The difference between Chronic and Acute Pain in HMS

[nonyanomemory]

Just got back from being away and have also read the posts above. Thank you to everyone for their considered input.

I have had said to me latterly by gp's for minor appointments.

'The thing is with hms is that a minor pain in most people is a big pain for those with the condition' is this their way of saying - we appreciate your pain or are they being patronising? Or are they just saying those with hms are a pain!

Does anyone know if there has been any funding latterly for research into pain and ehlers danlos/hms which is much needed?

Nerve pain is something that I am learning to recognise as such these days but I seem to bypass any previously experienced warning of its onset!

I agree that discussing pain etc is helpful but also understand the ethos behind its management. There is definately a difference between discussing things on an intellectual level and talking about pain - which is discouraged on the pain management courses I have been on as mentioned previously as counter-productive. This thread helps me and hope it helps others.

I have found however if I have ever been to A & E on the occassion when I haven't been asked what my pain scale is on the 1-10 scale is - I have bypassed all that and been rushed in and seen straight away - thus indicating I imagine that unbearable pain is pretty obvious to a trained professional! Its the 6-8 chronic pain I am not so sure they know what to do with lol

I think I actually put up with a lot more pain on a general level than a lot of people and therefore am probably not always terribly accurate in my descriptions because as kezzycat says it never goes away. So my norm base level is pretty high. The pacing stuff helps but it is not a cure all.

waffling now so I am off. Thanks for letting me waffle.

nonya

[Rosie]

bump

[naama]

I decided to revisit this page as I am sitting around (not literally) waiting for my hms specific pmc, which may not happen until next year now. I had the assessment with the psychologist (or whatever psych... she is) and it got me thinking about the whole chronic / acute thing again. She seemed to be working on the basis that all of our pain is of the chronic / pointless / neurons going haywire sort as, when I said that the thing I find most difficult to deal with is a new pain that I haven't had before and what to do with it - how to treat it, whether to ignore it, etc. She said that our pain isn't caused by injury, so can pretty much be safely ignored. Now, I may be missing something but if we sublux / dislocate / fall on a joint then that pain IS caused by an injury and shouldn't necessarily be ignored. My physio in London has always worked on the basis of if the exercises she gives me cause me pain then don't do them or wait until the pain has subsided before trying them again. Working on that basis I have managed to move forward somewhat, although not as much as I would like since core stability exercises exacerbate my lumbar / SI problems, as in something goes clunk and hurts.
I agree with what has been said to a degree about not chasing around looking for answers to pain and, in the main, I don't do this. However, I don't disagree with my rheumy when he says that my lower back needs an MRI to find out if a nerve is being trapped or a disc being squashed. Although he's never going to advocate surgery or any other intervention, it may have a bearing on how that area is treated.
I find myself still thinking what I thought last year - that it's the unexpected that I need help treating, not the predictable.

[hannah]

I had that problem on my PMC too naama. I wanted my arm to stop falling off and they weren't interested, and it took several weeks of assertiveness before they cottoned on to the fact that I was trying to differentiate between injury pain and boring old pain. Perhaps if instead of saying injury, say 'dislocated' - even if it is stretching the truth. I really benefitted from my pmc even though it took them half the course to understand what I was trying to say. Mind you, I think that trying to stand on my hand to relocate the wrist in physio helped

that it's the unexpected that I need help treating, not the predictable

Well said naama.
hmm. perhaps that is how to explain it better to Drs. Then they can't just use their previous experience and course notes to try and explain how our chronic pain isn't injury stuff when we raise the injury issue. but they have to start thinking outside the box. If you don't mind naama, I think I might store that line in my head for future reference. I know how to handle the slow build up of pain of general SI grumpiness which I think is at least part chronic, but the 'I think x is out and I haven't a clue what I'm supposed to do about it and I don't know which muscles I need to strengthen to reduce likelihood of future re-currences' is what I really would love some guidance on!

Hannah

[gila]

oh ow...
naama- your experience really makes me wonder what actually is hms specific about the hms specific cope course????????
is it actually just the same course but with only hmsers attending?????
if you're in touch with them, could you maybe ask what makes it 'specific'?

really makes me regret never writing to cope after the course and telling them what I really would have liked to have learnt- the whole 'how to differentiate chronic/acute/injury" in hms, an in depth explanation of all the 'snap crackle and pop' (cause nope it's not always only due to release of gas in between joints as they made out on cope-I only figured out long after cope with help from meeting bendies that a sharp pained crack might well be a sublux...)- basically a far bigger physio slant/involvement/explanations.

it seems they sort of think that we all see good physios who explain/help with all of this...oh I wish...
but if we dont tell them what we would find helpful...

my 'little trick' re injury v chronic...if a simple pain killer like paracetamol/ibuprofen works it's injury- but I of course have no idea whether that is 'right'...and of course it only works for 'little' not v painful injuries...as a bulging disc or similar wont be touched much by one little ibuprofen...
xxg

[naama]

Hannah, I think I might steal your quote in return

'I think x is out and I haven't a clue what I'm supposed to do about it and I don't know which muscles I need to strengthen to reduce likelihood of future re-currences' is what I really would love some guidance on! Hannah

My new physio at UCH seems to also be of the 'your pain is chronic and should be disregarded when progressing with physio' school. I object to that mainly because she doesn't know me and has not examined or treated me. When I said that I thought that most of my chronic pain is dealt with by my butrans patch and that usually I only go to the gym and pool to do my exercises once a week because my back has a tendency to give way when I'm doing the core stability exercises and takes time to settle down again, she gave me the whole chronic pain blurb and asked me if I'd ever done a pain management course.
By the time I left, having spent five minutes on the exercise ball being told that the exercises the old physio gave me weren't challenging me enough and that I should aim for bigger movements, my leg was shaking so much that my knee was hyperextending with no warning every few steps because I had no control over it. It took two hours for it to settle down. Now, it wasn't painful, so it can't be chronic pain, it was just unstable because the muscles that are supposed to hold it in place were working overtime.
I think I am going to contact my local pain management team and ask someone to discuss MY pain with me and help me to understand things better. I don't hold out much hope but at least I will have tried!

[omnijam]

This thread is so good. I love shadowlady's 4 types - I'm going to write out my own, to take to my first referral. Thanks, everybody. I might post them up here when I'm done.

[gila]

thought this might be useful for peops, particularly those who have never been on a pain management course or similar...
cant decide if it should have a new thread (mods what d'you reckon????)... so I'll stick it here...
xxg

a fellow EDSer posted this on another board:

Mod edit - Text removed - Copyright full text can be found here (link takes you offsite.

[barkingmad]

Thanks Gila,
thats really helpful info. Would you mind emailing it tome so I can send it to mum, I can only do the basics on computers I'm afraid
Thanks Donna

[Eloise]

Thanks Gila,

I remember reading this as a student, but never did find it again when I wanted it. It is one of the first things I learnt.

[gila]

donna- if you pm (private message) me your e mail address, I will send it.
But you should also be able to 'highlight' =select text you want, then 'copy' and then 'paste' it directly into an e mail.
xxg

[shirleytx7]

Modnote: merged with existing topic.

So I am trying to explain joint hypermobility to a work colleague and she asks me so what causes the pain? no damage shows on X-ray, there is no inflammation but it hurts like the dickens. So what is going on within bendy bodies that causes such unrelenting pain? I told my work colleague that it was stress and strain on the soft tissues, ligaments, etc. I know for me there are several types of pain sometimes I pop a joint and that causes very specific pain related to the joint, and I have degenerative discs in my back and neck and that causes pain related to that. However I have pain in feet, hands, shoulders that show as normal on X-ray but hurt so I put this down to soft tissue, stress, etc. Is this correct?
I did search for existing posts and found nothing related but feel free to move if this is in the wrong place.

[gila]

quite often the pain we have/or better said a big part of the pain we have is "chronic pain syndrome" pain- meaning that our pain signaling system has gone haywire and screams pain even if there is at that moment no actual cause/no injury/no damage done-
if you want I can send pm some info on the difference "in how they work and how to deal with them" between 'acute injury pain' and 'chronic pain' - and some links to info re 'pacing for chronic pain
xxg

[shirleytx7]

Yes please send me any info you have. thanks.

[shirleytx7]

I found an interesting article that seemed to explain the pain process in HMS http://www.reumatologia-dr-bravo.cl/pat ... ainJHS.htm .