Hello all. Have just re-started morphine -lowest dose - last night as have a very degenerated spine and last week had a fall (which - hopefully - has resulted in some internal bruising and will resolve) but necessarily needed the morphine in order to work. Have had poor reaction to all the pain meds have tried, except presc. co-codamol which doesn’t work when the pain is at its most severe. However, morphine gives me a lovely high..which is great for a party but not too good on computer! Am exploring other alternative remedies such as Serrapeptase, turmeric and CBD...time and patience are required for these.
Has anyone tried morphine for, say, five days and then perhaps a two day break to avoid addiction? Just an idea, as loathe drugs, steroids and orthodox medicine generally but it would be stupid not to acknowledge they have their place and thank heaven for that.
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Oh, Bananas, I get a crazy over-reaction to all medication, usually tummy, initially and then they stop working or become allergic. From experience, only once before, another dose would not cause the same euphoria but be less effective. Also, suspect that some Co-Codamol (which, amazingly can tolerate) might have been lingering in my system from the morning (left it as long as poss to avoid dangerous mix-up) and fatigue didn’t help. Need a variety of stuff to get any sleep....but that’s another post altogether!
The boss is fantastically understanding and very kind. I’m so lucky in that regard. But, I’m the problem ‘cos my nature is to not give up, get out there, gallivant around and work. Just the worst sort of person to be hit by a problem that requires repose, self-comfort and acceptance. I do meditate and “talk” to the pain......but it doesn’t seem to be listening! Grrr.
Your doctor should have given you a change over regime for the swap from co-codamol to morphine, it shouldn't just have been done in one day. You shouldn't experience anything of the effects that morphine can have other than pain reduction, as the dosage should be the right amount to treat the pain, and no more. If this is correct, you also should not get addicted. The best person to ask is, of course, your doctor. Good luck with it all x
No swap here! The Co-codamol does nothing when pain is severe. But this can vary (or has up to now!) and is sufficient on “better” days. So don’t yet want to dose up on morphine whilst the pain is not stable.having said this, could be last week’s fall (not on “bad side TG, so no direct impact) may have made things permanently worse. Is there any information, anywhere, as to how long a trauma may take to heal on the lumbar area? Fully realise there is never one definitive answer and a lot of factors to consider. I believe it is too early to go along the x-ray, MRI route but am very despondent and pessimistic about it. Dread turning into that sort of person. Am I over reacting? need more time and patience? Am quite lost and the morph is impeding practical and sensible thoughts so well-considered decisions are inadvisable just now. Grrrr.
I must have misunderstood. I thought you said you took co-codamol in the morning and left it as long as possible before taking morphine 'to avoid dangerous mix up'. What did you mean by that - put me straight!!
That is so. I take the cocodamol in the morning as soon as the pain hits. And then another one or two later. Or an ibuprofen. Got me more or less till early afternoon, ok.
However. This was the pattern, not satisfactory but tolerable, until last Wednesday when had my fall. The pattern has now changed as the level of pain has deepened considerably. I am hoping it is temporary, but don’t know yet.
Therefore, was obliged to start today with morphine. Not a good decision. Did almost nothing for the pain but sent my mind reeling and fuzzy. Still at that point, in pain and not at all well. And that’s on one 5ml!
You need to be really careful, and shouldn't take codeine and morphine on the same day like that. You are in danger of overdosing on opiates. I strongly advise you to speak to your doctor before making any more changes so that you get things straight in your mind. I'm worried about you!!
i do. And try to apply by not fighting against pure common sense and self-knowledge. Pain has an awful habit of making both these virtues fly out of the window! At the same time, it is important to keep the spirit strong, not from a selfish point of view but for loved ones and others around you. Sometimes one just wants to moan and moan but that is counter-productive to everyone in one’s life. But you are so right - “reasonable” is not a word we should forget.
Thank you, Bananas. Very interesting too. My employers are understanding, but I work my socks off for a charity (unpaid) so maybe that’s something to do with it! X
Thank you again, Bananas. I did a 6 month pain management course previous to my last surgery (2015) and this Prof. tried everything he could - within his remit - till he was obliged to refer me back to a reluctant surgeon.
Recently, same surgeon referred me to his colleague -a professional pain manager - who’s only suggestion is steroid injection! Really don’t want to do that but he said have too complex (from multiple surgeries) and fragile a spine for physio etc. He has suggested a “new” neurotransmitter in 6 months time , but at the same time has reservations as to whether am a “good” candidate. He is a one man band, but well-qualified and recognised. But, to be honest, am really fearful of my body being messed about further. I feel all my courage is (almost) used up.
Absolutely was not aware of this. The so-called 6 month course useless course I undertook involved different forms of steroid - or similar,on a 3 weekly basis. i would imagine you are totally appalled by this. It was extremely expensive too, but I didn’t have to pay.
I will do this as soon as possible with GP and in the hope of a place, though can imagine the long waiting list for such a benefit. No matter!
Thank you so much again, Bananas, for your help and care.
Hi sorry to hear of your problem. I agree with much of what Bananas5 has said although I have been through two pain management courses with my NHS area and they have been once a week for six weeks in both cases. The first one was very good, however the sold the rehab unit for money and the second course was held at a local gym with no thermal pool.
Ive had two fusions in my lower back the first in 1992 and the last about 4 years ago at L4-L5. The last one was very good and was able to do pillates and a certain amount of weight lifting since But pain has started up following a fall.
My experience with pain management teams in UK NHS hospitals is not very good but I am sure there are some good ones out there. My GP has been much better prior to my last surgery I was on Tramadol which suited me very well. Unfortunately this passed and I moved on to co-codamol and then fentanyl patches with oral morph (5ml of 10mg/5ml) to cover any breakthrough pain following my fall. After a 5 months my patches were up to 75 microg/hr and my oral morp had to be upwards of 25ml to have any effect (note at this dosage my GP should have really worked in collaboration with and advice of the pain clinc, but if your in pain you don't complain too much).
That's the trouble with opiates your body adjusts and what used to be an adequate dose just gets bigger. In my experience feeling spaced out drops quick as your body adapts, which is a shame but at least on the lower doses you may feel able to drive and have a normal life. I found I could drink a glass of beer with the patches which is good in social situation but not with oral morphine as half a glass would make me sick.
My GP referred me to the pain clinic initially but the said "sorry can't do anything for you without knowing what is causing the pain" and responded to my GP and have been waiting since last June for a neuro-surgical approach to get to the bottom of it. I fully agreed with his comment but wonder why my GP did not consider this issue in the first place.
Anyway Pain has reduced slightly over the past year (waiting to get a prognosis on the cause of the pain (given I've had two fusions you would have thought my symptoms are typical of L4-L3 prolapse would be obvious without the MRI results I have been waiting for). So I have now titrated down off the patches and am down to 10 to 15ml of oral morph when needed, typically before bed. Probably 5 or six times a week. Plan to try and reduce this further, however my body seems to cope with this quite well without any highs or particularly drowsy under this regime.
My understanding is your GP could offer to put you on the minimal fentanyl patch dose, because the dose is delivered over 3days I found it was a lot better than starting off with oral morph? I was working fine when on the lower dosage patches during a previous episode a pain in my feet. Would this be worth a go? Although there seems to a downer on fentanyl at the moment I think its more a case of when its taken orally or used inappropriately without upping the dose gradually.
Thank you so much for taking the trouble to succinct reply in detail and at length. It seems that we are in very similar positions, almost running parallel - fusions, prolapse etc.) except that Tramadol is an absolute no-no for me as were the lowest dose morphine patches. Am certainly going to check into the Fentanyl. Maybe the doc will resist, maybe not, as am extremely sensitive to most orthodox oral medications. The shortage of GP’s is a huge problem, not only for pain sufferers.....let alone a good one. Having to wait 2 weeks for an appointment is an absolute scandal. Shall try for a telephone appt. which is sometimes on offer. So far “professional” pain management has been a useless and uninspired waste of time.
As to the wonderful Bananas, she must spend 9/10ths of her time helping us. May she never have enough and give up! Absolute tower of strength, experience, knowledge and downright common sense.
Again, many thanks and good luck to you too. Please keep in touch.
It's definitely worth considering a neuromodulator (neurotransmitter). You have a 3-week residential course aimed at understanding chronic pain, which most GPs don't understand. Chronic pain is not treated by opiates, especially increasing opiates. The residential course will help you to deal with reducing your medication, building up strengths, identifying your goals and strategies for reaching them.
Have you tried it? If so, do please let me know you thoughts. I notice the residential course iffers rwo sessions physio daily. That woukd be contra indicated in my case. Thanx.
Why would it be contra Indicated? I have the modulator in place in my spine and it is that which has helped me come off some of the medication. You also get time with the nurse, occupational therapist and psychologist.
Apparently a new/tiny/improved modulator is being launched about now in the UK. Any knowledge of this? Presumably the NHS won’t use it if it is too expensive.
Thank you. Shall be seeing a doc tomorrow and will check on the new device, see if or when it is available and get tests, if possible to see if any good for me. To be honest, my pain today has been so awful that don’t know any more what I wouldn’t consider. Have a high pain threshold, I thought, obviously wrong. There must be a sympathetic doc out there, surely.
Why did you have yours taken out? Was there a problem? X
You don't have tests. The staff at the pain hospital department really know their stuff. The assessment involves taking but no tests. You have a trial one out in to see if you are okay with itv for a week. They then take that out and put in a permanent one. I got an infection so they couldn't put permanent one in straight away - they waited 5 months to make sure no residual infection. If you have severe pain why wait for the new modulator, why not just go ahead with the existing one?
Thats a question ask myself. Its the pain doctor who’s resisting going ahead with the present model. He must tell me how long he thinks will have to wait and then make the decision, but its not up to me, poor old patient can’t insist and get past the docs if they dig their heels in
Did you finish that message, Morphalot? Not looking good for me, bit of a downer all that time, but suppose residential is necessary. Are you aware of anywhere else offering this or are they simply the best?
No I didn't finish it. I was saying you can go home at weekends - in fact they prefer you to. I think London St thomas did it first. I know it's done in Liverpool and was recently started in Oxford. I don't know where you live so which would be best for you. I can only comment on London as that's the only one I've been to x
I live in north west London so it looks like St Thomas if there’s nothing else. Many thanks for info. Am wondering with so many applicants, and there must be, how one unit can deal with it all without years of waiting lists. But maybe there are.
There aren't years of waiting lists and they assess you according to your individual need. They run two courses at the same time and there are between 12 and 15 people in each group. I've made some very good friends from the group.
Thats very reassurung, Morphalot. How did you find the accommodation, never shared a bathroom before except with my husband! And I believe they are shared by three ladies.
My room had its own self contained toilet, washbasin and shower. I had a bed, wardrobe, dressing table, armchair and TV. There are other flats which share bathroom between 4 people, and others where the bedrooms are very comfortable with a walk along a corridor to the bathrooms. They allocate accommodation according to need
Thanks very much indeed. Guess will have to take my chances! I expect you got the Executive Suite, ‘cos you really do/did have such problems. Very sorry for you, Morphalot, I do hope things are now hugely improved.
Hello again. My spine is too fragile and battered for physio, as I have been told...much to my distress. To be honest, have a dread of being mishandled and thereby causing more damage. By research, have read if this as a not infrequent occurrence. Not risking it.
But the neuromodulator is a different matter. Want that very much, but my so-called pain manager is a bit iffy about it and back pedalling.
Also, and I know it sounds ridiculous, no mention was made of such a course, but just get it plonked in, train you in pushing a button and off you go.
Would you be kind enough to tell me of your experiences and your condition pre modulator? Really need info! Many thanks, Morphalot.
I have a degenerative spine and had severe spinal stenosis. I had a decompression in 2011 which didn't fully work so I had a fusion of l4/l5 in 2014. I had my right hip replaced in 2012, and my left hip in 2013. In 2014 the morphine I was taking caused me to have an ischaemic event, after which I have poor balance, poor memory, I see double, my speech is affected, my sight is affected in different ways. I have deranged LFTs, severe urticaria and have started fainting about 6 months ago. I had had steroid injections, hydrotherapy, acupuncture etc. I was going to a pain management clinic at my local hospital who referred me to London to go on the modulator course. I had an assessment by 4 people to see if I was ok to go on the course - it's not a given that you're accepted. Because of just having the fusion I also couldn't have too much exercise. The physios are very good and it's not all about mad exercise sessions.It all went well and I had the modulator inserted in march 2017. It has been excellent and has allowed me to come off a number of pills. Because of my poor memory I have forgotten some of the strategies, and arthritis is spreading through my body, so have been accepted to do the three week course some time this year.
Is there only one hospital in London who holds this course? How can they cope when there are so many candidates. I suppose there are private courses available too at enormous cost.
Well you don't actually know how many candidates there are. If you think that around 30 people are getting on the course every three weeks that is around 520 a year. I didn't have to wait long, only a few months
Bananas, do you think I should still be having worse pain than before from a fall last Wednesday in a heavy coat and not even landing on the lower back left lumbar (ops site) side, but more on right arm and right side. Just seems strange six days after the event. Just can’t figure it out, thought would be much better by now but going to work was just not on today. Please would you let me know what you think if you have a mo. X
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