I've decided to have a weekly update especially related to the MS. A couple of things have happened that have brought this about. Firstly, I received an email from friends of a friend who are quite some distance from us here in Scotland, whom I suspect have an MS connection; and secondly, my dear wife, Susie, and my good friend Colin, have (how shall I say?) suggested to me that I concentrate more on how MS is affecting my life as this is the part that is central to what people want to read about. So, I've decided to write a weekly update specifically about MS and its effects, and will be titled weekly update and will be in a different font colour and size (as per this entry). Any other entries will have titles that describe them and be discernible by title and font size and colour (black). OK. So, let's move on. Please do feel free to contact me to tell me your thoughts and suggestions. As of today, I'm putting an email address on the blog so that you can contact me directly - without feeling that the only way to do this is to leave a comment.
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.
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.
I think this is one of the clearest articles you have written. I have obviously been with you for the past week and you have described exactly what your life is like at this stage. Keep up the good work!
ReplyDeleteI don't know what to say Paul, I know and work with so many folk with MS and listen when they tell me of their experiences, I can stand by and listen but I can never fully understand, it is beyond any of my experience with chronic pain. The best I can do is stand with them.
ReplyDeleteBut Paul I think I have to disagree with Susie and Colin slightly (sorry!) As someone who works with the disability community I consider you as more than your MS. It's only one part of you.
When I see you at church I don't think "ah there is the guy with MS." but rather "there is that kind man who went to all that hassle to play Pachabel's canon at my wedding." (still wish I had a copy of that.)
Thank you for sharing your experience of MS though as I know it is a particulary private experience, may Our Lord's strength be with you.
Love Linda, Duncan and Samuel x
Dear Paul, I so agree with Linda's comment, and love reading all your other stuff too, so don't feel you have to only write about MS. Love Alison
ReplyDeleteThanks all! I wasn't actually complaining - just having a friendly bit of banter with Susie and Colin. I will keep writing about other things too - so, Alison I'm afraid you'll have to read all my musings!
ReplyDeleteThanks for the comments, Linda. I appreciate your kindness and sentiments. Bless you.