The pain of painkillers

I know it’s been months since I last posted anything, however I thought that I might just skip ahead of what’s happened over the last few months and discuss something that is in topic in my life now, and it’s quite a serious topic; Painkillers.

Disclaimer: ** Please take note that all medications should be taken seriously and under the advice your doctor. These views are my own and based on my personal experiences. The medications I am speaking about are addictive and should never be abused or taken without your doctor’s consent. **

At some stage in our lives, we’ve all taken a couple of panadol, maybe even some panadine (panadol + codeine), to get us over that cold, or headache. Some of us have even taken much stronger pain medications that have been prescribed by our doctor. I’m planning on discussing not only how painkillers work, but how our bodies, mine in particular react to the medications and when we deprive our body of these ‘ingredients’ we use frequently and long term, when taken by people, when they live with chronic pain.

When we take pain medication, it doesn’t have an effect on the part of the body that is hurting; it takes effect on our brain. To be precise it takes effect in ‘three specialized regions of the brain: the physical sensation region that identifies and localizes the pain (somatosensory cortex), the emotional feeling region that experiences suffering (limbic system), and the thinking region that assigns meaning to the pain (frontal cortex)’. Source

To simplify this, any type of analgesics (painkillers), don’t effect the area that’s injured, they simply block the pain signals going to the brain, or interfere with they way the brain interoperates these signals. This in turn affects the body’s nervous system so that pain messages are scrambled.

There are two types of painkillers: Non-narcotics and Narcotics. I'm mostly on the latter unfortunately. I won’t go into the difference between the two, too much because I want to share my story. If you’re interested in the types of painkillers, you can find infomation here.

As I’ve just mentioned I'm mostly on the narcotic variety of painkillers. Narcotics can involve much more than the generalised assumption of opiates like heroin or morphine etc but it also includes codeine which in lower doses is available over the counter at your pharmacy and even your body’s natural narcotic; endorphins.

Over the past 11 months, my body has endured an increased amount of narcotic medicine including oxycontin, oxycodine, and also morphine and pethidine while hospitalised but also during this latest experience, it’s been the highest dosages of this forms of painkillers I’ve ever been on. While my pain medication expands much beyond these, in the form of various types of muscle relaxants and anti-depressants, it’s reducing the oxycontin that has the most effect on me. Oxycontin is similar to morphine, but it’s a slow release medication, that has a 12 hour controlled release of its ingredients to give you greater control over your pain long term.

Over the past 8-9 weeks I have started my journey into reducing my body’s dependence on this drug. As pleased as I am to say “I feel that I no longer need the same amount of this medication anymore”, I know my body is addicted to it. This addiction means that to reduce the side effects of coming off this medication, I have to take it slowly and carefully, so that I don’t make myself ill and cause serious harm to my body. Because of the type of pain and injury I have, this is the 4^th time I have started the withdrawal process of coming of my pain medication, and I hope it’s to be the 4^th time, I will do so, successfully. At this moment (8^th June 2010) I'm 1/3 of the way on this journey of reducing my pain medications, so I can once more become effective and efficient in my daily life. (Although I know many people function quite normally on these types of medications, I still find it quite foreign, and don’t like the way it takes control over my body).

The first two times I have done this process quite quickly and with little side effects as I was not on the oxycontin for any longer than 4 months. During my 3^rd experience with this drug, I was taking it for a period of 10 months before I started “coming down” and I can honestly say I really felt the side effects of reducing the meds too quickly. I’ve experienced vomiting, diarrhoea, nausea, cramping, headaches, hot and cold sweats, and loss of appetite to name a few. This was 2 years ago. I remember while going through this, that I said I was never going to take oxycontin again, if I was to be in a similar condition. Well here I am again. Having reduced my intake by a 1/3 now, very slowly some other side effects are starting to show as I continue to reduce my body’s dependence on the drug. I'm already starting to experience:

• Nausea
• Cramping
• Diarrhoea
• Headaches
• Fatigue
• Night sweats

…and this is just so far. Coming off oxycontin and its withdrawal is often compared to a person going through a ‘heroin withdrawal’ in terms of its intensity. The only we have some control over this experience is to take the time to reduce the medication slowly, in small amounts and over a long period of time. Sometimes I think it would be easier to come of the medication easier and much quicker by reducing it every 3-5 days as opposed to every 1-3 weeks and just get the withdrawal pains over and done with instead of drawing it out, but I have to remind myself to do it the healthy way that wont harm my body, or stress it out too much! I hate to think what it has done to my overall health in both my brain and my organs!!!

I hope I’ve explained this so it translates that we have to be aware of what we take to manage our pain, but most of all like food – make us aware of what we are putting in our body’s and its affects afterwards.

Thanks for reading, I appreciate it and any other input, or expiriences is welcome so feel free to comment!

- Jen xx

**note: when I write my blogs, I write the way I would speak most of the time, and I apologize if things don’t quite make sense or don’t come out clear. I have a tendency to write at night, and this is when I'm most medicated.

lyrics...

Do you ever have one of those day's where your listening to music and feel it somehow reflects your life? well i was watching idol last night and caught some young boy singing Gnarls Barkly's Crazy and i felt thast how i feel.

you see the lyrics go:

I remember when, I remember, I remember when I lost my mind
There was something so pleasant about that place.
Even your emotions had an echo
In so much space

And when you're out there
Without care,
Yeah, I was out of touch
But it wasn't because I didn't know enough
I just knew too much

Does that make me crazy?
Does that make me crazy?
Does that make me crazy?
Possibly

And I hope that you are having the time of your life
But think twice, that's my only advice

Come on now, who do you, who do you, who do you, who do you think you are,
Ha ha ha bless your soul
You really think you're in control

Well, I think you're crazy
I think you're crazy
I think you're crazy
Just like me

My heroes had the heart to lose their lives out on a limb
And all I remember is thinking, I want to be like them
Ever since I was little, ever since I was little it looked like fun
And it's no coincidence I've come
And I can die when I'm done

Maybe I'm crazy
Maybe you're crazy
Maybe we're crazy
Probably

Now Ive sort of interpreted that as -

Remember when we were were younger, and had no care in the world?

Now that we've grown older and the damage is done, we can't change what we have done but we know how to turn our life around...

Enjoy your life, now that you know who and what's around you,

Theres a reason for this, and you have to get through it because you set out to achieve your goals....

Now I'm not quite sure why this song hit me like it did, maybe the chorus because Ive been thinking a lot about depression lately. Am I depressed? Am I falling into that category? Ive been at home for two weeks now. One week was teaching rounds, which i couldn't do, and the second i couldn't physically get to uni, But in these two weeks my pain medication has doubled and I'm sleeping from 3/4am through till 5-6pm. There hasn't been much of a reason to get out of bed except take more pain medications and feed the dog and the cat. I don't know if I'm so drowsy because of the massive amounts of pain meds? (which are helping!!! but no one can live this way), I'm barely eating, because when I'm in pain I don't get hungry and one of the side effects of one of my medications is a food suppressant.

I am going to see my GP on Monday to try and sort out some sort of middle ground. The amount of medication I'm taking is helping but it isn't sustainable for any body..

20mg Oxycontin - am/pm

12.5mg topamax - pm

50mg allegron - pm

+ imobrufen, Valium (7.5mg) and endone (10mg) when needed. So far Ive been taking the valium morning and night, but I've cut down on the endone because it makes me itchy.

...and as far as they can see (with MRI) there isn't anything wrong physically with my hip except swelling. It upsets me that people just pass me around doctor to doctor. "Here, go see this person"... they dont care that its going to take 6 weeks to get an appointment. That's what they've done this time. I'm supposedly off to see a chronic pain doctor who deals with soft tissue injuries. I'm most likely going to get the same pain spiel from the other pain specialists Ive seen.

until another day, im off to see the neurologist tomorrow, or shall i say today... lets see what he has to say for him self.

signing out,

Jen xx

What do you do?

I'm writing this blog in desperate need of help. I'm quite aware that hardly anyone reads this, and for those of you that do, Thank you. It would mean a great deal if you could just post a little comment at the end so i know who my audience is.

Question: What do you do when you need to go to emergency at your local hospital (the Alfred) but you know you are automatically going to be in for a 4-6 hour wait because your a 'chronic pain' patient, yet you cant afford the $500 odd dollars to go to your private hospital because they will charge you this much just to be seen, medicated and most likely be sent on your way just in Emergency?

Answer: You take as many medications as you can in a specific time limit, and monitor at home. Or as I like to phrase it.... you suffer until your so medicated you give up.

You see I was supposed to be admitted to hospital on last Sunday. I rang my surgeon on his mobile, told him I could no longer cope with the pain by myself. He said he would arrange for me to be admitted at the private hospital. This is all fine you see. He rang the people who arrange your admission; they call you and get it all organised. Now because I was coming in for pain management and to find out why I was in so much pain, it was difficult to see if my health insurance would cover it. Between the admin staff and nurses, my mum and I decided it was best if I was admitted the next morning as we could confirm with the health insurance company that I would not be $7500 out of pocket instead of $500. This was all fine, I was happy with this arrangement. We rang Monday morning only to find out my surgeon, had not filled in or signed any paperwork which meant the nurses could not administer me medications etc. As I was getting more annoyed we were told that he was away that day and could not be contacted. Since then I have not heard from him. I have not been admitted to hospital. I have put up with the ever increasing pain. I am slowly getting more depressed about my situation and how to cope with it all (again).

Almost two years ago after my second hip operation and $50,000 odd out of my parents pocket I signed up for private health insurance. $35 each fortnight is direct debited out of my bank account for basic+ (plus) health insurance. this means for each calendar year I get unlimited hospital cover (including doctors fees, surgery and anaesthesia fees etc) for a once off payment of $500 (or 2x$250 depending on your choices when signing up...), ambulance cover and a range of extras cover such as dental, optical, physio etc. This hospital cover was extremely handy when I had my 3rd surgery. However if you arrive at a private hospital emergency room you are not covered for any scans or treatment you receive in the ED. For Epworth hospital this out of pocket charges is also around $500. As a student with no job, because I'm unemployable as I'm a liability and also a full time student and who has a mother living on an allocated pension, neither I nor her can afford this.

Right now I'm in 10/10 pain, and I've taken all the possible combinations of pain medication that I can take without overdosing and can’t do anything further than wait it out, and wait for it to pass. I can’t afford private emergency department costs and I don’t have the energy to wait or to be pushed aside and wait in a corridor in a public hospital.

(my bedside table as current, no 22 year old should have to live like this.)

You see, I have a big issue with the Victorian public health system because I spent from November 2007 through till august 2008 going in and out of hospitals because I was in severe pain, of which I knew something was wrong. Straight away they shoved me into the chronic pain patient list of which I have remained on ever since and continue to be treated as such. 'Chronic pain is classified as having constant pain for a period of more than three months' of which I had yes, had pain for various reasons in the past but there was a fairly good reason for that pain and that was because I had shredded the cartilage in my hip. SO for a good 10 months I was in and out of hospitals being poked and prodded, scanned and radiated and nobody could find the reason why I was in pain. The doctors even sent me to a rehabilitation hospital of which I went berserk at their reasoning for it (which was I needed to stregthen my core which in turn help with my hip pain), by saying 'You cant rehabilitate something that you don't know what's wrong or what's affected!!!'

I eventually proved this theory right because after 2 and a half weeks of physio twice a day, psychological assessments, I eventually told the doctors they were stupid for not realizing this and it was a waste of a bed that someone ACTUALLY needed.

Eventually months down the track and one too many doctors seen, I had my original surgeon do a specific test which showed I had boney growths growing inside the cartilage, giving a bone on bone feel, and also a severe build up of scar tissue (over a handful which was later removed)which was inhabilitating movement. If only they had trusted me when I told them something was wrong 10 months earlier, we could have saved a lot of taxpayers moneys, time, effort and my mental health. They also realised the pins they had inserted into my femur a little over a year beforehand were beginning to become infected. Surgery fixed me right up and for almost a year, life began to return to normal. Until now.

That's right I can tell you where you where the best nurses are, which Melbourne hospital has the best food, right down to the who the nicest people are that take you places within the hospitals (sorry I cant think of the job name...transporters?? you know who im talking about)

- Im hurting (in the heart and in my arse,leg and groin)

- im dissapointed in my surgeon

- im so worried that this new scenerio will have an outcome like last years, that it brings tears to my eyes.

What on earth did i do to deserve this? I know there is people out in the world much worse off than me. They suffer just trying to survive, but right now im having a 'why me' moment. And I think I deserve to have that moment, and think of how I might survive?

As im on crutches at the moment, im completly dependant on my mother, and she had already planned a 10 day holiday of which she leaves for tomorrow night. How the hell am i going survive that time by myself? Dont get me wrong, im glad she's going, she needs a break and I've got wonderful neighbours and i know if i need them to do something, they will, but what about in the middle of the night if something happens? what about during the day when everyones at school or work. I feel like i should be in my late 80's and frail... I still have to figure out how im going to get to Uni next week to do a presentation worth 60% on thursday. FML right now, FML.

Thanks for listening. You've made me feel much better and the pain is down to about 8/10.

Signing out,

Jen xo

Hospital. to stay? or to go?

NOTE: this blog has one MA15+ word in it. If you are my neighbor or someone I know well, I apologize in advance. I also apologize this particular blog doesn't contain much wit. Sorry

Hi all,
I've been meaning to blog again this week, but need to get into the habit I think of updating this just as I do twitter or facebook (well not AS regularly but I assume you get my drift).
So this week in my life, my pain has worsened. As well as pain in my leg, the pain has moved into my groin [which is like a neon sign saying something is wrong], it is around where the femoral artery sits along the hip line (you know the line in between your hips and your legs) and unfortunately and MA15+ rated along the soft tissue on the left side of the vagina.
I apologize for being a bit graphic but that's just how awkward this pain is. I feel like the last two weeks have blended together due to pain medication and constant changing of ice packs and of course sleep. Welcome to the life of a pain patient.
Highlight of last week however was a day trip to uni in Bendigo to hand in an assignment and do an oral presentation. I won’t go into much details except I was heavily medicated for my part of the group presentation and I slurred my way through. FML. The real highlight was that I got to see my friends, and they made me laugh.
On the weekend I had my MRI scan. I was in the machine for over an hour, which is extremely pain full particularly as you can’t move and you are having constant leg spasms. I also found out later I was supposed to have an injection of some sort of dye, which I didn’t get. Anyway I ended up having to contact my surgeon on the weekend saying I needed hospital help. 'I'm at the end of my tether with this current pain'. [NOTE to Surgeons: never ring patients from your mobile without blocking your number. otherwise they can contact you whenever they need (luckily for me he didn't block his number)] He organized for me to be admitted into the hospital, and very quickly I received a call from admissions confirming info etc, then the nurse manager called, and we all decided that it would be best for me to come in on Monday morning [today] as then I could confirm with my health insurance that I am covered. --> Mum got a phone call this morning saying the doctor hadn’t signed ANY paperwork, had provided no information about my medications etc, and was unable to be contacted today. The nurse recommended I stay at home where I have control of my medication and that if I had come in they would not be able to give me a pain relief as the doc hadn’t signed of given any info. Fantastic. That pretty much why I was going in there in the first place. Pain control and to find out why im in so much pain!

Now i'm stuck in a confusing mindset of if I go? - I will lose control of when and what I self medicate with. If I don’t go, will I be in the same place I am in now. I find i'm always stuck with the same thought when I need to go to hospital. Whats the point of it all? Can they help?

Signing out,

Jen xo

Sick of it...

A short blog tonight...
I'm sick of being in pain.
A quick visit to the surgeon on Thursday showed that he was not happy with my sudden increase of pain and decrease in mobility. To be honest. This scares me. i know when the pain moves into the groin, that this means trouble. I don't have time for another surgery. I took last year off uni, and i don't want to miss anymore. In the past 4 days my pain has gotten much worse. i have gone from limping to dragging my leg to relying on crutches to get around. My pain killer medication has more than doubled and after 3 surgeries and successfully withdrawing from medications, ill be looking at going through the process again. I know i cant prejudge whats wrong until i have the MRI scan on Saturday and get the results the following week, but I'm scared that if they find something, i will have to have ANOTHER operation, and if they don't find anything - why am I in so much pain and why do i have so many physical symptoms?
I'm sick of the pain, the routines, the vague memory, the forgetfulness and not being able to do anything productive. I'm sick of going through this whole process for a 4th time. what did I do to deserve this?

signing out,
Jen