Managing pain .....or not!

[Nerak12]

Hi fellow PMR sufferers

I have just finished reading a really interesting thread which got me thinking even more than the recent publicity about opioid addiction has done. That just got me thinking “uh oh, knee jerk reaction, there’s going to be a mad dash to cut everybody’s analgesia now”. Seems I was right judging by the comments and tales of woe and frustration posted on our forum.

As a nurse, I dished out countless pain killers to patients every working day. Some were effective, some were not. Some patients would take everything and anything on offer and others you had virtually force feed (not literally!). I also witnessed the changes in thinking and attitudes to pain relief which have happened over 40 years. This went from pain (particularly in our more senior years) was something to be expected and even endured, to there is no reason why anybody should be left to suffer in pain (from professionals) and patients expecting pain relief to be instantaneous and total at any cost like an Amazon delivery.

The thinking that makes the most sense to me, is this...

1) the cause of the pain needs to be correctly diagnosed and then effectively treated in a timely manner.

2) the right type of pain killer should be given for different causes of pain. Not “oh well, if that doesn’t work will try this”.

3) the minimum effective dose should be taken, for the shortest time, so frequent reviews are necessary and doses and combinations adjusted up & down.

4) everybody’s pain is different and everybody has different pain tolerance. What works for one may not for another.

5) pain relief should be sufficient to allow the patient to mobilise and carry out their activities of daily living to a level that is right for them and their underlying condition. By this I mean, that if you have something wrong with you and all the pain is taken away you may cause further injury. However, if you have so much pain you can’t move you are going to suffer many more and possibly worse problems and that’s without even starting to consider the psychological impact.

6) some types of analgesia are safe for long term use, others should only be used for short periods

7) some analgesia causes more side effects in more senior patients.

8) all drugs have potential side effects and these need to be mitigated. For instance all opioids can cause constipation and this can have really extreme effects in older people. I had patients through my unit every day when I was nursing who were constipated as a result of taking pain killers (often due to arthritis, fibromyalgia or recent surgery) who were confused, had abdominal pain, were dehydrated and anorexic. We never prescribed opioid pain killers in the elderly without laxatives.

9) patients who have the wherewithal to manage their pain themselves should be given all the help they need to do so. If they can’t manage their relatives or careers need that support.

9) pain should be treated holistically and rather than just dishing out tablets, patients should be advised of all the other things that can help such as heat, ice, exercises, stretching, massage, position, seating........ I could go on and on.

10 & finally, doctors (and other healthcare professionals) have to listen to what their patients say and always try and set patients expectations at a realistic level (without comments such as “what do you expect”, or “take these and all your pain will disappear”!).

I think we all know the strain our healthcare system is under at the moment and a lot of the problems people are reporting are the signs of a system that’s struggling to cope with the simplest things. I’ve banged my own head against brick walls many times since my PMR diagnosis 18 months ago. I don’t believe there are many GP’s (or healthcare professionals) who intentionally go to work wanting to do a bad job and upset their patients, but the system is grinding them down. If they leave, who will be left to look after us? I do think we have to do what we can to help them do their job better. When you’re feeling like s**t that’s the last thing any of us feel like doing, but the opioid story is not going away and it’s going to affect more and more of us., The press will milk it, directives to cut use will come down to doctors from NHS England and GP’s will get nothing in the way of resources and support to help them manage the situation.

So, it’s down to us (like we so often say) to help ourselves, become expert patients, support others in the same boat and maybe if we’ve got any strength left deluge our MP’s to get the problems raised in parliament and something done.That of course is when they’ve stopped tying themselves up in the dreaded B....t!!!

And breathe.............

Sorry, if anybody finds any of this offensive or patronising or anything else horrible. I just needed to do a data dump after reading all the angst. You’ll be pleased to know that I’m going to stop thinking now 🤪😀. I’ve made my back ache perching on a kitchen stool leaning over my iPad 😱 Maybe I’ll just take an aspirin!!!!

Hugs to all you fellow PMR peeps XXX

[PMRpro Ambassador]

"This went from pain (particularly in our more senior years) was something to be expected and even endured, to there is no reason why anybody should be left to suffer in pain (from professionals) and patients expecting pain relief to be instantaneous and total at any cost like an Amazon delivery"

I agree with every word I think. Basically - if I say I have pain, I have pain. Don't dismiss me but at the same time be measured and thoughtful about the approach. Here the Pain Clinic uses approaches that work really well but are pooh-poohed in the UK. I had the same experience in Germany the best part of 40 years ago. None of them has ever offered me opiods. The approaches when I broke my leg were very different here and in the UK - and the attitudes here were far more promising for a good recovery than what I eventually met in the UK. But it has been OK - could have been better though.

It's like almost everything really, isn't it and it parallels the anger you experience from patients and patient's families when the doctor has to tell them there is no answer available. Now that might be here in this hospital, here in this country or anywhere. But it hasn't been helped by the (to me at least) patronising attitude I have met too often that "the NHS is the best in the world and we as doctors know best" - remember the little boy with a brain tumour in the south of England?

[Nerak12 in reply to PMRpro]

Hiya PMRPro. I knew you’d be along with some insightful comments 😀. It’s so interesting the way pain is managed in different countries and cultures. I totally agree with the benefits of specialist pain clinics. We don’t have enough and the ones we have are under resourced. The consultants and nurses are absolute gems and on occasions are angels with the patience of saints.

I always remember being told early in my career that “pain is what the patient says it is”. None of us know what somebody else is experiencing. We might have a fairly good idea (but often based on our own experiences), and the more information we have the more we may understand, but it’s like grief. Everybody experiences it differently, are affected and cope with it in different ways. Some people are able to own their pain, some ignore it and all places in between. Nobody is right or wrong. Personally, I try really, really hard not to say “I know how you feel” about anything. I just try to understand and offer suggestions if wanted.

I’m with you on that statement “the NHS is the best in the world”. Particularly as many who say it have probably not had much if any experience of other countries healthcare. There’s a lot of “not invented here” syndrome as well. My former colleagues were most surprised to hear of the excellent care and service I got in one of Porto’s hospitals when I recently sprained my ankle. “I suppose it was private” was one of their comments - derrrr!! “No” I said, “I just paid €20 like everybody else.” “Oh!” was the reply.

Yes, indeed I do remember the little boy with the brain tumour and his poor desperate parents. All that hurumphing and puffing and now we’ve got proton beam therapy here. Well, what do you know!! British medical establishment & government at its dismissive and arrogant best! Seems to be a lot of it around at the moment.....

Great to see you as a moderator by the way XXX

[Blearyeyed in reply to Nerak12]

Really enjoying this discussion .

I have to say , you are one of the most considerate Nurses I have heard from over the years , you really have considered pain and the individual and talk about it in a way that I haven't heard from a professional before.

I agree the UK needs more Pain Clinics , it would also help if more GPS / Specialists requested more advice from Local Pain Clinics too , the explosion of adding one drug on top of another , then another may reduce with more communication between services.

I was given opioids , but have it for a very specific type of pain , for short term use only.

I worked with the Pain Clinic and the Specialist to find other options which meant I only needed to use opioids when no other medication worked.

So , unlike many , I have not fallen into a cycle of building up tolerance then needing the drug increases that many of my friends with pain issues on opioids have. Tramadol is on repeat , but rarely called for in my pain arsenal.

I do , as a patient wish that the NHS , although one of the better health care systems in the World would encourage more outward thinking and learn from systems outside the Country , and , other Trusts with good working plans for specific issues in the UK. Getting rid of the postcode lottery would help the NHS as much as the Patients.

Any improvements , that don't take excessive budget changes , must be of profit to Professionals struggling in an overworked system and help budgets too.

Sometimes when it comes to pain issues , it's not treating the pain , but preventing it , and the care you get can help that too.

A willingness to remember little things , checking a Patient's history , listening to the patients knowledge of their own pain , knowing that taking blood in certain ways or handling patients with different health issues can prevent reactions , extra pain or bruising.

Providing more information on self help for conditions, or the style of communicating can all help prevent extra pain for patients.

As a patient that has used services in two different UK countries over the last year I can say from experience that the service I get in England has not been more beneficial because of the extra drugs or tests they could give me , but more from the amount of consideration , communication , and information given throughout the process.

[Nerak12 in reply to Blearyeyed]

Morning Blearyeyed and thank you for your reply. So true that it’s often the “way” and not the “what” things are said to us that makes the difference. There are many great services and practitioners striving to and often succeeding in delivering really good care in our NHS. Like most experiences in life we get most wound-up when events don’t meet our expectations and we feel disappointed and sometimes aggrieved as a result.

Answers on a postcard please......

[Soraya_PMR]

A recent TV programme in UK had a special GP team set up a ‘pain unit’. Placebos were given, and quite a large chunk of patients had reduced pain. The placebo effect obviously...... but hang on..... those benefitting most were those who received more time with the doc, were listened to, and worked with dr to plan care. The conclusion, GP time slots should be longer to be effective, but they’re just getting shorter IRL.

[Blearyeyed in reply to Soraya_PMR]

Totally agree with that , it's often not just the patient asking for pills but the lack of time that a GP and Patient get to communicate in that causes the prescription of drugs before other options are discussed and considered.

[Soraya_PMR in reply to Blearyeyed]

Exactly! Moons ago when I saw my spinal consultant, drugs were not mentioned, instead he stood with me and showed me which exercises I could do safely, then got me to do them with him so I was confident. That had been my issue, what can I do that won’t cause further problems? Mind you I had paid to see him and had paid for the MRI, couldn’t wait for 18 months, I had a life to get on with!

[Nerak12 in reply to Soraya_PMR]

Morning Soraya_PMR and a lovely sunny one it is here too 😎 at the moment.

Your post revealed so much!

You saw a consultant, therefore a specialist in their field. How many of us can do that when we need to?

You paid, therefore you got quicker service and more time. How many of us can afford that?

You paid for your MRI so you got it and the result quicker. How many of us can afford that?

In the past I have been fortunate. I had private healthcare for a period when I worked for a healthcare product manufacturer. It made a huge difference to the speed in which I was seen, who I saw, the time I was given and the accessibility and quality of therapy I received. If I had had to pay, it would have cost me thousands of pounds. I can’t afford that now.

More recently, when working back in the NHS I needed physio for niggling and quite disabling pain near my thoracic spine that wouldn’t go away. It was like someone was sticking a lit cigarette into me and the pain radiated out to my right shoulder. Pain killers didn’t touch it. The only thing that helped was to lie down. I was referred to NHS physio. After 6 sessions with nothing working the physio tried acupuncture which started to ease the pain. Unfortunately I ran out of my allotted sessions and I couldn’t get any more, so I paid for private acupuncture and the pain got sorted.

A few years later - about 4 years ago the pain returned - excruciating and again nothing helped. I couldn’t get a NHS physio appointment for 5 months and when I did well, chocolate teapot comes to mind. In desperation I paid for a chiropractor who after several visits finally found the source of my problem right up and underneath my right shoulder! The relief was incredible, but again I had to pay. I’m now a widow and retired. Paying isn’t an option and like so many people I have paid, by way of taxes, all my working life.

This is the quandary we are all in and it’s going to get worse, unless politicians are willing to grasp the bull by the horns and redesign our health system and how we pay for it. Healthcare costs money. Good healthcare when you need it costs even more money, but there’s no point throwing money at a system unless it’s well managed and you have the right people, with the right training, in the right place at the right time. But it’s even more complicated than that. As a nation, we are not healthy. We have been storing up trouble for years and the bubble is bursting putting more strain on our already overstretched health service and it’s getting worse. Everybody who presents to the NHS for care needs help, but the help they go looking for, or the help they are given may not actually be the help they really need! This brings me back (at last), to your original point about being given exercises rather than pain killers. You got what you needed because you saw an expert, got the investigation you needed, followed by the discussion and information you needed and finally the treatment you needed within the timeframe you wanted/needed. Wouldn’t we all feel/do better for that?

So what I’m saying, is that there are no easy answers. There are some really tough and ethically challenging questions to be asked, but if we want a really effective health service that meets our needs some answers are going to have to be found, otherwise I think it will continue as business as usual with us. Just hope it’s soon 🤞🏻

[Soraya_PMR in reply to Nerak12]

You’re right, and it is a big question whether we should be able to pay to ‘leapfrog’ the system. Part of me says no. But the part of me that was in pain said yes! £1.5k to get on the road to recovery or 18 months unfit for work? No wages, no house. The benefits agency have never paid me a bean, so not much choice really. And I wasn’t eating into any time or equipment that was NHS.

And yes I pay for chiro whenever I need it, therefore GP doesn’t refer me to NHS physio as I have tried and it doesn’t work. Chiro has kept me moving since my 30’s, that’s a lot of physio appts freed up for someone else.

Oh and the spinal issue is from NHS nursing, the days when we lifted patients with no hoists! I have a lot to thank the NHS for 😮

[Nerak12 in reply to Soraya_PMR]

Hi Soraya. Maybe, those of us who can afford to go private - even if it’s only occasionally, could get a bit of tax relief? Trouble is, increasing private work will take more of the good and experienced staff out of the NHS. They can’t be in 2 places at once. There are no easy answers - unfortunately. Xx

[Blearyeyed in reply to Soraya_PMR]

Good on you !

There is nothing wrong with getting private help for your condition if you are in pain and need it. Never let anyone make you feel you have to justify or feel guilty for your decisions on your own health care.

It is your body and your quality of life you are protecting , we should all be allowed to do what we can manage to do to get help , without being made to feel bad about it , when we feel bad enough already.

This is especially true if by continuing to struggle on in pain on a waiting list will actually cost you your job , your wage , your home or make your condition so much worse that you will end up needing more assistance in the future.

Many people choose to dig into their savings , get loans or struggle to get that private help , often , not because they can afford it , but because they can't afford not to do it.

Nobody should be made to feel bad for taking care of themselves if they can afford to do it , by doing so you are freeing up places on an overburdened system for those who cannot afford to get the odd piece of help privately .

Don't forget , it won't stop the consultants who usually choose to spend part of their week working privately and part of their week working for the NHS if you choose not to use them.

They will work outside the NHS anyway , despite your choices because doing that is their choice too. They want to spend some time doing Private work , in fact many Doctors and Consultants willingness to take a job in the NHS is only because they are allowed to do this flexitime.

Many good members of staff , and many top specialists in the country, would not spend any days working in the NHS at all if they were not allowed to either spend part of the week in Private Consultation or allowed to take part in Research Projects outside the NHS.

This is as much personal choice for their own career ambitions as it is liking to have some time away from NHS restrictions or NICE rules.

I also know many people and friends over the years , trained Nurses , who chose to leave the NHS to work as locums for ..... NHS . That was a choice based on money and hours not on what affect it might have on the Department they worked for , or on how the system was making them feel. They went straight back to working in it , just got locum pay , and as much as they said to people outside that it was job stress , to friends behind closed doors we were told the truth , more money for less work.

If people can make these decisions about choosing a career within the NHS , not based on how it affects patients , patients should be allowed to make decisions for their own benefit too , and know that their choices won't actually make a difference on who works for, or what treatment is available on the NHS.

Take care , bee xx

[Soraya_PMR in reply to Blearyeyed]

Yup! You get it.

[Yellowbluebell in reply to Soraya_PMR]

After getting some groin pain which gp said was sciatica he then promptly got down on the floor and started showing me exercises to do to help relieve pain!! He then stood up and started a mincing walk across his office to show me another exercise. My poor OH just stood there with his mouth open but it made such a difference to me feeling he was actually listening to me.

[Nerak12 in reply to Yellowbluebell]

I’d love to have seen the mince!!!! 😂😂😂They say laughter is often the best medicine!! But you’re absolutely right - feeling listened to - soooo important!!! Xx

[Yellowbluebell in reply to Nerak12]

The mince was very funny to watch my 6ft 2inch gp do tbh. Put a smile on my face for most of the day!!

[bunnymom in reply to Yellowbluebell]

I currently am having groin pain which I am thinking its pulled muscles. What were the suggestions? I hate going to Dr as I don't believe I'll get help and don't want pills

[Yellowbluebell in reply to bunnymom]

My gp had a really good dig around and made sure it wasnt a hernia and decided it was either sciatica or pulled muscles. Either way the exercises were the same. You need to have the gp just ensure it isnt a hernia. You dont need to take any more pills but just check it isnt anything more sinister than a pulled muscle.

[Nerak12 in reply to Blearyeyed]

Hi Blearyeyed. 7 minutes, that’s all the GP’s have for greet, listen, examine, ask questions, consider, diagnose, advise, prescribe. Just under 1 minute for each part of the consultation. Don’t know how they do it. Xx

[Blearyeyed in reply to Nerak12]

Sorry to say more often than not they don't . At least in the experience of many of my friends , and many people who talk on Health Unlocked.

Many of us have dealt with the frustration of not just having to wait weeks for an appointment but when it does arrive most of the appointment is wasted in having to tell the GP what is wrong with you before you can discuss the actual help you want. When you are stuck with a short deadline it means most GPs are not happy , in my experience , to discuss more than one symptom at a time , making it very difficult to fully manage your care with a complex illness.

This is slightly helped if you can manage the stress of trying to get an appointment with the same GP, but it would be helped more often by GPs bothering to read the Medical History Summary on your Records before you go in. Usually , a half page list of your confirmed diagnosis and drugs , not as time consuming as the explanation.

I understand there are great difficulties in NHS staffing and funding , finding people willing to work in Wales seems to be one of the greatest stumbling blocks.

I also understand you have experience of the NHS as both a patient and a Professional.

But , unfortunately , some of the things that seem to cause some of us greater pain as patients from our personal experience aren't always because of waiting lists or money.

Unfortunately , alot of us haven't been treated by people who are clearly as forward thinking as yourself , as I said before, I was amazed about how considerate your piece on pain was , because I haven't often met people in charge of my treatment who acted or spoke in that way.

If you get passed around alot you also get to see that the same standards of care and patient information are not available , not just between Private and the NHS , not just by comparing different NHS Trusts , but between individual Departments in a single hospital , right down to individual members of staff on a Ward or at a GPs Practice.

I know the struggle is hard in the NHS , and I do feel alot of admiration for the people working in it whom work hard every day to try and give the better standards of care that are available .

But , I also know , that those people are often being let down not just by lack of funds , or waiting lists , but by the level of help or information that is available to Patients when they finally get to see someone because of the lack of consistency going on , and , the often unsympathetic or disrespectful manner that some Professionals in the NHS use in Consultations.

That considered and consistent care doesn't cost the NHS any more money , it usually saves it and saves them alot of time and appointments too .

It doesn't cost a Practice or Hospital Department the earth to have appropriate print outs on how to handle pain , diets for different conditions , or a pamphlet of exercises for more normal conditions , it saves them money .

In the last twelve years, however, I have only met two Consultants and one Physio that could grab a pamphlet or tell me information from their knowledge of what self help I could do to help the things they regularly treat .

You can forget about getting diet advice from virtually everyone and you often get a very grumpy response if you ask for this sort of help.

Too often I have heard a Doctor or Nurse say that I should just take the pills and then if it doesn't work we'll see .

Most doctors don't even bother to advise you about were to look . We are all stuck with a terribly overburdened NHS , the overworked and the underseen , so all the free things like listening and information that can be crammed into a consultation of any sort would be helpful to us all.

It would reduce the amount of pain relief we had to take generally too other than for conditions were there is no other choice , like GCA and PMR.

Really Sorry , for the long response , especially to someone like you who obviously does a great job in the NHS , and is clearly also one of those poor NHS people who have to suffer on forums like ours everyday listening to our complaints about service we receive that is not as good as the one we can read must do ( or did) everyday.

Unfortunately , these forums are also the places were we finally feel we can let off steam , get help , complain and be listened to properly , but I understand it must be hard hearing the NHS regularly getting a lot of complaints when you work in it.

Hugs , bee xx

[Nerak12 in reply to Blearyeyed]

Hi bee.

Thank you for your lovely long and heartfelt reply. I couldn’t agree more with what you wrote. You’d think in this day and age information would be at professionals fingertips. In some places it and some places it isn’t. Did you know, that every single department in a hospital has to pay for its leaflets? You are not allowed to just type something up (no matter how experienced you are) without it all going through various approval processes and all being correctly logo’d and set out in approved typeface, layout blah di blah 😱. In some ways this is good as it ensures information is correct and consistent and it should ensure it gets regularly reviewed. On the other hand........ I’m sure you get the picture. Then, if that was bad enough, most departments have woefully inadequate budgets for these things, so rely on charity money and charity resources such as the Osteoporosis Society’s or Alzheimer’s societies or British Heart Foundation’s booklets for patient info. Some charities now charge NHS departments for these, so then we’re back to square one. It also relies on nurses (already shattered) to do the ordering. Every department right down to ward level gets charged for printing and photocopying and again woefully inadequate budgets to cover the cost.

I wouldn’t expect any member of the public to know this information, and I’m not condoning/criticising any of it but there it is. Nothing is as simple as it looks. I have torn my hair out on many occasions totally frustrated by the system and guess what? It all adds to the stress.

I do have to add, that when I went for my DEXA scan there was loads of information readily available in the waiting room and offered by the nurse who did the scan - so it can be done - but she was leaving because she was constantly having to work extra hours which she was getting paid for!!

By the way, I’m no longer practicing. I decided to retire aged 60 in October 2017. Totally burnt out and exhausted. 2 weeks after handing in my notice I was diagnosed with PMR . I really miss my patients and the feeling of being in a team, and of course the salary, but I don’t miss the stress!

Hugs & xx to you. 😀😀

[Blearyeyed in reply to Nerak12]

I have looked into this before , and although I do not work in the NHS , I know many people that do , and many people who work for Health and Disease Charities ( big and small ) and discuss their opinion of health information from the facts they know about what could be available to all in any waiting area or consulting room.

I do know that there is a finite budget for administration , but as you say , there are charities for all different diseases and illnesses , and government led initiatives, local service pamphlets and benefits related paperwork , which is available from all these groups for free , they just need ordering .

In fact , some of the smaller charities are very eager to have their paperwork and support pamphlets made available widespread across the NHS , and are often turned down , because their disease is not a priority. It may not be , but the GP or NHS department that is involved in potentially treating that disease should keep their contact information available for patients and the odd pamphlets for reference for themselves.

When I have received the right help from Consultants the information was mainly given as a standard NHS handout , standardised information available from the thousands of PDFs available via NHS services, or they were charity pamphlets . The reason I got them was because the people involved were informed and bothered to make sure the advice was available. Or , I asked and that person was willing to check , look it up and print it off then and there. More often you do get brushed off .

Some could , like Sorayas Consultant show me off the top of their heads some things that I could do as a start before seeing a physio, that is all I have ever wanted , not alot , just something to keep me going during the wait so I didn't get worse or need extra pain relief , that shouldn't be too much to ask.

Asking questions you hope for at least some sort of answer, Consultants , Dietitians , Physios etc should use the resources they have available for themselves and then pass it on.

Knowing your facts does not cost the NHS money , and saves it time.

[Nerak12 in reply to Blearyeyed]

Agree with all you’ve said xx

[Blearyeyed]

Don't stop thinking or shut up !

That was one of the most well considered posts on pain relief , health care , and the patient I have read in a while.

You have managed to bundle all the considered pieces of advice given on the forum on lots of different posts into one articulate and simply packaged parcel.

I'd say we should all have a link to it.

I don't see anything offensive in it , even the modern idea that people expect that pain relief should be as instantaneous as an Amazon delivery , is just telling us to be realistic about our body and it's medical needs.

It is also tempered with the view that painkillers should not be given without considering the whole patient , in a " let's see if it works " method .

I am so happy you have written this post , I'm going to follow it , I think it would make a handy link for anyone just beginning on the road of pain relief.

We need consistent care , yes , informed care , yes , but we should always be realistic about our expectations too.

Thanks xx

[Nerak12 in reply to Blearyeyed]

Thank you 🙏🏻😊

[Hidden]

Hi nerak12- i agree with all you say. I have issues about unrealistic expectations about the power of the pill. I expect to just have enough to function. I understand that my fibro pain is basically my system failing to reboot into 'non pain' and that movement and manageable exercise is not doing further damage - unless its an injury of course. PMR a different animal.

I agree this whole opioids business is not going away. Over the years i have had detox weeks to address tolerances. I realise its probably not good to go cold turkey but it worked for me. After withdrawal, which i can say is not a pleasant experience, i would reintroduce smaller doses if the pain started to immobilise me or got above my 7 (basically not being able to turn to get out if bed or having to walk backwards to make legs actually move- fooling brain i suppose). After a couple of months i was back at full dose with breakthrough pain having used cold (,heat for fibro makes it worse for me), tens machine, Capsaicin cream, stretches, rest, movement, distraction, usually humour, pain management course, sleep management course, stress management course CBT and, my personal favourite, just rubbing the area to really overstimulate those pain messages. Since PMR i havent dared to do a detox. I dont want shock my system too much!

I find it strange that within a few years of making co codamol OTC that they are wondering why there might be issues. I have only ever taken more than my prescribed dose once and felt so ill i never even considered again. I have never consciously had a 'high' or whatever the aim of taking opiates is. Is it up or down or level? I am sure it does make some difference which is why i dont take them before a long journey. I usually have to text my sister when i am visiting (driving to hers) to come and turn me over in bed on my first early night.

I have not expected a pain free life for many years. Like you say a functionality is the prime aim that motivates me. Even brushing my arm against a door jamb can, and often does, take my breath away. As i have previously said...if i get muscular tourettes then its a bad day. Sorry about the length - sometimes it just happens. I suspect, but hope not, that some will walk away from PMR with chronic pain and/or fibromyalgia. 🤞🌻

instituteforchronicpain.org...

[Blearyeyed in reply to Hidden]

What is muscular tourettes?

Sounds like a very inventive description that if it applies to any of my own physical reactions I'd love to add to my pain description dictionary😁

[Hidden in reply to Blearyeyed]

Please do...it is basically that the pain or a movement that causes pain (kerbs!!!!) and hitherto a spontaneous and uncontrollable utterance of the filthy kind.

The lexicon of pain.

[Nerak12 in reply to Hidden]

Poopadoop, I love your turn of phrase. With your permission, I will store “muscular Tourette’s” for future use. Just brilliant!! By the way, I fortunately noticed before sending this that predictive text had changed your name to “Poop a foot”. Now that would definitely provoke muscular Tourette’s!!!! Loved your previous post. Xxx

[Hidden in reply to Nerak12]

😂😂😂 i like that. Poop a foot. 👍

Feel free - muscular tourettes has served me well for a few years in many different ways. 🌻

[PMRpro Ambassador in reply to Blearyeyed]

I have PMR tourettes and I've heard others say the same thing. If I am flaring at all I may not notice pain or stiffness - but my language is most unladylike. Which would be OK (I don't care) but OH is a really prissy little po-faced arse ...

[Nerak12 in reply to PMRpro]

Ooh!! Going back to an earlier post, I think a cattle prod might be required 😜

[Blearyeyed in reply to PMRpro]

I do have it !

I never used to swear , but in the last two years my language has become that of a Victorian Dock worker.

My family and the odd friend nearly turn somersaults when they hear it.

At least I can say , "sorry , an attack of the PMR or Muscular Tourettes again in future".

[Nerak12 in reply to Blearyeyed]

👍🏼👍🏼😀😀😂

[Hidden in reply to PMRpro]

😂😂😂

[Blearyeyed in reply to PMRpro]

😂😂😂😂😂

[Soraya_PMR in reply to Hidden]

“ I have never consciously had a 'high' or whatever the aim of taking opiates is. ”

Nor will you all the time the analgesic is titrated and equal to the pain. Highs occur when there’s no pain and opiates are taken, pure free drug running around the system with no pain to counter it. You can take super crazy doses of morphine to counteract pain and will not become addicted, as the pain reduces (as in post op) the morphine is reduced, no addiction.

Doctors should be free to prescribe opiates appropriately, but then they must review appropriately too, and reduce or withdraw as necessary. Hanging on to strong painkillers AFTER pain is what causes problems. Which is why prescribing strong analgesic should be accompanied by a clear plan and other therapies, as pain killers won’t CURE pain, that needs something else. A lot to discuss in 5 minutes with a GP!!!

[Hidden in reply to Soraya_PMR]

😂😂😂 it is a lot. That explains why i dont "feel" it. Makes sense and somewhere in my mind is that info. Its not something I would like if it made me feel like i did when i basically had a whitey as they used to say.

[Nerak12 in reply to Soraya_PMR]

Totally agree with everything you’ve said. Post-op pain also tends to diminish quicker as people get moving. It therefore makes sense to give adequate pain relief and very importantly help/advice to get people moving as soon as safe to do so and keep them moving once they get home - hugely important!! Xx

[Hidden in reply to Nerak12]

I was reading something the other day that talked about morphine post op can contribute to future pain hypersensitivity. I look at 10s of articles and research a day so no idea what it was. Note i say look, not read. That's too difficult on this smartphone.

[SusanJF in reply to Hidden]

Makes a lot of sense! Mine came back with vengeance and GP didn’t make any connection at the time since been diagnosed with PMR!

[Nerak12 in reply to Hidden]

That’s an interesting one and would be good to read in context. Like most things, clinical trial or retrospective review probably found this true in a cohort of patients. Trick would be to find those patients before you ever gave them morphine. This would require more pre-op testing (at a cost) which would probably only benefit a small number of patients. Mind you, you’d only have to do the test once. A cost v benefit scenario and the predictive test probably doesn’t exist yet. Just a thought (not another one😱)

Must be dog walk time.... 😀Xx

[Hidden in reply to Nerak12]

I suspect it was probably at the animal testing phase. I have to stop reading so dont have full grasp.

Me too. Dog got her legs crossed. 🐩

[Nerak12 in reply to Hidden]

Enjoy! X

[PMRpro Ambassador]

What a fascinating discussion!