It Makes my Blood Boil

I asked myself recently if I thought I'd ever run out of things to blog about.  Quite simply, no.  Not for a long time anyway.  Constantly I am getting inspiration from my own experiences, reading medical journals or other peoples blogs and with my stem cell transplant looming, my posts will become more of a diary.  But one source of material I find I recently use is what people talk about on the medical forums.


One topic that consistently comes up in the cystinuria forum is people with kidney stones being refused pain medication because they are being labeled as 'drug seekers'.  And that makes me angry.  If you've ever had a kidney stone you would know why.  They hurt.  They hurt a lot.  Being a man I cannot compare, but I'm told the pain is equivalent to child birth.


Now I get that kidney stones are an easy symptom for 'drug seekers' to mimic.  I get that people with chronic kidney pain may become addicted as a result.  But to leave people in that sort of pain is barbaric and unforgivable.  I will elaborate.


Nine out of ten times these people who suffer from cystinuria can prove they have a chronic kidney condition that gives them an insane amount of kidney stones.  Yet, ER and primary care doctors constantly refuse to treat their pain.  My point being that if you can prove you have a disorder like this you should be treated.  In my hey day, before I was receiving proper care for my kidney disease (And I freely admit that was my fault) I grew a one centimeter stone in three months.


And even though I admit that a chronic kidney stone patient could become addicted to pain meds (because of the nature of the pain treatment) I believe that the pros and cons of addiction to pain relief for a bona fide medical condition need to be weighed up and addiction, or feeding addiction is a small price to pay to make sure a patient is pain free.


If there are any doctors that a reading this and would like to weigh in I would love to hear.  I would also like to take the opportunity to say that I have never been addicted to pain meds.  Whilst I believe some people have a penchant for them, I am the opposite.  I don't like the way they make me feel and when the pain goes away naturally I enjoy seeing the back of them.  I'd also like to add that I have never found myself being denied meds on suspicion I might be a 'drug seeker'.


I'm going to finish with a story from the cystinuria facebook forum.  A doctor told a lady with stone pain that it was similar to mild menstrual cramp and analgesic pain meds weren't required.  Well if that's the case I'm glad I'm not a girl.  Severe cramps must be agony.


Next time I'll get back talking about my SCT.  Until then, stay well:)

It's All in Your Head

In the patient forums that I participate in there has been a popular topic recently and that is pain.  Pain is the bodies way of telling us there is something wrong and we need to do something.  Some pains are minor, like a paper cut, some are major, like a kidney stone.

Pain is one of the most highly studied and most common phenomenons in medicine, and for the most part we are extremely effective in treating it.  But not always.  Pain comes in thousands upon thousands of shapes, sizes and intensities and it is impossible for doctors to know how to treat all of then.  For the more complicated cases there is a lot of trial and error until they find the answer.

This is where I believe as a patient you can take charge of your own care.  No one is going to understand your pain quite like you, and no one knows yourself quite like you do.  If you do your research, you, yourself have the best chance of beating the problem.

In 2006 as I have said many times I was in hospital for three weeks.  It was the worst time of my life, and three month later, when the final remnant of stone was removed from my body by the surgeon, the damage had been done.  My emotional state was akin to the aftermath of a hurricane, except there was nobody to clean up.  And even though I had no stone I still had kidney pain.

The doctors said it was impossible as I had no stone or blockage.  They couldn't figure out why, so they concluded that it was all in my head or I was a drug seeker.  I can assure you I am no addict or seeker.  Honestly, if I have pain the drugs are great, but if I don't have pain I want nothing to do with them.  They make me fell weird in a not so good way, and bung up my intestines something fierce.

But there I was. Pain, but no blockage.  Looking back it must have been really bad.  Mentally, I was pretty much rock bottom, yet I felt compelled to do something about it.  So I researched, and I found this source that had a rather alternative view.  For the life of me I can't find out where.  I had somehow managed to muster my strength enough to fix my problems, but god forbid I would take notes or use the information to help anyone else.  I was too wrapped up in my own misery, so for that I apologise to all my readers.

But I do remember the underlying theory.  Basically, pain has a memory which sits either in the brain or the nervous system.  The more you experience a type of pain the stronger that memory becomes, and every time that memory is triggered you can feel pain which can be almost as intense as the real pain originally experienced.  To me this made perfect sense and was a theory worth exploring.  It explained why I was feeling pain and why the doctors couldn't explain it.  So how do I treat it?

The author then went on to explain that for every memory there was a trigger that fired it off.  That trigger could be anything.  Stress, anxiety, a smell, certain foods etc.  Basically, it could be anything, the important thing was to identify it.  So every time I felt pain (which was nearly ever day) I had to think about what I had done the hour or two prior so I could identify the trigger.

Personally I identified two triggers.  First, if I ever felt a little dehydrated, and second anxiety, which was really a negative spiral.  I got anxious, I would feel pain, so I would get more anxious.....  I now was fairly certain I had identified my triggers, now I needed to find out what to do next.

Apparently for every 'on' trigger, there was also an 'off' trigger.  Now I just had to figure out what that was.  Normally the off trigger was something similar to the on trigger, so I started to have a glass of water every time I was a little dehydrated and I felt the pain coming on.  And you know what, it worked.  But it did not help with the anxiety.  Occasionally I would get anxious about having another stone and hey presto! Back came the pain.

Finding a trigger for that was a little harder, so I ended up seeing a hypnotherapist.  I don't know exactly how she did it but at the start I told her the problem and then she got me to sit in a chair and....  Well I'm not sure really.  I remember I felt like I was in that slumber just before you fall asleep where I was still vaguely conscious.  She asked a bunch of questions but I have no idea what about.

After it was over, I felt no different, and I really thought the exercise had been a waste of time.  However, a couple of weeks later I noticed that I had had no pain.  I still felt anxiety from time to time, but funnily enough not with kidney stones.  Every time I thought about stones the problem seemed exceptionally manageable.  She had not given me an off switch, she had done one better, removed the on switch!

This worked for me.  I'm not saying it will necessarily work for you, but it is harmless and if you are scratching your head it might be worth a try.  Step by step this is how it works.

1. Identify your pain.  Describe it to yourself.
2. Rule out physiological reasons for the pain.
3. If no physiological reason identifiable, look for your on trigger.
4. Once you have found it, try to identify your off switch.
5. If necessary, repeat steps 3 and 4.

So the doctors were right.  It was all in my head.  But they were also wrong.  As Morpheus said in the Matrix, "Your mind makes it real".  The pain I felt was as debilitating and nasty as nearly any other pain I felt.  It needed to be treated, not ignored.  Luckily, I found a solution that worked for me.  If you suffer chronic pain I hope you find a solution that works for you too.  Stay well:)