Well, here we are starting the 2nd week of a 3 week pain management programme.
To be honest, I was full of doubt when I started. I said, " I have pain, my pain is real and no amount of thinking about it, discussing it and analysing it is going to take it away."
Although parts of the course have been interesting and involve nurses, physios, psychologists etc, I still doubt that it will actually benefit me.
The course seems more aimed at those with fibromyalgia pain, pain from previous surgery or old wounds that recur and those who despite lots of testing, still have no identifiable cause for their chronic pain. Whereas my pain is from something happening inside my body that attacks other body parts and causes the pain.
Yes my body is over sensitive and yes, I suppose the pain can sometimes seem less if you're fully focused on something else but over all, I remain unconvinced.
I'd be very interested to hear, has anyone else gone through this programme or have any views on it?
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Georgie-girl
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A different sort of experience here. I've just come back from my fifth or sixth pain management meeting. I've found these 1hr, one on one sessions the most helpful thing I've ever been offered. I agree with you about the general approach of pain management services, and I know many people who have hated it and felt that they were being told it was "all in their head" or were just fobbed off.
I made it clear from the beginning that I can "do" mindfulness, and if any sugestion was made of CBT I might hit them. So, started out with suggested links to lectures on youtube for education on what is known and still a mystery about pain. Interesting.
Since then, we've been concentrating on increasing activity ( I have gone as far as poss at this stage with physio) getting some weight on, and coping with the Raynaud's. All of this just to increase my resilience. The young chap who sees me has Raynaud's and his hands are as bad as mine which helps - he knows it's more than wearing gloves.
Today I was feeling low mentally and feeling angry with myself. Getting very frustrated by my limitations. We've been though this, and come up with some ways of rethinking it. I could have done this myself, but needed the guidance and reminders today. I phrased it badly when I said I felt my quality of life was really low because of "shower horror". He looked a bit startled ( maybe thinking it was a Norman Bates thing) until I explained the previous simple joy of a good hairwash and shower which I now have a phobia about because I get chilled to the core and it's very hard to warm up.
All in all, I've appreciated it. I was very dubious at first, and the pain is still there, but I got lucky with someone quite prepared to see me as an intelligent human being who had more than pain as a problem, and who had no preconcieved box to fit me in to. The unhurried one to one hour of attention helps - where else do we get that?
Has it helped the pain? No, in terms of still being on the same level of needed pain relief. Has it made me feel better? Yes - finding someone outside this forum who is very understanding feels very good.
I'm so glad it's helping you Lupi and that you have found a great sounding chap who really seems to help. Perhaps I may feel differently if mine was an hour one to one once a week or something but it isn't, it's a three week long daily 9 to 5. Parts of it get quite boring and overall it's really tiring, another reason perhaps I'm not entirely convinced of its benefit.
Anyway, i'm only a third of the way so maybe things might change.
Okay well Georgie, this post of yours and the replies you get are of great interest to me - as I'm sure it will be to many others.
I'll cut to the chase (ironically using a stylus because of ongoing pain in my fingertips🙄) because most of you here will know and be bored rigid by my own story by now - and if not then my many previous posts will tell the tale.
Firstly I was interested in your remarking on who this pain managenent course seems to be aimed at. Don't you think most of those you feel it is targeting, who don't have a mechanical cause such as wear and tear or post surgery issues, actually also have something attacking them from within just as we do? I admit I'm very defensive if I think anyone is implying that my pain is somatic- so I'm guessing that most of us feel this way. So although I always assume that these kind of courses are aimed at everyone but me - there's a strong likelihood in fact that they are just aimed at everyone, including me!
I'm particularly keen to know what you and others feel about this distinction which we with autoimmunity often make - because I know how paranoid I can become about the assumptions surrounding pain and invisible diseases.
Also I'm intrigued because I happen to be in my studio right now trying to break through the fatigue barrier in order to focus on editing and collating photographs I took during what happened to be my worst year of pain of many different kinds.
So I'm sifting through iPad images of me in a hospital bed, surrounded by tubes and NHS paraphernalia - and in a few pics I have my embroidered mini me doll (husband brought them through to the hospital with my spare pants etc in to keep me occupied!). My dolls are climbing up my drip stand and straddling my medication bag, sitting by my toast and tea and even astride an amazed looking nurse's palm!
I believe one of the main themes of my work is pain. I use fairy tales, historic characters and mythology as metaphor for this purpose. So during my disastrous year of 2015 I worked intuitively using my Frida Kahlo doll with her tiny replica body brace and Dame Pharma (a panto dame I created, dressed up in pharmaceutical packaging!). There are also a few gruesome ones of my septic post op wound in naval and some just of me as portraits when I was in for pancreatitis or observation.
I can see pain clearly in my eyes in all the hospital selfies -but in some but I can also see fear. The fear is because I don't know what is causing my pain. And it's parasthesia I'm talking about - not arthritis which hurts more understandably. In the photos where the pain I'm in is tangeable, I look far more at ease with it - readily submitting to morphine or whatever is dispensed. At these points I look quite amused and am grimacing happily at the camera in a stoned way. But in the photos where I am in under observation (2 years ago this month), my body having rejected Azathioprine and three others of this family - my expression shows terror and I'm gaunt with eyes riddled with anxiety.
I guess what I'm trying to say is that I haven't ever requested pain management because I have no real interest in suppressing my pain beyond sometimes grabbing a handful of pain meds or covering my limbs in Biofrieze. The topic of my parasthesia/ SFN/ Raynauds pain usually comes up during consultations with my neurologist and various GPs and what they suggest invariably drives me nuts. So I only ever mention pain these days because I want investigation or clarification. They just want to throw pain medication such as Pregabalin at me. I resist. And so it goes on.
They don't offer me CBT or tell me it's Fibro or suggest I attend pain clinic. They just look at me with something bordering pity and exasperation and bring the consultation to a close with pleasantries. I just want to be able to rationalise my pain whereas they simply want me to stop asking or thinking about it - even if this renders me a zombie, unfit to be creative with it.
I was given an online CBT link years ago by my old eye candy GP when the neuropathy first led me to agree to drastic measures (antidepressants, drugs for RLS or mind altering meds). He looked vaguely uneasy when he wrote it down for me - probably knowing full well I'd continue to pester him for answers regardless - but he said sadly that we had " begun to run out of options". However I couldn't even work out how to log-in to "livinglifetothefull.com" so decided it would probably entail quite the opposite for me and reduce me to more of a grumpy mess. I embroidered a replica of his handwritten link though which is how I recall it so well still!
I've also attended counselling (for CBT) for a few years since my old GP diagnosed me with severe depression over the medicalisation of my life. In fact I still see this counsellor intermittently when I'm back on my island home. She and I discuss this idea and talk about my childhood and books we've enjoyed and my work as an artist. She says this isn't CBT because she wouldn't presume to even try this on me. She suffers from terrible sciatica and migraine and I've told her that it's clear to me that her pain is far more severe than mine because I can see it in her writhing body and in her eyes.
She returns that this is because I've already detached from the pain I suffer (so found my own CBT?) and am now so familiar with it that it's become the only background experience I know. Maybe she's right - or maybe I'm too analytical and a tad inwardly obsessive about my body's symptoms and signs or it's not actually very severe? Am I oversensitive or insensitive to my body's workings? I really don't know tbh.
I do know it shows up for me in my blood as inflammation so I conclude from this it must be real. But maybe I unwittingly cause my inflammation levels to be high somehow?
Anyway whatever - the truth is that I've become too proud now to mention pain to anyone I meet, including doctors. But if they ever try to suggest it's in my head then I wouldn't hesitate to point out that I had three very challenging labours with large babies born the wrong way round and I had no pain relief at all, apart from the odd gasp of entinox. Or that in 2015 a surgeon went back into my laperoscopic wound to clean an abscess that had already seeped into my bloodstream, offering me no pain relief or anaesthesia at all. I didn't scream or moan outwardly at all but I had nightmares about it for over a year as my hubby alone can testify!
Also I have noticed that everyone, apart from my counsellor and one close friend and you guys here, tends to miminese my pain to: "oh yeah I get that too when I'm tired" or "ouchy ouchy mum - great excuse for a lie down eh?!" (my sons!) or hubby who ignores any exhibition of pain from anyone now, after many years of being enured to suffering of others as a care worker. So I find myself wondering if everyone is actually in pain as the cells die of as we age, but only some of us feel it? Or is it the opposite and if they had to spend even an hour in our shoes they would be a hollering mess?
I've found that talking to others about my own pain gets me nowhere - but I am still absolutely fascinated by the whole concept of pain. Sorry for the giant ramble of a reply here - please blame my discovery of a pen stylus for iPads! X
I'm incredibly confused to be honest about what these pain clinics and courses are for and meant to achieve. I didn't request a referral - it came about from my previous GP who wrote a general letter to say somebody (?) needed to help me, which resulted in this, and some treatment for osteo (which I'm certain I don't have to the point of needing it).
By the time I got my first appt most of my pain was tolerable with various meds. I ended up with extremly pleasant young chap who doesn't dismiss pain but looks at my life beyond it, and that has suited me well. What about someone in great need of just about anything to help whatever is causing the pain and how to cope when it's taking over your life? No idea what is offered to them, or whether courses are aimed at the "stop thinking about it" approach. At my very first appt I was told "we don't talk about pain" an approach which suited me, but am I in a minority? Is that helpful in general? I'm sure I'll end up as a success case but it has zilch to do with pain per se.
I'm rambling here, and trying to work out if some of these services run on the old "snap out of it" lines because the medics have thrown up their hands at how to help with chronic and/or intractable pain. Are they a dumping ground? Once again I'm cynical. I wouldn't have gone again if I was invited to attend a drink-a-cup -of-tea-and-compare-pains-then -think-about -fairy dust-and-unicorns -group. I wouldn't have gone again if I was desperately seeking further pain relief either.
Oh wow I need to make a unicorn next for my miniature theatre LK - thanks for that!
Re the rest - I'm as bewildered as you are. I have my first CTD consult at 9am tomorrow and am minded to smile a lot and say it's all just been a big mistake - just leave me and my weird pain to it please.
Did you ever see Peter Shafer's play Equus? For some reason the concept of pain clinic always makes me think of this - but then I'm just perverse!
And at the end of the day what else can they do but offer us all drugs or suggest mindfulness or both? A listening and sympathetic ear can be a great thing but these come at a cost and in these austere and chaotic times good ears are in very short supply. Plus as you ask - would a listening ear be of much use for severe and intractable pain? My friend living 24/7 with a fractured spine tells me not. Cocodimol and steroids are as good as things will get for her x
Absolutely fascinating - thanks for letting me share!
I have no real concept of the pain you guys go through and I really don't want to go there again at even my own level. But the thing I struggle with is the desire there is to quantify my pain. What to me is perhaps a 5 or 6 would be way over the 10 level for others - at least judging by the reactions I meet.
It is when it is there all the time and I know I can't get rid of it that that level 5 pain becomes something I can't deal with on my own for long. I know that having certain therapies will relieve it or change it to something easier to deal with. But if I answer perfectly truthfully that my pain is a 5 on my personal scale of 1 to 10 - most therapists will look at me as much as to say "Why are you taking up my time?" So with a lot of people I have to lie to get what I know I need to prevent that pain getting any closer to the 10 on my scale.
Or is it unreasonable to want to have a treatment that will improve a moderately nasty pain that is stopping you doing things because the action/activity will make it briefly, sometimes very briefly, excruciating?
Just occasionally you get a doctor/therapist who you KNOW knows what you are on about. And then it is such a special thing.
"Or is it unreasonable to want to have a treatment that will improve a moderately nasty pain that is stopping you doing things because the action/activity will make it briefly, sometimes very briefly, excruciating?"
Oh how this hit the nerve (pun!!) with me. Reading this thread has made me think a lot more about my pain, which to be frank, is bearable without meds most of the time. I forget that I am in pain for vast chunks of my life which is fantastic, but it is always there. I realise that I avoid doing certain things that may cause me pain.
If I sit her now and think about it, I have pain in my index fingertip (not using it to type) which is getting progressively worse as another lump of calcinosis works to the surface. I have pain in my left foot, partly a neuralgic pain linked to the permanent tingling on the side of my foot and partly an intermittent stabling pain in the ball of my big toe joint. We're not sure what is going on with that foot - hopefully when I see my rheumy later this week we can look at my MRI. It has been a lot worse and I have had to have prescription painkillers as I was unable to sleep, but the slight pain remission seemed to come after my chiropractor had a go at it.
I have intermittent pain in my right foot too, as well as a painful corn which is much worse when I am walking across the uneven ground on the fields (I am a farmer). And I have the cold pain of Raynauds in my toes at present. My knees are not painful now as I am sitting quietly but I know if I knock them on the table then I will be in agony as there is calcinosis lurking there too.
I realise that when I talk to my rheumy I rarely mention pain, although it's always there, unless it is unusually bad - like the calcinosis. And she never specifically asks if I am in pain and am I managing OK. I know things are likely to get worse on this front Although as I said at the start, I am not at a high level of pain, it is there. All the time. It is starting to define what I want to do or what I need to avoid. What is sapping is knowing that I am never likely to be free of pain again.
Ha ha - well I guess it's something to do with pain and I motivation to create going bizarrely hand in hand for me. So if they cure or eliminate my pain entirely then I'll have lost my bite perhaps? A bit like bipolar people might feel at having their brains zapped with ECG? can't think quite where Equus comes into it either tbh but worry not - if I make a 🐴 I'll certainly not gauge its eyes out! Ugh😖X
I didn't request this programme to be fair as I seem to be handling my pain ok in my own way. Well, most of the time. My GP kept on about me doing the course to get a better understanding of how pain works and how my body has become overly sensitive. I kept trying to refuse politely but she won.
Perhaps my description of who it is aimed at wasn't very clear but I do feel it is more for those who have say a broken leg and know where the pain starts from or all over pain as in fibro. Even those with no diagnosis seem to be able to pin point the pain area whereas us autoimmunees just seem to hurt everywhere at different times depending on inflammation levels, nerves, etc etc and can not always pin point it nor can we explain how it feels or have any control on when it flares up or why. In other words we cannot point to an arm, leg or something and say this hurts here. We can't see any reason for the pain.
Don't think that's any clearer is it as I've actually confused myself now.
Ha ha I think I've probably confused you rather than you confusing yourself Georgie - your post was very clear and well thought out. I suppose I'm trying to say, as someone who has had physical pain all my life in the form of severe eczema and allergies as well as autoimmunity in the form of alopecia - is that I have a rather mixed/ ambivalent relationship with pain.
I did attend a series of meetings/ sessions / workshops called "TLC for LTC" run by Arthritis Care. These workshops, which I felt obliged to attend because I was an ambassador for a related charity -really did not suit me at all. I knew and had successfully avoided bumping into several of my fellow participants. One of those taking a workshop was born deaf and I have never considered either of my deaf sisters to have a condition. Another had suffered breast cancer but was in remission and therefore I wasn't sure that this could be called a long term condition. The rest had osteoarthritis, Fibromyalgia and CFS. But it wasn't that they shouldn't have been there - it was really that I should not have. There was a strong element of the things you are talking to these workshops so I do understand entirely where you are coming from. At the end of the day even RA is relatively rare compared to OA. Let alone Lupus, Sjögren's or Scleroderma. X
Ps I also think a significant proportion of people who are diagnosed with idiopathic chronic pain, functional neurological disorders, CFS and Fibro will in time be found to have some kind of autoimmunity or immune dysfunction. In which case this kind of course could potentially make them feel depressed or as if they have failed if the suggested techniques don't achieve much?
Great point TT. I believe these things you mention are some kind of autoimmune response to something and I think to classify everyone under the same "pain" umbrella could prove harmful later on.
The 1-10 pain scale is a nightmare because it's so subjective. I've always told them the worst pain I had was a 9 1/2 lb baby without so much as a paracetamol, then grade it by that. It usually works, but how to qualify it by saying but then it was over and I had a big healthy baby, and now there is no escape/relief? I was once told/ read never to say more than 8 even if it feels worse because they won't believe you. How can anyone grade another's pain, or their own, objectively? Having to weigh up all the fears than you are "over-sensitive" or just love the buzz from pain meds makes it extra difficult. As ever, for me, looking very ill and haunted helps, but why isn't it enough to just explain that there is a lot of pain, it's really affecting my life, and please help?
Edited to add the big baby no pain relief, aren't I brave is useful, because many can relate to that, if only by watching "Call The Midwife"
Yes - it's not so much "aren't I brave?" -but more "this is my pain threshold" or "this is how much I personally can endure without screaming for pain relief". If they don't believe us they can always fall back on our medical records. But I've only actually ever said it once in sheer exasperation to my gp when he was being a tad patronising. He immediately backed down very sweetly! X
Ps my first was 6lbs and then subsequent two were 9.11lbs and 9.12lbs and I'm 5'2"! They all tower over me now of course.
They are very ouchy sizes! I was gripping on to the head of the bed in an attempt to pull myself away from the pain and heard the midwife's jolly remark about "Oh, what a big head baby has" 😂
Longest and second longest baby on record at the time on the islands small matty ward. Gp said I'd "gone native"with birthweight but not with their length it seems! X
Ps I should add to this that the Arthritis Care workshops were over a period of a month for a few afternoons a week. And this was "TLC for Long Term Conditions" including pain management (tai chi and mindfulness and lots of watery eyed sharing and hugs). So very not me!! I defintely would struggle with 9-5 as yours is. Not just Sjögren's fatigue but sheer boredom and exasperation fatigue just as you describe?
But at least you can say you've done it and can hold your own with your GP now? X
It's fascinating reading all your opinions, thank you.
I certainly don't want to dismiss someone's pain or suggest someone's pain is worse than someone else's, but I do feel our pain is different.
One of the psychologists said that recurrent pain is a type of chronic pain syndrome where the nervous system becomes over sensitized to a physical injury and various pain triggers and so reacts to every small change the body makes trying to protect it but which in turn makes the pain feel worse. With us though I feel our immune and nervous systems are out of whack not because they are over sensitized to an injury or triggers but because they are damaged and the pain is from them attacking us. Therefore how can we talk or think ourselves into feeling pain free? How can we reverse the over active nervous system?
Yes, we probably can at times find ways to ease the pain or push through it but that is due to our practicing techniques and coping strategies learnt over a long time. Drawing diagrams and trying to find words to describe my pain will not make this any easier.
Having said that though, maybe next week I will see another side to it all.
I think a lot of the therapists think that if you have chronic pain for whatever reason that it is compounded by the "learned" aspect - I don't agree at all. I think a lot of people like you with chronic illness actually don't register pain until it gets far worse than a pain-naive person would be shouting about. Used to drive me nuts going to the doctor who'd pat me on the head and say "let's wait and see if it goes away". I'd already done my waiting and tried what I could do, I knew I was at a stage I needed help. I think it is a general problem with chronic illness.
Absolutely agree Pro - you express what I (and I'm sure many others here) feel extremely well. I also agree with Georgie that it isn't about triggers or overreaction to pain it's because we have a systemic process occurring that can only really be modified but not overcome through mindfulness.
Georgie thanks so much for this post - I know I've rambled but the timing happens to be so helpful for me to think it all through because I meet my new rheumy for the first time at 9am tomorrow 😳 🤞🏽X
Totally agree Pro and that "let's wait and see" attitude makes my blood boil. I am not 3 years old, I am a mature woman who knows her body. I know not to rush here with every little twinge and niggle, I have waited for a reasonable period of time waiting and seeing before bothering you, and wouldn't be here now if I didn't know I need help. Good grief!
Twitchy, so glad it's helping you in some small way ( I forgive your rambles and best of luck for tomorrow. X
Thanks for opening the discussion Georgie-girl. I've watched some of the academic neurologist lectures debating "learned pain" and the theory of increased sensitivity. All with dinky pictures of neurones firing, but, as I think we all agree, very many of the scenarios they are discussing don't apply to auto immune inflammatory processes. They certainly don't cover our beloved flares anyway, when we might have been tootling along then get hurled off track, the pain was not to bad, then ripping you apart ....
Not a case for tea and teary eyed hugs as support methinks.
During my 40,years in the diagnostic wilderness unaware of my Ehlers Danlos hypermobility + infant onset Lupus, early onset sjogrens, the medics who helped me most to manage my various types of lonnnnnnng term Chronic Pain were my Alexander Teacher (also my psycho synthesis therapist) + Osteopath + Pain Consultant. Pain Science has come along by leaps & bounds during those 40 years. And I've spent the whole time studying both my Pain & the theory. I'd say your discussion is a MASTERCLASS on the subject: I wish you could've video-ed you 4 thrashing this out & put it on YouTube!
My fav Pain Science reference was given to me by my osteopath...the title is Explain Pain, by those wonderful aussies @ Noigroup...it acted as my equivalent of a Pain Management Programme....it saved my life & sanity during my darkest 10 years before the NHS finally recognised the immune dysfunction & connective tissue disorder underlying all my stuff. And PRETTY MUCH everything said today about this subject is in the pages of this WONDERFUL ground-breaking big work book.
Interesting reading your comments about a pain management program that your doing at the moment!. I too have been on one and found it helpful learning about the different kinds of pain and how best they're treated!. I've learn't different coping strategies and above all it was lovely meeting others experiencing the same things and having same thoughts!. Always heartening to know we're not alone!. I've made two new friends as a result and learnt how to text so nothing is wasted. I still had the same level of pain but the idea is to show us how we can do more with our lives despite the pain and gives us the support and encouragement to try each week and report back.
I've got info sheets I can refer back to in difficult times and my group does hold a reunion twice a year for feedback and help. Hope yours will too.
Hope you do get benefit from it, really PAIN is PAIN doesn't matter which illness it is that gives it us , it has the same devastating impact on our day to day life. Anything that helps us has got to be good!. X
Agree with you Misty but from my own experience these type of courses and workshops are only as good as those who run them. Mine was run by volunteers with long term conditions so only one worshop on pain which I was flaring so couldn't attend! X
Oh twitchy, how ironic why you couldn't attend the week on pain!. Do agree with you these courses depend on whose running them. I was lucky that mine was run by pain physios!. Good luck today, hope goes well. X
Thanks Misty for your input, I really appreciate it and I notice you said that it didn't alter your level of pain despite learning various coping strategies? I can't help thinking that that really isn't any help at all but I guess everyone wants something different from their programme.
I hope I get as much out of my course as you did yours in terms of after care and feedback etc.. X
It may have been that I was lucky in that my course was run by pain physios. Who runs yours?. I know it seems strange to do something that doesn't alter pain levels but what it did was teach me how to cope better with the pain I have and taught me how to do more normal things despite the pain!. It's also given me the confidence to go back to my voluntary job one afternoon a week!. That feels good too because I'm not letting the pain win!. I do hope you get this much help from yours. Keep us posted how you get on. X
I will Misty Thank you and I'm so pleased that you seemed to get so much from your course. I suppose getting confidence back to be able to do normal things again can be a huge relief in itself.
I'm keeping an open mind and my fingers tightly crossed X
I was practically housebound at my worst and I feel they've given me my life back!. Admittedly they also agreed to do injections that have helped me too as I have severe nerve pain!. It's great you are keeping an open mind, that's the best way to be and you will be helped. Fingers tightly crossed for you. Keep posting. X
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and best of luck for tomorrow. X
Flare and the unbelievable pain
is anyone on the site ill/disabled and on the work programme?
