Saturday, 25 February 2012

Opiate Withdrawal.........It's Hell!

Morning everyone!
Well it is 4am right now............and another night goes by with me not being able to sleep!
I'm getting SO frustrated :-(

So I saw my pain consultant on Monday. I had no need to worry, all the things I'd convinced myself, in my head, that he was going to say didn't happen at all!
He is still just as keen as I am to see this through & get me off the Oxycodone.
He feels that it is really important to get it out of my system so that we can start again. He says that the evidence is quite compelling that people who are on high dose opiates, over a sustained period of time, can become susceptible to the possibility of the drugs causing pain & they now know why or how that happens.
He also completely understands that I want to be in hospital to see it through. The problem is that there is a virus at the hospital & they aren't doing many admissions.
So I am stuck playing a waiting game & in the meantime I have to just put up with all the symptoms I have, whether they are normal MS symptoms or whether it is withdrawal issues.

He has advised me to go back up to 40mgs........let me back track a bit and explain!
I was on Oxycontin (Targinact) for around 18 months & I was on 80mgs a day. 40mgs in the morning and 40mgs at night. Oxycontin is Oxycodone it's just a slow release tablet over 12 hours rather than a short acting tablet (as far as I'm aware!)
I started the withdrawal....blissfully unaware of what I was doing or what I was letting myself in for. I'd come off tablets before and never had any problems!
I got down to around 20mgs a day when I started to experience nasty withdrawal symptoms.
Spasms in my legs, which I couldn't control. I felt sick, I had headaches, I was shaking but from deep inside, I couldn't sleep, my body was buzzing all over & my pain levels went through the roof.
So I was advised to increase it slightly again until I could be admitted to hospital to complete the opiate withdrawal.
I increased it to 30mgs expecting to be admitted fairly rapidly but that hasn't happened so my consultant has advised me to increase to 40mgs a day & see if that helps at all with the pain. He said that it's a significant increase so I should notice a difference....if it's going to happen.
If I don't feel any relief then I'm to drop back down to 20mgs & wait for the admission.
All I can do is try the increase and wait to go into hospital. I only started yesterday so fingers crossed!

It is so frustrating!
We are trying to be as positive as we can to get us through this situation. Because believe me, Martin & I are well & truly, in this together......thankfully!! ;-)
As much as possible we have been looking at ways to distract ourselves from what's going on.
Fortunately we have a few, very exciting things coming up this year!
I have someones 40th birthday party to organise!! And we have a big holiday to look forward to, so we are trying to focus on those things as much as we can!
It's not always easy to do though & sometimes you just want to have a hug and admit that it's a crap situation!

It's one thing that Martin & I have learnt over the past ten years of being diagnosed with MS. It's really important to have things to look forward to. They don't have to be big things, like ours are this year, just a day out or a weekend away. Things in the calendar that we can focus on when things get a bit rough!
What I desperately would like is to sleep through a lot of it, but wow, has my sleep been affected by this withdrawal. I can literally spend the whole night awake.
I try to sleep but it just doesn't happen. I've tried relaxation, deep breathing, all sorts, but nothing gets me to drift off.
Unfortunately tonight is one of those nights.
And the pain I'm experiencing is horrific. My feet are agony. I've tried to explain it before but it feels like someone has slashed them with a razor, my lower back feels like someone is stabbing it with thousands of pins and my hands, well, they are burning and the palms of my hands feels like someone has put loads of little cuts all over really isn't very pleasant! :-(
The other thing that is really annoying is that I have taken my Oxycodone, I have also taken two lots Oramorph (Morphine) as well as Ibuprofen but I'm still wide awake!
This is another reason why I am so determined to continue with & to complete this withdrawal. My body has become so tolerant of these really hefty drugs that nothing is knocking me out when they should be.
Is that too much to ask?!

Anyway having had my rant and having killed an hour I'll now go back to my party planning.
You see there is a positive to all this!!! ;-)

Wednesday, 15 February 2012

Still No Let Up!

OK, so I'm now in the third week of waiting to go into hospital to withdraw from Oxycodone & it's getting really frustrating!
I'm seeing my pain consultant on Monday so I'll be able to ask him what's going on.
The thing that I'm afraid of is that he'll tell me to just come off these drugs on my own at home & I really don't want to do that.
I do want to carry on with this. I'm desperate to get these drugs out of my system so that we can see where we go with it. I have eternal hope that, even if I end up going back on these drugs, I'll be able to go on them at a lower dose.
If that happens then this will have all been worth it!
But I am really anxious about my appointment on Monday.

I had an interesting appointment with my psychologist yesterday.
I told him that I have this appointment & my fears that my pain consultant will just tell me to come off the drugs but to do it at home. I told him that I really don't want to do that. In fact I'm scared of doing that. I told him that I do still want to do this but that I really feel I need the support of being in hospital. My psychologist said that it's OK to feel like that & it's OK to say that to my consultant. To ask to go into hospital. This is still a huge thing I'm going through & to want the security of hospital is to be expected.
One thing he picked up on is how I've already decided in my head what my pain consultant is going to say, what the outcome is going to be and that it's not going to be what I want to hear. I have nothing to back this up though of course!
Instead of just waiting & seeing what is said, I pre-empt it & it's always going to go against what I want. I do this a lot!
It was interesting because I said how I felt that I was being a coward because I didn't feel I could just get on & do this at home, but he said I should have more compassion for myself.
That took me aback - how many of us really have compassion for ourselves?
We are all taught to be compassionate to our fellow man but when & where are we told to be compassionate to ourselves?
He asked me how I would feel if it was someone else in this position. I was very quick to think that it would be OK if someone else was struggling with this situation. In fact I would be supporting them to go into hospital & get support, so why do I feel that it's so wrong for me to feel like this?!
We had a good discussion & I do understand what he's saying but putting into practice could be more difficult!
Being hard on myself is what I do best! ;-)

Love & hugs

Sunday, 12 February 2012

Feeling Rough

Oh boy am I feeling rough today :-(
I have buzzing all over, it's like fireworks going off all over my body. I'm amazingly tired and yet I haven't done anything and my lower back feels like someone is stabbing me with thousands of pins, it really burns. :-(
I only got up today because I needed to take my tablets but I could very easily have stayed in bed all day today. Maybe I need a set of tablets upstairs from now on?

I'm getting pretty fed up of this whole Oxycodone withdrawal too.
I'm still waiting to hear when I can go into hospital. I phoned the pain clinic on Thursday only to be told that they aren't admitting anyone at the moment because they have a virus in the hospital.
I completely understand that they can't let people come in but I'm so frustrated. I just want to get through this whole thing but I'm stuck waiting and I have no idea when I'll be going in.
I have an appointment with my pain consultant on February 20th and I suspect that I'll be going to that before I get into hospital!
I'm terrified that he will say that I need to just get on and do the withdrawal myself, at home, and I really don't want to do that.
I feel a bit of a coward but I just know it's going to be hell and I need the support of being somewhere where there are people who know how to help me.
I also feel that it's not fair on Martin if I have to do this at home. He is the one that will take the brunt of it and I don't want to do that to him.
It's such a difficult situation and I guess I just need to wait and see what happens.........all the time dealing with all the pain etc :-(

In the meantime I'm still trying to distract myself with the positive things I have to look forward to!
We have a party, a holiday and the Olympics to enjoy this year!
And I'm so grateful for all of that because it's giving me something else to think about and something else to focus on.
Organising Martin's 40th party is no small task! And then going on a six week holiday takes some planning!!
They are both things that I am so excited about and will be so great!
It is really important for us to have things to look forward to. When you are in the position of having a chronic illness that has totally changed your life, it is really important to have good things that you can focus on and look forward to. It gives you a purpose and helps to take your mind off things.
I'm not saying it gets rid of the pain or the fatigue or whatever issues you have but it just helps to remember the good things that you have to look forward to when you are going through those hard times.

So bring on May 5th/6th and May 8th...............................12 weeks and counting!! :-)

Wednesday, 8 February 2012

Cold, Cold, Cold :(

Wow, it's turned cold!
Does anyone else suffer in the extreme cold or hot temperatures?

I have a real issue with both the extreme cold and extreme heat.
My pain levels increase dramatically.
When the temperatures drop, as they have done recently, I struggle to keep warm. The pain that I feel in my feet and in my hands intensifies significantly and becomes really biting. And I find it really difficult to keep those extremities warm at all.
I had these problems last winter, 2010/2011, and I remember just how bad it felt. I have tried to prepare myself for the cold this year but I am still finding it a real problem.
I have got gloves, arm warmers, plenty of layers. For my feet I have got lots of socks, slipper socks, I've got a really snug pair of cosy slipper boots & I've even got a pair of microwaveable slippers!
But I still struggle with this biting cold.
The pain in my fingers and toes makes me feel quite sick. And it's not just the pain I feel when they are really cold but also when they start to warm up, they burn and those burning sensations are so so painful.
And actually, being in the South West of England, we don't have it as cold as other areas so I guess I should be grateful for that!!
Still, it's horrible :-(

Some of this that I feel is quite deceptive though because there are times when my feet or hands will feel absolutely freezing but when I get Martin to feel them for me he says that they aren't cold at all!
That's MS for you though!

And I have problems when it's too hot too. My fingers will swell and my hands will go bright red and puffy.
I can't win, I need a temperature regulator for my body! ;-)

I remember a Doctor saying to me once that the most predictable thing about MS is it's unpredictability..............he wasn't wrong!

I hope everyone is keeping as warm as possible!

Happy Birthday Mum

It would have been my Mum's birthday today.
We lost her on March 8th 2008, she was 70 years old.
We miss her every day.


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 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.
Especially Martin!

Hello Everyone.................I'm Back!!

Oh my goodness, I can't believe just how long it's been since I wrote my last post. I feel really sad as this was something that I wanted to do regularly. As well as helping others it has always helped me to write down what has been going on and I have really missed not writing on here.

It's a new year and a new start!

So what has been happening?
I have had quite a rough time, I guess that's why I haven't been on here.
I saw my consultant a few months ago.
I love my consultant, he is so easy to talk to, to be honest with and you know you are going to have a proper conversation with him. Very often it's easy to feel talked down to by the Doctors. I have always felt that they know what they are doing and you have to listen to what they say and do as you're told. But with my consultant I really do feel that I can talk to him properly. Yes, he's the one who knows what he's talking about but when you have a condition like MS, the patient is an expert too.
We discussed my pain and fatigue.
He told me that there are medications that can help fatigue. They don't work for everyone, but he was happy to do a prescription for me to try and see whether it helped.
The script he gave me was for Modafinil (Provigil) 50mgs up to twice a day. But the second tablet not to be taken after about 3pm as it could affect your sleep then.
I got the tablets and started taking them. I have found them to be really helpful. I tend to just take one a day, unless I know I have something in the evening that I want to be awake for. I certainly don't take it after 2pm otherwise I really struggle with sleep.
It has helped me to not feel quite so sluggish and before I was taking these I consistently needed a sleep in the afternoon. But I am not needing that quite so often.
I'm delighted because we are going on a big holiday in May and I want to be able to enjoy it. Now that I've found a medication that can help, I feel that I am going to be more in control of my fatigue.
Don't get me wrong, it's not a miracle cure and I still have bad days. I still need afternoon rests, but it has definitely helped and will be a benefit on holiday!

Another thing we discussed was the Tysabri infusions that I am on.
I have been on them for over two & a half years now. I'm not convinced as to whether it has been doing much for me. I have had a few what I would call relapses, but according to my consultant they haven't been.
I get so wound up about the whole relapse thing. I have symptoms constantly. I've not had a symptom free day since my MS started in 2002. And I have periods where they are worse or where new symptoms come along etc, but generally I am always told that it's not a relapse.
My psychologist, when I was querying this once, said does it really matter what label it has, if it's affecting you then it's affecting you and that's all that matters. He has a point!
My consultant organised for me to have an MRI scan. This showed that nothing really had changed.
He also organised for me to have a blood test for the JC virus. This is a test that if you are positive for the JC virus indicates that you are more at risk for developing PML, the brain infection associated with Tysabri.
I had the test and I am negative for the JC virus. My consultant has encouraged me to continue on with Tysabri as it is the best thing available at the moment. So I am continuing on with the infusions. I don't actually feel any difference when I have the infusions. Some people know when their next infusion is due, they know that it has an impact on them. I don't feel that at all. Of course that doesn't mean it isn't helping though!
I will point out that I know of several people who have tested positive for the JC virus but they are continuing on with the Tysabri infusions. We have had discussions about this and we have all said that actually it doesn't really make any difference if you test positive as to continuing with the infusions. When we all started this we had no idea about the test and we all took the decision that it was worth the risk. We are all monitored very well and knowing that you test positive just means that you will be monitored even more closely.
I'm not saying that it's not important to know whether you are positive or not. It is really important because it points out who needs to be watched more closely.
Even though I have tested negative I am to be tested every year to make sure nothing changes.

The other main problem I have been having is with my pain.
It is a symptom that I have had from the start and is one of my biggest symptoms.....................and one of my biggest problems!
I saw my pain consultant in December and we have set off a chain of events that will take me a while to write about, so I will write a separate post about that in the next day or so!

I hope everyone had a wonderful Christmas and New Year. I hope that you are all keeping well and that as the cold weather is taking hold, you are all keeping snug and warm! :-)