I am 45 I got diagnosed with a degenerative disease of my lumbar spine in July 2011. I also have lymphoedema. To cut a long story short I have been through hell and high water to get put on a medication plan to help with my conditions. I am still taking my medication but I am in chronic pain. The problems started with me when my old Dr tenure was up and he retired. My new Dr has always been kept in the loop as I used to see her when my primary was off. Since he retired at the end of 2016 I have suffered more and more with pain. At first I was sent a letter to ask me to reduce my medication as they believed I was taking to much. To be seen to be listening and being collaborative I agreed to reduce my medication by 120mg daily As time has gone on I developed bites on my leg that developed into an awful infection I had 10-12 Drs appointments with as many antibiotics and creams. I went to A&E on 2 occasions. I eventually had to spend 8 days in Hospital. I then went for further tests and I was told after 5-6 previous diagnosis I had lymphoedema which is absolutely excruciating at times. Coming to my back I have been seen by Orthopaedic Specialist's, Physiotherapist Specialist's, Pain Management Specialist's who diagnosed me with degenerative disc disease. I was given a pain management plan which was followed by 2 Drs . My Dr before he retired wrote to me and requested I attend a Specialist Input and review due to the amounts of medication I was taking . It was looked and reviewed and my perscription carried on. Since I have reduced my medication by 120mg MST Continus (Morphine) I have suffered ever since. I am a 45 year old Male that certainly doesn't have the quality of life of someone my age. in fact my quality of life and day to day activities are poor. I have had no sexual relationships or even female contact which is humiliating to say.
I contact my Dr and explain that I am in pain and need help her response is that it is now theory that being on a high dose of pain medication or taking more pain medication isn't the correct working practice. I have literally got to the end of my tetherand I am getting upset which only stresses me out also exacerbates my conditions. It's either that or I will get angry. I don't know if she is doing it to make me angry I am not sure. If any one can help and advise me on my situation I would be much obliged.
Many thanks
Darren
Written by
Daz75
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I can’t give you any advice but can give you information. Gp’s are under a lot of pressure to reduce pain medications to patients. As you know Gp’s are being advised/informed that strong pain medications after long periods of time are ineffective and are no longer helping. I am aware that this may not be answer you are looking for but Gp seems to be acting under advice.I think in your situation I would be going back to gp and asking for referrals (again) to pain clinic OR somewhere that non painkiller alternatives can be explored.
I do know that people who take lots of painkillers for severe headaches find after a time those painkillers cause the headaches themselves or rebound pain.
You are only young and I can understand the reluctance of doctors continuing to prescribe high doses of pain medication taken all the time. It IS known that after a time pain medication stops being effective and stronger and stronger doses are required. Someone of your age would easily be on highest dose of painkillers that no longer is effective SO is advisable to find alternatives. If only so you take painkillers for breakthrough pain not continuous pain killers.
Let me tell you this wherever they are getting their advice from I would question that. As a doctor you have a duty to look after your patients. If you treated a pet dog the way I'm being treated you'd be prosecuted. You should never leave an animal or person in chronic pain.
I am only passing information on to you. No point in comparing your treatment to that of a pet. Pets can and do suffer extreme pain that can’t be treated. If that’s the case then pet is euthanised. So no comparison to humans.The information I have given is information I have read about predominantly on this site. Seems little point in being angry - as you say anger can make pain worse. Seek alternative options for yourself. Like you I am on this site due to chronic pain. I don’t take pain meds every day if possible. I find alternatives such as exercise in swimming pools and pain pens help significantly. Look up on Amazon pain pens. I was sceptical at the time but for me these help. A friend who due to high levels of pain meds become intolerant recommended pain pens to me. Is a bit like acupuncture/tens machines. This friend became intolerant to pain medication and now is unable to take any pain meds whatsoever. As said there are reasons out there to try to keep pain meds to the minimum.
Let me tell you their is a absolute comparison between dogs (animals) and people. That's the reason why Doctors can only treat people but Vets can treat animals and people also, just passing that information on. I have had Accupunture and used a Tens machine only to no avail. You shouldn't be trying things off the Internet for pain this just opens the gate for things to be sold to people to treat pain when they are not up to BS Regulations and meet Health and Safety regulations. And you are correct emotions can effect pain levels I have been on the Biopsycosocial model used for pain, have you? You shouldn't read and believe everything you see. Leave it up the Professionals to treat us as they are very well paid to do in society. I am someone that used to train 5-6 nights a week in the gym so I fully understand both the psychological and physical benefits unfortunately I am in position where I cannot exercise at all due to chronic pain. So it's obvious that you are no advocate for treating people that are in chronic pain? What a humanitarian you are?
I've heard lots about CBD oil, my understanding is the THC side of it is the bit that helps. I am a non smoker, I have never smoked a cigarette in my life and I would never smoke Cannabis due to firstly I don't smoke I hate it and secondly its illegal. But the answer to your question is no I've never tried it.
No, try the CBD oil it does seem to work and Australian dream cream also seems to work ( for me) Im riddled with psoriatic arthritis and I walk around feeling like every bone in my body is broken … sucks.
Have to agree with you there Shazza. I am going to look into it as well. Trouble is, I'm on Heart Medication also, including Warfarin, so my options are very limited!! My Doctor will only give me Fenbid Gel and Paracetamol which do not touch it ie: Chronic Sciatica. Certainly think it's worth a try though. If it works, why not?? I'll try anything at the moment!!
Yes DDD. Bi lateral sciatica, spinal stenosis and fibromyalgia , I hope to see consultant soon about a fusion or cage! I’m never out of pain but as soon as I stand up it’s a pain fest!! 😟 I’ll try anything too .. when cannabis was re classified 2003/4?? I used a spliff at night to help me sleep it worked ! But I also had oral cancer pre cells so stopped smoking anyway .. good luck let me know how u get on
Well I'm sorry to hear that. I really am. Thing is, I haven't long recovered from OHS and cannot possibly bear the thought of having anything else done. I'm sure you know what I mean lol. It's hard going, isn't it? Something all the time!! I'm going to go Shopping tomorrow and ask in Holland and Barrett or somewhere. Will definitely let you know. Look after yourself too!!
Right well in this country you certainly don’t get vets treating humans.You are clearly quite combative and I am not going to get into arguing with you. However offensively you attack me.
I (obviously wrongly) assumed you had posted for help, advice and suggestions. That is what I have tried to give you.
If you verbally attack your doctors this way when they are trying to help I am not surprised you are struggling to get support.
Please don’t respond to me anymore because I won’t respond again.
You falsely accuse me of being combative but you don't want to argue?? How provocative. You can also debate subjects aswell. I can assure you I have the upmost respect for Doctors and all Medical Professionals, also the Patient/Doctor relationship. Secondly, no you are absolutely correct I come on here for help and advice but not to purchase stuff I have no idea about from the Internet. I gather you are not medically qualified? And you point again on being combative it certainly wasn't meant to cause you no offence I was just stating facts.
But rest assured my morals, values and principles are all we have and you are absolutely correct I will fight for those with vigour because after all that's all we have as a being to navigate through life. I'll use the example of; protecting our health, children.
Just remember if you have any pets and say one of them is buckled up in pain . Ah don't worry just get that pain pen on him/her and carry on like nothings happened.
Please do see the funny side of it because believe it or not laughter is very good for the soul.
Wow you have some unresolved anger there fellow, maybe that was why you started weight training all those years ago? The aggression you need to do weights certainly helped me when I was a lot younger. Have learnt as the years have passed and my strength and fitness have waned to take life a bit more chilled. Anger only hurts yourself and you will find yourself more isolated as the years go by, trust me that is not what you want right now.
We all need other people and it pays to be kind even to absolute strangers. As far as I can see everyone is here on this Forum for support, help, guidance and advice. No one wants to do you down Daz. All the best mate.
That you for your psychological insights into the situation. I can be sure that I am far from being angry. But your are right exercise does help with anger issues.
The transition of emotions for me at the moment I would say I'm at the frustration stage which is along way from anger It could turn a apathy. I've been on the relevant courses to learn about the brain and emotions but I am truly sorry for having a personality and a sense of humour. Oh and thank you for the patronising at the end. Thanks for support, help and guidance sweetheart.
If you think that I have been patronising I suggest you take a good long look at your self in the mirror first. All any of us here are doing is trying to help you but you just can not see that can you? Like Bevvy I shall just forget about you now.
I’m afraid I took your thread at Bevvy quite aggressive when she is only trying to help as sometimes in these places you may find something that helps. Also dismissing people’s advice with not very appreciative demeanour .. if you re read things it may be clear to you … not looking for angst just trying to help fellow sufferers 🙂
I'm sorry if you thought I was being quite aggressive I can assure you I wasn't. What I am is in alot of pain with it seems like not help, I struggle to sleep and with day to day activities. It's very easy to get frustrated with both myself and other people. What I see and read is alot of sad stories and people in a world of pain. It hurts to read most stories. I just wish there was more help for people. Yet again I really never meant to disrespect anyone.
Well done Daz75 ignore them it's woke gone mad doctors are being asked to reduce pain Meds for unexplained pain not chronic pain eg arthritis and that was from the horse's mouth 🐴😂
I also have degenerative disc disease as well as multiple compression fractures in spine, scoliosis due to bone loss, on dialysis. I take 3 Norco (10/325) daily and pain patch every 3 days. Physical therapy should help. Blessings
I'm sorry your hear you going through some difficult times. The answer to your question is yes I have had extensive physical therapy it was an integral part of my treatment. I have my exercises printed on paper My problem is now I'm in to much pain to even do my physio. That's my problem.
Darren have you considered medical cannabis? This clinic is licensed and able to prescribe and I know chronic pain is one of the conditions they treat. They have an access scheme and also a charitable programme which pays for treatment for one year (you have to apply, I don't know if they're taking applications at the moment but I previously found information about it on their Twitter feed). sapphireclinics.com/?gclid=...
It's not illegal if prescribed by a doctor. Most NHS doctors are reluctant to prescribe because of a lack of clinical trials evidence. However, it's available at private clinics and I believe you get to choose the method of administration (flower, vaping or oral ingestion via oils). I hope that information is helpful to you.
You're welcome and please let us know how you get on. For what it's worth I agree with you about how the medical profession is treating patients with chronic pain. I believe it's a reaction to the opioid epidemic, but an overcorrection which has the potential to harm some chronic pain sufferers. As you say, you had your medication reduced and now you are in more pain. I'm not surprised you're angry. Best wishes.
Hi DazI was on morphine for compression of the spine and other conditions. I was on the slow release tablets in the morning and at night and the liquid oramorph for breakthrough during the day. They changed the slow release tabs to oxycodone and it helped but gave me the same breakthrough oramorph. I was then in a hospice for nine days and what a difference. Firstly they listened to me and asked how my body was.
They then said they were going to up my longteck ( oxycodone slow release) and were going to do away with the morphine breakthrough and put me on short tech ( liquid oxycodone ) so it would be all the same meds. Well they worked on the dosage to get it right and I must say it was the best thing done for me. The breakthrough works in about five minutes and I am so happy with their approach ie listening to me. They said they don’t have cures for some conditions but no one should be in pain in this day and age. I would change doctor or practice, no amount of talking etc will take away the pain from a physical condition like you have you need a quality of life and not just sitting in pain 24/7. Good luck and hope you get the relief you need.
I would love to know the strengths you were given. I had exactly the same morphine as you - slow release and fast in-between. These didn't work so I am now on shortec and longtec. These aren't working either. What strengths should I request?
HiThey started out from about 2ml and worked their way up until it took the edge off the pain as that is what I asked for. Everyone is different and I was getting 13 ml at the end. I have since been dropped to 9 ml because of my lungs. But it is still working even with the lower dose.
Hi Daz75, I am truly so very sorry to hear this as the same thing as more or less has happened to me, and all because some locum G.P decided to rearrage the time and dosage which is almost the same, but where as I had a 300ml bottle of liquid Morphine the rotter exchanged it for a 100ml bottle. This is not working for me and am having to order more of the liquid OraMorph every second week, a 300ml bottle would last with all the other tablets for around a month. I was quite happy as I was until this G.P had a look at my records, he is was not even my G.P,
I have been through almost the same as you so I can understand how you are feeling, and I can't repeat it on here, but just wanted you to know you are not alone in this.
I am around if you need to talk further about this, there have already been so many replies to your problem so I guess you are now sorted out,
Take care and try to make them see how it is affecting your life. xx
I begged for a new script for morphine as a last resort … they won’t let me have it … so then when I am at whits end the ambulance are called costing more money than necessary to the NHS … such a shame .. chronic pain is not a joke .. and I hope WE ALL. Get resolution soon 😔
Bless you Shazza1968, these G.P's know nothing, I hope that things are as well as can be expected after what happened to you. It is certainly no laughing matter and the G.P's or whoever is in control Reads this so each and every one of them can see what happens in our lives as it is not a laughing matter. It needs sorting. xxxxxxxxx🙏
Hello, I’m so so sorry to hear that you’re in a lot of pain, and I can really sympathise with you. Unfortunately, this is happening across the board, my son who is 31, developed severe neuropathy in his feet due to being in a coma for over 2 months. He was put on morphine in the hospital, at 180mg twice a day, now, with all these so called “experts “ saying that morphine doesn’t work for pain, it should be CBT, he has had it all took off him, which means he can no longer walk like he used to, because of the pain in his feet. It’s wrong, totally wrong, I don’t know who these so called experts asked about it, or how they would know strong painkillers don’t work, unless they have severe pain as well, and they can then say, it doesn’t work, but even then, everyone is an individual, and it’s not a one size fits all case. I really wish I had an answer or solution for you, but sadly I don’t, and my heart is breaking for my son and everyone else, who has been took off their lifelines, and I know I’m next on their hit list. Take care and stay safe, I wish you all the best.
I am so sorry to hear about your Son. I really do hope 🙏 that he gets proper care and treatment which he is entitled to under the NHS constitution. No-one should be left in pain these days they really shouldn't. One thing I have noticed is that you didn't mention him being perscribed any neuropathic medication like , Gabapentin, Pregabalin, Amitripyline and those kind of meds. I am no kind of an expert myself but due to my Sciatica I take Gabapentin and Amitripyline. I really do appreciate your comments with regards to my situation and I wish your Son all the very best in the future.
Hello Darren, thank you for taking the time to reply to me. My son has tried all of those things, with no success. He is on Dulextine and Solophodol, sorry can’t spell it. And, they now want him off that as well. It’s soul destroying for him, it really has effected his mental health, but the drs are just not interested, it’s a case of pain meds bad, CBT good!! Which a lot of people know better. I know before everyone gets on to me about this, but I try to share my Severdol with him, but the drs are on my back because they think I’m using too many, but, the thing is that, it states to take 1 or 2 every 4 hours, I give my son 1, and I try to only take 1 myself, so I’m actually taking a lot less than they advise. So can’t win. But, if it’s any use of info for you, I used to take gabapentin, at almost the maximum a day, but one dr told me that as I had no pain I shouldn’t be taking them, which is completely wrong, he’s not seen me screaming with pain. But, I actually stopped it myself as I didn’t like the side effects it did stop working. Amitripyline, is helping me, but for sleep (occasionally) but pain, no I don’t think it really helps. The drs are saying it’s because I have “Too Many” different pains, whatever that means. Sorry for the long reply. I sincerely wish you all the best and hope you find some help soon.
I sometimes think the doctors have no clue when it comes to pain. Have you tried functional medicine. ? I so sympathize with you and hope you fe l better.
Cognitive Behavioural Therapy or the Biopsycosocial Model seem to be the choice of the psychology of pain. The difference is I wonder how effective it would be on the people that say this has all the answers if they were the ones suffering with chronic pain day in, day out.
Dearest Jinnty89, I too am so so sorry about your son and what the so called pain drs have said, they have absolutely no idea of the pain that we have to suffer, maybe and I do not not mean to wish this type of pain on anyone, but one day these drs will have cause to take Morphine and all the rest of what we have to take only then they will hopefully understand what agony we have. Doing every day things is a complete joke as every little move made and it lets you know it's there.
Can they not see how different your poor son is in without these, if not they must be blinded by science. There is no way he should be left in pain like this, the same with yourself as I know from going to pain management clinic that every time something worries or we get worked up about our pain increases, so surely to take away his medication it is what I would call extremely cruel, and I am so very sorry for both of you as it must be living hell not having something to kill pain it is the worse thing in anyone's life, and to see and hear of your son going through this my heart sinks as it should not be allowed to let people suffer this way.
I am on 30 odd tabs a day, which Gabapentin 2,800 whatsit's daily 4 morning and 4 at night along with Baclofen, MST, Clonazepam, Diazepam which I only take for back spasms, liquid morphine to top up, lamprazole stop the sickness and Venlafaxine for depression, and levythroxine (I can't spell either) for under active thyroid, but it's my back that is main problem as even facet joint injections never worked, have also had hot & cold therapy, acupunture, physio and none of these worked for me, so after visiting the pain doctor he started me off on Baclofen have progressed to Morphine now, and in between all this have become so that I can no longer stand up straight as the pain is too much for me, as for walking far forget it, I shop online as no longer able to go far without the help of crutches and of course my Morphine which some locum G.P decided to lower, I was on a 300ml bottle reduced down to 100ml and this is supposed to last a month, well my husband and official carer has put a prescription in
every second week as I can not manage the pain on what this locum has done to me.
So sorry to go on but think we are all in the same "boat" regarding our medication and it is pure hell so I think and hope I know where you are coming from.
Please try to be brave for your son as he needs his mum to be there for him and I know you are going to be despite your pain.
I’m so so sorry to hear that you’re in such pain, my heart goes out to you. Like you, I wouldn’t wish this on my worst enemy, but like you, sometimes I wish they had all this “pain “ and I use that word lightly, as it’s beyond that, but, for them to have it even for a hour, would maybe make them change their minds quickly. Like you, I take a lot of medication, my husband swears he can hear me rattle with them all. But, my son is my priority, and my heart is totally breaking for him, but I don’t know what else to do. I know someone has got a petition on the go, for the fact it’s a breach of our human rights to be free of pain, the right to proper treatment, but, I don’t think it will change anything. I’ve offered to try and send a letter to our drs, to try to get them to change their mind based on this, but I’ve been told, it won’t do any good, so instead I have to watch, my son give up on life. Take care and stay safe, and I hope that things work out for you. X
Do you know about the Pain Toolkit? It was developed by someone who had chronic pain after a motorbike accident. Have a look at all the free resources on the website. Pete is a great guy. paintoolkit.org/about
I'm very much aware of the Pain Toolkit. As part of a Specialist Input and Review on my medication I attended the Biopsycosocial Model course which seems to be the latest approach to help you cope with chronic pain. Thank you for your response. I wish you all the best in the future
Regards
Darren
Hi Darren, I sympathize with you I'm the same I have been on a high dose of medication to try and ease my pain for cervical myelopathy c3c4c5 fused if I didn't take the medication I wouldn't get through , I have been pain clinics and tried all different medication but to no avail. I know taking medication can not be good long term but what choices do we have . Clive.
I'm am in very much the same situation as you I have been through hell and high water to get on my medication I am on. I didn't ask for it, I was given and advised to take it. The decision to give me this medication wasn't taken lightly that you can be sure. After being on it for a for a while and when my Dr retired and I saw another Dr I was asked to reduce it instantly. I more unless feel like I'm being treated as a drug addict . When it comes down to choices you carry on persevering and trying to ensure your not in to much pain and fight for them to uphold their duty of care towards you or do what 90% of people have told me to do on here, which is smoke cannabis. Thing is Clive I have never smoked even a cigarette let alone trying that stuff. All I will say is all the literature I read regarding it is very positive so common sense should prevail and the government should make it accessible through Doctors like they have in America and recently Canada.
I feel sorry that your having so many issues with pain it “sucks” but I can tell you that pain medication use long term doesn’t come without its problems either my sister-in-law who has your exact back issue has been on a variety of pain meds for at least 20 years now and she is currently not doing well at all she still has pain and lymphedema (just had 7 liters of fluid drained from legs) and her liver is failing from all the pain medications and because she has been on them so long she can’t seem to stop she suffers with withdrawal and further increased pains…. She is only 53 yrs old and she was given maybe 5 years this is how bad her liver has become and didn’t even start being and issue until this time last year.
Im hopeful that one day they will create a non drug solution to chronic pain.
Narcotics ( opium derivatives such as morphine or synthetic opioids should not affect the liver. However the acetaminophen they are often combined with can if used chronically or in high doses will.
HALLELUJAH!!! Someone who knows their stuff. I have never taken Paracetamol for the last 30 years based on that principle that it it is far to toxic to the liver.
I’m surprised they have you on morphine I am on lots of meds codeine based antispasmodic, and I was on anti inflammatory but unfortunately I have erosion of the oesophagus so they stopped them dead…. Omg 😱 I thought I would die with the pain I use oramorph but only when an ambulance is called or about to be called… I have DDD., spinal stenosis etc fibromyalgia and history of migraines.. ask for a medication review.. I have been on these meds since 2001. And in 2015 moved away from my gp of 30 years, who new me very well to a place where I am just a nhs number unfortunately… I am now 53 and female.
Hi the gp mentioned patches but until they start doing face to face again I seem to just be getting repeated prescriptions .. hopefully when covid19 dies down we can get some normality…
You said you surprised I was perscribed medication. When I was first had my accident I was perscribed 2x200mg of Morphine MST Continus) a day plus 12.5 ml of Oramorph every 4 hour plus codeine and other medication. I was me that went to my Doctors and on my own fruition I reduced the Morphine that was five years ago. Now it seems you can't get any Morphine for you pain.
Yes I had morphine as last resort I only have it when I feel it’s time for hospital intervention and then morphine …is taken . When I asked for more morphine I was was told no … my anti inflammatory was stopped due to oesophagus erosion 🥺 and tramadol temp which helped and now they say no more cos it’s addictive .. so I’m left in extortionate pain …
There are many reasons why your doctor may reduce your medications, one of them could be to prevent dependency. It is worth it to try some other methods, for example, magnetic therapy (biomag.co.uk/about-magnetot..., though they may not as effective in the short term as medications, they do not cause a dependency and have little to no negative side effects.
As far as reducing your pain meds. Drs. Are being pressured to reduce or not give pain meds. Since the opioid epidemic with so many deaths some Drs. seem scared to prescribe or raise pain meds. Opioids are a problem but sometimes a last resort for pain treatment. I’ve taken pain meds for many years and have come off them. I’m very fortunate not to ever have been addicted and had no problem stopping the pain meds. I’ve taken morphine,oxycodone, OxyContin, methodone etc. None seemed to really help, so I would come off them by just quitting them them. Some say to taper off but I just stopped. I know one guy that has chronic pain and his dr. Put him on fentanyl he tried to come off it and had a terrible time. Just take it as directed and follow instructions on stopping, don’t do as I did. I took a real chance quitting cold turkey. Hope you can find something that works for you just don’t give up. Talk to your Dr. in person and ask what’s going on tell her you need to know. Good luck and just hang in there. I know easier said than done. But keep trying.
Hi Daz75, pain management is I difficult thing and Drs differ in their treatment. My pain specialist told me to get a social life and it would take my mind off the pain. At the time I was a Manager of an Art Gallery, I ran a Family history group, and also helped with family history at our library, and run an allotment association so I’m not sure where he thought I was going to fit in more of a social life. I now no longer go to the pain clinic. I too have degenerative discs and a bone spur growing from one that keeps sticking into my spinal nerve, they won’t operate as it’s an 80% chance I would end up with paralysis’s. Have you tried a TENS machine for your back, I find it helps, I also find and ice pack works better than heat. I am on Tramadol 4 times a day, and have refused Morphine for the time being as i need something to fall back in as things deteriorate.
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Prescribed fentanyl patches
Dr making me want to yank my hair out! Told me hypermobility doesn't cause pain and won't help me!!!
