Why do people get left in pain and suffer?

[Daz75]

I am 45 and suffer from a Degenerative Disease of my Lumbar Spine. I also have Chronic Sciatica and Lymphoedema. I have read many sad and heartbreaking stories about people living in pain. My Drs have told me there has been a big theoretical change in the way pain is now seen and dealt with. Now before I go into this I am by no means medically qualified in any way so my opinion and theory's are purely my own. Drs use something called a BMI calculator, this was invented in 1860 but going still going nice and strong. But dealing with pain has changed significantly. Now where I do agree with them is there are things you can learn to deal with coping mechanisms. The Biopsycosocial Model, Pain Toolkit, CBT can help only a little. I've have completed two. But being in pain has been dealt with for thousands of years. It is now the thought process that pain killers do not help with pain. Let's just think about that for a minute, pain killers do not help with pain. Maybe someone will be able to deal with that and explain that concept to me because I'm at a loss. Apparently is all in the head, psychological. I have been living with pain and chronic pain for many years. It is debilitating and it seriously effects my day to day activities and certainly my quality of life. I get told to loose a bit of weight, ermmm I would but I'm in pain so how can I? Before my accident I was 15 stone. Be POSITIVE. The power of positivity. Any of you will know that being in chronic pain is upsetting, frustrating, isolating which will absolutely exacerbate and make you feel worse. So Why are we being left in pain. It's there no available medication? Do they cost to much? My intention is not to talk about politics because I don't bend the truth and my birth certificate doesn't give me that birth right to be a Politician. What I don't want to do is dance around the truth of what I want to say. So, I have had some wonderful Drs and Consultants in the past but unfortunately all theory of thoughts have changed. Drs, consultants and Specialists are very well paid people in society that have a duty of care to protect us to the best of their ability but it seems like they do not anymore. Is it that we should go to the local plumber and ask him if he can help (let's hope you guys have a sense of humour) I would like to know this. If you have a pet cat or a dog and it becomes ill and it is in chronic pain you have both a moral and legal obligation to get that animal to a vet for treatment. Or you face a prosecution. That's just how it should be. That should be absolutely the same with human beings, shouldn't it? Drs will also tell you they can't help you with pain because they are scared of litigation, someone dying because of their decisions. In my eyes if you cannot perscribe someone adicate medication without risk of hurting them then you shouldn't be a Dr I'm sorry. As highly trained and looked up individuals in society they should know or refer you to a Consultant that does. I struggle day in day out with pain to the point where I don't have or live a life. I do not smoke or smoke cannabis, I do not drink. (boring bugger really) but no guys seriously why should I be left in pain. For me this is becoming to common in society, people are suffering and nothing is being done, well not enough. A friend once said to me that anger is an energy. No its not its just pure stupidity to give yourself a reason to say to much or go to far and make yourself worse. We need a change it cannot come quick enough in my eyes.

I wish all you lovely people all the best for the future.

Darren

[Emma2017]

Unfortunately they are right in the way that pain is in the head. It’s literally your pain receptors in your brain that tell you there is a pain somewhere. I have suffered with nerve pain for quite some years now. Have had 4 operations on my spine so am not saying this to be callous. It was my surgeon who confirmed this too. However it does not mean your pain is not real, it is often a warning signal that a part in your body needs attention. Without it we won’t be able to tell if something is wrong and we would for example just carry on walking on a broken ankle. Chronic pain is different, I am not quite sure what happens but guess your pain receptors in the brain are not capable to switch off. They can even plant devices in your spine for example to switch of the nerve pain signals if there is nothing else wrong any more. It’s a funny thing this chronic pain. Unfortunately we have to learn to live with it. To stop your medication does seem wrong though. I am on dihydrocodeine and pregabalin and would not like to all of a sudden be without them. I went to a pain guy who regulated them and wrote to the GP who is happy to dish them out on his say so. So maybe you could ask to be referred to a pain clinic?

[Daz75 in reply to Emma2017]

Hi Emma2017

I have been through the pain clinic process twice that is who perscribed me my medication in the first place. I've also been for a Specialist Input and review on my medication this is why I'm so frustrated.

Thank you for caring and I wish you all the very best in the future.

Darren

[Emma2017 in reply to Daz75]

If the pain clinic has prescribed the meds or rather written to your GP to prescribe them then it’s strange why your GP is changing their tune? Maybe have another word with them or ask for another referral to a pain specialist. It’s definitely a very frustrating situation you are in. Unfortunately it’s slightly to do with politics, NHS is not getting the funding that is needed and was promised, so the end user like you and I are suffering plus the cost of medicines have gone up by leaving the EU. Nevertheless if you persevere with your GP you hopefully will get the meds needed.

[Daz75 in reply to Emma2017]

Hi Emma2017.

Thank you for reading between the lines. That is exactly the problem I have been literally though. I have been through hell and high water using trial and error finding out which medications worked for me. When they found the correct medication I was put on a maintenance dose and was perscribed extra MST Continus (Morphine) a slight increase for "breakthrough" pain until my pain was back under my pain control then I would go back to my maintenance dose. This was working out ok until my Dr finished his tenure and retired at the end of 2016. Then ever think changed when I had a new Doctor. You have hit the nail on the head for me. Recently I wrote a post about "why people are being left in pain". I concur with your belief about the politics. NHS is not getting the funding so the end user like you and me are suffering. Since coming out of the EU the cost of medication has increased like you say. But I see this as a monumental problem and to think that I would have to suffer due to a political situation is both unfair and extremely unsafe.

Thank you for you insights and I think it would be beneficial if you were happy enough to communicate with me in the future. In the meantime I wish you all the best.

Darren

[Emma2017 in reply to Daz75]

Thank you. More than happy to communicate Darren. Just throw me a line when you feel ready. In the meantime keep going.

[lovedoncebefore]

Hello DarrenVery well written and expressed I agree totally. I also live with degenerate disc disease lower back have done for years.

I found my hot water bottle was my best friend I also carry a small cushion that I use to support my lower back I use this when I am out. Walking everyday helps even when I am having a bad day I find once I am out walking I feel a bit better. I have fibromyalgia along with seriously bad allergies recently diagnosed with oral lichlen plantus but I try to keep positive it’s not easy when you are alone without close family but staying positive is crucial to getting better. I’ve been on amytriptyline, gabapentin, tramadol and many other prescribed drugs but in the end they just cover up the problem ,treating the underlying problems may not remove the pain completely but it helps. I have lost two stone in the last year I weigh 8stone and I do feel better and hurt less.

I have removed most foods that cause pain and bad reactions mainly decaf coffee now reduced the caffeine as it affects my sleep it’s funny back in my forties I could drink coffee without it causing a problem but now in my fifties I just can’t sleep at night if I have caffeine in the afternoon. I have reduced wheat along with tomatoes but my list goes on I won’t go on about my food allergies but I do notice I have more pain if I eat the wrong food.

I believe pain killers can help manage our pain but we need to be treated as a whole person. Unfortunately here in the UK there doesn’t seem to be much help with that unless you can pay for alternative therapies you are pretty much left to get on with chronic health conditions.

I hope you are having a good day and your pain levels are manageable I just wanted to say thank you for writing and you are not alone.

[Daz75 in reply to lovedoncebefore]

Hi lovedoncebefore

Thank you for telling your story and thank you for understanding.

I wish you all the best in the future

Darren

[brussh]

I hear you Darren. The war on drugs eh? I'm just in that place now where I'm going to ask for proper pain killers. I've had 4 years of chronic pain. Broke back in 2 place and one vertebrae has not fused. Pain is consistent. Chronic pain is frequent. It's not just a back injury its a head injury.

I experience mild withdrawals if I don't take the codeine. Not that it does much to alleviate a bad day, but I think "maybe I'd feel worse if I hadn't had any"

I gotta go on school run will post later

[Canarylady]

Brilliant brilliant brilliant,your my kind of person.

[Kels1974]

I have lumbar degenerative disc disease and found the only thing that takes the edge off the pain for me, is nefopam as it blocks the signal from the brain to the pain.I also take naproxen and amitriptyline.I've been like this over 7 years, had surgery 2019 which hadn't helped.

[Knuckledragger]

Very good explanation of the move away from medication. I've had back pain for many years and have been prescribed many different pain killers. My GP refers me to physiotherapy who then pass me on to pain management. This has gone on for almost thirty five years. The issue I try to get over to the "experts" is they're only looking at and trying to treat the symptoms and not the cause. I have osteoarthritis, degenerative disc disease plus other medical issues. I've had many injections over the years which offer very limited relief, hip replacements which did help. Now after MRI's the disc disease has been shown to problematic. This seem the correct diagnosis as while I'm always aware of the back pain it gets unbearable after standing, walking or working so much so I have to stop and support my self with what ever is around. As I was getting nowhere with the NHS I paid to see a private Consultant Neurosurgeon. He reported to my GP that it's my "pain receptors" and the way I "deal with pain" Basically it's in my head and as I've taken pain killers for so long I should come off them. This I found insulting and dismissive. I'm now waiting to see Pain Management again. It's clear to me at the ripe old age of almost 65 I've had my share of help.