An Introduction to Painkillers

This post is about the basic forms of pain medication that you can buy over the counter. There is a lot more available on prescription. If you find the over the counter options ineffective talk to your GP who may prescribe an alternative. To discuss some of the points I will be using a useful tool called ‘Numbers Needed to Treat (NNT)’ as it is helpful in comparing the effectiveness of painkillers. It means the number of patients you give a drug to, for one patient to have that treatment work. So when you talk about NNT for painkillers it’s the number of people you need to give the painkiller to for one patient to have pain relief. With all the drugs I am going to talk about please follow the advice on the packet or the directions you are given when you take them. I’m not going to go into details about that here as you can find it all on the packets if you buy painkillers and you will be given suitable directions if they are prescribed.

• Paracetamol – A lot of people think that paracetamol is useless and certainly there are more powerful painkillers. However, used correctly paracetamol can be effective. The first thing that you should know about paracetamol is that it is at it's most effective when taken regularly. A couple of paracetamol occasionally won’t do much for more severe pain, but taken regularly it can make a difference.  It can also be particularly effective when taken in addition to other painkillers. For paracetamol the NNT is 3.8 and that’s not bad. Let’s call it 4. So for every 4 patients who take it, 1 will get pain relief. Paracetamol also has the ability to reduce temperature if you have a fever. You may come across branded paracetamol that has something like ‘Plus’ or ‘Extra’ in the name. Often this means that a small dose of caffeine has been added. There is a small amount of evidence that caffeine does have painkilling properties, but it can also cause headaches in some situations, not to mention that it is a stimulant and it will keep you awake. If you really find the combination of caffeine and paracetamol effective I would advise just taking your ordinary paracetamol with a cup of coffee or tea. Paracetamol is a very safe drug when used at the correct dosage and the vast majority of people can take it.

• Non-steroidal Anti-inflammatory Drugs (NSAIDs) - This includes things like ibuprofen and diclofenac which you can buy in the UK and other drugs that can be prescribed. There are a huge number of different NSAIDs and most of them are better at slightly different things. Generally speaking they are an effective group of painkillers. As the name indicates they have anti-inflammatory properties and so they work particularly well on injuries where inflammation is involved. Having said that they can be effective on many types of pain. The NNT for ibuprofen is 2.5, so already you can see it is a more effective painkiller than paracetamol. Diclofenac has a very similar NNT.  There are certain groups of people who shouldn’t take NSAIDs, so if you’re not sure have a chat to your Pharmacist or GP.

• Aspirin - It is very similar to the NSAIDs as it also has anti-inflammatory properties. It has a lot of uses other than as a painkiller, but as a painkiller it wouldn’t be my first choice. The NNT is 4.4 and it is sometimes thought that if it had been first introduced in today’s world of comprehensive clinical trials it would never have reached the market as it isn’t as safe as current standards require. I would suggest sticking to the more effective NSAIDs if you can take them, and if you can’t you shouldn’t really be taking aspirin either.  In particular aspirin should not be given to children under 16. Having said that aspirin can be extremely useful in managing certain health problems unrelated to pain relief, and it is often prescribed in low dose for various reasons where it's benefits outweigh it's problems. My only recommendation for it as a painkiller is that gargling soluble aspirin can be effective for relieving a sore throat.

• Codeine – This is part of a group of drugs called opioids. This group includes drugs like morphine. Codeine is not available to buy on its own in the UK, but it can be bought in combination with other drugs.  On its own codeine is extremely ineffective. The NNT is 16.7 which is bordering on useless.  But combine codeine with other drugs and miraculous things happen. In particular paracetamol combined with codeine (co-codamol) can be hugely effective. Co-codamol has an NNT of 2.2 which makes it one of the best painkillers out there. Far better than the sum of the parts would indicate. This figure is for a dose of codeine that cannot be bought over the counter. But it is possible to buy a lower dose version, which whilst not as good theoretically, many people report as being extremely effective. It is also possible to buy combinations of codeine and ibuprofen. As a side note I should mention that codeine is addictive. Whilst you are extremely unlikely to become addicted when taking co-codamol or the ibuprofen containing equivalent for a few days, if you are finding you are wanting to take it more and more please seek medical advice.

As a final note I should mention that you do not need to buy expensive brands of painkillers unless you really want to. Some combination painkillers are only available in brand form, but generally speaking most are available unbranded and considerably cheaper than their branded counterparts. The brand does not make it more effective. The only exception to this is that some branded products offer special modified release technology, which may mean you absorb the drug faster or over a longer period. But for ordinary paracetamol, aspirin, ibuprofen and co-codamol the unbranded product will be as effective as the branded one and considerably cheaper.

I have just added an email address for the blog up on the top right of the page, so if you have any questions please feel free to email me.

Pain is inevitable, suffering is optional

I thought it was time for some more practical and useful posts, and a break from my opinionated ramblings. So today I am going to address the issue of pain. Pain is a common problem for CFS/ME sufferers and an even greater problem for Fibromyalgia sufferers who are more at the pain end of the CFS/ME/Fibromyalgia spectrum. Generally CFS/ME is characterised more by fatigue and Fibromyalgia more by pain.

I’ve been quite fortunate when it comes to pain. Most of my pain symptoms have mostly disappeared as time has passed. In the early days of my CFS/ME I suffered a lot more. Some of what I have to say here is personal experience, but the vast majority is knowledge from my pharmacy training.
 

The pain symptoms often found in CFS/ME include:

• Muscular pain, joint pain and severe headaches
• Painful lymph nodes (small glands of the immune system)
• Stomach pain and other problems similar to irritable bowel syndrome (IBS), such as bloating, constipation, diarrhoea and nausea
• Sore throat 

Fibromyalgia patients have additional pain, often all over their bodies and they can be extremely sensitive to pain, or feel pain from things that wouldn’t normally be painful.

Pain is an extremely difficult thing to quantify. It’s very subjective; you can never compare your pain to someone else’s. In some ways it’s not the level of pain that matters, but how you perceive it. There have been lots of interesting studies about pain, and one of the experiments that illustrates this you can try yourself (if you wish). Many studies have shown that if someone immerses their hands in ice cold water they will be able to tolerate the pain from the cold water for considerably longer if they are distracted by things such as complicated calculations, or word games, although all sorts of distractions will do the job. People tend to perceive their pain as less if they are not focussing on it.

Some people think that treating pain is a waste of time. How many times have we been told something along the lines of: ‘Pull yourself together it’s only a bit of pain’. But this attitude can be potentially damaging. Ideally pain should be treated and minimised. Pain that is left untreated for long periods of time can develop into a chronic (long term) problem. There are plenty of examples of people with broken limbs who had pain that wasn’t effectively treated. As a result, long after the bone had healed they still experienced pain. This is thought to be due to the nerves becoming so used to sending pain signals that they continue to do so long after the cause of the pain has healed. But it is an area that is not well understood. I’m not saying that if you don’t take painkillers when you have a headache it will never go away. But it is worth bearing in mind that it pays to be honest with healthcare professionals about how much pain you’re in and whether the methods used to treat your pain are working.  Although sadly some people have untreatable pain, there is no benefit to putting up with it if it can be treated.

I was going to talk about all the different medications and alternative therapies that are available to help treat pain, but I think I am going to have to do several posts on this as I’ve already written quite a lot. So next time I’ll do a breakdown of some of the medication available and how effective it’s likely to be.

Is CBT appropriate for CFS/ME?

CBT (Cognitive behavioural therapy) is often offered as a treatment for CFS/ME and is in fact mentioned in the NICE (National Institute for Clinical Excellence) guidelines as something that should be offered to CFS/ME patients. This is something that seems to enrage a lot of CFS/ME sufferers. There is some evidence that CBT can help CFS/ME, but a lot of sufferers take it as a personal insult because apparently it implies that CFS/ME is a mental illness. Some sufferers are so adamant about it that not so long ago someone doing research into the Lightning Process (often considered to be like CBT to the uneducated) to treat CFS/ME received death threats. Now to me that is just madness. I appreciate the CFS/ME sufferers want a cure but any research is a step in the right direction and the Lightning process is not just CBT and so what if it was? (I will talk more about the Lightning Process another time). Just because you don’t agree with the research being done is not an excuse for death threats. Some ME/CFS sufferers are so wrapped up in getting a ‘cure’ that they seem to forget there are hundreds of equally serious other illnesses out there that don’t have cures either.

No health professional has ever said to me that they think CFS/ME is a mental illness. I know there are doctors and other healthcare professionals who think that CFS/ME is depression and they are wrong, but that is not related to CBT being offered to CFS/ME sufferers. Also, whilst I understand that people object to CFS/ME being classed as a mental illness, why are so many objections so vehement? Mental illness in my opinion is a much worse thing to suffer from that CFS/ME, or certainly depression is. I’ve had both and if I had to choose, I would take the CFS/ME over depression any day. Yes CFS/ME is horrible, but depression destroys you in a way CFS/ME never can unless it causes you to develop depression. So it makes me angry when people are so defiant about CFS/ME not being a mental illness. No, it’s not and be bloody grateful it isn’t. These objections just make me think that people don’t understand the seriousness of mental illness, as if it is somehow lesser that CFS/ME. Well it isn’t, it is a set of illnesses of equal importance many of which also have no cure

Now, why are CFS/ME patients offered CBT if it’s not a mental illness? An excellent question. Well, CBT is not just for treating depression and mental health problems, but I’ll come back to that. Someone who suffers abuse can get help from CBT, and being abused isn’t mental illness. Someone who is in a traumatic accident can get help from CBT and someone with a chronic (long term) physical illness of any kind can get help from CBT. None of these are mental illnesses, what they all have in common is that they could all cause someone to develop a mental illness. Illnesses such as depression, anxiety or PTSD (post traumatic stress disorder). CFS/ME sufferers fit neatly into this last category and it is exactly for this reason that they are offered CBT, as depression and CFS/ME together must be horrific.

In fact CBT in my opinion is for everyone. Very few people really understand how our minds work without help. And the vast majority of people think we don’t have any control over them. The benefits of doing CBT are huge and give us a much better understanding of why we feel certain things and how to deal with it. I cannot tell you how useful CBT has been throughout my adult life, when just applied to ordinary everyday situations. It constantly saddens me how many people I come across who believe their lives are ruled by their emotions and the people/factors that cause them. A bit of CBT could change so many people’s lives and show them how to live happily without letting their emotions control them. This is a dream that I realise has no future, as there is never going to be time that I can foresee where all people are automatically offered and given CBT. However, CFS/ME sufferers are offered it and it is a shame that most aren’t grateful for this help. Many people have no idea who difficult it is to get CBT on the NHS even if you have depression.  One day I hope there will be cure, but until that happens I will take all the help I can get, including CBT, to so that I can live relatively happily with this illness.

Five Stages of Grief

I recently completed a CBT (Cognitive Behavioural Therapy) course at the RNHRD (Royal National Hospital for Rheumatic Diseases) with the aim of find better ways of dealing with my emotions. Which I know I have a tendency to squash. I’ve found it extremely helpful, but now that I’ve come out the other end and have stopped trying to bury my feelings I have to deal with them instead. Something which is not at all easy.

The Kübler-Ross model or Five Stages of Grief suggests that when we grieve we go through five distinct stages. These are Denial, Anger, Bargaining, Depression and Acceptance. We experience these when we grieve for anything or anyone. Whether that is the loss of a friend or the loss of our life or just the loss of our life as it was.

Denial is the phase where you say ‘I’m fine’, and refuse to admit there is anything wrong. I think for me the denial phase was short lived.

Anger is when we ask ‘Why me?’ and start placing blame. I’m not too good at dealing with anger, of all the emotions, I find it the most difficult and I hid a lot of my anger in my mind in places where I didn’t have to see it.

Bargaining is where we try and change things: ‘I’ll do anything to change this’, personally I go through bargaining stages quite frequently, but they are usually short lived because I know the futility of it.

 
Depression is when we retreat into sadness. When people cry and grieve. In some ways I think this is the most important part of the process. This is the stage that you must participate in fully to move on to acceptance. The very fact that there are feelings of sadness shows the start of acceptance, the true realisation of loss. You wouldn’t stop someone grieving for the loss of some they love, and it is just as important not the stop yourself from grieving for the loss of your old life.

Finally there is Acceptance. The point where you are ok with it, whatever it is.

With CFS/ME there is a great sense of loss, or there was for me, particularly in the early stages. I felt very much that I was grieving for my old life which had disappeared or ended suddenly. I went through all the stages, some quicker than others, and reached a level of acceptance. What I did not fully understand is that this model is not linear; you can revert to earlier stages. It is only through CBT sessions that I have accepted that I am allowed to go backwards. And in fact, that I have lost the acceptance I had.

 
The part of my brain that wasn’t accepting my illness I’d buried carefully as dealing with it was too inconvenient. Now, having let it out I am now experiencing feelings of anger and depression again. Feelings that I have to allow myself if I am ever to move on to the acceptance phase again.

 
The sense of loss is not as immediate as it once was, time has softened it to something less sharp and painful, something blunter and duller, but it is still there nonetheless. I grieve for the loss of my independence, my career, my life as it was. I am angry with my body for letting me down. At the moment I cannot accept that I might never get my life back. Which is strange because I have accepted this in the past and been content with that, although I now wonder if this was a true acceptance.

 
I am at long last allowing myself to really grieve for what I have lost. Not forcing myself into acceptance and burying the parts of my mind that didn’t agree. I hope that true acceptance isn’t far away.

Fighting the benefits system

If you haven’t already to signed the ATOS petition please do so and spread the word. It needs 100,000 signatures by August and there is a long way to go.

ATOS currently do the medical assessments for Employment and Support allowance, ESA, (previously incapacity benefit) and Disability living allowance, DLA. I cannot begin to describe the amount of frustration my family and I had when trying to get me some monetary support. Currently 40% of the people who turned down get it on appeal, which implies there is something seriously wrong with the system. Why aren’t the 40% getting it first time round? It is a waste of public money that these cases have to go through the appeals process. Not to mention the stress caused to people who are extremely unwell. The figures quoted by the press as for the number of people fraudulently getting support are complete rubbish, the department of work and pension’s, DWPs, figures are considerably lower. The figures for fraud across all benefits including incapacity benefit, but not DLA were estimated at 0.8% of total expenditure. The figures quoted in the press include the errors in expenditure, much of which is the fault of the DWP. There have also been some vastly inflated errors not backed up by statistics. More figures can be seen here and here. To be honest, after the experience I’ve been through it would be pretty hard to get ESA and/or DLA fraudulently, it’s hard enough to get it when you qualify for it. Not to mention you would need to fool your GP or have them complicit in your scheme to get the medical certificates. Anyway, my story about it is below. If you would rather not read it then the link for the petition it at the bottom.

I applied for DLA with the help of the citizens’ advice bureau (CAB) in the summer of 2010. We didn’t apply for ESA because I didn’t have enough National Insurance, NI, contributions to qualify as I have been a perpetual student. When I didn’t get it I assumed it was because I didn’t qualify. It was only when I started going to the local ME/CFS service that I realised I did qualify and they pretty much just automatically turn you down. I also discovered that I might be able to get NI credits even if I couldn’t get ESA, so I applied for ESA with this in mind. I did the application myself, which in hindsight was foolish, and I was called for a medical assessment. It was only a very long time later that I discovered you can actually say you aren’t well enough to attend a medical assessment and ask that they visit you at home with a chaperone present – which is what I should have asked for. Anyway I went to the medical assessment, tired and anxious as I had to get up early and my husband took me as I was unable to drive. Looking back now I am horrified they didn’t grant me the NI credits from this assessment as I wobbled around very slowly, and I must have looked terrible. But I had washed my hair the previous day and I was clean and wearing clean clothes and apparently that counted against me. I wonder how things would have turned out if I turned up unwashed and smelly. The assessment was done by a nurse, who seemed lovely, but I don’t believe she knew anything about CFS/ME. And hindsight was to prove that thought to be correct. I was asked to do various bending and standing exercises, which I did, because I was asked to. In hindsight I should have refused as they exhausted me. I was also given a mental exercise, counting down in 7’s from 100.  I was horrified to discover I couldn’t do it. For me, a pharmacy graduate to not be able to count down in 7s was frightening. I know a lot of people would find this exercise difficult, but compared to the pharmacy calculations I had been performing only a year before.... it should have been a piece of cake. It was at this point I realised how much my mind had deteriorated and I burst into tears. My husband took me home and it took me several days to recover from the ordeal.

The result of this assessment was that I didn’t qualify for ESA. In fact if I remember correctly, they said the assessment concluded there was nothing wrong with me. I was very upset and my family I suspect were very angry. We should have asked for the report of the assessment at this point, but we didn’t know that it was possible.

My mother got on the case, and it was through her support and persistence that the rest of the process was accomplished. She wrote and contested the decision and as a result I got my NI credits. Not that they wrote and told us, oh no, they wrote a letter saying I wouldn’t be required to attend ‘back to work’ interviews, and when my mother phoned them it turned out that as I was considered too unwell to be working I would get NI credits and not be required to do anything else other than provide medical certificates.

We then started the process to apply for DLA. This time my mother did the form for me and had help from the CAB and consulted a lot of books. I would have had no chance without her help, the form is very long and it requires a lot of thought, I could not have done it on my own. For anyone out there who needs to do it, get help from the CAB, they will help you for free. I qualified for the lowest level of DLA under their criteria. The application was turned down, we contested it, and it was turned down again.

At this point we applied for all the documents relating to my case. These documents proved most interesting. Not only were all my documents included, but the documents for another case for another person. Confidential information about another individual was mixed in with my papers. Something no one other than this person and the people involved in his case should have seen. An unbelievably shocking error, we contacted the person who was looking after the case on behalf of the individual in question so that they could make a complaint. I cannot rightly remember if this was the fault of the DWP of Jobcentre plus, but it along with other things, such as the lack of a letter about qualifying for NI credits, indicate serious problems and disorganisation within the system.

It was from my documents that we discovered what had really gone on in my ATOS medical assessment for ESA. The conclusion had been that I had mild depression, and would be back at work in no more than three months. I am still not working more than 18 months later. I have had depression many years ago and it lasted four years, I know what it feels like and I know that I did not have it and have not had it since I developed CFS/ME. It is an entirely different illness that appears similar as it has similar symptoms but inside my head and my body the two illnesses are poles apart. Please understand that I am not dismissing the seriousness of depression, I know it is a hugely debilitating illness, but it is not CFS/ME, and the physical disability caused by mild depression does not come close to the disability caused by mild ME, and certainly not moderate to severe ME, which is what I had at the time. Plus most depression is treatable, CFS/ME is not. To our horror and disgust this medical assessment was the grounds for refusing me DLA, despite the fact we had overturned the decision. Further letters got us nowhere, the assessment said no, so the answer was no. We appealed.

By the time we got our appeal date nine months had passed since my original application and I was on the verge of no longer qualifying for DLA. We discussed for a long time whether I would go or not. We knew I was unlikely to get DLA going forward but I might get it backdated to the original application date. Which would have given me the princely sum of approximately £500. A sum that wouldn’t even cover one month of the mortgage. We decided that the stress of going to the appeal wasn’t worth £500 and dropped the case. Part of me wanted to go for the principal of the whole thing, but I don’t really have the energy to spare on principles these days.

So as you can see I don’t believe ATOS should be doing the medical assessments. I would really appreciate it if you could add your name to this petition, and spread the word. 100,000 signatures are needed to get this off the ground, and they are needed by August. I cannot stress enough how detrimental ATOS was to my applications for benefits. And the huge number of other people who have been through the same and worse. People, who are unwell and struggling, not just people with ME, but all kinds of medical conditions. I can survive without any monetary support; it just would have helped a lot. But some people don’t have the financial support I have and really need these benefits to survive. People who have worked hard all their lives, paid their NI for years, and the government won’t help them out. Frankly it’s disgusting and it makes me sick just thinking about it.

Please sign the petition here.