A Review of the Week

Although my posting frequency has been rubbish this week, pain-wise progress is being made I am pleased to say.

Every day still includes a fair amount of pain, but it is pretty regular now in that is starts between 7 and 8am and with the help of some painkillers (which have never worked before!) it is usually gone by about 11am.

The sleepiness is getting worse but that may be the pain killers combined with the amitriptyline.  I did try to not take any pain relief this morning and that backfired massively, leaving me in agony for far longer than I was happy about.

Earlier this week I stumbled across the concept of Mindfulness and how it can be helpful for pain that is psychological rather than due to a definite medical condition (and I strongly suspect that my pain is psychological).  A bit of googling and a quick visit to Amazon later and I find myself in possession of a brilliant book about how mindfulness can help you get on top of your pain.  I am literally only two chapters in and already the pain is starting to make more sense.

The concept (clumsy explanation alert!) is that pain divides into two separate bits - the actual pain and the emotions that the pain generates.  The brain learns the emotions attached to the pain and increases the strength of pain you feel in line with the strength of the emotion.

I had a bit of a test with this this morning and found that if I stopped emotionally feeling the pain and just simply felt it - so no thoughts about how awful it is or how my life is dominated by it - just a cool, calm assessment of the how the pain feels physically.  In doing this, I actually experienced a different pain sensation - albeit briefly - but in that moment it felt more manageable somehow.  

The book leads you through an 8 week meditation course and I will be getting started on it as soon as I have read the book cover to cover (which it recommends).  This feels like it really could be something worth trying, and the benefits seem to extend beyond pain in that it seems that by embracing mindfulness, I could potentially develop the ability to handle stress and anxiety better too.

The likelihood of stress and anxiety being key factors in my pain experience makes this experiment something I would be mad not to try!

If you are interested,  the book is "Mindfulness for Health: A practical guide to relieving pain, reducing stress and restoring wellbeing" by Vidyamala Burch and Dr Danny Penman.

Drowsiness

So.....higher dose of amitriptyline seems to be making a small dent in the pain and a huge dent in my ability to stay awake!

Add to that the co-codamol that I am taking to try and tackle the large chunk of pain that the amitriptyline isn't dealing with and you have one very sleepy me.

Yesterday I got up at 10am having slept through since 11pm the night before.  I was asleep again in the afternoon - I think I managed to be awake for about 4 hours before I needed to hit the hay again!  

Today has been a little better.  I was up at 8.30 through necessity rather than choice and have managed to stay awake all day but I must admit its now almost 6pm and my eyes are fighting a losing battle to stay open!

The pain is more bearable with the combination of meds but still not at a level that means I can function properly.  Also, I have zero energy or enthusiasm for anything (even my crochet and knitting thing has fizzled out) and I am going stir crazy stuck in the house.

All good advice says that to deal with the depression and start getting my life back on track, I should be going out and trying to do some "normal" stuff like grocery shopping.  But I don't like going out because apart from looking like a zombie through exhaustion, I don't really look ill.

This is one of my biggest issues with this situation.  Pain is silent, invisible.  You can't see pain unless the person experiencing it doubles over or screws up their face.  My pain is so frequent that it takes a full on 9/10 for me to double over and I wouldn't screw my face up for anything less that a 6/10 but that doesn't mean that the pain I feel below a 6/10 isn't bad.  It is pain.  Strong pain.

Every day is a chance for the pain to lessen or stop.  I am holding on to that at the moment.  The meds can take weeks to have an effect so I am holding on to the possibility that tomorrow might be the day they finally work. 

One day I have to be right.  Please.

Pain.

So after a reasonably good day yesterday - which I naturally attributed to the increase in my meds and considered to be positive - today has been awful.

I woke at 7am in pain and drifted in and out of sleep for another three hours whilst the pain came in waves.  It wasn't excruciating but it was more than just uncomfortable.  Again, I thought perhaps the meds are taking away some of the strength of the pain.

I got up just after 10am and made it downstairs for some breakfast but by 11am I was in agony and back in bed, staying there until 2pm when the pain subsided.

The meds are almost certainly making me sleepy - it is a known side effect - and I am steadily increasing in weight - another known side effect.  I think it is fair to say that today I feel extremely low.

My husband made me some lunch and then persuaded me to take our dog for a walk, which I grudgingly agreed to do.  Now I am back and feel exhausted.  No pain but very fed up and sleepy.

I seem to live in comfy, baggy clothes and my face hasn't seen anymore than a lick of eyeliner in almost 8 weeks now.  I can't go anywhere because I am off sick and I feel like I am going stir-crazy stuck at home every day.  I have had enough.

I just want my life back.   

Crocheting My Way Through

My posting frequency has been poor this week and there are two good reasons for that, and they are linked.

Depression and Crochet.

I realise that these are not two subjects that are commonly placed together but in my case, one is very much containing the other.

My depression is very firmly tied to my pain issues.  I am finding it increasingly hard to envisage what my future can possibly be with a pain disorder that cannot be controlled or cured.  This is exacerbated by the lack of any real interest or sense of urgency in the medical profession and a wealth of conflicting advice on the internet.

Online, I can find only the questions and concerns of thousands of other pain sufferers, all desperate for the same answers that I am looking for.  Any search about abdominal pain brings up a load of pages about IBS - which I am still certain I do not have - and the often conflicting suggestions of exclusion diets, anti-spasmodic medication etc.

Any ripple in the steady grey that is my life sends me spiralling into very black thoughts.  

So I needed a plan - something to focus my mind on when the pain is bad and/or the depression is swooping in - and the plan I settled on was crochet and knitting hats.  

I know its a bit bizarre but stay with me while I explain......I have limited ability at both knitting and crochet and with the assistance of Youtube tutorials, I am slowly increasing my skill levels and so far I have made eight hats.  All pretty good looking hats actually.

My plan is to create a shop on Etsy and sell them.....or at least attempt to! 

Here are seven of the eight but please excuse the mess around them.

As for the pain, no real change.  I am three days into my increased prescription and am ever watchful for any kind of improvement.

Update Post Doctors

Its been a quiet few days - the pain has been much less although I don't count that as progress as there seems to be a cycle of pain with a few days respite every month.....it always comes back though and even as I type, I can feel the familiar twinge in my left hip :-(

Doctors this morning and a prescription increase to 25mg of Amitriptyline each night.  10mg has been knocking me out so not sure how many hours I'll be awake on 25mg but if it kills the pain, it will be worth it.  I can go up to 75mg apparently.....not sure I'd manage any awake time at that level!!!

The doctor was nice and supportive, and asked to see me again in 2 weeks if the pain was easing to cancel my sick note or 4 weeks if there was no change to increase the dose again.

I will write again tomorrow when I wake up!!!!

Another Week Bites the Dust

I've been a bit rubbish at posting this week - I think I've skipped two days!  Mind you, my excuse is pretty solid.  Pain.

After having built up my hopes that the medication was working, I have had a really bad week of pain.  Tuesday and Wednesday were the worst days, with the pain running into the evening which is unheard of normally.

Things were a little easier yesterday - the highest the pain reached was about 5/10 which is pretty hard to ignore but definitely an improvement on the day before.  

Last night was my 12 year old son's first parents evening at secondary/high school and despite being terrified to be amongst so many people (social confidence at an all time low now too), I dragged myself along, drove for the first time in over a month, got there late, avoided speaking to too many people, and made it home two hours later.

My son knew it was a big deal for me and thanked me when we got home, which broke my heart.  I mean.....why should a child have to thank his parent for doing something as routine as going to a parents evening?  Except for me it wasn't routine, and my gorgeous boy was wise enough to know that.

The pain today has topped at 4/10 which is great.  It started early though and lasted until 1pm.  I am also exhausted today after going out last night (albeit not exactly a wild night out and I was home by 8pm!) and the joys of my son having a nosebleed around 1am.

Exhaustion makes me snappish and difficult so this morning was pretty tense and argumentative between husband and I but we seem to have worn that out and harmony is now restored again.

The biggest issue I have at the moment (and I believe this is common for sufferers of chronic pain) is that I am struggling to understand what my purpose is in life.  I can't work, I can barely think straight, I am exhausted, I am not engaging with my son enough, my marriage is kind of on hold until I get myself sorted out.  

I am existing rather than living.  

And that just isn't enough.

At Least the Sun is Shining.....

I always find it easier to be positive when the sun is out in the morning.  Trying to get out of bed and face the pain seems harder when the skies are grey and its looks cold and damp.  

Sunshine on the other hand makes me want to grab the day.  So I find that on sunny mornings like today, I get out of bed and get myself ready with a smile which lasts at least until the pain starts (and sometimes beyond).

Today, I skipped breakfast.  The thinking behind this was that as my pain normally gets into gear around 10am, and I usually (whilst at home and not working anyway) breakfast at about 9.30.....ergo maybe food is what is causing the pain.

All that this experiment got me was the usual pain and hunger to boot!  Epic fail.  The pain is not related to my breakfast.

Yesterday I was firmly of the view that I have IBS (I swing backwards and forwards on this in the absence of any firm diagnosis) but today, I am more minded to think that the pain is psychological.  I suspect that my brain is so used to feeling pain in the mornings, that it kind of tells my body to do it.  And I must admit, I do almost wait for it to start - so maybe I am thinking the pain into existence?

There's a whole load of research on this that supports my theory - what I am less clear on is how to re-train my brain to concentrate on something a bit less painful.

So - pain levels today topped at about 7/10 - pretty bad by recent standards although a huge improvement on yesterday which was off the scale awful.  

Oh.....and lunch never tasted so good!

One Step Forward, Ten Steps Back

Today has been hugely disappointing.  Having built my hopes up that the medication was starting to work through tracking my pain and seeing a small reduction, this morning the pain was off the scale.  I was in so much pain, I could hardly breathe.

By 10am I was back in bed, clutching a hot water bottle to my left side, crying in frustration and pain.

It is hard to see how I can ever hope to get my life back.  Every morning is about pain.

I know that I am fortunate, and that there are many people who would give anything to have pain that only strikes for part of a given day, but for me, it seems like an insurmountable climb.

It is also hard to find any enthusiasm for how I look.  I am putting on weight (not moving much and comfort eating is not a great weight loss technique) and I can barely muster enough care to even put my contact lenses in.

I'm going to leave it there for today.  Reading about how rubbish I feel is not entertaining for anyone!

Sorry to moan......tomorrow might be better.  Fingers crossed.

The Pain Returns

Pain this morning is much higher than it has been for the last few days, and this leaves me feeling like I am moving backwards again when all I want in the world is to move forward.

Today, I have no energy, no conversation and no inclination to do anything except sleep.

I did see an interesting article that I picked up via Twitter (@movingfwdpain if you want to connect with me) about Mind Body Syndrome which seemed interesting although I suspect I have a fair few medical investigations yet to complete before anyone starts to consider this pain as being linked to my mind.  I will read up on it later.

The pain is coming and going, but much stronger than yesterday, which turned out pretty good in the end.  No higher than 5/10 all day which is fabulous.  This morning has already gone as high as 6/10 but not constantly so its hard to track.

I am due to return to my GP on 28th April but I'm not sure I can wait that long.  I really think I need to get my amitriptyline dose increased to get the pain under control so I can get back to work.  Problem is, of all the doctors I have seen at my surgery, only one has been forward thinking enough to give me amitriptyline out of maybe 8 different doctors that I have pleaded with to give me something for the pain and he was a locum.  

Today stretches ahead as a big cloud of grey.  I am hoping it clears by the afternoon so that I can at least get out and walk my dog for an hour but at the moment, it is hard to imagine how I will find the energy.

Oh, and just so you know, I did make it to the supermarket yesterday and although I was in pain, I managed to walk tall in my heels and hold my head up reasonably high.  I didn't see anyone I knew which was a relief.  In all, we were out for about 30 minutes and I was very happy to get home again.

Pain is hideous.  Pain without a known cause is worse.  If it is all in my mind, it is hard to see how I can lift myself out of it whilst the pain is raging.  A vicious circle it seems......

The Importance of Understanding

This morning started well enough.  Only very mild discomfort at first, and the occasional spike of pain - I can live with that!

I got up, showered, dressed - in actual clothes I could go out in rather than my "comfy clothes" that I have lived in for the last month - and prepared myself for a trip to a small supermarket.

Now none of this sounds like a big deal unless you know pain.  I have not been out of the house for much more than to walk the dog for a month now.  Going somewhere like a supermarket is a big deal for me simply because I don't want to see anyone, I don't want to explain why I look so awful, suddenly stopping and needing to be held up by my husband in the vegetable aisle is not something I want to repeat.  All in all, going to the supermarket is a big deal for me.

Unfortunately, my hubby had made his own plans for the day and when he explained them, I immediately panicked - it felt like he was expecting even more from me than the challenge I had already set myself.  So I said no.  And then I had to explain why.  And then I got upset.

The impact of chronic pain is very hard to explain to people who have never experienced it.  The level of isolation and hopelessness that the sufferer feels is immeasurable.  You lose the ability to function on a day to day basis because your illness is invisible.  I am still smarting from the news that an ex-colleague of mine saw me a few weeks ago in the supermarket and told people that I looked miserable.  What she didn't see was the fact that moments before, I had been stooped over, clinging to my husband, in the most excruciating agony I have ever felt.

You can't stand on a counter and yell out "I am in pain - not miserable - in pain!!!" - you just have to put one foot in front of the other, keep your head down and hope that you don't see anyone you know.

We aren't doing the things that my husband wants to do.  He has apologised for putting me in a difficult position, and now I feel rubbish because the things he wanted aren't unreasonable they just feel so impossible for me to do when in pain.

It makes me feel very frustrated that I have to keep explaining how I feel - especially to him - but then I feel equal amounts of guilt because his life is on hold just as much as mine is until I can get this problem sorted.

I will go to the supermarket, maybe put on a little bit of makeup to cheer my face up slightly.  Maybe even risk a pair of heels.

I look at pictures of myself taken a few years ago, and I wish so much that I was still the person I was then.  Life wasn't a bowl of cherries but at least it wasn't all about pain.  An invisible problem.  An impossible situation.  An uncertain future.

It's all in the Hip!

Well, its Friday and the week has seen some progress although by no means as much as I would like.

The amitriptyline is definitely making a difference - one that is hard to explain and not the huge, life changing difference that I was hoping for - but there is a difference.

Before I started taking the tablets (10mg), my pain would begin within moments of waking every day.  I would go from being peacefully asleep to writhing in pain within 5-10 minutes.  The pain would last until about 11.30ish, come and go in waves, and increase in severity and then die away as the morning progressed.

Last week was my first week on the tablets, and there was no difference at all in my pain, but I was sleeping better (I am a very light sleeper).  This was helpful in itself as any chronic pain sufferer will confirm that exhaustion is one of the hardest parts of dealing with pain.

Since Monday this week, the pain has started to change.  Increasingly, as the week has gone on, it takes longer for the pain to start.  Yesterday, I got to about 10.00 before it really kicked in.  When it does start, it is different.

It is like the medication (which simplistically interrupts the pain signal from the nerve and stops it getting to the brain) is dulling the spread of the pain, so I am not always getting the full sweep of agony from hip to hip.  This leaves me with the odd sensation of being able to feel what is going on in my left hip (which is the troublesome one!).

I can feel something isn't right in there.  I have never been able to "feel" anything because the spread of pain is so breathtakingly agonising that I can't truly feel anything.  Sometimes now, I can feel something.  I have also noticed that it hurts to move in my hip sometimes.

So....having had all gynaecological causes ruled out, what does all of this mean?

I have spent a HUGE amount of my week on Google and have come to the conclusion I must either have something wrong with my colon or bowel (although the location doesn't feel right), I could have a problem with kidney stones (renal colic has all of the same symptoms that I get) or there could be something wrong with my hip or lower back.

None of those suggestions go anyway to explaining why I only get the pain in the mornings though.

Hubby thinks it is nerve pain so that it my next Google session!

As for today....it is now almost 10am and the pain is just starting to get into gear - around 4/10.  This is later than yesterday so I will count that as progress.

Do I Dare to Hope......

Its 9am and I am pretty much pain free!  Could this be the amitriptyline doing its thing?

Not counting my chickens just yet - but if I can get to early afternoon without any pain I will be seriously thrilled......watch this space.

Update 11.47......  :-(

Off to a false start....

Today started really well....no pain on waking and just minor niggles in my left hip until I got up and made a cup of tea.  Then I was hit by the usual stretch of agony between my hips and across my lower back.  It lasted for a couple of minutes and then went.  Brilliant!

Or so I thought.  It's now midday and I am in so much pain I can hardly breathe - from hip to hip (although as always, still led by my left hip).  I feel like I am about to have a baby to be honest.  Its that kind of pain.

I was hoping to feel some improvement having started taking amitriptyline (10mg) just over a week ago but aside from sleeping much more soundly and a couple of vivid dreams/nightmares, there seems to be very little change.

I think I will give it another couple of weeks and then head back to the doctors and see if they will increase the dose.  Having read about how amitriptyline has helped so many people get free from their pain, I feel like I could be tantalisingly close to getting something of my old life back and I would give almost anything for that right now.

My Pain Journey

Anyone who has experienced a pain that cannot be explained has my sympathy.
There is very little I can imagine that is more frustrating and hopeless.  I can say this with a degree of authority because I find myself in that very situation.

Since 2012 I have experienced abdominal pain - it started as a mild cramping in the middle of my monthly cycle and slowly got more bothersome, then moved to painful and in the last 10 months has shifted to agonising. 

At the beginning, I wrote it off as being part of the joys of pre-menopause (a term I was joyfully labelled with by an ecstatic female GP when I was a youthful 35 and seeking assistance for a female issue) but after a while it got worse and so I made an appointment to see my GP.

An ultrasound scan, blood tests and a couple of appointments later I was given the totally unhelpful and altogether too widely applied diagnosis of Irritable Bowel Syndrome - or IBS to its friends.

At the time, I though this was great - I had a stressful job, the pain wasn't so bad and I could probably manage it with a bit of yoga and a small adjustment to my diet.  

I was very, very wrong.

Fast forward to 2014 and I could be found doubled up in pain at 3am most mornings, and could find nothing to ease the pain.  It came and went at its own pace - always early in the morning, waking me up, but never stayed past midday.  I continued to blame my job and sky-high stress levels and tried to manage my life the best that I could.

But the pain carried on getting worse and eventually, in October last year my husband dragged me back to the doctors and insisted that they do something.  By this stage, I was exhausted, depressed and desperate.

A different GP this time (the joys of a locum-heavy surgery) and the earth-shattering revelation that the pain was not in the right place for IBS!  Focussed mainly at the edge of my left hip bone, the GP was certain this was not characteristic of IBS and referred me for yet another ultrasound scan.

The scan was clear - the poor woman who did the scan was rather disconcerted when I cried at her positive news as by this stage, I would have given anything for a diagnosis of something that could be fixed.

Back to the GP (a different one again!) and this time, a referral to a gynaecologist.  This felt like proper progress as I was certain by now that my abdomen must surely be choked with severe endometriosis or a huge cyst thanks to my reliably supportive and medically brilliant friend Google.

In January 2015, I saw the gynaecologist and she conducted an examination and found a mass - hooray!!!!!  I was so elated!!  An actual thing that was causing the pain!!  It was between my bladder and my womb and so the next step was a laparoscopy and a cystoscopy - with a 4 months waiting time.  Happy face gone.

In the end, my husband persuaded me to have the procedures done at a private hospital - and we justified the huge cost as being worthwhile as it would give me my life back.

On the day of the surgery (23rd March), the gynaecologist/surgeon asked me to sign a form giving her permission to remove anything that she found whilst I was in theatre and I happily reaffirmed my wish that she take out as many ovaries, fallopian tubes, wombs, cysts, endometrial adhesions as she needed to to get me fixed.  I practically sprinted to the operating suite and held out my hand for the anaesthetic without a moments hesitation.

An hour later, my hopes were shattered.  As I came around, the surgeon explained that she could find nothing at all to account for my pain.  My organs were clear of any trace of endometriosis, no cysts and no sign of the "mass" that she has felt during the previous examination.  I cried.  For days. No solution, no way forward and a huge debt to pay for the surgery to add insult to injury.

Three weeks on and I am in pain every morning.  I am exhausted and struggling to see any light at the end of my tunnel.  

A colonoscopy and referral to a pelvic pain clinic are the next steps now but with a waiting time of another few months, there seems to be little reason to smile.

So.....what next?

Googling my symptoms highlights the thousands of people all over the world who are desperate for an answer just like me.  Medical forums are full of people looking for something that will help them.  I am hoping that this site will provide a place for people who suffer from chronic pain to come together and share their stories, find support and finally feel that they are not alone in their suffering.  I know that I need all of those things.  If you are reading this, do you need them too?

Todays Pain.....

In the hope that I might spot a pattern, combined with a wish find others with the same pain experience as me, I will occasionally post details of my pain on a given day.  

It changes both in severity and location and I am hoping that through expression, I can begin to come to terms with it.

(I rate my pain on a scale of 1 to 10 so that my husband can relate to it in some way, so I'll use that here so you get an idea of things.  For context, the highest I have gone is a 9 and that is basically pain so bad that it makes you dizzy and almost black out).

When I woke up today, as is common, I had no pain at all.  Within a few minutes the pain at the front of my left hip bone started and was just about tolerable - lets say 3 out of 10.

Within 30 minutes the pain had increased significantly and the ache had spread to my right hip and around my lower back.  I was also getting pain down my left thigh.  

Sometimes I think its worse when I lie down (which is a real killer seeing as when I'm in pain all I want to do is close my eyes) so I forced myself out of bed and into the shower at 10am.  I honestly thought if I got angry and determined enough, I might be able to distract it away, so I even attempted some housework......all pointless and just wore me out even more.

The pain stayed at about 8/10 most of the morning and came in waves - a few minutes of pain-free respite and then 15-20 minutes of full on agony.

By 13.30 it seems I was all done for the day.  The pain stopped and so far hasn't come back.  That is quite normal for me.....I rarely get any pain after lunchtime....it is one of the things that I find most frustrating as the medical profession seem utterly baffled by that fact alone.

So....today's summary is:

1. Pain started after I woke up
2. Overall pain rating 8/10
3. Mood - very negative, angry and tired

Actions taken to handle the pain were as follows:

1. Paracetamol - no doctor will give me anything stronger :-(  
2. Numerous hot water bottles
3. A huge amount of crying and general anger/frustration