I suffer from a chronic pain condition called myofascial pain syndrome - nerve damage with trigger points.
I’m on pregablin 100mg twice a day - any more gives me bad side effects
Amitriptyline 75mg at night
Butec 20mcg/hr patches
Paracetamol 8 per day
Then oral oramorph for triggers and really bad days
My question is there any alternative to the oramorph?
I don’t get on with codeine, I also have diazepam which offers relief but obviously this is only to be used on very rare occasions as doctors aren’t keen to prescribe it that often.
I’m off to pain clinic very soon and would love to take some ideas with me that may help me.
Many thanks in advance for any help offered
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Annieja
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Hi there my my friend has this really badly in his back, he finds naproxen 3 times a day along with 1-2 dihydrocodine 3 tines a day and lidocaine patches(these can only be prescribed by a pain doctor) works well and also a deep tissue massage at night before sleeping.
The Physio’s he saw were no help but he went to see a private one and it helped him so much and the sessions were only 40 a time for an hour and gave him great massages to do at home
Thank you we know all this , but the lidocaine is a patch and the dihydrocodine is for when he’s in extreme pain and his doctor is keeping an eye on things x
The drug is no longer protected by patent and unbranded, generic versions of the drug called diazepam - made by other companies - will continue to be available
I find diazepam rubbish tbh it doesnt help my spasms or help me sleep never heard of it being used in a cream though . Think I might have to try it out. How many tablets to how much coconut oil? X
Whatever you do stay away from zomorph or oxicodeine! They have awful side effects and the dose goes up quickly as your body gets used to it. Wish My gp had never started me on it x
Hi there, first let me say I am no Doctor, psychologist , physiotherapist, etc., I am just a patient who has been suffering with Chronicc Pain Syndrome since 1981. I think I have had just about every form of painkillers going. I have had three surgeries on my back and have had fusion with rods and plates and screws. I have been had a drug pump and catheter to the spine implaneed in my abdomen.
So, you may take my writings anyway you wish.
First thing you should be doing is consulting a Pain Specialist and Clinic. You must identify the root cause of your pain. This being done you will then have several routes to choose depending on the diagnoses. Exercise is of Prime importance, however, getting back to drugs. In my case the only one that really seeemed to work was Morphine. This is what I have been on since 2007,. My pain levels have dropped from 8-10/10 to3-6/10. This has meant that I have more freedom of movement. Never free of pain. I was then given hydro-morphine, a much stronger version of morphine but because of that I actually take less morphine and feel much better on it. That all took place while I lived in Canada.
When I returned to England in 2009 and the Hydro-Morphine wasn’t used in the drug pumps in England so I was returned to Morphine Sulfate mixed with Bupivicaine (anaesthetic). Now the Hydr version is acceptable in the drug pump and I will be going back on it.
No side effects, no addiction to Morphine. No worries. Exercise, relaxation techniques, swimming, walking. All will help you live with the pain. Pain you can live with and fight against it.
I don’t know where you live but if you live in the U.K. I would recommend you get your Doctor refer you to The Walton Neurological Centre . I have seen miracles performed there and I am much better for going there as well.
Just remember that everyone’s pain is different. What is good for me may not be good for you so while there is some excellent advice given in these S.uppprt pages, you really need to talk to you doctor and don’t be afraid. Tell hi, and your family everything 'you are going through. Keep a Pain Diary/Joirnal and record all you can about your pain. What you were doing at the time, where does it.hu.rt the most, what helps you manage it. What level out of ten is it. All of this will heLp the specialists make a more informed diagnosis.
Good Luck my dear, hope this help. Please feel free to ask me any questions you like and I will answer you as best I can and quickly
Thank you for your reply. We know the cause of my pain and what can trigger it, I’d recommend anyone keeping a diary as you advise - I got a really good app.
This will be my third visit to pain clinic, the first was private and finally got me a diagnosis, the second was awful so I’m hopeful this third visit will be much better - all different hospitals
Will have a read around the suggestions you’ve made - thank you for all your input, given me lots to think about and research
It sounds like you have things together. Just a couple of other issues you might consider. I have found that Tai-Chi is a very good exercise to get into. The motions really help me to relax. I find it very, very difficult to pace myself. This is a very important phase to get into. Break your jobs down into small pieces and rest between each piece. I tend to go and go until I have done and all at the expense of everything else and consequently suffer more pain. Luckily I can give myself extra shots of morphine to help and for break through pain I use Oxy-morphine,(usually four at a time).
I guess that what I am saying is that you have to have trust in your physician, trust in your judgement of pain and the fact that there will probably not be a cure for your pain, just the ability to manage it.
If the pain hurts when you do something and you don’t like what you do, then don’t do it. If the pain you suffer when doing something you really enjoy then continue to do it and be happy..
I’m exactly the same with pacing, I know it’s something I need to get much better at! I was always known for my boundless energy and ability to do stuff. I find it so frustrating that I can’t now, I am now much more accepting of this but still get frustrated.
Thanks for your reply. I’ve had to reduce from 150mg twice a day in pregablin due to side effects - weight gain and cysts in my hands - had to have one removed so don’t want to increase it any further.
That is brilliant but that is what the BNF and product licence says based on trials. No psychiatrist would prescribe 20mg of a TCA or amitripyline for depression as it just wouldn't work.
Even this cochrane database states doses are usually 25 -125mg for neuropathic pain and fibromyalgia so not sure where you get the fact 10-20mg is enough.
Meds prescribed by a pain consultant originally and now tweaked by my gp who is wonderful in their knowledge on chronic pain.
I’ve tried gabapentin and we really don’t get on - hair loss, scaly skin and more importantly no pain relief.
I’ve not tried oxynorm- thank you will research and discuss with pain clinic later in the week.
As for the amitriptyline we’ve tried a range of strengths from 10 upto 100mg, the pain consultant advised that it seems to work best for me at 75mg, I’m open to discuss at clinic also - always trying to use the lowest dose of everything I take balancing that with quality of life is always fun
Hi obviously I'm no expert and everyone reacts different to medications I have had the whole cocktail over the months for pain relief for chronic nerve pain without any ease and rubbish sleep I'm under pain management for second time different place and am undergoing hydro and physio again alongside it just to stop more muscles near nerve areas seizing and it's low impact I have had numerous injections in back as diagnostic tests am now about to try the burning nerve ends in different places in back to minimise pain so it is bearable all I can really say is talk to pain management go thru symptoms wat u struggle with etc to the time and try and get alternative treatment aswell as medication it works for a while but tbh for nerves it's never a long term fix and highly addictive on many good luck with it all I hope u get the help u need xx
Ive had my injury for 24 yrs,i have had too many injections in the back to remember them ,unfortunately none helped but i was willing to try again,the pain was unbearable.I had the nerves burnt,froze and cut,still no relief,every drug listed i tried.The only relief i got was morphine,then the pain Drs decided to stop all opiates.Im in Perth in Australia,apparently they go on the ststistics from America so im not allowed any morphine tablets at all,these were the only tabletd that worked.Im now on fentanyl patches and its s fight to have this.Frntanyl is known as a strong painkiller and i dont doubt it.The trouble is we are all individuals and should be treated as such.If i was to put my fentanyl patch on my sister ,she would be completely out of it whereas you cant tell with me.Everyones metabolism is different.If they took this into account things would be easier and less painful for everyone.Talk about trial and error Good luck with ur future treatments.
I have been reading the thread of advice and suggestions and have noted that there is helpful advice for you. I have been suffering with differing chronic pain problems over some years. At the moment I take butrans patch, nortriptiline , voltarol suppositories ( I cannot take ibuprofen via stomach), and paracetamol . I have had maxofacial pain in the past. I currently have a different form of facial pain as an ongoing issue due to facial palsy / facial shingles , 8 months now. I don’t think it’s relevant to mention doses I take, it’s more the combination of medical support in various ways which will help , or at least that’s what I’ve gleaned after 3 years of debilitating health problems.
My suggestions for you re maxofacial pain , maybe worth asking gp/ pain management team re carbazamine. I was prescribed it when I got maxofacial pain after surgery in my salivary ducts. The pain was so bad I couldn’t sleep and carbazamine helped me. It’s not necessarily right for everyone, but there may be better options for you to specifically deal with nerve pain than your current. I only took a small amount for 2 years.
I was prescribed amytriptiline by a rheumatologist a few years back. When I followed up with the pain management team at hospital I explained that I felt the pain made me tired all the time. They changed the amiltriptiline for nortriptiline which they said is a more modern drug, basically the same as amiltriptiline, but makes you less tired. I was to use it for pain only to help nerves. I did have more energy after bedding it in.
I would suggest you query your drug list and ask if you are on the best combination . They may give you a better combination than your current ( but I am not qualified to comment) .
Pain management will probably encourage you to find a relaxing form of exercise, yoga was suggested to me. The breathing exercises for relaxation have been helpful. I now have got back to a limited form of my previous exercise regime. I go to the gym/ walk/ swim. It keeps me sane and helps me focus on something positive re my body for a change.
Thanks for your response, the pain I have is myofascial pain, it’s in my abdomen prodeminatly. Sorry to hear about your facial pain, I hope your exercise regime continues to help you
Sorry I got that so wrong, maxofacial compared to myofacsial.....Apart from that error, some of my more generalist comments re pain relief may be relevant ..
It does depend upon what you are receiving amitriptyline for. I have chronic migraine, chronic paraosymal hemacrenia and undiagnosed issues with pain elsewhere at present. I was prescribed the amitriptyline as a "precentative" for migraine and was told I could go up to 150mgs per day. I only reached 50 before I reacted. You should speak to the doc though as pain clinic should be able to assist you if you are unhappy with the drugs you are on at present. Hopefully once you've spoken to them you'll get the right combo for you. I' sorry you'e had to deal with someone on here trying to shove her "advice" on you about the level of amitryptaline! Take careand I wish you well xx
It’s interesting to read others opinions and advice. As for the amitriptyline I’ve been on a variety of doses from 10mg to 100mg. I find that alternate nights if 75mg then 50mg helps me with pain in the night. Thank you for the well wishes, I know there’s no magical cure but just trying to find a pain life balance xx
What a wonderful resource this board is. Medication suggestions , exercise, adjunct therapy , pacing and and advice on just how hard pacing is, even for veterans of pacing through pain. Thanks for posting & stimulating these suggestions. It has helped reading these, I am always trying to 'tweak ' things too and sometimes just feel overwhealmed with having a 'plan'.
Good luck with your 3rd appointment & finding quality of life. Are you able to find someone consistant to help as a specialist or is this consistant medical person the GP? You seem to have a good attitude to survive and get the help you need to stop pain from being the main thing and dominating your life. I find this is sometimes half the battle, esp when navigating and meeting new doctors.
My suggestion in relation to medication would just be to trust yourself (and closest long term med professional) in the trailing and finding the right medications, levels and combination for you. I read that somewhere many years ago when I was trying to find out the 'best combination'. I have since realised there isn't one thats for everyone.
I also find getting time with pharmacists helpful , they sometimes have knowledge or suggestions that can augment the specialists & GPs, particularly when swapping out medications which may need changing. Wishing you low pain day
PS I am unsure if the type of pain you are dealing with is nerve pain and/ or inflammatory. I have a nerve pain componant & have found the addition of high dose bromelian (natural anti inflammatory and digestive enzyme), Krill oil and low sugar diet help me with nerve pain and inflammation which can go together. I am trialing a substance called Boswelia (frankincense?). I do speak with my GP about all of these supplements. I use these as alternatives to using NSAIDs continiously and do notice a difference when I run out of Bromelain. Previously I have found baclofen (anti spasmodic med) of some help with nerve pain and spasm. This was non drowsy for me.
Wow ! thank you for your information. My source of pain is nerves / muscle pain from the palsy and the fallout from shingles, which is the opinion of the facial physio I have been seeing.
In terms of regular medical support I now have a good mixture. It has however taken the best part of 3 years to get to this stage . I have an excellent neurologist via whom I have seen neurologists for my face and also other nerve problems linked to sjorgens . My gp has provided a regular local support. He is good on referrals ( after some health dramas over the past few years, he takes me seriously now). If I have a problem with drugs, I go to either my local pharmacist, who reviews my meds and advises alternatives etc where problems. He is good on how to space out meds. You are right, the pharmacists are a useful source of expertise. I am also under 3 different eye clinics at Moorfields for monitoring / treatment.
I am going to try the recommended Bromelian, as anything to help nerve pain would be good. I take cod liver oil, is will that work as well as krill oil do you think? Baclofen sounds like an idea too.
Today I found out that my palsy recovery is causing problems with nerve realignment and I have a number of exercises to try and correct these problems, as of today. I suspect it will be a case of no pain no gain, so your ideas are very welcome.
You could try duloxatine it's very good but addictive, for breakthrough pain you could try Oxynorm.
I personally am on oxycontine 40mg twice a day which is a slow release painkiller, oxynorm giving quick release 99%uptake man made opioid (methadone ) pain relief.
If your pain is ongoing perhaps oxycodone pain relief is worth a try?
How did your appointment go? Yes I think cod liver oil is the same kind of thing as krill oil , but I couldn't stomach that one cod liver. It sounds like you really have your medical support team of people sorted out. No one really tells you when you come down with a chronic / pain/ illness how this can take a while to get the right people who listen and how important it is.
Yes I have found the baclofen quite helpful in past taken continiouspy- esp for day time spasms but it can be hard on the stomach at first. It's no wonder drug for pain but It's something I have found I can take a very small amount from time to time, which will relieve bad spasm / spasticity feelings enough to get the body part - in my case leg moving again. It is a medication that is supposed to be taken continuously but I now use it differently after finding what works and speaking with doc. Bromelian I find better than always using NSAIDS myself. Thanks for sharing your information too, its always good to hear other people's journey's. Take care
Sorry for the delay in my update, well the appointment was very different than what I was expecting. I was there for 2 hours and saw two different specialised teams. First being physio for the mind, second being an OT.
Both sessions were very worthwhile, I also went back Friday just gone for another appointment. The difference in comparison to previous pain clinic is immense, almost chalk and cheese.
I feel more informed about my chronic pain, as experts tailored their discussions with me.
It’s not going to fix me I’m fully aware of that, but it is going to help me be the best me possible with my chronic pain.
Again a huge thanks for all your replies I really appreciate it x
I would ask that this thread remains friendly as it has been so far throughout. People are trying to help and for that I am grateful. Please don’t know turn my thread into some ‘I’m better than you’ that was never the intention. Please leave your disagreements for elsewhere. Thank you
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never heard of it being used in a cream though . Think I might have to try it out. How many tablets to how much coconut oil? X
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