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.

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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.





Making Music out of DNA

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I’ve been sequenced, my DNA sample was sent in a slick little kit to the States; they sent me back the raw data and I sent that off to Stanford to be reported on.  I’m in the early hours of studying the reports that have just come back.

Apparently I have increased genetic odds for empathy,intelligence and good sprinting muscles.  Who knew?! Running isn’t exactly my forte! I descend from Northern Europeans and I am 2.6% neanderthal.  Genetically.  Not behaviourally…I hope.

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Those were the good bits.

The other bits I am not so sure I really want to look at again.  I’ve scrolled through a myriad of red-bordered “bad” SNPs and the sheer amount of further research I am going to need to do is a bit overwhelming.  There were some things that were no surprise.

I am genetically more likely to have autism, substance abuse issues (Ah-ha! Does cake count as a substance?), skin cancer and ankylosing spondylitis. I have mutations on three of the MTHFR genes.  (Yes, you are not the only one who thinks that sounds like swear-speak!)  My autonimmunity genes repeatedly show up on the ‘bad’ list, but on the plus side, I have a normal population risk for some of the big nasties.  There are more results to look at, more research to do.  I have many more questions than when I started out, but isn’t that what information does for you?

Reminds me of that schoolyard rhyme…
The more you read
the more you learn
the more you learn
the more you know
the more you know
the more you grow
and so it goes…

I am lucky, to be me, in this country, with a free health care system and a carefully regulated medical insurance industry.  I am in a very privileged position as far as my genetic information is concerned, it’s not going to affect the health care I receive in our current political climate.  Recently, the FDA put a stop to genetic profiling reports for medical purposes from the company 23&Me. I assume this is because the implications for people in the USA with regards to insurance and health care provision were too complex. And our genetic information should be handled with care.  We should have control of it. There are ethics and questions to be considered.

I was less concerned about whether or not this information might compromise my insurance picture down the track than some might be.  In this country, and because I was late to the private health insurance party, I have been declared uninsurable.  Yet I am still cared for in our hospital system and my medications are all subsidised.  In Australia, insurance companies are required to cover anyone, after a stand down, even with pre-existing conditions, so I guess Australians don’t need to worry too much either.  Is that true, my cross-the-ditch-cousins?

I feel quite excited about what the science of genetics can already tell us.  It gives me enormous hope for the future of medical research.  It puts me in mind of the medical scanning machines aboard star trek enterprise and I long for the day when patients can be assessed by a comprehensive diagnostic process, 100% accuracy, questions answered, measures taken. 
Do you think that day will come?

It’s not the first time my genes have been tested.  When my Mum found out she had ovarian cancer, she agreed to have her DNA tested for a mutation. They had just discovered that some familial ovarian and breast cancers showed up a mutation on the BRCA-1 and BRCA-2 genes.  My Mum had the BRCA-1 mutation.  There was a 50/50 chance that Mum’s kids would carry the mutation too, so my sister and I were tested. My brothers were recommended to be tested too, but testing has to be a choice for the individual.  In males the mutation is responsible for prostate cancer.

The mutation runs strong in my Mum’s line and we were so nervous.  I can thank my Dad for his genes; I don’t have the mutation.  My sister, too.  But many of my cousins were not so lucky.  There is only one lucky thing about that, we have the technology to test our genes.  Many of my cousins have taken the option to proactively fight the cancer by having preventative surgeries.  It doesn’t eliminate the possibility that they will go on to develop breast, ovarian, or prostate cancer, but it greatly reduces the odds.  What a gift from science to our family at large.  Advance warning, a heads-up.

I am in awe of the science achievements being made all the time.  Clever things well beyond the ability of my brain to comprehend or analyse.  But we don’t have to understand it all to benefit from the advances.  We, and our children, and our children’s children get to enjoy the labours of the lab technicians. And one day, there will be an answer to strange things like Dysautonomia.  It won’t be a mystery anymore, it will be as easy to understand as any other malady.

And people like me, like you, might even get better.

This piece of music is a composition made by my genetic testing company 23&Me.  It is composed based on my genes.  Ha!  The Sound of my Sequence!  Right, time to go and answer some questions: I’m going to go find out about that MTHFR!?