For the vast majority of people medication is something you take briefly when you're ill. You go to the Doctor, tell him/her your symptoms, you get a prescription, take the course and go back to normal. How would you feel if the tablets didn't work? Irritated perhaps? Chances are you'd go back to your GP, get a second course or something different. One way or another you get better and carry on as before. What if your symptoms don't go? Regardless of how many courses or how many different medications are tried. How would you feel then? What about if your symptoms get worse and worse, or flare up badly and there is nothing you can take to calm things down?
If you would, put yourself in my shoes. I take a cocktail of around fourteen different medications each day, and not one of them have, nor will ever make me better. CRPS is incurable, palliative care is all you get and isn't great as they simply don't know enough about it to have a tried and tested treatment plan. Approaches differ wildly from Consultant to Consultant and can become seriously invasive should you choose to go down that route. The sad fact however is that the best you can hope for is some relief from the various symptoms it throws at you. I can say that because mentally I have accepted my situation, the reality of living with a condition you wouldn't wish on your worst enemy. Accepted that sometimes it's better to stay with the status quo than increase the dose of something or continue to take something that isn't doing anything in the hope that it will. Or opting for a surgical approach with no guarantee of improvement and which may even make things worse. Quality of life is paramount for me.
That's not to say of course that if something new came along that they could reasonably guarantee would make a difference I wouldn't try it. Of course I would. Nor am I saying that I have lost all hope that something will improve my symptoms and hence make life more bearable. All I'm saying is that I no longer feel the desperation of 'right, that didn't work, what can we try next?'. Trying anything and everything regardless of the side-effects or additional trauma that may come with it. Or even make you worse than you were before. Desperation is too strong a word to use, but it is the inability to accept you have to live as best you can, there isn't a miracle cure around the corner. Don't forget I am into my seventh year of living with CRPS, so the postcard, tee shirt etc. were purchased long ago. I know that I'm lucky to be mentally strong enough to take the pragmatic approach I do. There are so many who aren't and can't.
The mainstay of 'treatment' for CRPS, like many other chronic conditions I assume, are drugs taken daily, often at several different times. In total I take 34 tablets each day. It's like a military operation to be honest. I have five separate alarms on my phone each reminding us that another batch of tablets is due. Then there is another lot to take just before bed. I get sick and tired of it, but it is the only way to ensure that the tablets are onboard doing what they should. Missing some by an hour or so causes extra pain etc, but with something like MST (slow release Morphine, stays in the system 24 hours a day) missing a tablet has huge repercussions. It is therefore absolutely vital that I'm never sick. It happened once and meant the MST wasn't absorbed. I couldn't take another one so had to carry on with a major part of my pain defence taken away. As the day went on I deteriorated to the point that I was unable to move even slightly, relax my legs or sleep. It took a good couple of days to get back to my normal pain levels. So yet another drug was added to stop nausea and vomiting in its tracks as and when I need it. Thank goodness it works a treat. This raises a wider issue, the need to take even more drugs to combat the problems caused by others. These include drugs to support the liver and stomach, drugs to help alleviate morphine induced constipation. It is a never ending treadmill that you simply can't get off.
So why so many, surely you just need painkillers?
I wish! A cocktail is quickly built up because there are so many different symptoms to try and combat. Remember CRPS is caused when the sympathetic nervous system goes wrong so the nerves fire pain signals which are false or the brain misinterprets normal signals as pain (the jury is out!). Also the affected areas are hypersensitive to the smallest stimulus producing pain totally out of proportion with what you'd expect. You also have to contend with cramping, burning pains, Stabbing pains, twitching, purpling (because the blood doesn't flow so well to the extremities - flight or fight efffect where the sympathetic nervous system responds by increasing blood flow to the major organs), horrendous swelling, depression, wildly differing temperature changes. The list goes on, but hopefully you see what I mean. It's not a simple job finding the right combination of drugs to give the best relief. Trial and error basically, with drugs coming from a bewildering array of other areas of medicine that seem totally unrelated to CRPS.
There are generalisations in terms of the type of drugs prescribed to help with the symptoms of CRPS. I do not claim to have any medical knowledge but can only share my experiences of the types of drug I've tried, discussed or am currently taking. I do however have a working knowledge of how every drug I take works. Won't take it unless I know what it does. The cocktail of drugs Any CRPS sufferer takes more than likely includes some from some or all of the following families:
Painkillers (analgesics, opiates) -
I went through the weaker analgesic drugs (aspirin etc) without any benefit at all. They do their best to block pain signals but didn't have a hope. Opiates (codeine, tramadol, morphine etc) unsurprisingly have been most effective for me, because they act to lower the intensity of nerve transmissions between the spinal cord and the brain. Slow release Morphine (MST) has proved the best of the ones I've tried, without having unbearable side effects, topped up with either co-dydramol or co-codamol four times a day. The codeine in them metabolises to morphine so effectively giving a little boost every 6 hours. Or when the pain is particularly bad.
NSAIDs (non-steroidal anti-inflammatory drugs) -
These help a little with the swelling and also are known to provide some pain relief as well. They don't do much, but anything is better than nothing. I take Diclofenac because it is easier on the stomach when taken long term. I did try a course of water tablets which very quickly reduced the swelling. Unfortunately this increased both the hypersensitivity and the pain so they fell by the wayside.
These two groups are normally used in the treatment of seizures but they have also proved effective in treating nerve pain. Pregablin and Gabapentin seem to be the most common ones prescribed for CRPS. Pregablin did a reasonable job of deadening the nerves for me, which in turn reduced the pain in it's various forms. Unfortunately it was causing damage to my liver so it had to go. One step forward, two steps back as they say. Gabapentin wasn't nearly as effective so we had to try something else.
I now take Baclofen, used for MS, which is doing quite a good job. It is a muscle relaxer and antispastic drug which treats muscle spasms, pain and stiffness. It was a bit of a shot in the dark by my Pain Consultant and just goes to show how inventive they have to be. Where we go from here if they stop being as effective I have no idea. Such is the way with CRPS drug treatment. There aren't a stockpile of different drugs to try, you get to the end of the road surprisingly quickly and have to come to terms with the fact that you are going to have to live with the relief you can get.
Benzodiazepines (Diazepam, Clonazepam, Lorazepam are examples)
These work by changing the way messages are sent to certain parts of the brain. The result is a calming effect on various functions of the brain, making brain cells less excitable. It is easy to see how this benefits the CRPS sufferer, being used to treat anxiety, sleeping disorders and the like. I take clonazepam which has certainly helped me in the evening and through the night with twitching, sleeping problems.
These days not widely used as antidepressants because other drugs are more effective. A happy coincidence for the CRPS sufferer is that they have been shown to help with nerve pain. They work by regulating serotonin and noradrenaline in the brain. How this helps with pain I'm not sure, but it wouldn't seem a huge leap of faith to see that reducing depression would allow the body to cope more easily with the pain. I also find they increase the length of time I manage to sleep during the night. I take 100mg of Amitriptyline each evening at 9.30pm. To get 2-3 hours of unbroken sleep a couple of times a night between my bedtime (12pm - 1am) and the first drug alarm at 6am is heaven. It's the little things that make all the difference.
Yet another family of drugs vital to many CRPS sufferers including myself. They work by increasing the levels of neurotransmitters in the brain such as serotonin. They also found to disrupt pain signals between the nerves and the brain. Providing a dual function of helping you cope with the trauma and hopelessness living with CRPS can cause together with more pain relief make these extremely useful.
Circulation Aids (Clopidogrel, Nifedipine)
Both of the above help the circulation in different ways. Clopidogrel acts on platelets in the blood, effectively making them less sticky. The result is that the blood doesn't clot as easily and so it's flow rate improves. It is usually given to people who have either had strokes or are at risk of having one. This was the first medication they put me on when I was released from hospital and I've remained on it to this day. Nifedipine is a calcium channel blocker which relaxes the heart muscle and blood vessels and is usually given to people with high blood pressure or angina. It acts to improve blood flow to the extremities and was diagnosed by my GP because it helps with 'burning foot' syndrome. Neither of these medications are typical for CRPS, but bearing in mind that my right foot went ischemic when my CRPS started, it makes sense to take ongoing precautions to prevent it happening again. Although they cause me so much grief I would prefer to keep them.
... and finally the Support Team
it is an unfortunate side effect of taking powerful drugs, that you also end up taking extra medications to either eliminate or at least minimise problems they cause. Omeprazole supports the stomach, various medications combat morphine induced constipation (bisacodyl, lactulose or similar). I also take milk thistle as an ongoing supplement to support my liver as well as acai berry which is a good anti-oxidant.
I had to start taking Serc on a permanent basis in the last six months. It contains betahistine and is typically used to relieve problems in the inner ear. Fluid in the inner ear gives the brain information about our position. Changes in pressure for example can cause nausea, dizziness and a sensation that the world is spinning. I suffer this constantly, no doubt in part due to the other drugs I take but also because I am not very active. Just something else to deal with.
The big problem with medication is that it's so hit and miss. A drug that provides some relief for one person will do absolutely nothing for someone else. A drug may work brilliantly but the side effects are so extreme that taking it becomes untenable. Upping the dose doesn't guarantee an improvement in dealing with the symptoms. Blindly increasing the dose of a medication to it's maximum, without taking account of how your body retracts to it seems nonsensical to me. Another golden rule is never increase, add or change more than one drug at a time. My Consultant is adamant about this and I agree. Any Science experiment will only have one variable factor. If you change more than one thing at a time you have no idea what is helping, making it worse, causing side effects etc.
It does bother me when I hear that someone is actively working towards reaching the highest dose of a drug or drugs. Increasing the dose may actually make things worse. Remember earlier I mentioned quality of life? Let me give an example of what I mean by more isn't always better. Recently, as an attempt to combat the brutal effects of going to speedway were having on me, we opted to increase my MST from 40mg every 12 hours to 50mg. I was desperate to try and find a little extra relief, no matter how small. Over the course of the following week I battled through the increased side effects hoping that it would be worthwhile because the pain relief would improve. Sadly it made no difference to my pain but in myself I felt worse. There was no point in taking the higher dose, so I spent the next week battling through the withdrawal to get back to where I was before.
I suppose my underlying message throughout this post is that trying to minimise or relieve the symptoms of CRPS is a tricky business with no set pattern and wildly varying degrees of success. I will deal with other approaches such as Mirror therapy and spinal cord stimulators in my next post. That's another can of worms entirely....