Complex Regional Pain Syndrome (CRPS)

I haven’t talked much on this blog about pain.  In fact, for a long time, I preferred to ignore the topic.

Where does it hurt_(1)

Many of my friends in the invisible illness community have concurrent diagnoses of Complex Regional Pain Syndrome, and within my own family, my sister has been dealing with chronic pain for most of her adult life. It is a debilitating and exhausting challenge for the body and mind.

I previously had neuropathic pain with my Dysautonomia. Peripheral and abdominal mostly. And then I sustained nerve damage during a gynae surgery three years ago. However, the distractions of my primary diagnosis meant that it wasn’t immediately clear the surgery was the cause of my pain. I’d had a steroid injection to the site after the surgery, then gradually over time, my pelvic pain returned and increased. It affected my gait and had a dramatic impact on my mobility. Walking with a cane possibly exacerbated it, but without it I would have been unable to walk further than ten metres. It hurt so much. The pain extended from the left inner pelvis, down the middle of my left leg into my ankle. I found osteopathy helpful. I took pain medications (gabapentin and oxynorm) and modified my life. I thought that it was just another curve ball thrown at me by my dysfunctional body. I didn’t connect it with the gynae surgery. Or at least, not until after the six months of methylprednisolone infusions; when my pain disappeared completely.  That’s when the lightbulb went on for me.

When an awful symptom is removed and you experience life, pain-free, it makes you acutely aware of how much it was affecting your life.  I realised both how bad that pain had been and how long it had been bringing me low. As I weaned off the steroids, the pain returned.  I had another, more minor, gynae surgery.  This time, the pain post surgery was excruciating. I was certain that some medical misadventure had occurred. The specialist in the hospital explained that they couldn’t find cause for the level of pain I was in. I agreed that a referral to the pain team might be useful.  I was in remission and just had this pelvic issue to sort out.  Eager to get beyond it, I was keen to try anything.

The Gynaecology Pain Team have been so wonderful. I see an anaesthetist, a pelvic phsyiotherapist and a psychologist.  They believe that pain is exacerbated by a number of factors, and first introduced me to the concept of complex regional pain syndrome. This is what my psych wrote in her last clinic letter:

“We concluded that following 32 years of neuropathic pain from [auto-immune neurological disorder -Pandysautonomia] and three years of neuropathic pelvic pain she will, in all probability, have central nervous system sensitisation”.

That just means that my nerve pathways over time have amplified my pain signals. My body is in pain, and the pain I feel is more extreme than might be felt in the same scenario by someone who hasn’t been experiencing chronic pain for a long time. The longer you have pain, the worse it feels.  But don’t worry, things are in hand here; I am managing fine with all of the measures we have put in place. I have another surgery scheduled for August, when hopefully we will have a clear direction for treating the nerve pain. I am hopeful we can reduce it significantly.

I thought there might be others who can relate to this part of my story. If you want to read more about CRPS, look here.  If you are in New Zealand and have been diagnosed with Complex Regional Pain Syndrome too, you could join this facebook page. And for a quick overview of invisible illness (yes, CRPS falls into this category) have a look at this  clever infographic by Victoria from www.burningnights.orgThank you so much for sending me your infographic, Victoria.

 

Source: http://www.burningnightscrps.org
Source: http://www.burningnightscrps.org

 

 

Sarah Bowen: So, I must be fine, right?

Today on the blog Sarah Bowen is talking about Scoliosis, surgery and chronic pain. When I started up the ‘Meet my Peeps’ series earlier this year, to broaden the sharing and to introduce you to some of my favourite people, I knew that you would like them as much as I do. Many of my peeps, like me, have invisible illness or disability and all have chronic conditions.  Things that just don’t go away.  All of them are awesome people with relatable stories.

A lot of my ‘peeps’ are actually people I have never met in person.  We meet online, in the patient forums, on portals related to chronic illness and also, in my bloggers group.  Sarah is a fellow Pipster (that’s what we call the alumni from the Blog With Pip course) which is how we became blogging friends.  She has a gorgeous blog called The Routine Queen where she writes about all aspects of being a mum and something dear to her heart, organisation. I first bonded with Sarah when she wrote about the challenges of being an introverted Mumma.  You can read her post on that, here.  Then we got talking and I discovered that Sarah too, has an invisible, chronic condition.  She writes here about living beneath the radar.

Do you suffer from chronic pain, too?  Come and say hi!  Here’s Sarah:

Many people are surprised to hear that I

Seven years ago, when I was twenty five years old I had major back surgery for scoliosis, a term used to describe curvature of the spine. The decision to have the surgery was a big one. I was told if I left my back as it was it would continue to get worse and could end up causing major health problems (think squashed organs and a wheelchair). But the real deciding factor for me was that the severity of the curve in my spine would make it difficult to carry and naturally birth a baby, something which I was looking forward to in the not so distant future. So the decision was made to have the surgery. Little did I know how much it would change my life.

Recovering from the surgery was intense. Almost three weeks in hospital and three months in a full back brace. At the beginning I couldn’t walk more than a few steps assisted before I was exhausted. Sitting for longer than a minute would leave me in tears. I couldn’t brush my hair, have a shower or go to the toilet unassisted. It was hell. I was told that after six months I would be ‘back to normal’ but its six years on and I’m still waiting.

Many people are surprised to hear that I(1)

There are lots of questions surrounding the surgery and my recovery. For example, I was told a small portion of my rib would be taken to gain access and help ‘fuse’ my spine together. I was told it would grow back (as the front of your ribs are actually cartilage not bone, they can regenerate). What actually happened was three of my ribs were removed and they never grew back.  There was some other complications and lasting nerve damage. I am in pain every single day. Obviously not as intense as the first few months following surgery, but still, the pain is there.

I spent years looking for the answers. Why did this happen? What was causing the pain? How could I make it stop? I went to chiros, physios and osteos. I tried different forms of exercise and natural therapies. Nothing worked. After many hard days I had to face a hard realisation. This was how my body was now; this was how it was going to be.

Many people are surprised to hear that I am in constant pain. Because I rarely talk about it people assume I’m fine. I manage to live a normal life, I work, and I participate in normal activities so I must be fine right? I think for people that suffer from chronic pain there is a certain point where you just learn to live with it, your really don’t have any other choice. And so you get on with life. You stop talking about it because you’re sick of talking about it and you’re sure everyone is sick of hearing about it!

Since my surgery I have become a Mum. I have a three year old boy. When I was pregnant I was almost pain free (must’ve been those hormones, someone please learn to bottle that stuff!) but it quickly returned after giving birth. I’ve had to learn to manage. I could never carry my son on the right side of my body, it’s not easy for me to bend down and pick things up from the floor (not fun when you have toddler!) And I have to grit my teeth when people give me a hug because it really hurts! There are days when I’d love to just lie in bed with a heat pack on my back but of course when you’re a Mum you just can’t do that!

Cold weather is a killer, my body kind of just seizes up. Needless to say I’m not loving winter in Melbourne at the moment! I have days when I have a sook to my hubby about it, I might mention my back is particularly sore, on those days the pain is probably more of a 7 or 8 than its usual 5 out of 10. But most of the time I remain silent because I figure there’s nothing that can be done. I try not to think about it, I try to focus on other things and keep busy, that’s my way of coping.

Another thing that helps me cope is knowing I’m not alone. So when I came across Rach’s blog I was inspired to send her an email, I just needed to tell her ‘I get it’. I can really relate to so much of what Rach shares here on her blog. So I was extremely honoured when she asked me to share my story with her readers. And now that I’m here in this space I’d love to hear from you.

If you live with chronic pain how do you deal with it?

What things help you cope?

What have you discovered that helps you both mentally and physically?

Begat

I first came across the word ‘begat’ when I was a little girl.  Sitting through endless church services and looking for distraction, I would pore through my bible for words I didn’t know. In the Old Testament there are comprehensive family histories.  They list only the sons. But of course. Surely that isn’t where my feminism took root (or is it?).  They went on in variations like this:

And Canaan begat Sidon, his first begotten son, and Heth, and…

It’s not really a term we use anymore, but it is a useful word. The next time I heard the word begat (or a present tense version of it) was when I was a new Mum.  The plunket nurse was talking about baby’s routine.  She explained that “sleep begets sleep”.  The more sleep babies have, the more they want. And how the less they get the more and more wakeful, and therefore, harder to settle.  So I set about creating a better sleep routine.

And today, I added a new context to the word begat.   (Rude word warnings…)

Crap begets crap.

And so it was, that Crap begat Crap who

You know what I mean.  It never rains but it pours. Just when you think ‘surely nothing else can go wrong, I’ve had all the bad luck a person should get’ …a bird poops on your head, you jam your favourite scarf in the car door and rip a big hole in it, you stub your toe and miss a phone call from the radio station that would have won you a trip to Paris.

No amount of positivity works. Nope. Deep breathing is useless. There is nothing you can do but surrender to the crapfest and hope that somewhere down the line, the begetting will run out. And as my friend said to me this morning, it is okay to say “why me!?” sometimes.  I agree, but it is not easy when the kids are with me, to rail against the begetting of bad times. I’ve been trying to keep the self pity to my private moments.  The anger and the grumps. I’ve been trying to fake making it, so that the Universe might be tricked into laying off on the lessons for a while.  I am sick of learning lessons.

Universe? Take your zen-opportunities and go jump. Take your deeper meanings, your soul education, your wisdom bringing life experience.  I don’t want any of it. I’d rather life was easy and I could be shallow, thanks.

My mother-in-law is sick, she has advanced Parkinson’s.  My father-in-law is sick, we’re waiting to hear results from his recent tests to see if he’ll be having surgery or radiation therapy, or both. My brother just phoned to say something’s up with his liver and kidneys. And I spent this morning at a pre-admit clinic for the surgery I will have in August to remove pre-cancerous cells from my cervix.  It’s not a huge thing, but it is one thing too many.

I had to be there for 9am, so we were up and out of the house by 7.30 this morning, I had to first drop off my daughter and then my son both to the homes of two very helpful friends. And when I hopped back into my car to go to the hospital, it would not start. The lights were on, but nobody was home.  Glancing at the clock I realised that if I called for roadside assistance, I’d miss my clinic appointment.  I screamed then, in my car.  Let out a tiny bit of the anger that has been swirling around in my head. And I called a cab. After my meeting with the anaesthetist and the admissions nurse, an ECG and some bloods, I caught a cab back to my car. The bloody thing started first go.

See?  Bad times beget bad times.  I am sure my car wouldn’t start earlier, simply because I needed it to.  All this crappy minutae, on top of all the other stuff gets me down. My steroid trial is over and I feel myself sinking back into the quagmire, perhaps even more so after my immunologist yesterday made it pretty clear there was no way I would be eligible for IVIG. And all because I am seronegative, like 50% of patients with my diagnosis. I don’t even know if I can fight the fight for treatment any more. My steroid trial proved I have an AI aetiology, but now there is no treatment?! I can’t even explain how I feel about the shittiness of that. I feel like I am falling.

I know that my mind is a messy, noisy place.  I know I need help getting into a better frame of mind.

Let me know if you know how I can do that.

For now I am just putting it out there.  Crap begets Crap.

Untitled design(16)