Well, the new anti-spasmodic is now up to 3 doses a day, following phone call with GP on Friday. And he's also put me on a short dose of steroids to see if that'll kick-start anything positive. Then he writes to the Pain Management Clinic.
My weekend was utterly trashed, although not entirely by the RSD for once, and it feels as though the depression is never going to lift. This has been the toughest month ever, for so many reasons.
This week I have been mostly reading...... :) ...... well, I've been reading up on Fibromyalgia, which my former GP told me I also had a couple of years ago. The treatment is much the same anyway and so it wouldn't make a whole heap of difference from that point of view - i.e., there is no effective treatment, so try these because they might help - and you can't take double the dosage just because you've got both conditions, ha ha ha, LOL etc. But it might explain why I've got such a bad case of RSD. The list of symptoms was like reading about my life, and comments from fellow sufferers had me saying "Me too!" over and over again.
More FMS than RSD, or more RSD than FMS? Neither, actually, because IMHO they feed off each other and so it's basically 50/50.
But I feel such embarrassment about telling anyone that there's another underlying condition that's equally weird. My true nature is one of finding humour in everything and laughter being not only the best medicine but a way of life, and I fear it makes me sound like a real misery to have so much flipping wrong with me all the bloody time. And that's so NOT the real me. And that's hard.
But you have to admit:
Reflex Sympathetic Dystrophy? Weird.
Fibromyalgia? Weird.
Raynaud's Syndrome? Weird.
It's all a bit - well, weird, don't you think? Add asthma, high blood pressure (but controlled by drugs) and a few other things I shan't go into and I'm like a walking medical disaster area!!!
I'm in extreme pain tonight; it's so excruciating that it's 3.00 am and I still haven't gone to bed because I'm scared of taking my trousers and boots and socks off because I know how much extra that will hurt. Isn't it ridiculous? But that's what living with RSD is like - so many aspects of the condition itself are ridiculous before you start.
And all of this from a sprained ankle. Yep, that's ridiculous all right.
Saturday, 29 September 2007
Monday, 24 September 2007
When One Door Closes, Another One Slams In Your Face
I made it. I got the last of the wretched Topiramate out of my system. It was tough. Very tough. But it was gone and the new experiment could begin: adding the anti-spasmodic just 2mg at a time, very slowly, until we gradually reached a maximum of 8mg a day. Well, tomorrow is my first day on 4 mg. Meanwhile, we started to up the Gabapentin dosage to 3600mg a day (!!!!!).
Well, that's been flipping marvellous. I've reached the dizzy heights of 3300mg and was gripped by the worst cramps of my entire life. It started early Sunday morning in my right calf and it's now early on Tuesday and it han't gone yet - the left calf has joined in though, in an unwelcome gesture of solidarity. My GP has told me to cut back to 3000mg and see if that helps - I'm to report back at the end of the week, sooner if the cramps don't improve. I couldn't wish for a more understanding doctor, he is taking such an interest and he genuinely cares and wants to help. He's then going to write to the Pain Consultant and basically say "OK then - now what?!"
It hasn't been an easy few weeks. I can only sleep almost sitting up and even then it's now drug-assisted, I'm afraid. Yes, I'm on sleeping tablets. I was just so exhausted from lack of sleep and the GP said I really did need something to tide me over and give me the chance to get some proper rest. And he was right, of course - I didn't realise how poorly I'd been sleeping until I'd had a really refreshing night's sleep!! Those little blue pills have been a Godsend.
There is something, though, which has given me an enormous amount of help with some pain relief and has lifted my spirits. I want to tell the world about this because it's amazing.
You may well have heard of reiki healing - my physio had discussed it with me once but because it involved either being touched by the healer or their hands close to the body it wasn't going to be suitable - as soon as the hands got anywhere near I would go into spasm, which would be counter-productive. I
Well, I have just discovered a wonderful lady named Shaz who, amongst her many gifts, is a reiki master, and she has invented the most delightful way to send distant healing. She takes an adorable little teddy bear and gives him a full reiki treatment. The reiki2u bear can then be sent to whoever needs him - including yourself, as I was anxious to check.
Do you think that sounds fanciful? Yes, you probably do. But I can honestly tell you that - IT WORKS!!!!!!! I was in a desperate state when my bear arrived. I didn't know what to expect. But as I unwrapped the little fellow and held him close I was rocked back in my seat with what I can only describe as pure energy, and it was like being enfolded in a pure white light. And then - bliss!! My pain was eased. And I cried with the sheer joy and relief of it. I felt able to cope.
I know I'm in a bad way at the moment but that's largely the side-effects of the drugs - and even then reiki2u bear is still helping. My hips have been so much better today, as have my hands.
There will be some people who won't believe that what I have just written is possible. Fine, that's their choice. But believe me, it's more than possible. It happened to me, it's continuing to happen to me and having a tangible makes the distant healing seem so close.
reiki2u bear - http://www.freewebs.com/reiki2u/ if you're interested. Shaz is a lovely, kind and caring lady and one of those people who make the world seem a better place.
Well, that's been flipping marvellous. I've reached the dizzy heights of 3300mg and was gripped by the worst cramps of my entire life. It started early Sunday morning in my right calf and it's now early on Tuesday and it han't gone yet - the left calf has joined in though, in an unwelcome gesture of solidarity. My GP has told me to cut back to 3000mg and see if that helps - I'm to report back at the end of the week, sooner if the cramps don't improve. I couldn't wish for a more understanding doctor, he is taking such an interest and he genuinely cares and wants to help. He's then going to write to the Pain Consultant and basically say "OK then - now what?!"
It hasn't been an easy few weeks. I can only sleep almost sitting up and even then it's now drug-assisted, I'm afraid. Yes, I'm on sleeping tablets. I was just so exhausted from lack of sleep and the GP said I really did need something to tide me over and give me the chance to get some proper rest. And he was right, of course - I didn't realise how poorly I'd been sleeping until I'd had a really refreshing night's sleep!! Those little blue pills have been a Godsend.
There is something, though, which has given me an enormous amount of help with some pain relief and has lifted my spirits. I want to tell the world about this because it's amazing.
You may well have heard of reiki healing - my physio had discussed it with me once but because it involved either being touched by the healer or their hands close to the body it wasn't going to be suitable - as soon as the hands got anywhere near I would go into spasm, which would be counter-productive. I
Well, I have just discovered a wonderful lady named Shaz who, amongst her many gifts, is a reiki master, and she has invented the most delightful way to send distant healing. She takes an adorable little teddy bear and gives him a full reiki treatment. The reiki2u bear can then be sent to whoever needs him - including yourself, as I was anxious to check.
Do you think that sounds fanciful? Yes, you probably do. But I can honestly tell you that - IT WORKS!!!!!!! I was in a desperate state when my bear arrived. I didn't know what to expect. But as I unwrapped the little fellow and held him close I was rocked back in my seat with what I can only describe as pure energy, and it was like being enfolded in a pure white light. And then - bliss!! My pain was eased. And I cried with the sheer joy and relief of it. I felt able to cope.
I know I'm in a bad way at the moment but that's largely the side-effects of the drugs - and even then reiki2u bear is still helping. My hips have been so much better today, as have my hands.
There will be some people who won't believe that what I have just written is possible. Fine, that's their choice. But believe me, it's more than possible. It happened to me, it's continuing to happen to me and having a tangible makes the distant healing seem so close.
reiki2u bear - http://www.freewebs.com/reiki2u/ if you're interested. Shaz is a lovely, kind and caring lady and one of those people who make the world seem a better place.
Thursday, 6 September 2007
Down, down, deeper and down....
Well, I'm down to 50mg of the Topiramate per day now and things are getting pretty nasty. I've been managing the situation not too badly. I decided to give magnetic therapy a try again. I used this a great deal in the early years and it was extremely effective but as the RSD spread the magnets became less effective until they weren't doing any good at all, although they still worked brilliantly for other conditions. I wondered if they might be useful again having had a fairly long break from them.
Instant results! They've really helped to calm the situation down to such an extent that I've been able to cope, to get some much-needed sleep and to feel just that little bit in control. I've worn them 24/7 and yes, I do notice a difference when I take them off. But things are starting to get worse again now and despite the magnets the pain is driving me insane at the moment. If you can imagine every type of pain that you can, that's what's going on in both legs and hands, plus intense burning, the sensation of wasp stings, electric shocks, running water, all sorts of bizarre things. But this is perfectly normal. So that's all right then.
I had a wonderful boost last week when we went out not to see a doctor or a consultant but to see our best friends Kathy & Vince. Kathy & I have known each other since we were 12, which is, er, quite a few years now (!!) and it was so lovely to spend some time out of the house with people I know I can truly relax and be myself with. It did me the world of good - laughter really is the best medicine, and we always have plenty of that!!
Harper has done something extraordinary again today. It's usual for him, but I've never written it up before. I noticed we had some windfalls from the apple tree so, armed with a plastic bag, I gingerly ventured up the garden to rescue them from the local wildlife. Now, Harper seems to think that I should not be allowed out on my own because it's not safe (he's got a point) and he feels it is his responsibility to guard me at all times lest I do something stupid. So he escorts me, keeping only a short distance away and watching me like a hawk. Just in case.
The thing is this. Once I'd finished collecting the apples I slowly started to make my way back. Harper raced on ahead, content that I had managed to survive this perilous adventure. He reached the patio and turned round, then sat down to wait for me to reach him. Halfway down the garden things went funny. I almost blacked out. I struggled to maintain my balance and the world suddenly went very weird and out of focus and then black and white. I don't know how long this lasted. Fortunately I didn't fall or faint and as I gradually came back to reality and my eyes began to focus, I could see a small black and white face perring at me, the head cocked to one side. A more anxious and worried expression I have never seen. I just melted. I assured Harper that I was fine and that "it's all right" and he was happy again, but he still waited for me to reach him and came right up close to make absolutely sure.
You can see why he feels I can't be trusted to be out on my own, can't you? Bless him. He is the most extraordinary, amazingly intelligent cat. But he's more than a cat. He's - he's Harper. And we love him so much it hurts.
Instant results! They've really helped to calm the situation down to such an extent that I've been able to cope, to get some much-needed sleep and to feel just that little bit in control. I've worn them 24/7 and yes, I do notice a difference when I take them off. But things are starting to get worse again now and despite the magnets the pain is driving me insane at the moment. If you can imagine every type of pain that you can, that's what's going on in both legs and hands, plus intense burning, the sensation of wasp stings, electric shocks, running water, all sorts of bizarre things. But this is perfectly normal. So that's all right then.
I had a wonderful boost last week when we went out not to see a doctor or a consultant but to see our best friends Kathy & Vince. Kathy & I have known each other since we were 12, which is, er, quite a few years now (!!) and it was so lovely to spend some time out of the house with people I know I can truly relax and be myself with. It did me the world of good - laughter really is the best medicine, and we always have plenty of that!!
Harper has done something extraordinary again today. It's usual for him, but I've never written it up before. I noticed we had some windfalls from the apple tree so, armed with a plastic bag, I gingerly ventured up the garden to rescue them from the local wildlife. Now, Harper seems to think that I should not be allowed out on my own because it's not safe (he's got a point) and he feels it is his responsibility to guard me at all times lest I do something stupid. So he escorts me, keeping only a short distance away and watching me like a hawk. Just in case.
The thing is this. Once I'd finished collecting the apples I slowly started to make my way back. Harper raced on ahead, content that I had managed to survive this perilous adventure. He reached the patio and turned round, then sat down to wait for me to reach him. Halfway down the garden things went funny. I almost blacked out. I struggled to maintain my balance and the world suddenly went very weird and out of focus and then black and white. I don't know how long this lasted. Fortunately I didn't fall or faint and as I gradually came back to reality and my eyes began to focus, I could see a small black and white face perring at me, the head cocked to one side. A more anxious and worried expression I have never seen. I just melted. I assured Harper that I was fine and that "it's all right" and he was happy again, but he still waited for me to reach him and came right up close to make absolutely sure.
You can see why he feels I can't be trusted to be out on my own, can't you? Bless him. He is the most extraordinary, amazingly intelligent cat. But he's more than a cat. He's - he's Harper. And we love him so much it hurts.
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