Monday, 6 February 2012
Pain, Opiates and Opiate Withdrawal :-(
OK, so this is my update of what's been going on with my pain.
Pain has been one of my main symptoms since my MS started in 2002.
Isn't it weird, you could have a room full of people with MS and yet we would all have such different symptoms. I know people who don't have any pain at all.......how does that work?!?!?!
I have pain all over my body, from my feet upwards and it isn't pleasant at all.
I'll try and explain how some of it feels.
My feet feel like someone has taken the skin off them, shrunk it, stretched it back over and slashed it with a razor.
My toes burn. It's that feeling of when you have been out in the freezing cold and then come inside and as they warm up, they burn.
My lower back and legs feel as though someone is stabbing thousands of pins into the skin. Or that someone has taken a razor to the skin and made lots of small slashes.
My hands & fingers burn & ache, they also feel like someone has slashed them. I can't explain, they just feel really horrible.
These feelings happen individually and together at all different times. And I have never been able to work out what sets them off or makes it stop.
I am on various different medications but I have found that I am one of those people that medications don't really work for.
I can't tell you how many different medications I have tried for my symptoms over the past 9 & 1/2 years. And I'm still at a point where things don't really help.
It's very frustrating for me and my doctors. I have felt so many times that it is my fault, I must be doing something wrong because things just don't work. How can these drugs work for other people but not for me? But I realise that it's not me, I'm not actually doing anything wrong, it's just that I have very stubborn symptoms and I have a very uncooperative body!
My pain consultant is great. He understands completely the symptoms that I am talking about and he certainly doesn't make me feel like I am making it up.
I had an appointment with him in December and we discussed about the fact that my pain had increased again (of it's own accord) in August/September 2011.
He told me that one of the medications I'm on - Oxycodone/Naloxone (Targinact) - has had evidence to show that once you go past a certain amount, it can cause pain as well as help pain.
He asked me whether I would be willing to try something. He wanted me to come off the drug to see whether it has actually been helping me or not.
He did say to me that it would be difficult and I would experience increased pain for a couple of weeks but once that had past we could then see whether the pain stayed high or settled. If it settled, I could stay off the drug but if it stayed high I could go back on it but maybe at a lower dose.
I've come off medications before and never had any problems so I agreed to do this.
Martin & I talked about it and we decided to wait until after Christmas so that I could enjoy the festive season without worrying about the pain!
I had been to my GP and got the right doses so that I could come down off it sensibly.
So January 6th 2012, I started it, but I was very naive and I really didn't realise what I was letting myself into or how powerful the drug was that I was trying to come off.
I came down off it over the first week.
I was very over ambitious and I came down from 80mgs a day of Oxycodone/Naloxone (Targinact) to 20mgs a day of Oxycodone (OxyNorm).
Oxycodone/Naloxone is a modified release tablet which lasts 12 hours, so I was taking it twice a day. OxyNorm which is Oxycodone on it's own isn't modified release so it needs to be taken every 4-6 hours.
I knew this but I didn't stick to it properly.
By the 13th January, I had got down to 20mgs a day. My pain levels had increased significantly and I wasn't feeling that great but I just assumed that this was what was going to happen.
The next day though I had major problems with spasms in my left leg. It wasn't normal spasms though, it was a feeling that would build up in my leg then the leg would twitch in the spasm and then settle. Then it would repeat itself. The trouble was this was happening every 20 to 30 seconds.
I couldn't sit, stand, lie down, nothing. I just couldn't settle at all. I was in a mess, it was so distressing and I really didn't know what to do with myself.
I tried relaxation, deep breathing, all sorts, just to try and get myself to settle down, but nothing worked.
Eventually I called the out of hours Doctors and a GP called me back. He said he suspected that it was possibly due to the withdrawal off Oxycodone but that it could be MS related too. He advised me to increase the Oxycodone and to take some Baclofen. He also did a script for Diazepam to help me & my muscles relax.
My leg did calm down eventually and I was able to settle a bit, much to my relief. I had increased my medication up to 30mg again and taken Baclofen, Diazepam and Morphine too. I had taken enough medication that I should have been completely knocked out, but I wasn't. I was fully awake and walking around. It was very frustrating.
The Sunday was much easier and I thought things had settled so I decreased the Oxycodone again to 20mgs a day.
But Monday evening my leg set off again, this time even worse than before. Eventually I managed to go to bed and on the following day I called my GP and got an appointment to go and see her.
She explained that I needed to be really regimental about taking the Oxynorm because it doesn't last. She also gave me an Oxycodone liquid solution so that I could take smaller doses but still take it 4-6 hours apart. She told me I was doing well, that this is extremely strong stuff, twice as strong as morphine so not to beat myself up but not to give up yet!
Twice as strong as morphine...........WHAT WAS I DOING?!?!
When I got home I drew up a rota of what I needed to take and when I needed to take it. This included through the night. I then set up my phone so that an alarm would go off each time I needed to take my medication. This was the only way I could keep on top of it.
It seemed to be working. I was able to come back down at a much slower rate and that definitely helped.
It was Tuesday 24th January and I had got down to about 15mls of solution a day but I was really struggling again. I felt really rough, I wasn't sleeping well, I was in so much pain and I didn't know what to do. I felt that I had no support medically - but when I think about it, I hadn't really asked for any!
I decided that I would call my Psychologist. I needed help to deal with all this as I was getting out of my depth and I was really struggling.
He told me that I was doing really well but that I could increase and go back on it if I wanted to. The problem was that I really didn't want to. I wanted to see this through. I wanted to be able to come off it so that we could see what was going on.
I don't want to be taking medications that are really powerful but aren't really helping me at all......what's the point of that?
So although I was going through hell, I wanted to continue with it.
He then suggested that if I wanted to continue that I contact my pain consultant and get some help and advice. He told me that it is OK to ask for help. I did that and managed to get an emergency appointment for the Thursday.
I also called my GP surgery and after talking to various people, my GP rang me back and I had a good chat to her. She suggested that I increase the Oxycodone to 20mls again until I saw my pain consultant on the Thursday.
You see, there is support there if you ask for it!
I went to see my pain consultant on the Thursday. I had written down a lot of the things that had happened, how the pain had increased all over my body, how bad it had got and how I was feeling.
He completely understood and said that they were definitely side effects of coming off this drug. The pain I was experiencing sounded like neuropathic pain and that was expected.
He said that this is a major drug and that withdrawing off it after being on it for so long (18 months) was always going to be difficult.
We talked about it and he felt that as I had come this far I was doing the right thing to continue with this process. He did feel though, that trying to come off the last bit slowly may be harder than just stopping out right, so he suggested that going cold turkey was the way to go.
He said that I had three choices.
1) Stay as I was on 20mls of Oxycodone and get admitted to hospital fairly urgently before stopping the Oxycodone completely.
2) Stop the Oxycodone then - at home - and use some medications that he would give me to help with the side effects.
3) Increase the Oxycodone to 40mls again until I could be admitted to hospital to do a complete stop off the Oxycodone.
I didn't know what to do.
He said the earliest he could get me into hospital would be a week on Monday (Feb 6th) and that he would probably just stop then and get off the stuff!
I was a bit of a mess, I didn't know what to do. I didn't really want to go into hospital, I didn't want to wait, but I wasn't sure I could face the prospect of doing the withdrawal on my own at home - and by on my own, I mean without any medical staff. I know I'd have Martin but I'd also take it all out on him.
He suggested that we go home and think about it over the weekend and let him know our decision the following Monday. He also said that he'd give me a script for some stuff to help the side effects and to get that asap and see whether that helped at all. That might help make the decision for me!
Martin & I talked about it a lot.
I was clearly swaying towards going into hospital. I felt I needed the support of the nursing staff etc. I just couldn't face doing it on my own. But we were both very aware that the consultant had said he would just come straight off it.
After going back and forth over it, we decided that I would be happier going into hospital to do it.
I was still going to try the Clonidine to help the side effects over the weekend but that if that didn't help, I would ask to be admitted.
The Clonidine didn't really do very much at all, so last Monday I called the pain clinic and told them my decision.
I haven't heard anything yet, so I am still plodding on with the pain and all the other symptoms and I'm just waiting to find out when they can get me in so that I can get off this medication.
I am really scared about going through the process of cold turkey.
I know how bad I feel when I haven't taken my meds on time, so the prospect of not taking them at all fills me with absolute dread, but I need to do this and that's why going into hospital is the right decision for me.
This is the hardest thing I have ever had to do. If I hadn't been so naive would I have agreed to do this, I don't know but I do know that I have to see it through now that I have come this far.
It's very possible that I will go back on this drug but it is my absolute hope that I won't have to be on such a high dose.
That is why I am sticking at this and why I will see this through.
Of course when I know the details of going through the last bit of this hell I will post about it. But until then I will try to stay positive, I will focus on the things I have to look forward to and I thank my wonderful family and friends for helping me through all this, without you I would be a basket case by now so my everlasting love and thanks to you all.