Huh? I’m a Pain Meds Weirdo

I’ve been taking 20mg of amitriptyline nightly for pain relief since June 2007.

In fact my post about it is one of the most visited on my blog so if you’ve landed here looking for info on amitriptyline as pain relief that post is the place to read more.

Since I’ve been noticing pain creeping back in more regularly in recent months I asked my Lovely GP at my last appointment about upping the dose to 30mg. 

Originally her intention had been for me to take 30mg.  But when I upped the dose from 20mg to 30mg back then a weird thing happened. 

The 20mg dose had been fairly effective (and continues to be).  It stopped pain to a certain threshold but when I go beyond that, or am particularly poorly, it’s like a switch is flicked off and the meds stop working.

When I went to 30mg it was as if I wasn’t taking any pain control meds at all.  The switch was permanently flicked off.  I stuck with it the dose a while but couldn’t stand the side effects.  So I went back to the comfortable 20mg that gave me sufficient pain relief for average days and topped up with over the counter and migraine meds when needed.

So after more than 2 years I’d thought I maybe didn’t stick with 30mg long enough to get past side effects and feel the benefit.  Because even my Lovely GP said “that’s odd”.

I’ve now been on 30mg for 2 weeks and the pain is worse than it was on 20mg.  Not crippling pain, but nagging, aching, persistent pain.  Enough to make me want to reach for the co-codamol (if my IBS-C wasn’t such a problem)especially first thing and later in the day .

It would seem it’s the same result as before.  I am weird.

Is it medically possible I wonder?  I suppose that using this sort of medication in low doses for other things like pain control isn’t fully understood, so maybe this isn’t understood either.  Certainly not by me.

It would be nice though to have a top up on meds mean a top up on pain relief like is supposed to logically happen!

I’ll stick with the 30mg longer this time, to be sure.  And I’ll think about discussing trying upping to 40mg with the doc to see if that makes a difference.  I feel a little cautious about taking more as I know it can make you feel pretty spacey.  We’ll see how the 30mg goes in another week or so.

Update on IBS Taming Phase 2

Ouch. The gradual introduction of non soluble fibre into my diet using fruit smoothies has not gone smoothly.  Ow ow ouch.  I didn’t get a lot of sleep last night and there’s residual spasming this morning. Ouch.

Maybe it needs to be even more gradual an introduction? Tiny teeny amounts of insoluble fibre. Or maybe my bowels just are not ready. Sigh. I’ll need another few days to a week of the plain phase 1 foods to get me stable again before I can have another attempt.

IBS Taming: Phase 2 Attempt

I’ve been taming my horrid IBS flare for nearly a month now.  Since I last reported that I had never been so happy to eat a bowl of rice I have eaten many many more bowls and continued to be overjoyed by it every time.

In fact the last month has consisted mainly of rice, tofu, mushrooms, carrots, rice based pasta and jacket potatoes.  And lashing of soy sauce.  Plus crisped rice cereal, soy milk and bananas.  I’ve also continued to enjoy my wheat free pikelets and discovered wheat free pretzels.  Wheat is ok for this IBS Challenge provided it’s not whole wheat but I’ve had some adverse reaction to wheat whereas rice has been my friend.

Now my IBS is fairly stable on this Super Soluble Fibre diet (unless I exert after eating or am mega tired which makes me struggle despite friendly food), now I’m attempting Phase 2.  The introduction of some insoluble fibre.  Da da daaaa!

Yes folks it’s rice cereal followed by a fruit smoothie which contains fruit with some roughage blended into oblivion.

Problem is that even though it’s a small amount of insoluble fibre and even though I’m taking it with a good soluble fibre base … it leaves me feeling a bit bloated, full of gas and like I’m teetering on the edge of IBS spasm hell.

I don’t know if this is normal and it’s a matter of letting your system adjust slowly.  Or if this is a warning sign that my body is not ready for it.  So I’m going to have to just try it and see.  At least I’m not bored with m restricted diet.  How you can be bored of food if you can eat it without feeling ill?  ME/CFS is so weird.

Head Full of Rocks Wrapped in Candy Floss

My head feels a bit like it’s full of rocks wrapped in candy floss.  Not quite so sticky in there today but my brain is all over the place. 

I threw a cup of peppermint tea over my shoulder this morning in bed and it went all down my back and all over the bed/wall.  Involuntary movement that seemed quite deliberate by some broken bit of my brain.  The circuits are a bit overloaded.

Dear friends, this post on my husband’s blog will give a hint as to why my head is a mess http://bit.ly/8BXVH

Sorry this isn’t the jolly post about what a lovely time I had for my birthday last week with cool pressies and a fab short break in North Wales.  I’ll try to get to that if I can focus beyond the fog for long enough.

In The Grip of IBS

I’m in the midst of an IBS flare up of horrid proportions.  Things have settled a lot now I’ve been on the What To Eat When You Can’t Eat Anything plan from Help For IBS.  Because I really was at the stage when I seemingly couldn’t eat anything without pain and terrible discomfort.  The kind of discomfort that doesn’t allow anything else to go on in your brain except “ow ow ouch ow”.

I never knew I could be so happy to eat a bowl of rice.  Or indeed so excited to see tofu with my rice (and nothing else).  Whilst the spasms and pain and nastiness has settled down (just about) getting back to eating more normally is more of a challenge.  Gradually re-introducing other foods and roughage doesn’t have much of a formula other than to give it a go.

I’m also aware that having become so frightened and suspicious of food during the horrid flare is dangerous territory.  I hear it’s easy to fall into an eating disorder after something like that.  “Sensible” is the way to go.

Except tonight I am going out with Growler to a social media curry with a group from my local area.  Not sure curry is the best starting point for tummy rehabilitation but at least there will be lots of rice available.  Now if I could only sneak in my own marinated tofu …

Sad and Guilty for my Caring Husband

My wonderful Growler got back on his bicycle in the last year and enjoyed it so much he decided to take on a big challenge. A 140 mile ride from the west to east cost of England over 2 days.

He has been training hard and asking people (mostly from outside of the ME/CFS world) to give ten minutes rather than money. With their time he would be asking them to read an article, sign a petition or perhaps write a letter in support of ME/CFS and of carers.

The ride is in 4 weeks. He’s just announced publically that he won’t be doing the challenge.

Juggling work, home, caring and training for this incredibly difficult event has proven too much.

As he says it’s ironic that the 2 causes he set out to raise awareness for have been the reason he can not participate in the challenge.

I feel incredibly sad and a little guilty that my illness and debility is at the core of him not being able to do this event which he has worked so hard towards and still would love to do.  But life is what it is.  I can’t magic myself to better anymore than I can take up more slack to help him do this.  I want to desperately but it’s just not possible.

I’ve been quiet.  I’ve been in some odd moods.  I’ve been online shopping a lot – usually a sign I’m trying to find a magic fix to make me feel better, to make life better.  My cognitive problems are showing up again – so far in a minor way but still more present than a few months ago.

The adjustment to Growler being out at work full time has been significant.  And I still haven’t got my daily routines right.  The balance still needs tweaking and somehow I need to lift myself from getting through to living as fully as possibly whilst recovering too.  Too much energy spent on trying to live and not much on resting.

The signs are there. The gland pain in my neck is back on a regular basis.  My getting to sleep and switching off from stimulus is faulty.  Tiredness is bringing more muddled thinking, gaps in understanding and holes in memory.  And tiredness is thick and all around.

It’s time to acknowledge the warning signs before things get any worse.

So whilst I feel guilty about Growler having to drop this cycle ride and whilst it feels that me and my stupid illness have forced that decision, I can’t afford to be too down about it.  Because I’m in a danger zone already. 

I have to find the positives and look to the future and maintain hope.  Hope I will turn around this slight decline, hope I will recover and be well, hope that Growler can do another cycle ride, hope that the people who offered him support don’t turn away when things get tough. 

Hope that people understand that when you say no and smile it can be even harder than carrying on regardless.