of the responses some of you have had when you've mentioned HMS or EDS I am quite frankly scared about going now!

I'm in Fife in Scotland and if some of you down south in big towns near to Leeds where prof Bird is so the syndrome should be recognised-ish in the surounding areas are getting those responses,,, what hope do I have in the wee clinic in Fife I have been reffered to of even getting someone who may have heard of the syndrome never mind understand and be able to treat??

I am emotionally fragile at the moment, after so long of not being able to admit I was in pain, of having doctors and specialist as well as family do the, 'it's all in your head, your just after attention bit' If anyone does the 'I'm not trying hard enough, I'm letting the pain win bit' I may commit murder or stagger out bawling like a baby.

Wondering if this is such a good idea now?

Kitty.

[gila]

totally understand your worries about the course and your annoyance with the form!
we always have to do sideways thinking and lots of explaining when filling in forms... I so wish we could just tick a box and write one sentence...but nope, that doesnt work too well for us

as I dont get on with handwriting, I always do things on the puter and attach it to the form, then 'longwinded answers/explanations are easier to do and easier to read.

and yep, how to answer that first question... I'd say roughly like you did on here!
the more and detailed info you give them on your medical history, the better they will be able to deal with you-
obviously include the " I have a genetic connective tissue disorder HMS equivalent to EDShypermobility type" and this is my history of symptoms/probs"

and I would maybe also give them the url of this site and the EDS site... so they can easily look up some info-
at least it seems they require the info before you get ther= that does give them time to learn a bit about your condition...fingers crossed they are up for learning... if they are... that can be nearly as good as getting someone who knows...

and although we all have had probs with our courses... we also all took at least a few things away with us that did help!

the 'longwinded explanations' route has so far always stood me in good stead with all the "tick only one box" benefits forms... I just write something like "sorry I cant just tick one box, as all or none of the boxes can apply on a certain day- then explain in detail that some days I can for example walk 600 meters without my basic-always there- pain being further aggravated, that other days, due to poss current injury or due to flare up of chronic pain or fatigue or due to having done too much the days before, I struggle with 50m...
so far this has always worked for me...
good luck and keep us informed how it goes!!
xxg