The Pain Cycle Carousel

Pain management as defined stolen from Wikipedia: is a branch of medicine employing an interdisciplinary approach for easing the suffering and improving the quality of life of those living with pain.`

Since I couldn’t put it better, I’m going with that.  I talk a lot about pain in this blog and it’s a difficult thing to NOT talk about.

Chronic pain means persistent. Acute pain means, sudden onset.  Think of acute pain as a toothache, or a sprained ankle, or perhaps an accidental knife cut.  These things hurt. Sometimes they hurt incredibly bad. But you know in a few days, sometimes even overnight, the pain will be gone or will change from pain into a mere annoyance.

Hopefully most of you reading this have never dealt with chronic pain and I truly mean that.

There are many ways to describe chronic pain…it can be a stabbing, burning, deep throb, ache, and many more adjectives but you get the idea. The only unifying factor is the inability to escape from chronic pain. Because there is no escaping.

Sounds like I’m a drama queen, right?  Well, to be sure sometimes…many times I feel like a drama queen.  Suck it up! I say to myself So and so has xyz problem and never complains.  In the back of my head as much as I say that to myself, there is no way around it. It chases you, it smothers you.

You think at bedtime there will be peace and quiet and you can escape. But depending on the location and type of pain – no. I’ve rarely had a good night’s sleep in years. Each time you move, attempt to rollover, wake up to empty your bladder, the pain kicks in and the process to fall asleep begins again.

As much as I complain about being single, last night I woke up to use the bathroom, untangled myself from the tubing from my wound vac and felt searing pain in my left hip radiate around to the back and then into my groin. “Oh Oh Oh Oh God.” I involuntarily said. If the walls of my apartment were thinner or if I had a partner in bed, everyone all around would have thought I was getting lucky.  I carefully wiggled my way out of bed and while I’m not supposed to use it at all, my left hip and back are so incredibly weak I grabbed a hold of my walker and used it to help with the few steps to the bathroom.

Pathetic

Once back in bed, I shimmied into position, re-connected Vlad the wound vac, listened for it to kick start then took very deep, very long breaths trying to relax because the entire left side of my body was rather unhappy with me not to mention that it felt as though my wound were ripping open. As I lay there concentrating on breathing and wondering why I continue to be punished by pain I thought how lucky I am at the end of the day to not have a partner. I’d never sleep well knowing that my subconscious groans and whimpers would possibly wake them up.

Anyway I knew having my right hip replaced would be only the beginning and that I still had my left to look forward to as well as eventually having work done to my spine and knee.  Which, btw my knee got destroyed because my hips were not diagnosed.  Nice, right?

The fact that my right hip wound isn’t expected to heal for another 6 months…and by then who knows if my surgeon – or any will even want to touch me?  The obsession I’m doing over the pain is making me cranky.

After some discussion with my wound care team, I decided to go see my pain management doctor.  You should know I harbor enormous amounts of anger at the practice of pain management.  I know there are a lot of practices. I chose one that is well respected, well known and licensed. Not a pharmacology shop where they give you a bunch of drugs and call it a day.

My resentment comes from me saying words I think my assorted doctors there should have picked up on but never did (that would have indicated there was a hip issue). The other side of my resentment is that considering their job is pain management – I’ve asked for different types of medications to try over the years, knowing there are choices out there. But I’ no a medical professional, hell I don’t know whats available.  I get angry thinking about the wasted co-pay (somehow It’s always my high dollar co-pay) on meds that may or may not help.  It’s the med I was on for a while, I didn’t feel weird or loopy or anything…and I was happy to pay the high co pay. But the moment you say ‘hey this doesn’t work any longer’ you get treated like a junkie.

There’s a lot of abuse in the system. I know people who have abused the system, but what that ends up doing is making it impossible for people with severe, chronic pain to function. You end up being so thankful for what the doctor will actually give you that you accept it graciously.   And if you stray from the dosing in any way…expect to get drug tested and potentially  kicked out of the practice.

I made the mistake when I switched doctors (same practice, different doctor)of telling him that one pill didn’t work but two did and the lecture and warning I got…had me terrified I’d be removed.  I should also note that even after telling him 2 did the trick and took my pain from a 10 to a 5 he opted to not prescribe it again.  So. Yea.  His suggestion was I call if that should happen again…ok…so..basically Saturday morning I’m suffering and I have to call which ever doctor is on call to ask if I can take 2 instead of 1 and PRAY they bother to even call me back?  Right. I see that happening.

Anyway I saw my pain management doctor the other day and we tried a new kind of patch because I‘ve had success with patches before and my wound care doctor suggested I swap to that.  He put me on a relatively low dose of it (I don’t want him to OD me so I knew the lower dose was to be expected).

A week in and I basically feel no change.  I need something for breakthrough pain at the very lease which is, standard with patches.  Here’s the point: when I go through the agony of my wound care change out I need something to give my pain to drop down. Even when I’m ‘ok’ during the treatment, the entire rest of the day is agony.  And then there’s the agony of my left hip and knee.

I can’t escape it. I can’t run from it. I can’t hide from it. This morning I woke up crying, an anxiety attack encouraging me to get out of bed so I could at least get in the shower. I cried and cried and cried more. My chest hurt and my breathing was all jacked up. I guess unless you’ve had one, it’s difficult to explain an anxiety attack brought on by pain.

People tell me I’m strong and I know they do it to encourage me, but I don’t feel strong. I feel weak and I just absolutely want someone to give me a break. I’d love a day where pain and concern about taking a step didn’t consume me.  After about 6 years of chronic pain I need to find out who I am again.  I’ve lost the spark in my eyes, I’ve lost the part of me I thought was pretty awesome my whole life – and all because I can’t move without being overwhelmed by pain.

Update: I went to Wound Care this morning and my pain was at a 9.5. Still hadn’t heard back from my pain management doctor (big surprise).  It turns out I grew new skin!  Its extremely thin, fine skin and very tender which was probably contributing to the pain I’ve been enduring. Additionally, the wound is less deep than it had been originally so a month in and I’m starting to heal. I don’t want to hurt but at least if I do hurt I know that I’m hurting because the pain is partly driven by my healing.

And finally the nurse had to use less of the vacu-foam to fill my wound…this is great because it means I am indeed healing.  I can handle a little more of the pain knowing how much I hurt knowing there is perceptible healing going on.  I’m sure there’s a life lesson in here somewhere, just waiting to find it…surely it’s going to stumble across me one day, right?

This is the table and all the crap left over from my appointment today 2013-06-11_09-45-51_345after my wound care change out.

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About limpalongwithme

Quasi geek, social butterfly, information sponge, lover of spas and I spend my days dealing with major chronic back and hip pain. Recently diagnosed with dysplastic hips as a grown woman and I need a place to talk about it as I try to move forward.
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