Hi, I have been taking codeine for my foot pain for nearly 4 years, my accident was 4 years ago this Monday, I scolded my foot and had to have my toes amputated last February 2023. The doctors want me to stop taking codeine but I am waiting to see the pain clinic, I have been on their waiting list since last August, it shouldn't be much longer but who knows? I don't know what else I can take which will settle the or control the pain in my stump, I take gabapentin, 1500 mg a day, 600 mg in the morning, 300 in the afternoon and 600 at night, what else can they give me which will calm the pain in my foot? I think they expect me to use antidepressants or mindfulness, that'll be ok but the pain will always be there. Its like a grating pain around the end of the bone and soreness where the wound is still healing, it can be awful, plus I am getting spasms in the nerve endings, if the nurses put anything tight around the top of my foot where the burn was, the nerve pain is much worse and nothing stops it, my carer put some tape round my foot to hold the end of the yellow line in place but I had to remove it because the pain was much worse, nerve pain again. I can't let the nurses use full compression, it hurts far too much. I saw my neurologist yesterday, she is waiting for my brain and spinal scan, the latter has never been done since my encephalitis in 1975, she wants to see what scarring is present after my illness, she thinks a lot of my symptoms are neuropathic, Who knows! Sometimes I wonder if something like a tems machine would help? Does phantom pain ever settle down? Sometimes I can still feel my toes, it is horrible. Sometimes I ask the nurses how much longer this will go on for but how long is a piece of string?
Doctors want me to come off codeine! - Pain Concern
Doctors want me to come off codeine!
i am sorry to hear you have phantom pain, it isn't easy to deal with. But it sounds like you have more than one type of pain.
For the nerve pain, low dose antidepressants are the drug of choice. It used to be that they weren't sure why that works, but it is increasingly clear that inflammation might well be the cause of the pain, and that low dose antidepressants work by working on the inflammation.
Codeine works on acute pain, but doesn't work on nerve pain. but if you also have acute pain then there is no reason why they should take you off that.
Phantom pain is different again, there are many different medications that can be tried including codeine but that will be up to the pain clinic. There are also non-medication things that could be tried, but again you might have to wait for the pain clinic.
They shouldn't be removing pain medication without giving you an alternative, so hold your position and say you will stop codeine but only under the direction of the pain clinic. Maybe that will encourage them to make sure your appointment is brought forward.
you mention TENS machine. By all means try it, but when I had nerve damage and the nerves were hypersensitive the TENS machine just made it worse not better.
I had nerve damage in my foot when I had surgery on my foot and it took me just over a year for the nerve to grow back and then to settle down when it was hypersensitive. If anything touched it, especially if it was hot or cold, the nerve information going to the brain was hugely over estimated as to what the stimulus was. For instance if I walked along the floor of the hydrotherapy pool it felt that that foot was walking on cut glass.
But I knew I wasn't, I knew it was my brain over egging the situation and it needed to be retrained. So I just kept walking and telling my brain to shut up and ignore. It took a few months, but eventually the brain gave up and recalibrated itself to make those sensations be 'normal' rather than 'pain'.
I don't know if that makes any sense? But remember, if there is a wound that still hasn't healed, that is acute pain and codeine is good for acute pain. What it doesn't work on is chronic nerve pain.
Hi, Firstly, yes the wound is still healing, it is still pretty large but because it is on my foot and because the foot is so far away from my heart, the blood flow isn't as good as it could be. I saw my neurologist on Friday, she suggested duloxatine but I have tried this in the past but it makes me feel worse than I already was, very low even suicidal, I had to come off of it. I don't know what other drugs they could try, because I take other meds, they need to be careful. I am on gabapentin and that keeps the nerve pain under control but yes the acute pain can be horrendous and the codeine masks it but doesn't control it completely, it also depends on how the nurses bandage my foot, how tight they do it and even if one of the nurses is left handed, that makes a difference too because they bandage it differently and the pressure is different, I noticed that the other day, where my little toes were, that side of my foot has always been very sore, I think where the wound has leaked, it has exscoriated and irritated my skin.
As for the pain clinic, I don't know how long that is going to take, they need to do something but I don't know what,
When the nerve pain kicks in or when the codeine wheres off, it can be really painful so I have to keep taking the drugs, can't be helped. I just don't know what to think.
Oh sweetie that's just awful !!!🤗I'm sorry ur suffering so much😢
Personally I think they're crazy wanting to take you off the codeine. It's cruel. They've taken me off tramadol co codamol and paracetamol. I'm off them except the paracetamol now and then.
I'm on Gabapentin but want to try pregabalin. See if that helps with my fibromyalgia pain. I'm in a permanent flare😑.
They want me off morphine to but I'm struggling.
I hope to hell and back you see the peeps at the pain clinic soon!!!!!
I truly hope they listen to you sweetie hugs 🤗🤗Dawn 😍🤗
I know but I'll have to keep fightingit because they will do what they want regardless, it is not them who are suffering but even so. I won't stop taking anything until I know I am going to be able to control the pain as best I can but it is far from easy. Thank you for your help.
Hi, have you tried a acupoint pen which finds the pain point not like the Tens which is hit and miss mainly miss, but get a decent one such as avance
no, I have never heard of it, but would it work through the bandage? my leg is bandaged toe to knee, it is full compression.
Google Merit acupoint ,you could use on the skin on the top of the leg as nerves run up and down leg to toes.
Ok, I have copied that to a text file, will look tomorro. Thanks.
Mindfulness is crap!
Keep taking your codeine until you see the Pain Clinic.
I intend to, the pain is very hard to deal with so mindfulness certainly wouldn't work, if I cannot focus on anything but the pain.
I too suffer from chronic pain, not excruciating every day but mostly enough to make cry. Started when I was 24 and am now 84! Long time to be in pain.
Like you some of it is nerve pain. My problem is with my spine. Had to have a lower spinal fusion in 1984 = terrible operation and a long and painful 2 years before the pain reduced in any way. I now have a Thoracic Scoliosis which means the top of my spine has developed a big curve in it and is pressing on my lungs making it harder to breathe. I have only recently been to see the Pain Clinic here in Kapiti and have found them to be very caring. They are trying their very best to find a suitable pain killer for me. Like you I am only on paracetamol and codeine at the moment. Please God you get to see someone at your Pain Clinic soon.
If you are still able to have a laugh, I find an old fashioned hot water bottle with almost boiling water in it and a cover on it, placed on the worst site of your pain disguises a lot of the pain until you have to fill it again. I'm up and down all night with mine but it is really worth it. It gets me to sleep in the first place.
Take heart my friend, this too shall pass (through a bloody long tunnel sometimes though eh?)
XXXX
ouch, 60 years of pain, that's awful but I have always said there is somebody worse off than me! Pain isn't fun though, it can make you feel very down and when i scolded the foot which was the original problem 4 years ago yesterday actually, the pain used to really kick in and it was really hard to control, when the burn was fresh, it was a third degree burn apparantly, went right through to the muscle, and it wasn't healing so they had to amputate the infected part, i.e. my toes. But anyway, that was 4 years ago and I don't know how long it'll take to heal up, it is still a pretty big wound but I guess it takes as long as it takes. I am on gabapentin and codeine and oramorph when i need it, but it doesn't always help. You look after yourself, take care, x
Thank you Salamander 160 for your reply. I must tell you that over my 60 years of pain 15 were spent going to a Chiropractor and he did keep the pain down quite a bit, I actually worked for him so I didn't have to pay either. When he could no longer help me I then had to go back to conventional treatment and ended up with the fusion. So I did have some luck that way. A chiropractor couldn't help your problem though. I'm interested to know how much the gabapentin helps you. I've never taken it although my Doctor at the Pain Clinic has been talking about it lately. What is oramorph, is it useful?
I think about you every day my friend and wish with all my heart that there will soon be and end to your suffering. Lauree XXX
Hi, Gabapentin helps with the nerve pain, oramorph is liquid morphine. The gabapentin helps with the nerve pain, most of the pain I struggle with is accute pain. I used codeine followed by some oramorph a couple of hours later today, just as well because the nurse was able to pick off all the dead hardened tissue around the wound, I didn't feel it but oh boy, I will later, it will really sore later on, normally when they do that, I can't tollerate it at all. I have never seen a chiropractor, aren't they more about the back etc? Not sure if I'd benefit from that. Ok you take care.
Hi there. Yes Chiropractors deal with the spine which is where all my pain radiates from to every part of my body. Mine is chronic pain but I know what you must be suffering as it is sometimes acute as well. No a Chriopractor would be no use to you at all. They do not deal with open wounds.
I wonder if Oramorph would be helpful to me? Has it got a horrible taste? When the dead tissue around your wound is removed, it must be ghastly for you. Does it mean though that your wound is getting smaller each time they do it and will eventually heal? I truly hope that is the case.
You take care too. LAUREE.
Helo I to are being bullied and not being listened to by surgery since my gp went on maternity leave my medication zomorph time release has been removed from repeat prescription after years of controlling my chronic pain after trying numerous different medication until found one that works and minimal sideffects but no one listened forced onto weekly medication delivered late and forced cuts 5mg a week with no alternative have no contact To talk to asked to speak to practice manager was told had to put in writing if wanted to complain so I suffer without meds somedays so I would seriously consider going abroad to the Swiss euthanasia place as my mother terminal I would use my inheritance to end it if can't get any help from these uncaring fools then you read in news about the onslaught on disabled by gov at moment and pip changes they are banding about ashamed to say it but would rather end it than live in misery and pain
Sounds like you need to find a health advocate, I don't know where you are but here in the uk there are organisations who can help you fight problems like this, the Gp's are a law to themselves, my Gp has cut my paracetamol but am hoping she realises I need it but will see. you take care.
Hi my friend. Why on earth your paracetmol has been cut, I cannot imagine. If I were you I would buy some off the shelf (you can even get them at Supermarkets) and keep taking the original amount prescribed.
God bless. Lauree XX
yes, but in the uk, you can only buy 16 or 32 paracetamol at a time yet they can prescribe hundreds at a time, but yes, that's what they want me to do. Best wishes, Adrien
Are they prepared to give you something else to replace the Paracetamol? I have been told that Paracetamol have no interaction with other pills, very few side effects and taken regularly 2pills four times every day can build up quite a good pain relief. However not against excrutiating pain of course. Have they given you a reason for their request? You are having an awful time my friend and I am so sad for you. I sometimes think certain Doctors have never experienced cronic pain themselves as some of them can be quite ignorant about their patient's needs. God Bless. Lauree XX
Hi, No they haven't told me why they are reducing the paracetamol, just that they thought I wasn't requesting it that often every couple of months, they prescribed 224 tablets at a time so that would last a few weeks, nor have they given me any ideas what to use in place of codeine, watch this space.
hi I am being ‘helped’ to come off my cocodamol by my gp practice and their pharmacist. I’ve been on cocodamol for years plus various other pain meds. I have fibro and a chronic facial pain that flares up but is there on a daily basis. So far the gp has offered me nothing that works as an alernative. Pain clinic were happy for me to take the cocodamol a few years ago.
You have my sympathy. I think it’s just so the gps can say they aren’t prescribing these meds for their patients. The pharmacist has told me to buy the over the counter strength cocodamol. So really I’m not going to come off them completely!
My pain is still there. I’ve done the CBT thing to death. You just feel like no one is bothered as long as the codeine is off the prescription. 😡
trouble with otc is that thers only 8mg codeine with 500 of paracetamol per tablet, its easy to over do on the paracetamol without enough benefit from the small amount of codeine.
Yes there is that but my other point is they are telling me to buy these over the counter while supposedly helping me come off codeine. I think it’s just so they aren’t prescribing me codeine. They aren’t that bothered if I’m still buying it!
a box of 32 would only last you a few days,most pharmacists tell us time and time again not to take it for more than 3 days, they are not going to like selling it to you all the time, they will get difficult about it eventually.
exactly, the Gp can prescribe stronger co-coldamol.
I feel for you, my pain isn't as severe as other people's pain, its just my foot, not like some people crps and fnd and other similar problems, that can't be any funn! I don't know where you are but in the uk the Gps, government etc, are trying hard to make things much more difficult for us, cutting our medication is just another way of getting at us. i haven't seen pain clinic yet, shouldn't be long but watch this space. You take care.
Hi I’m in the U.K. and yes I see a big difference recently with my gp wanting to cut back on my meds but my pain is no different. I’ve been to pain clinic twice and found them of little use. The dr there was very dismissive, not exactly what you need when you’ve waited months for an appointment!
Just because you think your pain isn’t as severe as others doesn’t mean you should suffer. Chronic pain is very debilitating no matter what form it takes or what condition causes it. If these gps had to contend with some of the things we put up with I bet they would have pain meds prescribed quickly enough!
Hi, Yes, the pain is horrible and at times awful and i haven't really had a full nights sleep all week, last night the pain, burning sensation in my foot was pretty bad, i had to double up on my codeine, but hopefully it'll settle down soon. On Wednesday the nurses stripped my foot of dead dry skin, cleaned the wound, on top of my foot and under neath it, i had to take oramorph before the appointment as always because the pain is really bad after they have cleaned it strangely, there was hardly any pain at all until yesterday, and that was only because I told somebody i felt pain free but i reccon I jinxed it! i don't know why I had a lol in the pain for a few days but heigh ho!
I have seen the pain clinic before after I burnt my foot but they were pretty useless then too, My Gp and other professionals really don't understand how bad the pain can be and how it can really drag you down, get to you after a while, affect your mental health and at the moment I don't really have any appetite. I am eating because I have to! Anyway, if it wasn't for groups like this, with people who are suffering too, it would be much harder to cope. Thank you guys!
Hi salamander160
I do feel for you being under ghreat of having pain meds removed. Gabapentin should be helping the neuropathic pain. Codeine doesn’t do much for nerve pain. I was given Gabapentin for sciatica and low back and it helps me. Codeine really needs Paradetamol along with it to make it more effective. I have osteoarthritis of the spine and take 2x30mg codeine twice a day with paracetamol but as a separate tablet. Well, capsules. I don’t like it in tablets. I take separately because I may need paracetamol as a Lemsip for example. Also, I find the co-codamol too big a tablet.
I can’t take anti inflammatories because I’m on anticoagulants. When pain is really bad as it was recently after shoulder replacement surgery I would have loved a Naproxen.
I was given antidepressant Nortriptylene to change fro Gabapentin but it made me too sluggish next day. Anyway I find Gabapentin great. No side effects and wonderful for my restless leg syndrome.
People who don’t experience daily pain that will never go away don’t realise the fear associated with threats of taking any meds away. You need an understanding pain specialist who may be willing to try alternatives but without the threat of having any taken away. All the hype about opioids is about massive amounts and people having to work despite terrible injuries. Usually in US. There is hardly a documentary I haven’t watched.
In fact, in these very extreme cases, and where doctors have reacted by removing people’s opioids and these people have been desperate with no pain help have turned to street dealers and dodgy dispensaries and the deaths have increased in these areas. Any pain needs to be compassionately handled by a specialist. I have taken 2x30mg with a Paracetamol twice a day for 8years with no increase. On hot sunny days which benefits my arthritis I can do without.
I use TENS for my low back and shoulder occasionally and it works great. Try all the pain methods. Mindfulness is fine for frame of mind but hardly can be said to stop pain. Netflix is ideal for distraction.
Very best wishes. Stand your ground.
Yes I have heard some of the stories coming out of the states, even when people top up the gabapentin with opioids to get a bigger kick,. I take codeine and paracetamol 3 or 4 times a day, every 5 or 6 hours, if I leave it longer than that, the pain really kicks in, it is the pain in the wound, them having cleaned and picked the wound clean, its going to really hurt later on, I am dreading it. The thing with the Gp's stopping our meds and different consultants doing different things is all about numbers, money, doing what they think best, not necessarily what is best for each individual person, we all suffer and react in different ways. What works for one may not work for somebody else. The gabapentin works ok but I do want to reduce it, but need to speak to the pain clinic first.
Ok, Thanks for this, I take gabapentin but have put on quite a bit of weight since starting pregabolin a year or so back which I stopped before Christmas and changed to Gabapentin, but my weight is too high for my liking, I am watching what I am eating and drinking, reducing dairy products and bread etc and the weight has started to come down, being in a wheelchair, I don't want to get so heavy I need to be hoisted, that would really get to me, I have been independent for a long time and intend to stay independent as long as I can so need to get my weight down hook or by crook, plus, the extra weight won't help me in other ways.
I take 3 or 4 codein a day, it works most of the time but if I forget to take my meds or let them go too long, the pain can be harder to get back under control. And yes, I have been told by a pain doctor that codeine works opiates work better with paracetamol.
With my legs swelling the way they do and with the constant threat of cellulitis, I was in hospital with it 3 weeks ago for a week, have had it 25 times now since 2018, that really makes things much worse and causes other issues. It really isn't easy so when you have a Gp threatening to remove medication which you know helps, when they don't really understand, when they can't keep up with the information sent to them from other health professionals, i.e. neurologist, hospital consultants, it makes it much harder as we have to try and explain to them what has been going on and that makes things much more complicated in my case and causes more stress. You really cannot win.
What about a steroid injection. That may help. Ask your GP about it. Wishing you a speedy recovery
I have never even thought of that.
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