No from NHS GP for LDN for ME/CFS

What a lot of letters. But it is (as expected) a no from my NHS GP for prescribing LDN for ME/CFS.

She was apologetic, bless her.  But her hands are tied.

One good thing came from it though (which I need to back up with some bits of paper) and that was to let her know that the official person in their practice was mistaken in saying that you can’t get low dose Naltrexone in the UK without importing it and spending a lot of money.  Because I’m assured you can get low dose LDN for a decent price if you know where to ask.

If you try to get it from a local chemist in the UK it may end up costing a fortune (like £350?! No joke!).

But there is a pharmacy in Glasgow who will provide it mail order for £15 a month for liquid or £27 for tablets (at time of writing).

I found the info for them out on this forum post and here is the actual pharmacy site http://www.delivermyprescription.co.uk/about.htm

You do of course need a prescription from a doctor for it first!

But I can let my GP and her official people know about this because if anyone goes to my practice with MS and asks for LDN they stand a much better chance of getting access to it.

 

Meanwhile I will now have to decide whether to pursue a private prescription for LDN.  Which might involve having to travel for a consultation and certainly having to pay.  But not crazy money and all quite possible.

My best option seems to be to go through this e-med service detailed on the LDN Research Trust’s forum

The money and possible travel for consultation is one thing for me to get past but I think it’s also the idea of being scrutinised for a diagnosis that makes me wary.

But what is fab is not only do I have my Lovely GP’s blessing to go and get a private prescription but she’s very keen to find out from me if it does indeed help.

I’ll leave any decision making to another day.  But I expect I’ll be back on the internet within the hour assessing my options

 

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.

Fireworks Fizzle

Wouldn’t it be lovely, I thought, to go to a bonfire this week and see a fireworks display? (Bonfire Night, Guy Fawkes and all that).

Then I remembered 4 or 5 days have passed when I haven’t felt up to having an assisted bath.  How am I going to be up to going out, in the cold, surrounded by lots of people and noise and stimulation, when I can’t even manage to plonk myself in a bath and be washed?

I suppose it’s because fireworks are something I can watch and enjoy, passively, along with my husband and others.  I want to be bundled up, wheeled out and shown something outside of the everyday.

But also I’ve been feeling this week like I just want one day, or even half a day, where I just get to be normal. Or pretend to be normal.

I’m wishing to go out for a meal, or just eating anything I want to just for one day.  Can I just have normal stomach and bowels for one day please.

I found myself daydreaming this week about what I would do if I was 100% recovered right now.  I saw myself doing so many things and the more I did the more I wanted to do.  Drive to my mom’s and do all those jobs that need doing, drive to my dad’s and help him lay that terrace and do all that DIY he can’t do right now, spoil my husband, clean my house from top to bottom, look for a job, catch up with friends and family, paint and sculpt all day long, make love.

No wonder my mind is whizzing with a hundred different thoughts yet I lack the oomph to make any sense of anything.

Do I cope well living with ME/CFS? Maybe.  Do a thousand things never happen and everyone just has to live with that? Yes.

Brain Fog Blessing

Can that title be true? Can brain fog ever be a blessing?

Thanks to a huge effort on Growler’s part my application to renew my Disability Living Allowance (DLA) is finally completed and being posted today.  A few weeks past my award ended but it’s finally finished.  Brain fog, cognitive, memory, sequencing and communication problems have made it impossible for me to complete such a complex application on my own.

Brain fog also means I can’t quite believe that it’s now over 2 years since I first applied for DLA.  Or that I was diagnosed with ME/CFS 7 months before that.  Or that I’ve actually been ill enough for it to affect me day to day for at least a year before that.

My brain fog almost cushions me from the stark reality that I’ve been ill, every single day, for years.

I was going over some of my blog posts from the last time I applied for DLA.  The posts from 2 years ago seem to have much the same themes as I live and struggle with now.  How I live with them has changed a little, but the landscape looks much the same.

Some months after I got diagnosed a couple of people with ME said “the first year is the hardest”.  It seemed a little damning.  I didn’t want to be ill beyond a year for goodness sake!  And here I am a couple of years on reflecting that they were probably right.  Except the first year of being ill, AND then the first year of being diagnosed whilst having become so ill I couldn’t work or do anything very much, were both equally as hard.

I’m wondering whether the reason I don’t blog as much about life with chronic illness is that I feel I’ve said it all before.  I’m just revisiting old ground.  But I have to remind myself (and you) that you’re never stood in the same place twice in life, because whilst you can go back to the familiar you and the world have all changed a little since you were last there.

Maybe blogging about life with chronic illness does get kind of same-y after a couple of years – but that’s surely a reflection of what life is really like?

I got told this week that the way I deal with my illness is an inspiration (which from the person who said it was meant wholheartedly and not in a patronising way at all).  I’ve been told similiar things by others.

The thing is we who live with conditions like ME/CFS come to learn that you just have to do the best you can with what you’ve got.  It’s not about being brave or being amazing – it’s a lot to do with not really having much of a choice.  You have to kind of get on with it, or give up.

I’m pretty sure that if I didn’t have Growler to keep me on an even keel this would be a different story.  There would be a lot more wailing and gnashing of teeth.  So maybe I do in fact do a good job of living as positively as I’m able. Hmmm.

So anyway. Here’s to revisiting the same old ground on new days and trying to be chronically happy along the way.

Being Believed Continues

I saw my Lovely GP this week after my medication got flagged for review, meaning it’s been a year since I last saw her.  Nothing much has changed in the last year, in fact in the last 2 years.

Seeing my Lovely GP, who is supportive about ME/CFS, usually leaves me feeling re-assured but a bit depressed because there’s nothing much she can do to help.  She prescribes to help control symptoms where she can, she offers referrals if I want them but doesn’t press anything on me.  But I leave with a sense that there’s nothing much anyone can do to help no matter how much they want to.

I read something on the internet about how many GP’s now go through the motions with Chronic Fatigue Syndrome patients.  They say the right things because the guidelines say they have to treat it as a physical illness. but privately they think their patients are just crazy or malingerers.  The advice being don’t let the patient know this because it only fuels the fantasy they are ill.

That’s pretty awful stuff to wrestle with.  Because even if my GP makes the right noises how do I know they are really invested in my care?

Well I plucked up the courage to ask my Lovely GP this time around if she had heard of  LDN (which is for another post) and if she would ever be willing to prescribe “off licence”.  She said she hadn’t (but could I give her any information) and they don’t usually do that (very sorry and all that).

I tell her a quick summary about LDN, give her a piece of paper with some urls on it and she flicks through one of her books with medications it in.  She says she will certainly take a look at the info and she will present a case to the lady in charge of deciding these things and see what she says – although she wasn’t too hopeful it would be a yes she was promising to try and get an answer quickly for me.

Exciting! My Lovely GP is willing to try even though some doctors would now be writing “difficult patient” on my file.

So, I ask, if the answer is no to prescribing it off licence would she have any objection if I were to seek a prescription for it from a specialist GP or private doctor. No problem whatsoever, absolutely, go for it.  Anything I think might help she is for me trying.

We reviewed my exisiting meds and I’m going to try upping my amitriptyline to 30mg as I’m needing more pain killers and migraine meds recently.

I told her we were in the process of re-applying for DLA (Disability Living Allowance)and could I drop a copy of our form in again for when she needs to write her report to them. Behind you 100% she says. Anything I can do to help with that she says.

OK, so while I’m here … my early blood test results have been bugging me.  Because my red cell count was high consistently but I was told it was “my normal”. Could anything have been missed?  She looks at the results and says very apologetically that’s it’s very moderate and there’s nothing really there of clinical interest. Sorry.

I’m getting answers!  I’m not getting diagnosed with something treatable but I’m getting answers.

So as I’m about to leave Growler asks if I’m want to mention XMRV.  What’s that then she asks.  She hasn’t seen the news. So I give her a quick summary about the research findings.  And she gets excited. A retrovirus?  How interesting, let me write this down. 

This is another reason for asking about LDN, because it sort of strengthens the case – it being effective with HIV (another retrovirus).  Except she says this at the same time as me.

Wouldn’t it be wonderful, she says, if it were found to be the cause?

Any doubts I ever had about whether my GP really believes in ME/CFS, or whether she just humours me, were set aside during this ten minute appointment.

I saw her willingness to help, but her being bound by the rules.  I saw her interest raised with news of a medication she hadn’t heard about and with research with significant findings.  I saw her keen to go read more and find if there was a way to help her patient, to help me.

I also had a few more hints that she has personal experience of ME in her close family – which goes a long way to explaining why she’s supportive, open minded and just a little frustrated with ME/CFS.

Having no doubts about her belief in my illness and her belief in the challenges it presents to me day in and day out, means a great deal to me.  Also I now know I need never be afraid to print out an article of interest into new research or treatment to share with her.  She’s not going to give me a black mark as a difficult patient.

Her support has given me a blue badge to use disabled parking, a Disability Living Allowance, medication for symptom control, re-assurance, knowledge, a diagnosis (which no-one else would give me) and hope.

I once read that the best gift you can ever give to someone is to believe in them.

I thought it just meant to believe in their potential, but I’m learning it reaches much further than that.  And it is indeed a wonderful gift to receive.

On Being Believed

So this XMRV retrovirus, the possibility of having a tangible test that shows a significant physiological finding, got me thinking about what it means to be believed.

My family, my friends. my husband, my GP – they all believe I am very ill with ME/CFS and that is a physical condition.  But with nothing to point at it to say this is what it is, everything feels a bit woolly and mysterious.

I find myself from time to time with the doubts, fears and questions of what this all means.  What is it that’s exactly wrong with me and more importantly how can I get better? 

Recently I’ve read a few people with ME who say they too get those moments where they start to wonder if they are imagining it all. Can they really be this ill, for this long?

When I was 24 I became very ill with depression.  I had the beginning of what I would consider a sort of breakdown.  I was crippled by fear, confusion and a sense of hopelessness.  I was in a very low, very bad place.  I was lucky enough (and brave enough) to attend 9 counselling sessions through my employer at the time and struck gold with a counsellor who made a significant impact on my life. 

One of the simplest things she offered was that she believed me.

My GP at the time had been dismissive, saying I couldn’t be depressed and conduct myself in the sensible manner I did at his appointments.  He reluctanly prescribed ant-depressants once he knew I was getting counselling.  He was, in short, an ass and compounded many of the root causes of the depression.

But my counsellor had no doubts about the state of my mental health. Let me get to the point.

I remember saying to my counsellor, through a haze of confusion and pain, that sometimes I wondered if was really depressed or if I was just making it all up.  Pretending somehow.  Because sometimes it didn’t feel like it was really me.

She told me that of course I was going to feel that way sometimes.  Because it’s far easier to think we don’t really feel that way than to have to accept that we do.  It’s easier to live with the lie that we’re ok than to face up to the problem.

It makes sense to me.  And it translates to chronic health problems too.

By the way,  the depression is long since gone.  It took more years to pass and more support from a GP, a counsellor and a psychologist to set me free.  But with their belief in my illness, their support in it’s treatment and my own faith in myself I did beat the depression.  Back to being believed …

At around 27 years old, a year on from my recovery from depression, I had started to get fit again.  I walked a lot and I was going to the gym a couple of times a week. 

I started getting a funny pain in my left leg.  I stretched more.  I exercised more.  The pain got worse and it was there every minute of every day. 

Eventually I saw my GP about my funny leg pain that wouldn’t go away.  He told me he thought it might be a problem with my back, which seemed a bit weird to me, but he would refer to a specialist for some tests.

The pain got worse.  It started to wear me down. And the pain kept getting worse.

Before I saw the hospital I needed to move house.  I’d moved quite a few times in the proceeding years and always got stuck in.  My dad and brother came to help.  The room I lodged in was up two flights of stairs.  By the second or third trip up and downstairs carrying boxes I was feeling exhausted.

I remember my dad was pretty appalled by my apparent lack of fitness.  I needed to sort myself out. 

I didn’t know what was wrong with me but I knew something was wrong.  I’d had a driving lesson where I was in so much pain and so locked up I couldn’t change gear.  I would press the peddle and shout the gear to the instructor who would shift the lever for me.

Was I making this up?  How could a funny pain in my leg stop me from changing gear in a car or carrying boxes up and down stairs? Could it all be psychological somehow?  What the hell was wrong with me?

At the hospital they knew straight away that the funny leg pain was sciatica.  They even knew where the damage was in my spine just from where the pain was located in my leg. 

When she showed me my x-ray there was no longer any doubt.

The lower discs in my spine were (are) crushed.  The bottom disc was (is) seriously squashed.  Kind of like the width of a coin compared to the healthy discs higher up which were more like a finger width.  This was damage acquired over years and years.  It was permanent and it was irreversible.  I was 28 years old. 

The specialists assistant said “there aren’t many people your age in as much pain as you are right now”.

Suddenly the months of struggling were all real, all honest, all explained. 

I knew that in fact I had been performing well beyond what could have been expected of me.  When I think back now to the pain I was in then I would not have been going to work, let alone doing half the things I had been.  In fact I’m not sure how I managed, living alone, having to do everything for myself with that amount of pain.

When I told my parents about the diagnosis, about the lifestyle changes the phsyiotherapist had told me I must make (permanently) to save my spine, it felt like it changed everything. 

I hadn’t been making this up.  The pain had been much worse than I had let on.  The constant never ending pain had indeed been taking it’s toll.  Now I had an x-ray that showed all of this was real.

It took a long time to adapt.  But once family, friends, colleagues and even me had something concrete to know this thing was real and why it was happening, I knew that they could believe in the pain.  They could believe in why I had to say no to doing certain things and why I had to make certain changes in my lifestyle.  And I could believe in it too.  There was no doubt, no hiding, no denial.

So XMRV, ME/CFS and belief?

XMRV could be the key.  Not just the key to perhaps what causes ME/CFS, or is a contributory factor in ME/CFS.  But the key to belief in ME/CFS as physical illness.  A simple blood test to show a significant abnormality.  A simple blood test to let myself and others have no doubt.

Because being believed doesn’t just unlock treatment.  It unlocks understanding, compassion, awareness, support and certainity.

I don’t know yet if XMRV will turn out to be the key.  I can’t say the prospect of being diagnosed with a retrovirus that I cannot ever be free from and that I am in danger of infecting others with, is something I welcome with open arms.  But the proof, the piece of paper, the confidence in the diagnosis, is something I would like very much indeed.