Many of the people that we talked to were regularly using some type of pain relieving medication. Some were taking many different drugs and had set up a system (such as a Dosett box) to make sure that they remembered to take them all.
A Dosett box, refilled weekly, helps her remember her medication.
People did, however, also point out how important it is to have medications reviewed, especially if over the counter drugs are being used, or prescriptions have come from several different sources. One person mentioned a medication review at a pain management clinic which had led many people to cut down on the paracetamol they were using.
People who need daily pain medication are generally advised to take their tablets at set times of the day and not to wait until the pain is severe. One woman used to take her medication when she needed it, but her doctor had since advised her that it was more effective if it was in her system all the time.
Her GP told her she should take her medication regularly.
Pain varies from day to day and it was not unusual for people to regulate their own medication. In some cases, but not all, people told us that their doctors were happy for them to do this. One woman said, ‘I’ve yet to find anyone who doesn’t mess around with their painkillers and yeah, it’s probably very dangerous’.
Another woman said she regulated her medication depending on what type of day she was having or what she was planning to do, but recognised that this was quite difficult to do and realised that she should take the medication before the pain got bad.
Used to take her medication regularly but now is trying to regulate it herself and finds that…
Sometimes people were prescribed a sustained release medication which was taken in the morning and then slowly releases through the day. Often they were given other medication that they could vary throughout the day.
Some people had been prescribed additional medication, to take when they had a flare-up of pain. One woman explained how she uses appropriate medication as part of a plan for getting through a flare-up of pain. She emphasised the importance of being disciplined and not taking unnecessary medication (see also ‘Coping with flare-up‘).
Uses medication as part of her plan of managing a flare-up of pain but disciplines herself not to…
Several people we talked to preferred to minimise their use of medication, for example by only using medication when they were having a bad episode of pain. Others chose not to use medication at all, either because of side effects or because they felt that medication was not effective and they could manage their pain in other ways.
Used to take medication but found it wasn’t helping and now only takes any when her sleep is…
Prefers to not take medication because he finds they are not effective and he doesn’t like the…
Reducing or stopping medication was an issue for several people. Some pain relieving medication can cause a withdrawal reaction if stopped suddenly. It is always best to check with a doctor that it is safe to come off medication.
Most people who had reduced their medication had been gradually weaned off the drugs that they were taking. One man explained that he was weaned down from 28 different medicines to eight over about six months, and could reduce them further by using pain management techniques such as breathing and relaxation.
Tells how he was weaned off a lot of his medication and could reduce it even more by using…
One woman had struggled to reduce medication prescribed for nerve pain but had found her GP very encouraging. A couple of people had stopped taking opiate drugs suddenly and had experienced severe withdrawal reactions (see also ‘Medication: strong opioids‘).
Feels frustrated that she cannot reduce her medication for nerve pain, but has found her GP very…
Occasionally, people needed to stop their medication for specific reasons. One woman had stopped her medication during the early stages of pregnancy. Although she had been scared about going back onto them while she was still pregnant, everything had been fine.
Had to stop her medication in the first 12 weeks of pregnancy.
A couple of people had to stop opiate medication before a surgical procedure. A woman who had stopped her medication before surgery had experienced a withdrawal reaction after because nobody had picked up on the fact that her opioid tablets should have been reintroduced after she had stopped using a syringe driver (a special machine that gives intravenous morphine after surgery).
After surgery she experienced withdrawal side effects because the medical staff had not picked up…
Several people talked about drinking alcohol and using medication. Whilst some said they preferred or had been told to avoid alcohol, others used alcohol in moderation.
One woman said she would have an alcoholic drink sometimes if her tablets were not helping as much as usual, although she knew it was probably unwise. Several others, who were not using medication, drank a moderate amount of alcohol and said that it helped their pain but they wanted to avoid becoming dependent on alcohol.