[ This post was first published October 2020. Updated March 2022 with a new petition for reviewing UK NHS guidance ]
The NEW Petition to have NICE review their harmful chronic pain guidance is here. Old signatures on the previous petition sadly don’t count. We need 100,000 to sign by September 2022 and there’s a long way to go. Please sign here & share to make a difference.
Most people have likely heard of ‘the opioid crisis’, with news reports of medications being over-prescribed, overdoses increasing and rates of addiction climbing. In response, healthcare providers are challenging patents and in some cases reducing or removing their painkillers. For those with chronic pain, this can be incredibly dangerous, a move borne out of fear and ignorance for what chronic pain actually is and what it means to those individuals.
As September is pain awareness month, I’m taking a little look at chronic pain, medications, and why the ‘opioid crisis’ threatens those with genuine chronic pain.
Chronic Pain Is A Chronic Problem
The so-called ‘opioid crisis’ is a term that has arisen from the increasing prescriptions of, and deaths from, opioid medications. It has become a national public health crisis that the Centers for Disease Control and Prevention estimates to cost the US $78.5 billion each year, tallying up the costs of healthcare, criminal justice, addiction support and lost productivity.
In the 1990s, the big pharmaceutical companies behind opioid medications claimed that such products were free from addiction, making them safer for patients. As a result, healthcare providers started prescribing more. However, it was then discovered that patients were becoming addicted, and prescription levels continued to rise in tandem with opioid overdose deaths. The highly addictive nature of opioids led to more than 47,000 people in America dying in 2017 from prescription medications, illegally manufactured fentanyl and heroin. There were also 1.7 million people in the US estimated to be suffering from substance abuse related to prescribed opioid medications and 652,000 from heroin abuse in the same year.
The National Institute on Drug Abuse (NIH) provides a few eye-opening statistics:
- Around 21-29% of those prescribed opioid medications for chronic pain end up misusing them and 8-12% develop a use disorder.
- 4-6% of those misusing prescribed opioids go on to use heroin. Converseley, 80% of those who use heroin began by first misusing prescribed opioids.
- In line with opioid misuse rates growing is the increasing number of reported neonatal abstinence syndrome births.
Yes, opioids can be dangerous. Yes, there is a problem. But the issues come with misuse and illegal use. Patients need to be well informed of the treatment options and the impact of painkillers, while prescribers need to be mindful of how and what they’re prescribing. Medications should not be stopped or withheld from those with genuine chronic pain on the basis of needing to merely reduce the prescription statistics. For those with continual pain, painkillers can provide a lifeline like no other to make the days a little more bearable.
The Opioid Crisis Vs Chronic Pain
There is, in my opinion, a big difference between the statistics and people referenced here as part of the ‘opioid crisis’, and those taking painkillers for chronic pain.
With chronic pain, those individuals are actually experiencing pain regularly or all the time with no let up, dealing each day with the mental and physical impact on an ongoing basis. Prescription painkillers don’t get rid of the pain, but they might just take off the edge enough to make it more tolerable and make daily living possible.
To me, the opioid crisis refers to :
- People using painkillers without experiencing any pain.
- Individuals dangerously mixing medications.
- People continuing the use of painkillers after temporary pain has subsided.
- Those who need to discontinue painkillers due to side-effects or wish to discontinue painkillers after chronic pain has been somehow reduced, such as through other treatments or surgery, and find that they feel addicted and struggle to stop their intake.
- Individuals using painkillers to try to ‘get high’.
- Doctors irresponsibly prescribing painkillers in cases where pain isn’t present or without advising the patient of other options or of potential side-effects.
- Individuals using illegal substances like heroin.
What Are Governments & Healthcare Watchdogs Doing?
Bodies like the NHS, NIH and HHS US Department of Health and Human Services) are attempting to improve overall understanding of pain and addiction, increase public health monitoring, improve access to recovery services, increase research, and fund other treatment pathways for pain. It sounds good in theory, but it doesn’t seem to translate in reality.
In the UK, opioid treatments have hit the news following recent NICE (National Institute of Health and Care Excellence) guidelines advising doctors not to prescribe painkillers for patients with chronic pain. The caveat is that even common painkillers like ibuprofen or paracetamol shouldn’t be given to those without a specific medical condition or injury causing the pain. NICE claim there’s a lack of evidence for the benefit of painkillers for such types of pain and that in the long term such medications can be harmful. Nor do they approve of the use of cannabis-based treatments. Instead, they’re recommending antidepressants, psychological therapy or acupuncture.
The type of pain here where painkillers aren’t recommended is supposed to be ‘unexplained pain’, which may not have a known cause. Guidelines estimate this category of pain may account for between 1/3 to 1/2 of those in the UK. In dealing with chronic pain, NICE note the need for GPs to be sensitive when discussing symptoms and test results with patients so as not to be sceptical and dismissive about their pain.
However, it also says that with chronic pain (pain that persists more than 3 months) – irrespective of the cause – that the new guidelines should be used in conjunction with current guidance to manage specific conditions.
This essentially means that anyone with chronic pain may find themselves between a rock and a hard place when it comes to their treatment if they currently use prescription painkillers. Many are concerned that the medications they take that are only available on prescription, such as opioids like Tramadol, may be suddenly taken away in favour of psychological therapy. That’s not to say that this will definitely happen, but the trend is away from medications for long term pain.
My Experience With Pain, Painkillers & NHS Cuts
I live with chronic pain that is with me 24/7, relentless and overwhelming. Some pain is very specific, such as my lower back and hips as just two examples, which are the result of nerve damage from metal tacks in my back. Other pain is more generalised and wide-spread, for which I was diagnosed with fibromyalgia. This is alongside other conditions, including chronic migraines, osteopenia, bronchiectasis, Raynaud’s, erythromelalgia, connective tissue disease, ME/CFS, pernicious anaemia, and so on.
I know the wide-spread pain isn’t in my head. I know it’s not a psychological kick-back from surgical trauma, nor is it a manifestation of depression.
I lasted for as long as I could before going down the painkiller route. Nothing over-the-counter would touch the pain I experience. To think a few paracetamol would do the trick is laughable. But it got to a point where it was too debilitating. I wasn’t getting anything done in the day, I wasn’t working working and I was just scraping by, with the pain piquing my anxiety beyond belief. It still does. The final straw was the humiliation in town, ironically after a GP appointment, where I sat on the steps of the library, desperate & in agony, crying because I couldn’t get back up and walk just around the corner to the bus. It became a decision between a wheelchair or trying prescription medications. As time has gone on, my pain has got worse.
I take Tramadol. Don’t get me wrong, it does not take away the pain. It just keeps me a little more mobile and makes the pain a tiny bit more manageable. What I currently use is nowhere near enough, and I realise that at some point I’ll need to review the need for more or stronger medications at the rate my health is deteriorating. I am at least lucky in not getting hideous side-effects with Tramadol as I have with other prescription medications that I’ve tried previously.
I don’t abuse it, I don’t overdo it, and I was supremely reluctant to use it at first. I haven’t become addicted to the habit of taking it, but I’ve come to appreciate that without it I’d be back at square one not being able to do anything and losing my mind because that’s what chronic pain does to you. It’s relentless and it chips away at your mind and body.
If I didn’t have pain, I wouldn’t be taking painkillers. I don’t want to be taking them, I don’t want to need them. If I didn’t need them as the last resort, I wouldn’t be swallowing them every day. I don’t get any kind of high or benefit from taking my medications, so I’d have no reason for which to take them otherwise. I’ve never used illegal drugs and I don’t see Tramadol leading me down that path. I barely even ever drink these days aside from a glass at Christmas.
Chronic pain and chronic illnesses aren’t choices. We just have to manage them as best we can and live our lives within the new playing field that our bodies have created for us.
I’ve already been through NHS cuts to the things I use and need. Cuts to stoma supplies. Cuts to surgeries so I paid privately. Cuts to medications. They tried to suggest I didn’t need B12 injections even though I have pernicious anaemia, which is deadly when untreated, ignoring the fact that I don’t absorb it when taken in tablet form. I fought to keep my injections but I pay for my own injections too as the NHS don’t cover the regularity at which I need them. Moving people from regular painkillers to occasional CBT sessions would save a lot of money. Money before people isn’t cool, but sadly it’s common practice, just as we’ve seen with how the coronavirus pandemic has been handled.
Invisible Conditions & Sexism : It’s All In Your Head!
The ‘opioid crisis’ propaganda and the push to move away from painkillers also plays into how many doctors and specialists think that pain is often in the patient’s head, a figment of their imagination and likely just anxiety or depression.
Your pain experience is unique to you. You understand it, you know your body and you are intimately aware with how it affects you mentally and physically. Pain might be specific or generalised, but it’s still tangible and real. I’m not saying that some pain isn’t psychological, but to dismiss the majority by saying it’s perhaps in your head is ludicrous.
This is a perverse and ingrained issue in the medical field with patients being fobbed off, being made to feel as though the issue they are presenting with – if it can’t be seen or diagnosed with a scan or blood test – might just be a psychological issue or no issue at all. This is a huge challenge for those with invisible conditions and hidden disabilities.
To this day there is still the stigma around ‘hysterical’ women, where sexism has led to physical health concerns being deemed more likely to be mental health concerns.
This kind of thinking is ridiculously dismissive and dangerous.
What Can You Do?
If you find yourself struggling to get the treatment and management options you need, persevere. Your health is worth fighting for. You might be able to see a medication specialist; in the UK, GPs and specialists can refer patients to Pain Management sessions and/or to see a medications team, who will be best placed to discuss the options.
If your GP isn’t understanding, ask to speak to another doctor. Keep trying. Show them this post. Show them your research on your condition(s). Explain the level of pain and how it affects you day to day. If the GP practice is limiting painkillers and you have concerns, consider writing to the practice manager, the NHS trust (or healthcare provider in your country) or local MP/politician.
If you are currently on painkillers and want to come off, have concerns of addiction, or feel you’d benefit from trying other medications or treatments, speak to your doctor. An honest, open conversation is the best place to start.
For more advice, check out :
- 5 Ways To Come Across As Assertive & Rock Your Medical Appointments
- How To Make The Most Of Your Medical Appointment
- When You Hit The Wall With Medical Professionals
The NEW Petition to have NICE review their harmful chronic pain guidance is here. Old signatures on the previous petition sadly don’t count. We need 100,000 to sign by September 2022 and there’s a long way to go. Please sign here & share to make a difference.
What The Prescribers Should Be Doing
Patients need to be well-informed. They need to know what the medications are, what they do, and what the potential risks are. They need to be confident in the decision to try the medication, having had an open, honest discussion about the other options possible. I don’t think painkillers should be the first call in all instances. There are various things that can be tried and then medications can be added in if needed as a multi-disciplinary approach.
It’s shocking to think that some patients are actually prescribed painkillers without even knowing why they’re on them. It’s that kind of disastrous prescribing that needs to be curbed. I overheard an elderly man in the GP waiting room talking to the receptionist last year about his Tramadol prescription. He was getting 240 pills a month, so the maximum dose, and he said “I don’t even know what they do”. When told they were for pain, the man said he didn’t have any so he didn’t know why he’d been put on them, but he’s had them for a few years!
This reinforces the need for medication reviews. The key then would be to actually listen to the patient with empathy and compassion, seeing what works for them and making sure they’re getting what they need to improve their quality of life.
Doctors and specialists should try to step into the patient’s shoes, to understand and empathise. At the very list, a little more belief and a little less scepticism and dismissiveness would be helpful. Such patients have likely already been through the wringer with medical professionals. Making them fight even harder just to get the pharmaceutical help they might need is exhausting.
Painkillers : A Last Lifeline For Chronic Pain Sufferers
It’s the same for many people with chronic illness. We’re hanging on by the shredded ends of our fingernails and painkillers may just be the one thing that’s helping us to keep a foot in the door of life. I’m all for a multidisciplinary approach to pain, but in some cases prescription medications are necessary and effective. It’s cruel and it’s sick to suggest that those with real pain – actual physical pain – could just do some deep breathing and a handful of CBT sessions instead.
To me, the ‘opioid crisis’ isn’t about those living with chronic pain. Yes, there will be individuals with chronic pain that develop reliance and struggle to get off painkillers, and that’s an issue that needs addressing with giving patients adequate information prior to prescription and the support they need afterwards should they encounter challenges. But the core problem – the pain – will remain unless there is an actual treatment for the cause. With many conditions there is sadly no treatment and no way to rid of what’s causing the pain.
These people are looking at the potential of a lifetime with pain, a future which is as disheartening as it is exhausting just thinking about it.
The problem with prescription painkillers is that there’s nowhere else we can go. I can’t order those online. And yet that’s exactly the position medical bodies will be forcing people into, pushing them into a corner to give up or fight on, seeking out other ways in which to source the medications they need. If the governments want an increase in black market goods and illegal drug use then they’re going about it the right way. If my GP called me tomorrow and said she’d have to stop the Sumatriptan for my migraines or the Tramadol for my nerve damage and the crippling pain all over, I don’t think I’d have any fight left in me.
We understand cost-cutting measures. The NHS has already let down countless people because of ignorance, unwillingness to do the required tests and the decisions not to fund vital treatments. We know about budget cuts to essential services while the ‘paper pushers’ at the top of the food chain get eye-watering bonuses on top of stomach-churning annual salaries.
To me, recent moves to reduce or remove prescription painkillers is cruel and ignorant. It’s not about patient safety. It’s about money and it’s about reducing the statistics to appease the government’s political agenda. I feel the same about the so-called ‘sugar tax’ and shrinking chocolate bars into bite-size pieces for a higher price. So much comes back to money that you have to wonder whether the people themselves even factor into the equation at all.
The media around the ‘crisis’ serves to further increase misunderstanding and stigma around both chronic pain and prescription painkillers. One should not feel weak, embarrassed or ashamed for needing medications to manage a condition.
Please do not confuse the opioid crisis with those living in chronic pain. Please do not do chronic pain sufferers the disservice of removing a lifeline. It’s a death sentence for some and a life sentence to greater misery for the rest.
Caz ♥
Do you take prescription painkillers for chronic pain, and do you feel there’s stigma attached? Have you had problems around getting the medications you need?
Related Reading :
[ This is an opinion piece with statistic sources referenced. All thoughts are my own opinions only. Please consult your doctor if you have any concerns or queries over your health or medications ]
66 comments
I have a friend that fractured her back several years ago and got hooked. It was a battle to beat that addiction. She did, but she cried and begged for her meds for several weeks. When hubby and I needed pain medication we refused to take what she got hooked on. The doctors often hand it out like candy.
Have a fabulous day, Caz. ♥
I’m sorry for what your friend went through, both with her back and the meds. Is she free from pain now? It’s instances like that – acute pain that should be shorter lived, often due to injury – where we most often seem to hear stories of dependency. I’m glad she’s overcome the challenge because it couldn’t have been easy. xx
It’s all rather poorly thought out. If you deny people the meds they need, that pushes them to find alternate sources. Much of the illicit stuff is cut with fentanyl, so people die. How does that help anything? It’s too bad there aren’t more specialty pain clinics where they’re up on the latest knowledge about what combinations of strategies work best for what kinds of pain.
Those are my concerns too, and I think that’s where a lot of the stats with deaths come from with the illegal use and dodgy products. More specialists pain clinics, and staff that both know what they’re talking about and are compassionate towards their patients, would go a long way to helping the issue I think. Thanks for sharing your thoughts.x
I know that when my back pain gets unbearable in a major flare-up, I need my Tramadol. It allows me to function and literally not want to kill myself from the agonizing pain. However, I have never abused my prescription and am exceptionally careful with it. I think it is sad that people who do use the meds responsibly are being punished along with everyone else when these meds are just taken away entirely or almost impossible to get anymore. I’m lucky I have a doctor who knows me well enough to know I would never abuse these meds.
I’m glad you have something to make things a little more manageable when you need it. Having a doctor who tries to understand and who cares makes a difference when it comes to getting the treatment you need, too. Thank you for sharing this, Maranda. xx
I have MS and a T10 incomplete SCI. Pain and tingling are chronic and at times severe. I am fortunate to have a neurologist who listens and understands that narcotics are not for my type of pain and works with me to use something safer. Should the need arise, as in your situation, then a reasonable dose is what they are intended for. (Pardon the dangling participle!)
The problem is huge in the US, far more imbedded than the media is willing to acknowledge. Thanks, Caz, for some good information we can all share.
– George
I’m glad you have an understanding & competent neurologist, which is exactly what you need on your side when dealing with what you’re dealing with. I hope that the current approach you’re taking to manage the pain is enough to make it bearable for the most part. Thank you for sharing your thoughts, George. I hope you have a lovely weekend ahead my friend ???? x
SO MUCH THIS.
I hope that means you liked the post! Thanks, Jay. It’s hard with opinion pieces on subjects like this but I wanted to give it my honest thoughts ♥ xx
Very difficult territory <3
Incredibly difficult indeed! xx
I really can’t help getting political with this but I feel this is closely linked to the fact the majority of opiods and long term illness drugs come from Europe, call me cynical…. x
Do you mean Europe’s pharmaceutical agenda to push these kinds of drugs, Rach?xx
No, more the fact there will be shortages I fear xx
I can’t believe they actually have a UK government body called the NICE.
I remember reading C.S. Lewis’ That Hideous Strength as a kid and there was a government organization in it called the NICE (I forget what the acronym stood for in that case) but they were anything but nice.
Sounds like this NICE is much the same since they want to do away with painkiller prescriptions for chronic pain sufferers.
How interesting – that’s a funny coincidence! It sounds like the NICE is the book is a bit like the nasty NICE in the UK! Thanks for sharing this, it made me smile in the middle of the frustration with it all ????
I don’t have anything to add to the conversation, Caz. Except to say how disheartening are many of the decisions made. So tough to be caught in such a net.
xoxoxo
It’s frustrating when you know that so many decisions in politics & healthcare are made by the opposite types of people; healthy people voting on reducing medications, men making decisions on women’s IVF, rich politicians deciding on benefits and housing costs. We need more realistic representation, someone to fight in our corner as the public. xx
Oh, my friend, you’ve opened a can of worms with this one. 😉 No, I’m only kidding, but it is a topic that fuels passion on both sides of the argument. Honestly, it’s a conversation worth having. You are the perfect one to do it. Thank you for having the guts to share with honesty, transparency, and raw emotion.
As you know, I’m in the US. The ‘opioid crisis’ is truly a jaw-dropping one. Your statistics alone cause alarm and concern. However, what you have shared, is true. There is a difference between one who seeks to eliminate chronic pain, live a resemblance of normal life – and one who seeks a high. Oh Caz, you wouldn’t believe the stories I could share with you of what I’ve been through over this! Most people would be stunned and amazed.
I have lived both sides of this argument. For years, I was prescribed opioids for severe, chronic, debilitating pain. I, too, had become immobile, unable to function in any sense. I was dying and we all knew it. To me, what is the most frustrating about opioids is how the body responds all on its own. Even when someone takes their medication responsibly, physiological dependence occurs. The brain then creates pain to crave more of the drug. Pain receptors are tricky things and it’s fascinating to study! (It is worth noting that some prescription pain killers are more known for this adverse effect than others).
What I believe needs to happen, in my humble opinion, are a few things.
1) There needs to be more compassion and less judgment from medical professionals. Not all chronic pain sufferers are looking to get high. Many, if not most, are looking to simply have some quality to their lives!
2) Better, more sustainable options need to be found for people in pain. Calling it ‘in your head’ only furthers the feeling of isolation and creates dangerous environments for suicidal thoughts! Hopelessness is very real for someone already feeling alone and misunderstood.
3) Chronic pain has so many sources. Medical resources need to be available, in every country, to help each patient understand what is going on with *their* health. When we know what’s really going on, we can treat it accordingly. A flippant, uninformed medical ‘professional’ doesn’t do anyone any good.
4) Social awareness needs to change. There are 2 sides to this coin. Your post helps a lot in furthering the understanding of what it’s like to live with day-in-day-out crippling pain. It is unbelievably challenging in every sense!
I applaud you, my friend, for sharing this information. Painkillers can be both a blessing and a curse. More education is definitely needed – both for patient and medical providers. Most assuredly, cases of outright abuse, illegal prescribing, etc. need to be addressed! It does nothing to help the public understand what someone actually living with pain endures.
I am sending you my most heartfelt love and appreciation. You are brave and I thank you for all you do! ????
It’s a messy can of wriggly worms, isn’t it? I wanted to be honest, even though I know it won’t be popular among many who believe such drugs are evil incarnate and for good reason if they’ve been addicted themselves or know someone that has; they’re going to be quite rightly weary about them because these drugs can be dangerous and addictive, but the crisis media isn’t saying that ‘safe’ dosages as prescribed longer term for chronic pain are the problem. Most of the stats are from illegal use and dangerous products, and many people taking them won’t have pain. It’s bad for those with pain then who get ‘tarred with the same brush’ so to speak.
I’m so sorry for what you’ve been through, both with pain and the opioids for that pain. The thing is, where does chronic pain end so that someone can come off the prescriptions? If the cause isn’t found or there’s no cure, the pain will be ongoing and so too most likely will the need for pain relief.
You’ve given such excellent points here that I nodded along to. There’s so much that needs to change, inside the healthcare arena and in society. I don’t like the way the ‘crisis’ further reduces the experience of those with chronic pain because all that’s does is causes stigma and ignorance to increase. It’s like always reporting that serial killers are schizophrenic; it totally overlooks what schizophrenia is, it’s giving a ridiculously dangerous and reductionistic view of the mental illness, and it fuels fear and stigma and judgement. I really, really wish those making the decisions in healthcare and politics were actually those that could relate in some way. At the moment it’s more like healthy people that have never experienced illness or pain voting on reducing medications, men making decisions on women’s IVF, rich politicians deciding on benefits and housing costs. It’s never going to change unless there’s more understanding and compassion from every side of the situation.
Thank you so much for sharing your thoughts & experience here, Holly. You add so much to the issue and it’s with sharing like this that small bits of change can happen! ♥????
Caz. You are seriously, beyond words, AMAZING. I can’t even begin to understand what You live with…what Your days must be like. That You spend so much time helping others and sharing Your journey is a gift beyond measure. And this article is perfect. SOOOO true. There can’t be a one size fits all about this situation. About ANYTHING. I hope they keep prescription painkillers available to You and All who need them. Lord. Wasn’t even aware that was going on. I send my heart, prayers, and Much Love out to You. Thank You for this!!!! ❤️❤️❤️
Aww thank you so much, Katy, your comment is lovely & it means a lot to me! I’m also really glad I’ve raised a little awareness of something you perhaps didn’t really know much about before, so that’s fantastic. I also hope the treatment for those dealing with chronic pain is made available safely and as required. Life is hard enough without the governments and healthcare providers twisting the knife even further. Thank you again for the amazing comment! I hope you have a lovely weekend ???? xx
“It’s all in your head” or “Maybe you could just think about something else? Do you have a hobby?” or my favourite „But you have so many things to be grateful for…” I just cannot. That is so disrespectful and offensive. And I’m pretty sure that I’m not the only one who have heard these phrases countless times. What does that mean, exactly? That a doctor is uneducated, unprofessional and a jerk?
Of course, it’s in my head. I’ve manifested chronic pain because I was extremely bored… I just cannot. These doctors who treat patients this way should be fired. I mean it. Not only they DO NOT help but also they make the patient think that there’s something WRONG with them! Not to mention that THEIR lack of compassion and understanding creates a stigma surrounding mental health…
It’s pathetic, disgusting and incredibly annoying behaviour. I’m sorry Caz for the tone of my words but I feel triggered. I’ve met so many uneducated, unprofessional and unethical medical professionals that I could write a book about it…
Anyways, I am so glad that there are more and more pain clinics with trained pain management specialist. There’s hope. But from my personal experience, I can tell that meditation, breathing exercises, mindfulness music and sun exposures help (a bit) to ease pain both physical and psychological. Of, course it doesn’t solve the problem but helps a bit…
Caz, you’re doing a GREAT JOB! Thank you for another great and thought-provoking post!!! Please stay safe and take care of yourself!!!
I am SO glad I went through the comment bin because for some reason your amazing comment ended up in there. I always check Spam but not the bin, so I don’t know why that happened.
I just wanted to say I hear you and I totally agree with what you’ve said, and you’ve said it perfectly. Don’t apologise for the tone of your words at all. Anger and annoyance is needed because you’re right, these beliefs and these doctors are dangerous. I’ve been made to feel that problems were in my head for years and it did no end of damage. To make patients in pain feel as though there’s nothing wrong or that they’re creating that pain themselves is disastrous to say the least.
Finding ways to better manage pain is all many of us can hope for. Thank you for sharing some of the things that help you. I find warmer weather a little better for me, which is why living in the freezing cold UK doesn’t do me any favours! I need a one way ticket to stay in your neighbourhood, Kate! Thank you again for the awesome comment. Stay safe lovely ♥ xx
This is the rare subject in which I disagree with my President (President Trump). I think the real crisis will be the chronic pain of sufferers like you–and me.
I’m not too sure what’s happening in the US at the moment but I’ve heard some worrying things from people there with chronic pain not being able to obtain the painkillers they need. I agree with your thoughts on the real crisis. It’s as worrying as it is angering, especially when you live with pain yourself, don’t you think? Thanks for sharing you thoughts. xx
Chaplin: “Tramadol! That was one of the many, many medications Dennis was on for a while after his osteosarcoma diagnosis.”
Charlee: “We sure are glad Mama and Dada were able to get that for him and keep him with us for a while longer.”
Lulu: “We hate to think that humans could lose their access to the medications they need in order to help them function!”
I never think of Tramadol for dogs but it’s so useful to help them with their pain, I’m glad Dennis was able to use it to make him a little more comfortable ????
Why don’t some doctors believe in their patients’ pain? I hate that that’s even a question that needs to be asked. I hate that your B12 shots weren’t deemed necessary and you have to pay for them privately. I hate that you’re in so much pain that you need to take pain killers and that there is a stigma around taking them. Anytime I ever take them, I become narcoleptic, so they haven’t really been an option for me. Much love to you.
It’s all a mess, isn’t it? There’s so much I find disheartening and angering about the medical systems in the UK, US and probably elsewhere. Some of it comes down to individual doctors where ignorance is concerned, and much falls within government and medical body spheres, where decisions are made by people that aren’t affected by what they’re discussing. It’s like a bunch of men discussing how to deal with smear tests and IVF treatments. I’m sorry you’re not able to take these painkillers – are there any you can take that don’t have the narcoleptic effect for you? I’m lucky in that I’ve found something I can use, so even though it’s nowhere near enough, it’s better than nothing, and for that I’m grateful. If they take it away, then I won’t be saying that! xx
Thank you for this post, Caz. Yes, there is a difference between taking Opoids for chronic pain or to get zonked. I am prescribed these types of medications and when I’m in seething pain, the meds take the edge off but do not intoxicate me… much. I only use them when I’m at the point of no return with my pain level (even then, I apt to lie down and do everything else possible before taking pills). This is because they give me unwanted side effects. But, sometimes I have no choice. They also help to relax me enough so my crisis will start improving. GREAT article! ????
I’m sorry you have to suffer so much, Tamtam, and I’m sorry you know what I’m talking about. I’m glad there’s something that can take a little edge off when you need it, but it’s not great about the side-effects. Have you tried different types to see if there’s anything that suits you a bit better? One day, they’ll make just one medication that solves a problem without causing 5 new problems at the same time! I’m really glad you liked the post. Thank you lovely. Stay safe & take good care of yourself ♥ xx
Yes, dear Caz; I have tried other meds, but Morphine makes me itch severely and Demerol gives me earthquaking headaches. So, I take a bit of Dilaudid. I used to take Fenatyl, but asked to get off of it because too many people were accidentally overdosing on it. Alcohol doesn’t affect me for some odd reason even though I rarely, if ever, drink a sip. I do like the aroma of rubbing alcohol, though. Yum! But, might be unhealthy. So, I don’t do that often. Do you like the scent of rubbing alcohol?
It is sad – even though people realized about this problem long before, there is still no solution or change in how things go around. Best to be informed and be aware. Thank you for the post Caz
It’s one of those things that’s going on and on, but the heavy handed attempt to ‘resolve’ it is way off the mark. I think as patients we can be more informed & aware as you say, which will go some way to helping ourselves. Thanks for the comment lovely ???? xx
As always, an informative and insightful post Caz. You could have been describing me when you wrote about your personal experience of pain. There’s no way I want to take a fistful of medication 3-4 times a day and I’d stop if I didn’t need them. There’s perhaps a one or two meds that I might not need one afternoon, now and again, and I’ll reduce my dose as necessary. But I wouldn’t be able to move or be pain free without medication.
Like you said the NHS have been delivering different treatment methods for chronic pain
I attended a one-day group session where they ‘talked about pain’, nothing any of the attendees didn’t already know. They had around twenty professionals (O.T.s, physios, pain management) delivering this course and to be honest, I felt it was a waste of time and money. Many of the attendees felt patronised and disbelieved about the intensity and the effects of their pain, and wrote as much in their feedback.
I’m now waiting for CBT from the pain management therapists and I’m hoping this will be a more effective treatment option. However, despite how much I used CBT with patients, and believed in CBT as an effective treatment for mental illnesses and emotional disturbances, I’m not quite sure how it will help with pain. I’ll keep you posted Caz.
From Caz
I went to one of those pain management sessions too; it started with a group thing, everyone together with a guy up front writing on the white board like we’re in school as we shout up what pain is and how it feels. Like you say, there was nothing new and I thought it was pretty patronising, not to mention a waste of money and resources. After that you could choose whether you wanted group sessions or individual therapy, so I went for the latter. That wasn’t anything new either, but it did make me feel a little more believed and like I shouldn’t feel as bad and guilty as I do. Unfortunately once the sessions ended, so too did those revelations. But it did absolutely zip for the pain because, unsurprisingly, it’s not a psychological problem.
We used similar we CBT in the sessions and ACT. I’ve got a psych background too (though not professional) so it’s interesting, but there’s only so much we can do psychologically to deal with pain.
I hope you get those CBT sessions soon. Perhaps if nothing else it will make you feel a little more reassured (not sure that that’s the right word) in how you’re feeling when living with pain. I hope you’re still able to get the painkillers you need though, that’s the part that would worry me. Thanks for sharing your experiences, fellow Caz xx
Gosh, I had no idea about this NICE move (or not)! I’m lucky that my GP remains constant and knows that I fight every day to take the least amount of pain medication that I need, He knows I hate being on them but that I need them just to life my head off the pillow.
I could have written much of your own story that you’ve shared in this blog but I know you have much bigger plans by shouting this from the rooftops about advocacy and knowledge. All so important for everyone who isn’t lucky enough to have an understanding Doctor/Team.
I’ll keep my eye on this story now – thank you!
I think you sharing your story would be fantastic, Laura. Even if we can’t make big changes where they’re needed, sharing with each other helps us feel a little less alone. There’s a petition to stop this NICE move from happening, but I’m not sure whether that’s really going to make any difference. I’ve written to NICE to challenge their guideline changes. I fear decisions are being made by people that just don’t have a clue what life with chronic pain is like; they won’t suffer the fallout from making these decisions, so it doesn’t really bother them. For us, it’s the only option we’ve got left just to be able to move each day. I’m so sorry you know all too well what that’s like, but thank you for sharing this, Laura. I’m also really glad you’ve got a decent GP, that makes a difference too ???? xx
Thank you for such a thorough post. I have friends and family who are struggling with chronic pain and have faced immense pressure to relieve that pain with opioids–it’s rather concerning.
Also, I nominated you for the Outstanding Blogger Award. Congratulations! Let me know if you have any questions. I don’t know if you accept award nominations, but I thought you should know anyway.
I’m really sorry to hear about your friends & family. I hope they can find ways to better manage the pain that works for them, whether they do or don’t want medications. It’s such a difficult issue to navigate. And thank you so much too for the blog award, I saw that earlier and it made me smile! Have a good weekend, Brendan ????
This is such a thorough and informative post Caz, what’s happening to our healthcare system through cuts is atrocious. For those with chronic conditions its just becoming increasingly unfair. It’s such a difficult issue around finding the right medications nowadays. Great post x
I’m really glad you liked the post – sometimes I get carried away with stuff like this and my anger takes over, so I don’t know if I’ve just rambled on for ages making no sense whatsoever! It worries me because these sorts of decisions are so short-sighted and could potentially severely impact people right now and into the future, and that’s a pretty worrying thought on top of everything else already going on with the healthcare system. Thanks for the comment lovely. I hope the week’s treating you kindly so far! xx
I know I’m late in commenting on this post, but it is such an important topic that I had to chime in.
Years ago, doctors would throw painkillers at me, even when I wasn’t requesting them, and often as a first line of attack. I don’t think painkillers should be the first treatment for chronic illness, unless there is severe and obvious pain,
But in more recent years, during the opioid crisis, getting painkillers is nearly impossible. Painkillers were never an option when I started having neuropathy pain last year. I know quite a few people who have severe pain that isn’t being addressed with current treatment, and yet painkillers still are not available. It seems like there should be some middle ground.
I know opioid abuse is a worldwide crisis and something has to be done, but at the same time, refusing medication to people who legitimately need it results in a whole separate string of issues, like illegal drug use and suicide.
I’m sorry you had painkillers pushed on you in the first instance. I don’t agree with that either. Nor do I agree with reducing and pulling them as an option from patients that need them. You’re right, there’s a lack of middle ground. I think that’s from a lack of real understanding of the issues and lack of specialists empathising with their patients.
Sadly the focus seems to be on just the opioid crisis as though the drugs are the problem. A bit like the ‘obesity crisis’ so they focus just on overweight people, ignoring the problems behind overeating and also ignoring eating disorders those that are underweight. A bigger perspective is needed.
I’m really glad you shared this, Lindsay. You’re not late to comment at all. I really appreciate it – you’ve made some excellent points. xx
Sadly, as you say there is a completely disjointed approach to pain relief here in this country. It would be lovely to think that people could get the treatment they need, whether it be the correct drugs or the correct mental health diagnosis. But unfortunately this really isn’t the case. And it does seem to be that GP’s have settled for the path of least resistance, which is to give the easiest thing available to them, and to hope that the problem gets delayed as long as possible.
I cannot blame medics for this, as they have less and less funding. And services have been cut so much over the past few years.
I am sure that they feel like me that this is not why they trained for so long, and found out everything that could be done, only to be thwarted by the system in which they have to work.
You make such excellent points around taking the path of least resistance and the budgetary cuts. What’s sad is that some have been put on painkillers they don’t need or perhaps shouldn’t have had (especially if pain was undiagnosed), while those who’re on painkillers and need them are trying to be pushed off them.
Being so limited by the system must be incredibly frustrating. The question is, with the hazardous approach to pain and the situation the NHS is in, how do things move forward from here? It’s not going to be easy. Thank you very much for sharing your thoughts here, Jo. ????xx
It makes me so angry that people with chronic pain are being screwed over this way. What they should really be doing is implementing training so doctors have the knowledge to make good clinical decisions.
Same here with the anger ???? I agree, more training is needed and so is more compassion and a heck of a lot more understanding at the higher levels. At the moment, decisions are just made by people that do not have the slightest clue what chronic pain is like and they won’t be hurt by the fallout of their actions to screw patients over.
I am 85 years old and beginning to feel my age, but am still in reasonably good health. What worries me is that my wife and two adult daughters (both single) are not in good health and need my help, which of course I give gladly, but with concern for the future because of my age and the complexity of the American health care system. People with serious health problems have enough to worry about without having to fight the system.
You’re right, it’s hard enough to have a chronic health problem, as it also is to be a carer or family member of someone with ill health. The additional stress and strain and worry of the healthcare system we find ourselves in makes a hard situation worse. We can always say our western healthcare is better than many other countries, but that’s not a comfort for those who can’t get the support, testing, treatment and medication they need. I’m sending my very best wishes to your wife and daughters, and to yourself. You’re doing a wonderful thing to be there for them as much as you can, which will always take a toll. Please look after yourself, too. Thank you for sharing this ????
Good Lord. I am so saddened by what You and others are going through. I just can’t even wrap my head around it. I sure hope this petition gets more signatures than even needed and that this go around Y’all get what Y’all need. I’ve said it before but I must say again: YOU’RE AMAZING!!! With all You are going through and what You contend with on a day to day/moment to moment basis and yet You put out this incredibly informative, HELPFUL, wonderful blog. I truly appreciate all You teach us and the information You share. And YES!!! The absolute LAST thing anyone with chronic pain needs is a lot of nonsensical, ABSURD, misinformed judgment about whatever One has to do to just get through the day. It’s nobody’s business. It should not be difficult to access what You require and You are so right; the media doesn’t address the full picture, necessity and helpfulness of opioids to those who truly need them. My hat’s off to You, my heart and prayers are with You and I’m sending You oceans of Love and the biggest hug imaginable!!! ROCK ON, beautiful Caz!!! ????❤️❤️❤️!!!
Katy, you always make me smile. You’re way too kind as I don’t feel like I make much difference but things like this are so important. I really, really do hope we can get enough signatures for this to be discussed in parliament. Whether they care enough to do anything about it is another matter, but we have to try. The media has not helped the matter when writing on the “opioid crisis”. The decisions on how chronic pain patients are treated are made by higher ups that don’t have a clue, they don’t know what it’s like to live with in the slightest and they won’t be affected by the fallout of their decisions so they have no reason to care. Patients with real pain that dramatically affects their lives are paying the price.
Thank you my friend, you are awesome! ???????????? xxxxx
Thank you for sharing this post, Caz. Having a chronic illness and chronic pain is difficult enough to navigate, then there are these added problems on top of it. I really appreciate the light you’re shining on this issue and I hope the petition gets the signatures it needs.
Thanks very muchly, Kymber. I hope we can do enough to make a difference, but sadly the big bods at the top don’t have a clue about what it’s like and they don’t have any reason to care about patients with health conditions and chronic pain. We can still try, we have to. One day maybe somebody will listen before they cause more damage. xx
I’m so tired of the “histerical woman” stigma and thank you for speaking up about it here!
Same here. You’d think we’d be past that by now but the underlying judgement, stigma, assumptions still permeate society and medical realms. x
I can see by all the comments that a lot of people agree with you. This issue is also big in the US. My story: I ran out of my pain killer, my Rheumatologist retired and my new one hadn’t seen me yet so he wouldn’t prescribe. I tried to get through to the first appointment and gave up. Went to my general doctor. My blood pressure was over 180–highly unusual for me but not for those of us in pain. She prescribed immediately, enough to get me through to my new doctor appointment. Why do I have to feel like a criminal just to maintain my life?
Caz, it is such a worrying situation for people like us but it should be a worrying situation for everyone. Anyone could be put into the position of living with chronic pain. People who normally hardly touch a paracetamol could suddenly develop chronic pain from an accident or from an illness and they will need medication.
As you know, I’m a huge advocate for finding ways to cope with pain like mindfulness, breathing, relaxation etc. But my toolbox needs medication too. As well as other meds, I also take tramadol but take them sparingly because they make me feel pretty crap. They don’t work like a miracle and make me pain free but they do bring a certain amount of relief.
The suggestions from NICE are ridiculous. I’m not saying that therapy and relaxation don’t help. They can help us alongside pain medication. Not instead of.
They would be taking away a lifeline for so many people. Would they take away an asthmatic’s inhalers and tell them to learn to breathe differently? Or would they take away a diabetic’s insulin and tell them just to change their diet? Chronic pain is an illness but chronic pain patients are being treated like drug addicts. We don’t take pain medication for fun, to get a high or because we are addicted.
I don’t fear addiction because I use medication responsibly just like you and the majority of other chronic pain patients. I do fear my pain though. NICE’s new guidelines are cruel and dangerous.
This is such a great post Caz speaking about a really important issue. Those stats really are mind blowing – 21-29% of people prescribed opioid medications end up misusing them and 1.7 million people suffering from substance abuse related to prescribed opioid medications and 652,000 from heroin abuse in the same year – I had no idea it was so high. I understand people wanting to protect people from developing addictions but it should never come at the expense of having individuals struggle with heightened pain and having other treatment methods cut too. I’m so sorry you’ve struggled to receive the care that you need from the NHS and have had to go private. Like you, certain treatments not being available on the NHS has meant I’ve had to save to go privately too. Chronic illness and pain is stressful enough without having the added financial strain too. Thanks again for sharing this post and educating others on a really important issue.
I sure hope so. ❤️❤️
It is so sad and frustrating that there are people living in unbearable pain and cannot get relief due to the dangers of addiction to opioids. What is a person to do. It’s particularly bad among healthcare workers who absolutely cannot take pain killers. My neighbor recently blew her brains out because she could not live in pain anymore.
Oh gosh! I am not too kind! What I said is true!!! And it’s all-ways my pleasure!!! And Thank You! Being the Queen of Awesome Yourself, I take being dubbed as awesome by You as a most wonderful event!!! Yay! Cheers and huge hugs, my sweet friend! ????????????! Walking away holding hopes and saying prayers that this gets discussed and dealt with properly once and for All! ❤️
Hi Caz! Told you I’d be by after seeing your post online and I am always true to my word. We don’t have a crisis here in Asia. Honestly what I see happening in Western countries boggles my brain. I cannot wrap my head around patients being denied pain meds that will allow them to do a bit more. Like you, I’m on Tramadol. I don’t take more than I need, but without them, I’d never get through the day or even get out of bed due to morning pain.
I just wrote a post about how we pain patients use language to describe pain and a pain doc felt it was negative and my post might make others suicidal. The post like this one: fact based with some personal experience thrown in. Anyways, I will link this post to my post since I am compiling a list of pain patients and their thoughts on life with pain as a resource list. Your post fits perfectly.
And yup, I was nodding mt head at your description of sitting and crying because you had no strength to walk the rest of the way. Been there so many times.
Biggest hugs to you!
Wow, you voiced so many things that resonate with me. Great post. I have often talked to my wife about the politicization of the opioid crisis and the “solutions” that make no sense except they are easy for politicians to push and take credit for.
I also reluctantly take Tramadol (and an alarming number of Gabapentin and Acetaminophen) daily and see the day rapidly approaching when I will be forced to change to stronger opioids to manage my pain. Even so, I spend most of my days (~21/24 hours) confined to bed because I cannot sit and I’m limited on how long I can stand.
My pain condition was triggered by a repetitive overuse nerve injury (bilateral sciatic neuropathy) sustained doing flood cleanup in my home, but it was not understood and consequently every treatment served to make it worse, and over the course of a few years I ended up essentially bedridden and suffering intractable pain. My disability claim was denied by the insurance company due to a “lack of objective evidence” (i.e. – nothing shows on X-ray or MRI). By God’s grace I figured out how to operate my computer while lying on my side in bed, and managed to keep my job, although many is the day when my productivity is poor and I can barely get to the end.
All of which is to say that I can relate to your experiences on many levels and I commend you for channeling your energies into your website/blog and doing such a fine job with it. As an aside, the book that gave me the most insight into my condition (and pain in general) was “Explain Pain” by Lorimer Moseley (a guy from Australia). It is very well referenced (he is a PhD in physiotherapy) with medical journal articles, but enhanced by his personal experiences, great illustrations, and written in layman’s language. Highly recommend.
I pray that your treatment will not be pulled out from under you (this is also a concern of mine and I think of anyone who has severe pain and is dependent on things outside our control for coping with it), and that you might be enabled to fight on and make a difference in the lives of others.
God bless you,
Craig