My Own Personal Pain

OxyNorm Reduction Update: Week 17

2009-01-11T02:13:00Z

Current Dosage: 80mg

It's now week 17 of the OxyNorm reduction plan and as you can see from my current dosage, things haven't gone to plan at all in the past three weeks. (I should be on 65mg!).
(Clicking on the graph opens up a new window with a larger version)

]]> I was expecting my pain levels to decrease after I returned home from the INPUT course, but despite continuing to perform my exercises and attempting to increase my activities, it didn't. If anything, I would say that it has once again started to increase. With Christmas approaching, naturally I was expecting my activity levels to increase, especially having spent the previous four weeks in London at St Thomas' hospital and therefore had achieved nothing in preparation for Christmas. (That's not to say that I had it in mind to run round like a blue arsed fly and play catch-up. I was still on a steep leaning curve with the lessons learnt at INPUT, Christmas preparations, Christmas School plays, and not forgetting catching up with the 4 weeks missed work. As much as I wanted to ~~cancel~~ postpone Christmas this year, we all needed it).

During week 15 I decided that things were not going to plan and therefore keep my OxyNorm levels constant over the Christmas break. Better to stay at a constant level and manage the pain as best as possible and at least spend some quality time with the family rather than deal with withdrawal symptoms etc. At least that was the plan.

I've had about four issues over the last three weeks when my absorption rate dropped off the face of the planet for no apparent reason. I am however getting much better at recognising the effects of withdrawal and so better prepared for it's effects. Prior to INPUT despite knowing what was happening, it still dragged me down both physically and mentally. Post INPUT, I am able to mentally deal with the withdrawal a damn site better, and as much as INPUT has to do with it, Dave A takes most of the credit for that.

There was one instance over the Christmas break that I managed to eat some shop bought pre-made" 'snacks' that I later found to contain sesame oil. The withdrawal symptoms started about 6 hours after eating the food and it took about 36 hours for things to return back to "normal" on that occurrence. (And if you are reading this Maggie, it wasn't New Years Eve and your lovely cooking).

Despite my best efforts, my pain level increased so I actually went back up to 85mg for about 10days before finally dropping down again on the 6th January. (Funnily enough, that coincided with the kids going back to school on the 5th January).

I'm due up in London later this week for the one month post-INPUT follow up and I will have to have a chat with them about my progress. At my current rate, I'm not going to be off the OxyNorm until around March/April (remembering to take the pharmaceutical level into consideration). In the grand scheme of things, another 3 months doesn't sound too long, but it feels like an age. Dealing with the back pain is bad enough, but the side effects of the OxyNorm (and OxyNorm withdrawal) more often or not feels many times worse. I just want to be off the damn things as quick as possible. Hopefully, no more increases and no more periods of stability.

There is still the temptation to just stop the whole lot and go cold turkey, but past experiences still make that highly impracticable.

The 'correct' way to reduce your Morphine medication

2008-12-18T01:01:54Z

Before I say any more, this post is based on information given to me by medical staff trained in the field of drug and medication addiction. You should not attempt any of the steps or stages I mention during this post, nor should you attempt to stop taking any medication without first consulting your own physician/consultant (or some other fully qualified medical professional).

My own reasons for quitting my morphine medication was based primarily on the number of side effects I was suffering along with the fact it did not really help with alleviating my pain. Contrary to popular belief, morphine cannot and does not reduce a patients pain, it simply masks it. It is not an anti-inflammatory type drug, it is narcotic based. When you have an injury that is causing acute pain, drugs such as anti-inflammatory NSAID's can be used to reduce inflammation which in turn can alleviate acute pain.
When you have a headache and take paracetamol/acetaminophen, this again reduces the effects of acute pain.
With chronic pain, morphine has no 'healing effect' and being narcotic based, simply induces a state of euphoria, the amount which is dependant on the dosage and the persons tolerance level (which increases over time).
In my case, I simply get a slight "buzz" 40mins (almost to the second) after taking a dose of OxyNorm. The pain is still there, I just don't give a damn about it for the duration of "the buzz". And there in lies the first problem.

Narcotic based drugs are in-effective in the treatment of long term Chronic Pain. They are can be fine for the treatment of acute pain because that would indicate a short term usage, but there is a fine line between 'short period' and being effective. The longer you take the drug, the more chance you have of becoming addicted to it, and the harder it will be to stop taking it without side effects.
Over a period of time, the body builds up a tolerance to the morphine, so in order to induce the same level of "buzz", you constantly need to increase the dosage. There are always side-effects with narcotic based drugs, and especially with morphine, so the more you increase the dosage, the more these side effects become apparent. (The side effects effect different people in different ways. Some are lucky in that they don't even notice the side effects but because of the chemical make up of morphine, they will always be there). ]]> morphine once you reach a certain dosage level. Again, there are side-effects when stopping taking any narcotic based drug. These side effects when stopping can induce any number of conditions, some of which can be fatal. With morphine, common side effects of withdrawal are psychological based, often causing depression and leaving the person in a potentially dangerous mental state (which is where the possibility of fatality can occur). Going "cold turkey" might seem the brave and quickest way to stop taking your drugs, but it can have potentially life threatening consequences.

There are some people who can just stop taking their drugs who do not really notice the side effects of doing so, but this is not considered to be the norm. It effects different people differently and caution should be exercised at all times.

Although not narcotic based, the drug Pregabalin, which is often used to treat neuropathic pain (and is based on Gabapentin), belongs to a group of drugs that was initially used for the treatment of epilepsy. Although there is no narcotic effect, the sudden stopping of these types of drugs can actually induce seizures or fits which could lead to fatal incidents if it occurs in a dangerous environment. Therefore, just because you don't notice the effects when you take a drug (or when stopping), or you think you can "handle" the effects, it does not mean that there is not a danger present.

The recommended method of stopping your morphine is to reduce your dosage by 10% every two weeks. Assuming you are on 200mg of morphine, you would first reduce your dosage by 20mg to a new total of 180mg. After two weeks, you then reduce your dosage by 18mg for another period of two weeks.
This can be complicated by the type of morphine you are taking. For instance, I am taking OxyNorm, which comes in 10mg and 5mg capsules. (There are bigger dosages, but none smaller than 5mg).
This means I could not reduce by 18mg, and so in this case I round up to 20mg. When I get to 160mg, 10% of which is 16mg, I would round down to 15mg. So long as you remain pretty close to the 10%, you should not encounter any problems.

It can also get rather complicated with the odd 0.5mg popping up at times so it is probably best to create a chart to keep track of the dosages you are on, when you are next going to drop, and the level you are going to drop to. This also serves as a guide to keep you on track. (In a later post I will show you examples of such charts and how to use them, and even how to make them more effective at helping you stop).

With most narcotic based drugs, there is something called the pharmaceutical level. A simple layman's explanation of this is:

When your dosage is below the pharmaceutical level, the body does not even know you are taking the medication.
When your dosage is above the pharmaceutical level, you will feel the effects of the medication.

Having harped on about how you should not suddenly stop taking your dosages, you do not have to reduce all the way down to zero using the 10% every two weeks method. You just need to reach the "pharmaceutical level". The only problem is, this level is different for each and every patient so there is no 'defined level'. I have a very high tolerance to morphine which 'should' mean that I have a fairly high pharmaceutical level. The general consensus is when I no longer feel the effects of taking the morphine, I increase the percentage reduction to 50% for a day or so making sure that there are no negative side effects. You can also decrease the time between reductions from every two weeks (fortnightly), and in most cases, even to daily reductions.

It is not a simple case of saying "well I was on 500mg of morphine, and now I'm only taking 100mg, I can simply stop right now". Even a sudden stop from something as low as 20mg can induce psychological issues.
As I will discuss in another post, I have no option but to take OxyNorm, therefore I have to take my daily dose every four hours. When I have to drop down to the next level, I can even feel the effects of reducing by just 5mg on one of my 4 hourly doses. 5mg is less than 1% of my current total daily dose. For the first few days after reducing, that 5mg drop is really noticeable. That is an indication of just how important the gradual reduction of the dosage really is.

Again, if you are thinking of reducing your morphine (or any narcotic based drug), you really should go consult a qualified medical professional.
In summary, you drop every two weeks by 10% until such time you reach the pharmaceutical level at which point you can increase the level by which you drop. Once under the pharmaceutical level you can even try reducing daily, rather than fortnightly.
And once again just to make sure you understand the importance, don't even think of doing it unless you consult a qualified medical professional.

Finally: Is this the first real sign of progress?

2008-12-14T01:29:56Z

A successful day. My first real one since finishing the INPUT pain management course.
Everything worked today:

Completed a full stretch program.
Started ramping back up to baselines on circuits
No more withdrawal symptoms from Tuesday drop
No stomach complaints (as a result of the drop)
Had a full active day*
Pacing seemed to work.

So all in all, a success (especially when you base it upon the past few months).]]> Since returning from INPUT, my pain level has been up around the 6/10, with flare ups around 8-9/10. After dropping another 5mg on Tuesday, not only did I ache as if I had the flu again, but for the last two days, the spasms in my lumbar region have been driving me mental.

If there was to be a downside, it's that today is Sunday, and I will dropping another 5mg this Tuesday, which means if this week (and the last 4 months) is anything to go by, I'm going to be tagged out until Saturday again next week. But, I'm hoping that now I am beggining to ramp up the circuits back to my baselines, I'll be able to get back to increasing my pacing levels again.
(I had to introduce a set back plan during the last week of INPUT when my back completely gave way during the first few minutes of a gentle stretch routine!).

But, we don't do downsides any more do we? No. As per 'thoughts and feelings', we should try to manage those as much as we manage the pain.
Whilst I don't think for one minute that my pain is going to reduce in the slightest in the future, the one thing I am more confident with, is that I am finally starting to manage the 'negative' thoughts I have during 'flare ups'.
The morphine has not helped at all with the pain and has had a major negative impact on handling the 'negative thoughts' that occur. What makes it even worse are the side effects/withdrawal symptoms of trying to get off the damn things.

Still, again thinking positive, I can't be too far away from the pharmaceutical level. (I will create a separate post on the pharmaceutical level in the not too distant future). We must be talking weeks away from it now, which means one less thing to worry about and hopefully should leave me able to concentrate more on applying the techniques learnt at INPUT.

Apart from an hour and a half at the local supermarket, I stuck to my pacing plan for all my daily activities (i.e. tasks such as standing, sitting, bending, etc). It just wasn't practical to maintain that whilst in the middle of everyone else doing their pre-Christmas shopping, but I was mindful of my actions whilst in the store even if I was not able to go sit down every 20mins. (I'm still not too sure how I can approach that one even with pacing up). Remember the idea of pacing is to start off below your baseline and gradually increase your tolerance/strength to certain activities. What nobody at INPUT could tell me, was how to manage activities that cannot be paced up because of a physical limitation.

The main point being about today was that yes, I am still in a high level of constant chronic pain due to the amount of time I have spent weight bearing. But, mood wise, I feel the best I have done for weeks, if not months, if not years. And all because I feel more positive about being able to manage the chronic pain. It's like part of me is finally beginning to accept that the pain will never ever go away, and just maybe that I will be able to handle it.

The idea being not to let "the pain control me", rather "I manage the pain". Sounds almost like an advert for the INPUT Pain Management Course, but trust me, the jury is still out on that one.
Tomorrow's another busy day. Let's see if I can have two good days on the trot, and also how bad I react to it later on in the week.

OxyNorm Reduction Update: Week 14

2008-12-10T22:57:56Z

Current Dosage: 80mg

It's now week 14 of my OxyNorm reduction plan.
That's over 3months now in trying to come off the OxyNorm and it seems to be dragging on for ever. Mind you, you'll notice the slight "hiccup" in this latest update of the graph.
(Clicking on the graph opens up a new window with a larger version)

]]> Just before I started at INPUT back in November I caught a very nasty stomach bug, probably off my two boys who also went down with something. It basically knocked me for 6 and played havoc with my OxyNorm absorption. For a few days it was as if I had dropped the whole dosage again. I was suffering big time withdrawal symptoms and that in conjunction with the stomach bug was too much and I went back UP for the first time since I started dropping down.

I felt really bad because despite the pain, despite how many times I've thought about it, not once have I cheated and taken a single extra pill. It felt like I was cheating and I was utterly miserable.

For the four week duration of the INPUT Pain Management Course, I decided to stay at the same dosage. What with the travelling at the start and end of the week, the physiotherapy and general increase in physical activity, and the fact I was laid low with the stomach bug for the first week, I just felt it would be easier to stay at the same level, rather than having to deal with the course AND withdrawal symptoms.

It didn't matter though, with my stomach completely screwed up, I still had a few days here and there where absorption just stopped dead.

The biggest revelation to come from the course was Peppermint tea, bananas and prunes. I now have that for supper every night and touch wood, so far I've not had any 'issues' for the past two weeks. The longest my stomach has been stable.

INPUT + 5 days

2008-12-09T10:19:50Z

Ever since coming back from INPUT, I've been in agony with increased pain from my back. It did get quite hectic in the last few days of the course, and at first I thought that the travelling back from INPUT had caused me to jar my back. (I did have my "holdall-on-wheels with everything but the kitchen sink in it" with me on the way back, but apart from the short steps at the entrance to Waterloo station, I didn't carry it at all).

I've still been doing my stretch exercises daily, but laid off the circuits. I was already on a 'set-back plan' and due to the increase in regular activity since I've been home, I didn't really need the extra exercise. (I will however be starting them again today, but I'm still on my recovery plan and hoping to hit full circuits by the end of the week).

]]> I got to bed around 10.30pm last night after the boys had come back from Cadets, read my book for 30mins (relaxation ;) ) and then attempted to get to sleep. My back was quite painful, so in the end rather than tossing and turning I did "the right thing", got up, relaxed and went back to bed again finally getting to sleep around 1am.

The alarm woke me up at 2.30am for my next dose of OxyNorm but I drifted off back to sleep fairly quickly. I then work up at 4am with my back in complete spasm and my left leg numb from the toes upwards. I must have gone back to sleep at a funny angle and put pressure on the lumbar area. (Usually I can only sleep on my right side).

When the alarm went at 6.30am, my back was throbbing something rotten. I haven't overdone any activity since I returned from INPUT, and I'm not exceeding my baselines during my stretch exercise, so it must be a case of just waiting for my back to settle down after the activities of last week. I have though achieved more in the past week, than I have done over the last 6months, but I'm pretty sure that physically I haven't done anything to cause my back to flare up like this.

Again, it is early days. Attending INPUT does not give you an instant cure. I've already had one or two people ask me "Does this mean you're cured now?".
(I'm beginning to think I'm a bacon/gammon joint).
INPUT is not a cure for chronic pain. INPUT merely provides you with a set of tools with which to manage the pain and hopefully give you back some quality of life that was missing before. It can take anything from 3-18months for any benefit of the course to be felt.
I just wish I knew what I was doing at the moment to aggrivate my back. It might be just the weather, but that doesn't usually cause the level of pain and discomfort I'm in now.

Rest isn't an option either since having missed the last 4 weeks up by being up in London, I'm now busy trying to play catch up with all the Christmas preparations.

So far, physically INPUT hasn't done anything.
Mentally, I feel the best I have done since the operation in January. That in itself was worth doing the course. Let's just hope that this continues until the New Year.

Causes and Complications of Chronic Pain - How to Manage

INPUT at St Thomas' | Week 1 | Day 3

2008-11-12T23:59:59Z

Nightmare of all nightmares. Let me just say that day 3 and 4 didn't quite happen.
I'm writing this from home having arrived back from London at 2pm this afternoon. I ended up spending from 9pm last night (Tuesday 11th November) through to 11am in casualty at St. Thomas'. When I eventually got back to INPUT I was in no fit state to continue the course and they sent me home for an early weekend break with the hope I would be recovered in time to continue again on the following Monday.

As I mentioned yesterday, I was feeling pretty rough with some sort of stomach bug that I had probably caught from my two sons before arriving at INPUT. I'd got back to the room after yesterdays course, and had a snooze for an hour after which myself and two of the other guys decided to go out and grab something to eat. (The two guys being "Bernard"* and "Robert"* (the horse whisperer from Alderney.))

]]> We walked down Old Marsh Street and found a small cafe. The other two had fish and chips whilst I had a burger and chips washed down with a few cups of tea. The food was nothing special, but it was good home cooking and a damn site more palatable than the 'stuff' that Toms was serving up. Several other people were already complaining that they felt ill after eating what they called "lunch" yesterday. When I got back to the INPUT accommodation, I was feeling really low and went to lay down.

Unfortunately I started vomiting which in itself isn't a major issue, except that after the last surgery I had in Jan 2008, I have a small internal hernia where the surgeon made an anterior approach to my spine. After an hour of vomiting, I was in complete agony. I went over to casualty to see if they could give me an antiemetic to stop the vomiting but there was a 4 hour wait just to see the doctor which took me up to 1am. The doctor then wanted to make sure that the hernia had not ruptured any further and transferred me to the ward until I could be seen by the surgical team. At least up on the ward I was given a few shots of an antiemetic injection which stopped the vomiting dead, which meant I wasn't straining the hernia in my stomach.

The surgical consultant eventually arrived at around 10am and his first words were "I don't think it's appendicitis so we have nothing to worry about". I asked him if he had me confused with another patient since I was waiting for an ultrasound to see if I had damaged a hernia further. He then got all flustered, made some excuses and said he'd arrange for an ultrasound. By this time I was majorly peeved and said since the antiemetic drug they had given me was working fine, there would be no need.

And if anyone needed an example of the "instant friendship" that is formed between the members of the course, "Bernard" and "Robert" proved the point last night. They both insisted on coming over to casualty and sat with me until 2am despite me talking into a vomit bowl for most of the night. I can't thank the two guys enough for the company and for the concern they showed. It was much appreciated.

The night certainly provided more entertainment than was available in the TV room. Apparently the computer system that controlled the ambulances for some parts of London went down and that left Guys and St Thomas' casualty covering a large chunk of the area (hence the 4 hour delay before I was seen by a doctor). It took almost 45mins just to see the triage nurse.

My 'fragile' stomach wasn't helped by some street bum coming in and sitting 3ft away from me absolutely stinking as if he'd lost total control of all bladder and bowel functions. To say he had me reaching for the "vomit bowl" was an understatement. Every time my stomach settled, I'd get a waft of his 'odour'.

I'm not complaining about the waiting times either. The staff were marvellous. Overworked and underpaid, but marvellous none the less. (Apart from the consultant who was as effective as a chocolate fireguard. Not only did he not have a clue about anything in my notes. When he eventually arrived at my bedside, he was streaming with a cold himself, sniffing like a snotty little kid without a hanky. He then proceeded to sit on my bed about 2ft away from my face coughing and spluttering away like I needed to catch something else for the fun of it. He was going to send me for an ultrasound, but since the antiemetic had stopped the vomiting, that had stopped the pain from the hernia so I just asked him for another injection and to let me go.

When I eventually got back to INPUT, I looked (and felt) like death. They knew I had been fighting something since the start of the week and advised me to go back home and rest for a few days and hope I would recover in time for Monday. What surprised me was when they told me that if I did not recover, or if the other members of the course didn't agree to me coming back, I would probably never get to complete the course. The course costs my local primary care trust around Â£7000 for the 4 weeks and once you start the course, if you have to drop out for whatever reason, you don't get another go at some point in the future. (There have been extreme circumstances in which some people have been allowed to restart the course but these were few and far between). That had me worrying in case I didn't recover in time for Monday.

Needless to say, there won't be a post for Week 1, Day 4 so I'll be back on Monday night with Week 2 Day 1.

INPUT at St Thomas' | Week 1 | Day 2

2008-11-11T19:15:04Z

Sleep was most definitely not an option last night. All in all I think I managed about two hours sleep tops. I was suffering with the stomach bug, and it's severely affecting the absorption of the OxyNorm so I was getting withdrawal type symptoms on top of everything else. But on a more positive note, my back had not reacted to yesterdays activities as much as I had expected.

For day two, we had the following to look forward to:

An introduction to circuit training (the last time I had done circuits was back in 1999 during my rugby days with Calne RFC.
Talks on Medication and a review of my medication.
Making Changes
An introduction to "pacing"

We were scheduled for a 5pm finish, but I was feeling so rough I doubted whether I would make it through the whole day. I decided to go for a cooked breakfast over at Toms with two of the other guys and just hoped that I could keep it down (and in !!). Tom's is the name of the restaurant attached to St. Thomas' Hospital and apparently serves the same food as served to the patients.

]]> As far as meals at INPUT are concerned, you are provided with bread, milk, tea, coffee and serial for breakfast. Lunch is ordered from the hospital kitchen, (btw INPUT food will have a whole post of its own at some point). In the evenings you are left to fend for yourself. You only have a microwave in the flat, so unless you like living off ready-meals, you need to either go to Toms2, or trot off into London for something to eat.

Circuits was a nightmare. I felt so crap with the stomach bug that my back was the least of my problems. I kept having hot and cold sweats and could hardly focus on what the staff were saying. I was definitely now doubting if I would last the whole day. I'd been waiting months to get onto the course and I would be dammed if I would give up this easily.

One of the staff got everyone's backs up today during the very first lesson of the day. It didn't bode too well for the rest of the course/day. "She" kept talking with a "holier than thou" attitude and talked down at everyone. I even got a telling off which got right up my nose. (She was promptly given the name of "Vinegar Tits" by one member of the class and the name stuck for the duration of the course. I'll refer to her as "VT" from here on in. (There will be more stories about 'her' over the next few weeks I am sure).

One of the guys (who I will call Bernard*) has Type 2 "Brittle" Diabetes and for some time has used a walking stick. His knees are basically shot and grinding away each time he walks on them and are 'just' one of the sources of his pain. During circuits, one of the exercises is "leg lifts" which involves laying down on an exercise mat and strapping a small weight to your ankle and surprisingly enough, lifting your leg. Now "Bernard" had not been down on the floor in some years (4 I think), so it was a major achievement for him to even make it down to the floor. Unfortunately, he had forgotten to bring over the ankle weight and so I walked across the class to fetch it for him. As I was passing it down to him, "VT" came rushing over and rather rudely almost shouted at me, "Don't do that for him, he needs to do it for himself!". She then bent down to him and chastised him for not getting the ankle weight himself. She was extremely condescending.
Now excuse me. But this was the first time we had done circuits as a group. It was also the first time in about 4 years that "Bernard" had been near a floor. It was also just our second day in class and hardly the encouragement that we needed.
The point that "VT" was trying to make was that we should plan our activities beforehand in order to minimize any possible pain. It would have been much better if she had said something along the following lines:
"Hey Bernard, that's a great achievement to get down on the floor after all these years, it must have taken a lot of effort, well done. Now I know this time you forgot to get the ankle weight, but use that as an example of "planning prior to an activity". If before each activity you think about what is required, you will over time reduce the possibility of causing more pain. Why make two trips when you only need to make one".
Common sense really, but instead, "VT" chose to talk to "Bernard" and me like we were children, chastise him and do nothing for his confidence for the rest of the course.

Lunchtime arrived I couldn't face the food from INPUT and began a daily trek to Subway. At least there I got something with some flavour and taste.

The subject of "Pacing" went down like a lead balloon. Personally, I couldn't see how I was going to apply pacing to everyday life but I understood the general concept. I won't cover it here, but basically it means setting a baseline for each and every activity in life, and working to that baseline. You gradually increase your baselines which over time allows to increase that activity. I'll come back and cover this in more detail later on (probably after the course).

I got back to my room about 17.30 absolutely shattered. We're going to go out tonight and find a cafe about 10mins from here to have dinner. We can't face any of the food in Tom's (as food is prepared by the same kitchens that produce the hospital food). We did have a look at what was on offer and it didn't look too clever. NHS Hospital food at St. Thomas' isn't the best which is surprising for such a large prestigious London hospital.

* As I mentioned before, I won't use real names to protect the identity of those on the course.

INPUT at St Thomas' | Week 1 | Day 1

2008-11-10T21:44:27Z

Well so far things haven't gone too well. The two boys were off school last week with a tummy bug and I'm sure they've given it to me as a going away present. I feel dog rough and I'm sitting on the train heading towards London Waterloo at 7.30 in the morning.

Having made it to INPUT, I met with all the group. Looks like I have a great bunch of people on my course so that in itself is a relief. I won't be using anyone's real names in my posts but I'm sure a few 'nick'/'pet' names will creep in.

The morning consisted of filling out questionnaires and a PT assessment. My back actually felt quite good today so I kept wondering if they were looking at me thinking "what can be wrong with him?" Having said that, my back didn't take too kindly to the 'stand-ups' and is already beginning to get painful.

We were also given the keys to our rooms. Seems to be tidy and 'functional' and everything you'd want. Not too sure about the view from the room. My room is overlooking the new hotel being built on what appears to be the worlds busiest roundabout. Judging by the number of ambulances that went past during the first 10mins I was in the room, the entrance to the A&E department isn't too far away either. At least I'm not looking at "Big Ben", but you can still hear the chimes quite clearly. I suspect that will make it fun trying to get to sleep.

We had our first "relaxation" session today. Lying on a mat, on the floor, in pain, isn't the best way to get into a relaxed mode. We already have called these sessions "story time" and today's was something to do with a "log cabin on a mountain". For some daft reason, I couldn't get an image of Julie Andrews out of my head along with the theme from "The Sound of Music". All in all, not very relaxing at all.

Spent quite a lot of time in the lounge whilst we were all 'assessed' and discussed our medications. Since I am already quitting the OxyContin/OxyNorm, mine was straight forward.

Am back in my room after the first day and I feel as rough as a badgers bum. My stomach is going mental and I don't think any of my meds were being absorbed. So on top of the bug, I'm getting withdrawal symptoms just to complicate things further.

It's gone midnight and yes, you can hear "Big Ben" and yes, A&E is very close. Between 11 and midnight, I just counted 42 emergency vehicles. Somehow I don't think sleep will be an option tonight.

Major Withdrawal Problems

2008-09-03T23:15:04Z

Absolutely typical... (Well for me anyway...)
Perhaps changing from the OxyContin (The timed release OxyCodone Hydrochloride) was a bad idea.
The bowel problems I was having before I changed to the Fentanyl patches is now worse than ever and I am suffering from major withdrawal symptoms nearly every other day. There doesn't seem to be a pattern as to when the OxyContin is being absorbed or not. I'm taking the tablets as prescribed and sometimes they work, sometimes they don't... It just doesn't make sense.

My doc has taken me off the OxyContin and placed me on the equivalent dosage of OxyNorm (The quick acting, short term version of OxyCodone). After speaking with a specialist who deals with chemical dependancy, it transpires that there has been a big increase in people reporting problems with OxyCodone (specifically OxyContin and OxyNorm). Apparently after prolonged usage and occaisionally after changing the dosage, the body for some reason starts to react to the drug.

My GP has converted the amount of OxyContin into the equivalent amount of OxyNorm and I now have to take the quick release version every 4 hours. That is going to really mess my sleep patterns up for the next few months.

What it has done though is make my mind up. I've had more issues with the "pain medication" that I have had with the back pain. I'd rather deal with the back pain than all the hassles that the drugs are causing...
So to that end, I am going to start reducing down the amount of OxyCodone. I have an appointment with a "drug" specialist next week and we'll see what they have to say.

It might be a while before I get round to publishing a new post until I get a handle on things. I've been feeling as sick as a pig for the past few days/weeks and the side effects don't appear to be easing off any just yet.

Round and Round, Up and Down, Highs and Lows.

2008-08-25T21:34:21Z

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I don't know if it was just the bad timing of my son being taken into hospital causing a lack of sleep (and an increase in stress), but switching back to tablets again caused massive problems for me today. I felt like a complete jibbering wreck when I got home from the hospital at 10.30am this morning having spent the night at the hospital.
I did grab an hour or so's sleep on a camp bed next to my son after they finished the last test/examination of him around 3.15am and I was awake from around 6.40. It was far too light in the room to go back to sleep so I sat reading a book.
]]> I sometimes wonder if giving up smoking right now was the best time, but then having gone outside to see if I could "steal" a cigarette off someone already smoking and catching a whiff of some guy stood near the entrance, that soon changed my mind as the awful smell hit me. But I think it's the nicotine my body was craving for.

My back isn't an issue at the moment compared to the complications I am getting from the pain killers. I'm off to see my doctor this afternoon and I'm going to bin ALL narcotic based drugs regardless of how they are administered. It just isn't worth the hassle that comes with them. For some reason I'm just unlucky enough to be in the small percentage of people that react to certain medications.
As you'll find out, "unlucky" is my middle name.

At the moment, I feel like I'm on some massive emotional roller coaster. I don't even think or care about my back and some around me might say that's a good thing. But I don't want all the extra hassles I'm getting along with the high's and lows from the morphine. Trust me, I feel like I'm being pulled through a wrangle. So this afternoon, I'll see the doctor and tell her straight. They should have listened to me back in January/February. Narcotic based drugs are a big no no with me, full stop.

Ripping the Patches Off

2008-08-24T05:51:54Z

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Sheesh, Fentanyl patches eh? Will be a lot better than pills right? Less side effects they say? You'll have less problems?
Try pulling the other one.
Two days into the patch and I ripped the damn thing off.

I have not fell as ill as I did Sunday morning for a long time. Stomach pains, cramps, swollen joints (mainly ankles), dizziness, hot and cold flushes. flu like symptoms and a few more as well...
They may have got the dosage completely wrong, which could have caused problems, but I don't care. The idea is for me to be off any narcotic based drugs within 2-3 months and I want to manage the pain some other method. I've always been against narcotic based drugs and was unsure about moving to patches.
Now the main reason for the patches was because there were some side effects with the pills due to complications with my gut, but trust me, compared to the side effects I experienced with the patches, they were nothing.
I think I'll take the lesser of two evils and stick with the pills for the time being and gradually ramp them down.

Narcotic based pills DO NOT reduced pain, they MASK pain, Anyone that tells you differently is either a drug company or a pusher.

Starting on Fentanyl Patches

2008-08-22T01:05:23Z

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Ever since moving back from the US I have always resisted narcotic based medications.
After my last operation, I'd been placed on Oxycontin and Oxynorm, but I have been having a bucket load of complications with those.
So today I started on Fentanyl Patches and we'll see what happens.
Personally, I don't want to be on any any narcotic based stuff, but my new pain guru is insisting that it's the right thing to do.
I'll see what happens with the patches, as perhaps, it was the oral medication causing the complications and bypassing my stomach might actually mean that they work.

I'll post a bit of history on why I'm switching in the near future.

The only thing with the patches is that my daughter thinks I secretly started smoking again and that these are the anti-smoking ones. She's the main reason why I could never start smoking again, I could never face the disappointment she'd have if she ever found out.

It apparently takes about 24hours for the first patch to start working, so I've quit the slow/timed release (Oxycontin) and I'm just taking the quick release (OxyNorm) as and when I need them. It's 2.40am at the moment so I can safely say it hasn't kicked in as of yet. But I'm not getting withdrawal symptoms, so it must be starting to work in some fashion.
Each patch stays on for 3 days apparently, and I can already see a possible reaction to the adhesive. Nothing is ever simple in life is it.
Anyway, time for a hot cocoa and an attempt to get back to sleep. I'll update in a few days when I should know if these patches are any good.

Another whining moaning hypochondriac? So Just What is Acute Pain?

2008-08-21T11:50:00Z

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Whining and moaning? Yes, maybe.
Hypochondriac? No. I prefer to say "misunderstood".

I've have though decided to do something about it since it recently occurred to me that I don't have a choice. I was literally going crazy with all that was going on in my life as my wife (also known locally here as 'the angel'), will verify.
By creating an online journal about how I am dealing with my Chronic Pain, I'm hoping that (1) It helps me and (2) that it might hope someone else in a similar position. It will take a few weeks (or months) before it develops an identity and hopefully a sense of direction. I can only apologise up front for the apparent randomness that will be presented to you when you visit the site until such time I decide on a clear path on my road to recovery, (assuming some other bugger doesn't keep moving all the signs).

I've known for a few years now that I've been in pain. Sounds daft I know, because it bloody well hurt and it continues to hurt, but what I didn't know was that I was suffering from Chronic Pain. I didn't really understand what Chronic pain was.

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What I had not realised however was there is a distinct difference between "acute" and "chronic" when it comes to pain.

Acute Pain and Chronic Pain. What is it?

Think of that little paper cut you've had before on the end of your little pinky when folding a sheet of A4/Letter paper. It hurt like hell compared to the time you broke you ankle falling off your bike in the back yard. A broken ankle sounds like a much more serious injury compared to the paper cut, so why is it that we sound like we are dying a nasty death with the paper cut, but want to carry on cycling/running around when we break our ankle?

Note: I'm talking about a minor broken ankle here, not some "compound dislocated fracture" or similar. I'm also assuming that you didn't actually attempt to go cycling/running on the broken ankle as that might have changed your opinion on just how painful it was.

Apart from the obvious medical reasons that go some way to possibly explain , such as for example a greater number of nerve endings near the surface of the skin on the finger, compared to those surrounding the ankle bone, there is also the fact that we can see the injury.
Think back to the days when you were younger. You'd come running in from the back yard and your mum would scream at the sight of the blood running down your head from a deep cut you'd suffered falling off your bike many hours earlier. Now despite the fact it had happened several hours ago and it hadn't bothered you one bit because you hadn't noticed it before, it was only after your mum had pointed it out to you and had ran to the bathroom and seen it in the mirror for yourself, that you went into a frenzy and attempted to convince the world your life was over and you'd had it. So there is also the visual aspect of an injury. We can see the effect of the paper cut more so than the initial injury to the ankle.

We are often asked by staff working in the medical profession, "on a scale of 0 - 10, 0 being no pain at all and 10 being the worst pain imaginable, how would you describe your pain?"
For some strange daft reason, the majority of people would swear that the paper cut to the finger would score higher than the broken ankle. Medically, that is because the paper cut causes a higher level of 'acute' pain than the broken ankle.
The point here is that both injuries cause 'acute' pain, just at different levels.

Within a relatively short time, the paper cut which started out life scoring a massive 10, it rapidly works its way back down to 0. With any luck, the skin heals over leaving the faintest of scars (if at all), and you'll not be reminded of it ever again.
Our ankle injury too eventually travels back down towards 0, but this is where we start seeing a difference to our apparently more painful paper cut.

As the swelling on our ankle develops, the level of acute pain may well increase from its initial value. After having the ankle placed into a cast, we might develop other pains associated with the initial injury such as itching, so now we have two sources of pain to contend with, but they are still incidents of 'acute' pain. Many months after the cast has been removed, the bone solidly repaired, it begins to develop a dull ache during the winter months as the onset of mild arthritic pain begins to form.
As is often the case with broken bones particularly around joints, arthritis can form many months or years after the initial injury. And again, this still causes a finite level of 'acute' pain. Unlike our initial ankle injury though, this isn't going to go away. We can manage the pain, but most likely we are going to be stuck with it. It won't be that "man flu like" 10 out of 10 pain from our paper cut and it might well only be a 1 out of 10 most of the time, or a 2 to 3 out of 10 during really cold spells, with the occasional 8 to 9 for a few seconds once in a blue moon for some unknown reason.

It will initially feel no where near as bad as our paper cut nor the original ankle injury but then time takes over. The pain always seems to be there, and it's there when you don't want it to be there. It'll be there when you want to go to sleep. The dull ache and throbbing that usually on it's own wouldn't even make a 1 out 10, but because you're in bed trying to get to sleep, it's there banging away like a drum, making no noise, yet keeping you from your sleep.
You'll be sat at your desk writing that report, when the dull throbbing takes over, breaking your concentration and you need to go walk it off or go pop a few painkillers.
Despite the fact that it very rarely reaches an acute pain level above a 1 or 2 out of 10, it is there constantly, 24 x 7, 365 days a year for the rest of your life.
You can't escape from it, ever.
When someone asks you many years later how the ankle is, you'll say, "Oh, it's fine, I can't even feel it now. Just a slight bump where I banged it", despite the fact you haven't slept for the past week because it's been snowing and the cold weather has increased the throbbing to a massive 2 out of 10. But it's there, constantly reminding you of the day you fell off your bike 30 years ago.

Now the pain begins to traverse from 'acute' to 'chronic'.

How 'acute' pain effects each person is different.
How 'acute' pain is measured by each person is different.
Each 0 - 10 scale is different, since where there may only be a finite number of points between 0 and 10, the effect and value of pain at each level is different from person to person.
One mans 5 is another mans 2 is another mans 8.
'acute' pain is personal.

"Chronic" pain however is different in that it is an 'effect'.
"Chronic" pain effects each person differently.

So I don't think I'm a moaning, whining hypochodriac. I'm much worse. I'm a guy who has suffered from "chronic" pain for the past 7 years, I have an internet connection, a link to Google, and I'm not afraid to use it.
Whereas I can clear the cache of my browser once I've finished my research, if I could only convince my brain to forget about "chronic" pain, I'd be cured and I'd get my life back.
If only eh?

First of Many

2008-08-17T18:35:00Z

So there is me, creating a new blog about my trials and tribulations as a long term sufferer of chronic pain. So what do I decide to do? Create a new site to blog about it.
Now I'm not so sure as to what is causing the most pain. The software and server set up, or my spine.
The Jury is out.

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There will be a lot of changes being made which will effect the functionality of this site.

To be honest, I don't know how you found the site anyway. No one knows it's here.

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