Chronic pain following use of a Mirena IUD in a person with CFS (also called ME or CFIDS)

NB: I'm not really posting this for my regular readership but so that this information is available on the internet should someone one day come looking for it.

Nearly two years ago I had a Mirena IUD inserted.  Within days of the insertion I developed a uterine infection that caused such severe pain that the Mirena had to be removed after three weeks.  The pain resulted in me developing a condition known as central sensitisation.  Whilst I had the infection, nerves that normally send other kinds of signals had been commandeered to send pain signals in order to convey to my brain the severerity of the situation.  Once the infection was eliminated, these nerves didn't return to their normal functions as they should have and instead continue to send pain signals.  This means that, even though I no longer have an infection, I continue to live with significant pain (although that pain is now reasonably well controlled and I am hopeful that it will eventually be eliminated altogether).

I am sharing this story as I believe that my severe chronic fatigue syndrome made an infection following the Mirena insertion a near-certainty.  It also seems that the resultant central sensitisation was much more likely to occur in a person with CFS than in a healthy person.  I in no way blame my GP for not realising the risks involved in giving me an IUD, but I wanted to put the story on the internet in the hope that other women with CFS would be aware of these possibilities!

Likelihood of infection
As mentioned above, I have very severe CFS/ME.  For the past nine years I have had around 15% of the energy I had before I became ill.  I am only able to be out of bed for a total of three hours per day; I use a walker to walk within the house and a wheelchair for any trips outside.  My muscles are thus extremely deconditioned.  It is this that both I and my gynaecologist now believe made a uterine infection almost inevitable once I had had the IUD inserted.  Once the (tiny!) weight of the IUD was added to the weight of my uterus itself, my deconditioned pelvic muscles were too weak to continue holding my uterus in its proper place.  The Mirena thus bore down on my cervix such that it was pushed very close to the opening of my vagina.  At this point infection became inevitable: the strings attached to the Mirena, whilst only 3cm long, were from time to time pushed right out of my vagina to regions where they would have come in contact with bacteria.  These bacteria then travelled up the strings into my uterus where they multiplied and caused me such severe pain that several times I thought I might pass out.

Likelihood of central sensitisation
I am much less confident that my central sensitisation was a consequence of my CFS but it does seem that this underlying condition may have put me at higher risk of developing such a condition.

According to Dr. Ros Vallings' report from this year's "Invest in ME" conference in the UK, people with CFS have abnormal pain processing systems.  In particular, Professor Maria Fitzgerald's paper apparently noted:

In CFS/ME there is altered CNS processing.  Fibromyalgia (FM) patients perceive greater intensity and greater temporal summation.  Sensations increase in magnitude, and the CNS winds up more and more. There is alteration of endogenous pain control.  FM patients lack diffuse noxious inhibitory control.  Normally there is ability to inhibit pain (endogenous opioids).  There is altered cortical pain processing in CFS/ME.  Numerous areas of the cortex are involved. There is activation of the limbic system (anterior insular-based ganglia and cingulated cortex). The CNS is acting very differently.

So it seems that there is something abnormal in the way people with CFS process pain signals.

In addition, Professor James Baraniuk is reported to have made the following observations about fibromyalgia patients:

There was increased sensitivity to deep pressure in FM. There was also increased sensitivity of proprioceptive and stretch receptors on nerves innervating the joint capsules, tendons etc. There maybe loss of the anti-nociceptive system, and loss of norepinephrine release, which normally regulates responses, and initiates autonomic responses. It is as if “the light is on but no-one is home”, and the brain is in a default mode pathway.

He looked at pain dolorimetry – pressure-induced thresholds, and did frequency analyses.  Central sensitization starts in the periphery – there maybe peripheral sensitisation such as by hay fever. Spinal sensitization leads to hyperalgesia and allodynia.

 I don't really understand what he is saying beyond that he mentions something about central sensitisation occuring in fibromyalgia patients.  As he was speaking at a chronic fatigue syndrome conference (not a fibromyalgia one) I presume he means that similar things are also observed in people with CFS, although there is no indication in Dr. Vallings' notes that he actually said as much.

These snippets make me wonder if central sensitisation following severe pain (as described in Dr. Woolf's paper linked to above) is more likely to occur in someone with CFS as our pain processing systems are, apparently, already not working properly.

If your CFS isn't as severe as mine then I suspect that the above scenario is unlikely to happen to you.  If, however,  you are very inactive and your muscles don't always hold your innards in place like they should then please be aware that it is a possibility!

Arohanui,

--Heather :-)

PS, if you'd like to know more about any of this, please put a question in the comments or email me.

Spring!!

Last week, Martin took this photo of one of the first blossoms on our quince tree.  I think it's beautiful :-)

Ros Vallings on National Radio

There was an interview with Ros Vallings, my CFS specialist, on National Radio this morning.  You can download it from here, should you wish to listen to it.  It's about 30 minutes.

Thoughts from Isaiah

Over the last couple of months Martin and I have been making our way through the book of Isaiah in the Bible's Old Testament.  As we've read I've been struck by Isaiah's contemptuous dismissal of idols and of those who put their trust in them.  Idols are described, in essence, as 'gods' in which people put their trust, but which are actually so powerless that their worshippers look after them, rather than the other way around.

Isaiah is talking about literal idol statues: 'gods' that rely on people to make them, to carry them from place to place, to put them down carefully so they don't fall over etc.  Not many 21st century Pakeha worship such gods, yet we still put our trust in things that require us to tend them.  Money is a common one - requiring us to invest a lot of time and effort carefully making it grow so it can later protect us from hard times.  Houses can be this way, too, when they become more than shelter and morph into a repository of 'equity'.  Reading Isaiah this morning I realised I've allowed Martin's income protection insurance become such an idol.  There's an exclusion on the policy for a medical problem he's had in the past.  If by July 2013 he hasn't had the problem again, the exclusion comes off.  I realised that I've become anxious about that deadline: concerned that the problem musn't come back, even wondering if he should go to the doctor (and hence admit to it) if it does.  I realised today that I've been carefully managing the insurance so that I can put my trust in it, rather than just having insurance but putting my actual trust in God.

Our God is quite different from the idols.  He's not just more powerful, He's also more 'willful'.  Take this, for example, from Isaiah 45:

⁹ “Woe to those who quarrel with their Maker,
    those who are nothing but potsherds
    among the potsherds on the ground.
Does the clay say to the potter,
    ‘What are you making?’
Does your work say,
    ‘The potter has no hands’?
¹⁰ Woe to the one who says to a father,
    ‘What have you begotten?’
or to a mother,
    ‘What have you brought to birth?’

We are the clay, God is the potter.  We can't question how he chooses to act - even if He chooses to act, as He is here, through an army who is raping and pillaging their way across the landscape. In a way, Isaiah presents us with a simple choice.  We can put our trust in idols, who might look like they do our bidding but who really don't do anything at all; or we can put our trust in God, who will do what He wants rather than what we want, but who is, at least, all-powerful.

It reminds me of this bit of Psalm 115:

² Why do the nations say,
    “Where is their God?”
³ Our God is in heaven;
    he does whatever pleases him.
⁴ But their idols are silver and gold,
    made by human hands.
⁵ They have mouths, but cannot speak,
    eyes, but cannot see.
⁶ They have ears, but cannot hear,
    noses, but cannot smell.
⁷ They have hands, but cannot feel,
    feet, but cannot walk,
    nor can they utter a sound with their throats.
⁸ Those who make them will be like them,
    and so will all who trust in them.

You can put your trust in the God who does whatever He pleases, or you can be as blind, deaf and immobile as an idol statue - how's that for a choice!

Hero rats

I've just enjoyed listening to an interview from National Radio's This Way Up about one of my favourite charities - Apopo/Hero Rats of Tanzania.  They train African pouched rats to detect landmines in fields in Mozambique and Angola.  More recently, they've also be training these rats to identify patients with tuberculosis by sniffing sputum samples.

The rats they use are enormous.  Look at this one (image taken from Wikipedia).  Good thing they're socialised from an early age to see people as friends!

Sofa slipcover

We have a wonderful sofa that we inherited from Martin's grandmother.  It's super-comfortable, long enough to spread out full-length on and turns into a remarkably comfortable bed.  I've been wondering for a while, though, about getting it recovered as the fabric looks rather worn-out and some of the tufting buttons have come out.

Then a friend gave me some gorgeous woolen fabric that looked like it'd be big enough to make a slipcover from.  Surely cheaper than proper reupholstering and hopefully a fun project :-)

I've been working at it off and on over the last month or two and yesterday it was finally finished!

 

I'd started by attaching cords to tie to the front legs of the sofa, with the cords attached to pieces of tape to spread the strain.

Then I'd sewn the front corners, in the process cutting out a roughly square piece of fabric from each.

Next came a cord to keep the fabric snugly in the groove between the seat and the back.

I cut the fabric in line with the cord at each side so that it could sit smoothly on both the seat and the back.  I filled the V-shaped gap thus formed with fabric that, had I not cut it off, would have been hidden under the wood that supported the arms anyway.

 

Lastly I needed to tidy up the back.  The fabric wasn't quite long enough to go over the top of the sofa so I attached some black calico to extend it.  This actually took about as long as the whole rest of the project as it involved lots of hemming!  Once attached, I stitched in the folds on the top corners of the sofa, in the process stitching the squares I'd removed from the front corners onto one of the sides (it turned out I hadn't attached the fabric to the sofa as symmetrically as I'd thought...).

All done!

Marriage equality bill

In New Zealand, a members bill is currently being debated in Parliament which, if passed, would extend marriage to homosexual as well as heterosexual couples. My instictive reaction has been that, on the whole, I would like this bill to be passed - i.e., I'd like NZ to legalise same-sex marriage. This doesn't appear to be the common Christian position, but my thinking on the matter has been significantly influenced by reflecting on the situation of a young family who used to live over our back fence: a family made up of two adult women and one preschool girl.

As I came to care for them, I began to be concerned about how one particular part of NZ law affected them.

Under current NZ law, children can only be adopted by either single people, de facto couples or married couples.  As only heterosexual couples can be recognised as being either de facto married or actually married, that means that gay couples cannot adopt.  One member of a gay couple can adopt a child on their own (as singles can adopt) and they can then raise that child together, but legally, only one of them is that child's parent.

In general, that could be fine.  But, if the legal parent is away from home on business and the child suddenly has to go into hospital, the other partner isn't that child's legal next of kin.  They can't make decisions about the child's care, they can't visit them and reassure them in intensive care etc. etc.

That seems to me to be hugely contrary to that child's wellbeing.  As I read the Bible prior to the last election, trying to work out what kind of rulers God appeared to be in favour of, again and again I found that he wanted rulers who watched out for the concerns of the weakest members of society.  Preventing both of a child's actual parents (at least from the child's point of view) from being recognised as their legal parents appears to me to be harmful to the interests of that child - one of society's weakest members.

At first, one might think you could shore up this situation by preventing adoptions by single people.  But of course, single-person-adoption isn't the only way a homosexual couple can end up raising a child.  All a lesbian needs to get pregnant is a syringe and a cooperative friend.  (I guess that's all a gay man needs, too, although in his case the degree of cooperation required is somewhat more substantial, and adoption law still comes into play once the baby is born.)  However, when that lesbian woman gives birth, there is currently no way in which her partner can be recognised as a parent of that child.

So, in a world in which it is so easy for lesbian women to have babies and for them to raise them with their partners, is it just to deny those children the option of being legally adopted by their non-giving-birth-to-them mother?

Of course, allowing homosexual couples to marry isn't the only way to resolve the situation outlined above.  But I expect that most Christians would have a similar level of distaste for extending the right to adopt children to homosexual couples (whilst still preventing them from actually marrying) as they seem to have for 'marriage equality'.

That said, the folk at 'Protect Marriage' raise a few points that give me pause for thought.  For example, it does seem plausible to me that 'marriage equality' could lead to more heterosexual divorces and fewer heterosexual couples choosing to have children, and neither of those are outcomes that I'm in favour of.  But I keep on coming back to the wellbeing of our little former neighbour, and I think that 'marriage equality' for her parents really would be in her best interests, at least.