I was diagnosed with having a degenerative disease of my lumbar spine back in July 2011. Which has been life changing. When I say I have had all treatments I really have. I have been through and exhausted the pain clinics on two occasions. I have had extensive Physiotherapy, Accupunture, Chiropractor, I have also attended strategy sessions that being the Biopsycosocial model which has helped slightly. I have also had a Specialist review of my levels of medication requested from my Doctor at the time.
My concern is of pain management control. I have been on very high doses of Oramorph, MST Continus, Codeine. My course was eventually agreed by the Pain Management Specialists. On my own fruition I reduced my medication as I was very conscience of the medication I was taking. I worked extremely hard in doing so. Subsequently, I have changed Doctors due to moving which was no problem. I was then sent back to the Pain Management Spelialists for Specialist input and review. My medication was then agreed as a maintenance dose. Unfortunately my Doctor retired leaving me to see a different Doctor who had a difference of opinion with my dose. I will get straight to the point. I suffer with chronic back pain and spasms on a regular basis but it seems like the whole attitude on medication has changed. The concept of pain all seems to be to do with the psychological approach to pain. Its all in the mind! Doctors have come to a consensus that 120 mg of Morphine is the maximum you can be given daily. This is purely academic with no proven scientific proof behind it. Yet you can go to other Doctors and they will perscribe more which seems absurd. I believe in seeing one Doctor so that rapport and trust can be built up to work collaboratively. The old saying "to many cooks spoil the broth" comes to mind. I feel is very true. Recently I have been suffering pain and spasms which has had a further effect on my quality of life I am a 44 old man without the lifestyle to match. If I cannot go to the Doctors and get relief from my pain and spasms which is causing me to loose sleep. Then what is the point in having Doctors. Many people have given me bad advice and said smoke cannabis. One I do not smoke, never have, a second its illegal in the UK. I am past the point of frustration or is this what the Doctors want you to say so they can go down the route of saying your depressed which doesn't help and changes alot. I am unable to change Doctors surgeries as I live in a small community so I am out of the catchment areas for other surgeries. I'm sure I'm not the only one but this has to stop. If they signed the Hippocratic Oath or not they have a legal duty of care towards their clients. I feel that Doctors have unfortunately turned into accountants more these days. I would be grateful to hear other stories similar to mine.
All the best
Darren
Written by
Daz75
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I'm new to the site but have similar issues to you in my lower back and also my neck now.
I'm sorry you are suffering badly and can truly empathise with you.
I also have tried most of the same approaches to pain and spinal fusion which hasn't helped me. In fact my pain is now more widespread and debilitating. I'm 58 and my life too has changed so much that I barely recognise my own self sometimes.
However....I recently completed a Pain Management Programme and it has equipped me with "tools" to help manage my pain. It certainly hasn't got rid of my pain but it has changed my thoughts, ideas and helped me understand more about my chronic pain and what is going on!
Part of the programme covers medications and the pros and cons of them. They don't tell you not to take painkillers but explain about alternative ways to manage your pain. This includes mindfulness, relaxation, trying to get you to set aims and acheivable goals and learning to recognise negative thinking and how your thoughts and emotions can affect you.
They speak about medications and part of that explained that GPs normally see patients in a "flare" when their pain is screaming at them and obviously their aim is to help their patient calm their pain down. However with chronic pain, other approaches can help manage this.
I realise that this approach will not be for everyone and I believe people vary in their success with this programme but I was at the end of my tether before starting it and would have tried anything.
My life is so different from what it was and I still suffer badly from pain but armed with what I call are my PMP tools, my life is definitely fuller and attitude is more positive on the whole. I do still have flares and bad times but I know they will pass eventually.
Good luck and hope you can get some relief from your suffering.
Hi Darren . I agree the dr has a duty of care to you. Also that different dr say “ different things “.
I’m having the same trouble, getting passed from one to another . I hope your pain free soon . The weather doesn’t help . Could I ask , are you still able to hold down a job. I’m currently on the sick .and need advise on weather I should change jobs . Good luck
I am quite happy to speak about medication that I have taken and speak about my experiences with regards to them. I would rather not discuss my personal life as such and I certainly am not in any position to asvise you with regards to changing jobs. I'm sorry I could not be of more help.
Hi I suffer with lumbar degenerative disc disease.i had surgery last year and I was pain free for 5 months, now the pain is back though and I'm been referred back to consultant.Im also back in the painkiller merry go round.
Hello. Must be so hard for you having this pain . Especially after surgery. Could I ask what type of procedure you had done ? And we’re you led to believe surgery would have you pain free ? Then to not work !
Hi Lisa I had a discectomy and facetectomy decompression surgery,my consultant said it might not work and I might need a fusion operation later.i thought it had worked though as i had almost 6 months of no pain.so waiting to see consultant again for another mri scan and go from there.its very frustrating 🙁
I don't know if this will be of any help but my mother has had 2 spinal fusions and is potentially looking at a third. She has a neuro modulator now but still suffers from extreme spasms. Anywhoo my point is for the spasms she takes Valium/ Diazepam. Is this something you have tried or could? I wish you all the best.
I do take Diazepam at the moment and have for a while. They used to be very effective controlling my spasms, well atleast make my spasms manageable. I cannot fathom what is happening lately as I have been suffering recently due to bad spasms. I cannot get a proper nights sleep or rest during the day which makes life and my everyday activities much harder. With regards to your Mum I sincerely wish her the very best for the future. One thing I would be interested in knowing is the dosage and frequency of Valium and Diazepam your Mum has been perscribed for her spasms.
I'm just so sorry that you are in so much pain Darren. Another potentially useless comment but mum uses cold packs to help with the spasms. She used to use heat and then one day I grabbed a bag of frozen veges and that helped. Mum only takes valium when she can feel one coming on and he dose is 5mg I think. So very low. If she is really bad she also takes Endone. She regularly takes panadol osteo or panadeine forte if needed, celebrex and norflex too. I hope that helps a little.
Hopefully this will make you smile but long story short, I am 45 and live with my parents now. I have 2 German Shepherds and one has had so many surgeries and sedations he is well, very dim. The last year or so if Mum had a spasm he barks until I get up to go help her ( Give meds, cold packs etc). Now he actually barks before she has one. It's a very strange behaviour for a thick dog lol! Sorry for off topic but thought you may get a giggle out of it.
Ah I didn't want to 'like' your reply. I'm so very sorry. I can't imagine how debilitating this is for you. Has anyone talked about if a neuro modulator would benefit your conditions?
Hi Daz, sorry to hear your struggling. many doctors hesitate these days to prescribe pain meds and opioids in fear you might become addicted and abuse them; we have a big problem with doctors like that here in the US that refuse to give pain meds or as much as you might actually need for that reason. I dont have a degenerative disk disease but i do have a disorder that weakens tissue and have spasms myself; have you tried pool therapy? it could help with pressure, is easy on joints and getting fluid into your disks and joints. for ‘my’ spasms, I try to avoid or moderate foods/drinks that cause inflammation like sugar (food can affect your pain levels) and learned what makes my spasms worse, maybe that might help you as well. hope you get the help you need.
One thing I cannot understand. Most people who go to the Doctors is mostly pain related. I feel that society is dancing on the edge of being inhumane. I understand that there are things you can do to help your self like nutrition, pool theraphy which I havent tried. But chronic pain is pain and people should be getting adequate pain relief. I'm sorry about your condition and I hope you continue to manage it to the best of your ability.
Have you spoken to other GP practices to see if they accept out of area patients? Patients have a right to choose which means you can register somewhere outside of your catchment so long as the practice you chose isn't oversubscribed. You can might be worth looking into?
Have the pain specialists ever discussed the possibility of deep nerve root injections? They're not plesent but they've helped me a lot. I can get around 6-9 months pain free with them. My pain specialist has suggested a different treatment after my next set of injections whereby they partially burn/cortorise the nerve. If remeber correctly (we discussed it in February) it gives a similar relief to the injections but takes time to heal so the effects last longer.
I know what you mean about the pain killers. I can't get anyone to prescribe oramporph anymore. My pharmacist keeps telling me to ask for it for my breakthrough pain but neither my GP nor pain specialist with write me up. They just keep telling me horror stories other people have had with it and telling me they avoid it all costs. I keep telling them I'm 42 and have a stroppy pre-teen to contend with. Mornings are much easier to deal with if I can actually, physically get my self up out of bed and down the stairs.
Good luck buddy, I hope you get something sorted! Let us know how you get on
Dear Daz i have experienced exactly the same problems as you. Its enough to drive u crazy! I also believe its best 2 see one Dr but my practice only has 1 permanent gp and the rest are locums . The main gp put me on zoromorph and oramorph ten yrs ago and basically left me to it! All other drs ive spoken to have unhelpfully told me when ive expressed concerns about being addicted and feeling sleepy from the morph stop taking it! Which is not easy as its such a slow pace as my body is addicted. Also with reduction comes an increase in pain. I started takin other drugs to counteract the tiredness which i ended up buying illegally and i became addicted to those (i am now 260 days clean of these) my gp was aware of all this but still offered no help and left me to deal with this alone. I have no faith in gp or nhs as i have been in pain with my degenerative disc disease since i was 18 and im 54 now! If it wasn't for the fact i had 2 beautiful children to raise (both grown now) i do not believe i would still be alive today! Sad isnt it im 54 but have lived my prime as an old person what a waste. Now i do anything i can or want to because the pains there regardless so why not! I feel the health services just give up on you and park you in the long term pain bracket and just leave you to it. If you go back and try to get help they label u as depressed due to long term chronic pain! Makes me wanna say " No do you think!!". I would love to know if anyone has found a way to break this miserable soul destroying circle please do tell!
All i can do is sympathise. Technically all pain is in the brain and it's interpretation of the nervous system signals. But that is utterly irrelevant when your brain is lit up day and night.
I've given up with the docs. The only one i trust is impossible to get an appointment with.
My solution has been cycles of combined remedies that together give enough relief to keep me sane (ish).
Cdb oils may help. As can opiods or barbiturates which are frighteningly easy to buy on line. As are testing kits or testing services to establish what you've actually been sent prior to consumption. But always cycle to avoid tolerance and dependency and don't use the relief to cause more damage.
Keep researching and Keep an open mind. My cynicism has been disproven by some surprisingly simple 'alternative' options.
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