MS weekly update 26th April 2009
It's been a difficult week because of pain. I mentioned in a previous entry in the blog that the three main areas MS affects me are walking and balance, fatigue and neuropathic pain. The pain affects the left side of my head and radiates down my neck. It's like having toothache in your head. It's severe, localised and debilitating. I only have relief from it when I'm asleep, which makes sense as the nerves reduce their activity in sleep and I often don't have any pain for a few minutes after I wake up in the morning. When this pain first developed just over a year ago, I began to take ibuprofen 400mg increasing to four times daily. After approximately three or four months of this I found that it just wasn't controlling the pain. I would sit with my head back resting on the back of a chair and be unable to function in any way - work or conversation. Anything. Susie eventually called my GP (I was going to wait until I saw the consultant - she felt this was too far away), and he prescribed diclofenac. I took it faithfully, but, it didn't really help much. Luckily, my appointment with the neurologist was coming up!
When I described the pain to the neurologist he simply said that he could help.He prescribed gabapentin for me. I'll leave out the funny stories about how euphoric it made me (I loved the world and everyone in it for about two weeks!). It helped. It was day and night compared with the other analgesics. I had about 80 - 85% control over the pain and I was able to work most of the day and function reasonably normally. However, if I stepped up the dosage during a bad few days of pain then it made me feel so lethargic and tired that I lay on the couch and slept most of the time.
A couple of months ago, having previously spoken with an oral medicine consultant who recommended a different drug with less side effects, I saw the MS specialist nurse and asked if I could change to pregabalin, which is more expensive, but, has less side effects. I found the same euphoric side effects initially (as the consultant said, I 'stepped up' the dosage too quickly - but, you don't get any pain control unless you take the tablets!). I certainly had better pain control and I wasn't so tired. In fact, I felt the best I've felt for ages and didn't have to lie down so much. I felt I'd got my life back. However, this week has been bad. Whether the pain is worse and simply 'breaking through', or whether the drug has less effect now after a 'honeymoon' period, all I know is that the pain has been back with a vengeance despite the fact that I've been taking the medication religiously. So, what next?
When I spoke to the Oral med consultant, he said that I should try a combination of medications. He suggested fentanyl patches. These are similar to nicotine patches but contain a synthetic opioid. I haven't got these yet, but I think I'll ask my GP to prescribe them. The one side effect that's common with them is constipation - so, I'm off to Tesco to buy a couple of litres of prune juice - just in case!
The molecular structure - for those who like to know these things!
Other areas that MS affects me are standing for any length of time, little irritating things like crossing my legs or getting out of the car. Anything that involves accurate movement of feet or legs. Strangely enough, driving is OK, probably because I'm seated and my feet know what to do. I don't have the balance problem in the car - I think that this is because the seat is molded and helps a lot with support. I'll leave this week's report there and hopefully, have an update on the pain management next week. 'Til next time.