Questions arising after and during Pain management courses

[hannah]

Being part way through a pain management/physio course which is non HMS specific I keep coming across things/being told things, and I'm not always sure how applicable they are to an HMSer. However, I don't want to arrogantly go around saying 'that doesn't apply to me', if actually it does! So 'talking' it through with people with more experience in HMS seems like a good idea.

I thought that others might be similar so thought I'd start a new thread (mods, please move if you want)

So, my 2 questions/issues from todays session are:

We were setting goals for ourselves. My long term is to stop using crutches, and short term, in order to achieve this, is to gradually increase the ammount of walking I do without crutches.

The physio said I had to find a halfway point between good and bad day and do that much every day.

Logical, especially for the chronic pain stuff BUT...

My joints are really affected by hormones, and I typically get 2 really bad, really bendy weeks (Can slip the SI joints by standing up/1 step, any walking rather painful), and 2 pretty good weeks (comparatively)(e.g. I can probably walk 20 metres without major mishap). ( I get both good and bad days within these periods).

If I limit myself to half what I can do in a non-hormonal week (NHW) I'm hardly going to be using the muslces I have.
If I try and walk 10 meters no crutches on a hormonal week (HW) experience says I will almost certainly slip something and will be in too much pain to think straight.

I know that you should 'pace' at a level between good and bad days to stop the over-use/under-use cycle, but this aspect isn't about overuse, its hormones.

My logic says to have a 'dual goal'. on a HW have one target (like 5 metres), and a NHW target which is higher (20 metres). Any thoughts?

Also, slipping the SIs is painful, and walking (with or without crutches) is difficult after relocating it. While it is out, mobility is practically zero. (office contortionist ). After 1 bad SI slip/several lesser slips in a row pain will only reduce if I am nice to it, and really step down how much I do for at least a day or two. This doesn't fit with the general pacing ethos either. It isn't overuse, it isn't chronic 'your body is remembering the pain' stuff.

So How do I factor this in?? Do I ignore my other pacing/goals and try and recover from the acute, or try and fight through the acute, and keep at my 'pacing/goal' targets?

(sorry it was so long, but I find that the combination of putting my questions down in words, and hearing back from others really helpful.)

[nonyanomemory]

Hi Hannah,

Have they talked about setting realistic targets? I understand exactly what you are describing here and I wonder whether moving the goal posts slightly in terms of achieving your goal would help. Possibly setting a much longer lead in time to the use or not of the crutches would mean you would have some hope of realistically attaining your set target.

So investigating how you could improve your core stability could be step one. Which in turn would improve your SI functioning.

Just a suggestion. If you read through Peekay's posts on good shoulder behaviour you can see it has taken her over a year to improve her situation. Understanding that with HMS it is important as you have described not to suffer with over-use injury in attempts to improve your situation and thus experiencing set backs in rehabilitation is important. The only thing I can suggest is that you make your goal setting 'smaller' if that makes sense, it may be that your successes become more and more.

Improving core stability can take a long long time and a great deal of patience. Whether they understand this or not on the course that includes non-hmsers is another thing altogether, as you are finding out! Good luck.

nonya

[Shadowlady]

Hiya Hannah,

Just wanted to pop in to give you my vote of confidence in you. What you say is logical and sensible, and I think it's a really good idea to set your own targets, don't let them push you too hard, and don't push yourself too hard! I think Nonya's quite right in saying that you should take it very slowly, it just does take a long time to improve, and working on your core stability should help a lot too.

Keep it up Hannah, you're doing fantasticly

Best wishes,
S

[sanguine_emma]

Hi Hannah

Good idea for a thread! I find it very hard to interpret what they are telling me in terms of HMS. The first session consisted of telling us that the pain we were experiencing wasn't injury related. I totally get what they mean, except for the fact that pain from HMS is a complete jumble of acute and chronic pain. So, when setting a baseline, I think it's really important to choose one that isn't going to kill you on a bad day. DOes your exercise have to be walking? I know that's the long term goal, but given that any walking can result in problems on certain days, maybe you could start by doing non weight bearing core stability exercises that would maybe help your SI to stay put on bad days, before progressing to walking. Oooh, just read Nonya's post properly and she has just said that. D'oh - losing the old marbles today.

I too have a question...
Is anyone out there a chronic over-user (ie keep going and going til something breaks or falls off, then keep going some more)? My PMC homework is to pick an activity then plan how to pace up to it. I can't think of an activity that I don't do already. Evidently I am completely overdoing everything, so it seems logical that I really need to set some priorities and give my distressed body a bit of a break. Unfortunately, everone else fits into the "overuse/underuse" model. I feel awkward because a) in my case pain sometimes equals damage and b) I can and do do everything. I'm the awkward one in the group! anyway, the point is, how do you go about setting goals? everyone else is saying "I want to walk to the shops", and I'm saying things like "I don't want to feel like death any more" Not really very SMART!

[hannah]

Thanks for the replies. (Unfortunately I don't have much time to play with in terms of stopping crutches use. Its more a necessity than a long term goal - my wrists/hands keep dislocating and they are getting worse! Also I have been doing core stability exercises for about 6 months and am progressing quite nicely with them )

Emma, Did they give you a sheet to write when you are active and when you are resting?
Maybe if you do one on a typical weeks activities, and then do a second one, alowing recharging time? and then try and stick to the second plan? I know it is really difficult, but it sounds like what you need. Our physio keeps telling us all that things are 'far to difficult for you at the moment' because 'your muscles are so weak' and you 'really shouldn't be attempting that much'. (I find it rather frustrating)
If you then turn up next session with the two plans, and say you can see you have been trying too much and are trying to pace down to a level your body can cope with, they will probably listen, and agree.
Once you find that level you can start pacing up!

Good luck emma, and all you other trying pace etc!

[Retro]

Ah, pacing...sound's like such a good plan. I'm like you Emma...overuse/overuse, doing things til' I fall apart. Really need to get a grip. I had Cognitive Behaviour Therapy a while ago and the Therapist admitted that she didn't know what to do with me because I know what I should be doing (pacing) it's just that sometimes pacing just doesn't fit into my life I'm getting physio now and she's already told me off for overdoing it on a regular basis and has told me to expect it to take a loooong time to see any results with core stability exercises. Everytime I think I might be getting somewhere with pacing my eldest comes home from school and my good intentions go straight out the window.

I haven't gone down the crutches route yet but only because the physio wants to hold off until we have an idea of how the exercises will work out. A Pain Management course looks unlikely too because I don't think there's one in my area (and by that I mean in the Highlands )

Lindsey

[nonyanomemory]

Hi emma,

I don't think you are the only one who is like this hun. In the first instance have you thought about writing down all that you do do in any 24 hour period, then allocating say 4 boxes and putting into them each thing you do in order of priority. a)for example could be, must do b) could be should do c)could be I could put this off and plan it into my week and d)could be I could ask for help and delegate and not feel guilty
only off the cuff thoughts about ideas. Next to each thing that you list on the sheet try writing whether that task hurts you big time at the time, will definately cause an injury, will make you pay pain wise later etc. so that when you are filing the things you do do, you bear the pain factor in mind when putting them in the a,b,c boxes. Does sound complicated I know, but it may be that you would achieve more in the long run by planning better. The one big thing I found was that I tend to be a bit of a people pleaser so was always saying yes ok, I'll do that rather than say, I would love to do that but I am afraid I can't today but I could, tomorrow, Friday or, next week. This seems garbled to me but its something I tried and it did help. Fitting in appropriate down times within 'doing stuff' is important as well, so planned rest or break from an activity could well mean that you could end up doing more because your pain levels wouldn't be at the acute phase all the time. Eventually, it may be that you would find that severe pain time would decrease. Planning 'me' time into your schedule is important as well and this was pointed out to me on pain management, that because I felt quite guilty about the disruption and the moaning caused by the hms I tended to put my needs at the end of a very long list. So putting yourself a little further up the list and saying no, occassionally even if its an offer to go out for a drink, meal when you are knackered at short notice and actually having the long relaxing soak in the bath and meditating or whatever you like which helps with pain, and saying but I am free on such an evening or how about lunch tomorrow may help. Just random thoughts but planning your time and activities may actually in the long run end up in less pain and increased spontanaety (sp) I guess the long term goal would be lessening the times you have acute injuries and looking carefully at the way you are approaching tasks may help. The same would apply really to you Retro with the time after school, try writing down what you do on any given day and working out by elimination which causes the most pain and could possibly be approached differently or turned into a planned activity the next day!
nonya
In saying all this I don't necessarily practice what I preach

To Hannah,

I understand about your wrists and hands etc with the crutches so I wonder for when you really can't cope without the crutches whether a different type of walking aide would be appropriate, possibly discussing this with an occupational therapist would be worthwhile. In the back of my mind I seem to remember Peekay mentioning that stretch jeans which provide resistance help on very 'loose' days for SI problems, it sounds silly but it would go along with the theory Professor Bird and the hms clinic at UCHL recommend with regard to lycra gloves to improve resistance for very hypermobile hands. (see hand threads for discussion on this).
I found that taking the information provided from the management course and adapting it to suit me was better for me than trying to 'fit' in with a regime that wasn't appropriate.

good luck peeps and take care nonya

[Rosie]

Hi Hannah

You have just expressed some of my biggest concerns about the pain management course I am going on next week. I have told them that I am worried about this kind of thing, and they still accepted me on to the course so I am hoping they will know what to do with me. The course is residential, and there is no internet access, and I will miss you guys. Not just the fact that I am sure that I will have many questions like you Hannah, about applying what I am learning to HEDS/HMS but the emotional support that comes from chatting with people you don't have to explain to first!

Thanks Hannah for posting your questions. It has given me a few things to think through before I get there.



Rosie

[nonyanomemory]

Hi Rosie,

The very best of luck next week. The one thing you will have in common with the other people on the course is that they will know what it is like to experience ongoing chronic pain etc.. and I am sure many of them will be as apprehensive as you are now/ At least enough of us are attending pain management courses now that we are able to 'educate' about our particular condition - some of it must be beginning to get through. take care and I will be thinking of you Rosie.

nonya

[hannah]

All the best Rosie, I hope it goes really well. I have got some useful things out of it, but as Nonya said,

taking the information provided from the management course and adapting it to suit me

is probably the way ahead. (Nonya, what would we do without you )

One of the key things that they'll want you to do is take what you learn and use it in everyday life. When you return to the land of internet, update us on it, and use this thread to ask all those questions which will probably have built up (Obviously,:idea: if you have the chance, talking them through with a course physio on a one-to-one basis is also a good idea - note, I find it easier to explain something if I write it down first, even when I don't read what I write.)

Really must go to bed now,

Hannah

[sanguine_emma]

Hello everyone, thanks for all your replies.

I have actually realised that in order to not feel like death I need to reasses my life and my priorities a bit. It's quite hard for me to let go of things, and like you nonya I'm a people pleaser. But on tuesday I started to keep a diary on my outlook calendar at work recording what I was doing and how I was trying to pace. I felt atrocious on tuesday, but I still had loads to do so I spread it out nicely in the day. It worked quite well, although I still think I'm doing too much. Then I went home and everything went a bit pear shaped because I had a talk to write for the Alpha course that I'm helping to lead. I ended up working on the computer til 10pm because I was engrossed. So then I tried to do a bit better on wednesday, and succeeded to a point, but we were having someone round for tea so I was then in hostess mode - knackered yet again. Yesterday, I did quite well to start with, but a sample materialised at work that meant I was running round the lab like a lunatic trying to get my work finished so that I could get home in time to go out to Alpha and give my presentation - so between 1pm and 10pm I quite literally didn't stop. It occured to me at one point that it's no wonder I have a pain management problem! This morning I woke up relatively cheerily, but as soon as I started to move, things started to go wrong. I'm in pretty severe pain from my rib, my hip (usually pretty much ok) is sliding about and my SI joints are clunking in and out. In the future I have resolved not to tie myself up on week nights because it's a complete killer. I'm looking around at my 'normal' friends and they aren't as busy as me. I think because I have a problem that makes me feel limited, the rebelious side of me goes into overdrive. Time to get a hold of myself and realise that this is basically self-harm. Sometimes I push so hard against the pain I feel like I'm punishing my body for being useless... I never realised before. So, my goal is to take a break BEFORE it hurts, and drop non essential activities. Wish me luck!

Emma

[Mari]

Nonya, great advice, thank you.

Emma and Hannah and Rosie,
Like Nonya, I took info/advice from my course and tried to put into practice the parts that applied to me and adapt the others. Some I knew wasn't for me. Alot I knew already from my own research, reading advice from others, etc. All in all though, I'm glad I went on the course and I felt it helped.

Emma, I'm glad you are realising what you are doing to your body, and the way forward. I hope it'll begin to help.

Many of us are similar in the way we push ourselves to keep going, and put ourselves last on the list. But as Nonya says, it is counterproductive. I have learned that by looking after myself better and pacing better it helps to alleviate my suffering and I feel less guilty about asking for help now. Having said all that, it's not enough (yet) and hubby and I will be spending some of next week 'troubleshooting' to identify problem areas and looking for solutions to at least ease those problems. Our goal is to ease the suffering and keep me in my job.

Rosie,
Hope all goes well. Let us know as soon as you can how it all went.

Mari x

[Rosie]

Hi all

Thanks for your good wishes. Having spent a really good but exhausting weekend with 30 kids I now find I really am not too worried about what comes next - too tired to worry. I am definitely going to try to take on board what they are saying, but at the same time I will trying to work out whether it is applicable to me, or whether it needs adapting. I think each time a new idea/plan/outlook/suggestion comes along I will have to analyse how I feel about it. Like most of us I tend to take on too much, but one thing I have done is to decide to take all the help that is on offer.
One of the best things I did this weekend was to let the older children, including my 2 daughters, try out my electric wheelchair. They marked out a parking bay, and also tried getting through a door, and of course it was a lot harder than they thought it would be. After that I didn't have to ask anyone to open doors etc, for me cos they all realised how awkward it was. Over the weekend I think I did my bit towards educating children about disabilities, and I like to think that this will maybe help them to be more understanding in the future. They're a good bunch of kids.

Anyway, off to Brecon in the morning. Not content with the pain management course, I voluntered for the survey into how effective the course is, and I was randomly selected from the volunteers so I have a focus group before the course starts tomorrow. How come my ticket never gets picked when there is a prize?

Talk to you all soon.



Rosie

[sanguine_emma]

Good luck Rosie! let us know how it goes.

OK. I've had a real rollercoaster today. I got a bit upset because I didn't want to give up my lovely (if painful) life. It has to stop - I know because I'm just accumulating more and more pain, I'm physically whacked out, and I really really want to have children, and have to start behaving more responsibly. But it's hard to be told by a third party that you really need to slow down a bit. I stayed behind after to talk to the physio, who was concerned for my emotional state since I randomly started crying in the group . She made me promise to talk to my boss to tell him how much pain stuff like microscope work was causing me. And to assess my work and home life to see what could be dropped (everyone else gets told to do more stuff, and I want to do more but end up being told to do less - go figure) I spoke to my boss tonight and he was a bit baffled by the amount of pain I was actually in ("but you look normal and happy"), but he is amenable to drawing up a plan to head off my tendancy towards overdoing things. He was so kind, and I felt a complete rotter. I've had a similar talk with the OH and I feel similarly rubbish. I can't get away from the thought that the less I do, the more I burden others with - particularly my poor, long suffering husband. Everyone is so kind and helpful... I HATE all this, I'm proud and stubborn and I much prefer being the helper than the helped. But I guess it's a simple choice, and a 'no-brainer' at that - either take the help and learn to pace, or reject the help and continue in pain. Anyway, I'm rambling.

The question of the day is entirely unrelated to all this. It's about relaxation. We went into the gym to learn some relaxation techniques. Lying on the floor really isn't a good idea, so I lay on one of the beds to do it. I relaxed quite easily, but then everything got twitchy (like it does when I'm going to sleep) and that was distracting. Just as I was all relaxed everything went pear-shaped... my shoulder popped in and out and sent pins and needles down my arm. My shoulder blade started to grate, then when I stood up my SI joint popped out. Not the desired effect! Anyone else have problems with relaxation techniques? any suggestions for how to relax whilst still maintaining control of dodgy joints??

Emma (a bit more subdued than normal)

[Mari]

Hi Emma,
Sorry you've had such an emotionally draining day.
I completely relate to what you're saying. I found my course an emotional business, partly because sitting around (even whilst getting up and moving around frequently) was excruciating, particularly after damaging myself trying to do the exercises the physios insisted were alright for me, and partly because I was having to face how difficult my pain-filled life is. And some of the sessions where we learned the psychology of pain hit a nerve (feeling guilty for not being able to do it all).

About the relaxation. I had trouble with it, because they want you to spend time getting comfortable first, otherwise you get distracted by the pain. But, like many of us I expect, there is never a completely comfortable position for me - it just doesn't exist for more than 30 seconds. So I'd settle for the least uncomfy position at that moment. Then, because I'm always so exhausted, I'd fall asleep and miss out on the actual teaching of how to use the techniques. When I got up again afterwards, I did so very, very slowly and rolled sideways so as not to dislodge my SI.

Apparently it's very common to have problems at first and it takes time to master the art of relaxation. And it's relatively common to fall asleep! Your twitching could well have been because you were about to drift off. I asked for a hand-out to explain the techniques so I could read it over. You could (this would probably work at home but might be more difficult on your course) ask for more pillows/cushions to support your joints and prevent them from popping out.

Good luck for tomorrow,
love Mari