Update - A Full Diagnosis At Last

I was so fed up with the whole situation that in October I decided to take this blog down. In anger.

I was very low.

Then in November I was lucky enough to take part in the Arthritis Ireland short course called 'Living With Arthritis' in South Galway.

It was wonderful to meet other people who had been through and who were going through the same or similar things as me. And I learnt how to feel more empowered to ask for what I wanted etc when seeing my GP and rheumatology consultant.

It's a very worthwhile course to attend for anyone with arthritis of any kind and at any level.

On December the 8th 2009 I had my next scheduled appointment in the HSE Merlin Park Rheumatology Clinic.

By some wonderful quirk of fate I was there on a day when the 'other' consultant (not my normal one) had his clinic (apparently they work a rota of clinic and wards between the 2 consultants).

This time I saw Dr Carey and a very thorough doctor working with him. I was treated as an individual, asked many many more questions etc than ever before, with exceptional manners and kindness, and was included in all discussions and decisions.

Dr Carey made a diagnosis of Osteoarthritis (which my previous consultant had already diagnosed), Rheumatoid Arthritis and Fibromyalgia. I was so relieved that someone at last was taking all my pain and difficulties into the picture and seriously. Despite the unpleasant diagnosis - it was a massive weight off my shoulders to know just exactly what is going on.

I have been prescribed Lyrica for the Fibromyalgia pain and Plaquenil for the RA. The Lyrica dose is fairly low and both will take a good while to take proper effect, so I will be patient and wait and see if I am lucky enough for them to work. I believe it is 4-6 months for the Plaquenil to take full effect, and a bit less for the Lyrica.

As soon as I start noticing a difference I will post it here.

I have since managed to be able to afford heating oil - so my house is toasty and I have hot water at last as myself and a friend fixed the airlock in the system.

I am taking a lot less Solpadol, partly because my GP doesn't like me taking it and that rubs off - I feel guilty taking it - and partly because it really barely makes a difference a lot of the time...

The pain and stiffness is therefore pretty bad still most of the time, and can at times be unbearable. I only take the Solpadol now when I can't sleep because it hurts too much, or if I am trying to work at something and the pain/stiffness has got too much and is stopping me doing the work.

The rest of the time I try and ignore it.... and I admit to being quite used to living with it now.

I still hate the pain though...

Pain Rant

This is a Pain Rant

A major Pain (and anger) rant

I have had a day from hell

Yet again

And I am 100% sick of it....

I ran out of my Solpadol painkillers this evening, which I feel guilty taking because it is always emphasised to me that they are addictive blah blah blah BLAH

Why the hell would I want to be addicted to something that barely makes a difference to me and my pain ? I've heard rumours that taking 60mg of codeine once will make you as high as a kite, let alone taking it 3 times a day....

All it does for me is SOMETIMES it takes the top edge off of the pain... and SOMETIMES it slightly relaxes the muscles...

And sometimes I would never know I'd taken it... so much for the wonderful euphoric effect

I wish !

So... I had 2 doses and then none for this evening... although the 2 lots I took today had hardly any effect. I have had a day of horrible pain and stiffness, and to make matters worse it was cold and I had to pay late bills instead of ordering heating oil with my meagre months salary (€300 for part time work) !

And another thing... I have apparently had arthritis for years as an adult (besides having Stills Disease as a child since I was 2), and now my spine is also affected seriously, why, at the very most, does my consultant only ever offer me NSAIDS ? Which he knows I can't take as my stomach is ********.

Why after several years seeing the same consultant do I not have a full diagnosis and and am not being treated specifically ?

A part of me says 'Girl YOU don't complain enough maybe'.... And then... at times... I even consider that maybe I'm imagining all this pain and inflammation and I'm not given the required drugs as I'm not ill enough to warrant them...

See how insidious the whole situation gets ?

All I know is I'm sick of IT.... Sick of the constant never ever ending pain and stiffness.... It's like living your whole life walking through MUD, and having PAIN walking through mud... Even opening a door hurts in the joints of my hand and in the arm muscles and in my shoulder...

I have to consciously consider and think about every single movement I make, and I can feel every single movement I make, feel it in every single muscle in my body. I have to consciously walk, it's no longer unconscious.

SO

Despite the fact that I can't even afford heating oil, or a plumber to fix the system and restore my hot water, I will scrimp and save and go without...

I am going to get an appointment with another consultant and if I'm lucky hopefully make life bearable again, because as it is I do nothing but struggle through pain and extreme exhaustion. I have almost no current quality of life.

Watch this space...

Helicobacter Pylori & The Urea Breath Test

My latest run-in with NSAIDS (Mobic this time) has caused my stomach to act up again (I had duodenal ulcers from age 19).

So, thinking that with my history there is a good chance I have H Pylori bacteria in my stomach, I asked my GP to test for it. I was told that she would have to refer me to my gastrointestinal consultant and he would do an endoscopy (which would include a biopsy) to see if I had H Pylori.

This is utter madness.

In the UK (and almost all other countries) H Pylori is tested for using a simple test in a GP's surgery or even in some pharmacies. It is called a Urea Breath Test and costs a maximum of £20 to the GP & the NHS in the UK, so about €25 here. This is the accepted industry standard first line of testing for H Pylori. And it is incredibly accurate and easy to administer. No anesthetics, no consultant, no invasive procedure which is horrendous for the patient.

The HSE are causing patients much distress and using an invasive procedure when a very simple 30 minute test would suffice.

WHY ?

One can only assume to make more money for the consultants and anesthetists etc.... because there can be no other reason. Any excuse they might make is just that, twaddle to perpetuate a third world health service.

Mary Harney would do well to read this blog, and try saving the HSE hundred's of thousands of pounds every year, if not millions. GPs can diagnose and treat H Pylori in the stomach (at least 80% of ulcers and excess acid etc are caused by this, and even probably stomach cancer. FACT).

A consultant is only actually required when the industry standard 1 week triple therapy fails (3 drugs, 2 antibiotics and 1 proton pump inhibitor, which often kill off the H Pylori).

So - Ms Harney - any chance of introducing the Urea Breath Test into Ireland so that the GPs can diagnose and treat patients efficiently, simply and cheaply ?

Any chance you might like to save the HSE a massive amount of money ?

I wonder...

Pain Control (or the lack of)

Today was the culmination of a very long week...

I can't take NSAIDS because of a very (apparently) damaged stomach, although my consultant recently asked me to try Mobic which I had to stop as it still caused my stomach a lot of pain.

So I'm using Solpadol when it gets bad enough and I need to clean or garden or something. However, I hate using such a strong painkiller, especially when all it really does is take the top edge off the pain.

So being a very determined lady who hates drugs of any kind, over the last 2 days I didn't take any pain relief. I spent half of today in tears and frustration. I caved at about 6pm and took a dose of Solpadol.

I also rang a local excellent deep tissue massage lady (A Woman's World in Gort) and booked myself in for tomorrow (which will cost me 25% of my weekly income as my consultant won't offer me physiotherapy).

Now... why aren't the HSE providing physiotherapy ? Why have I not been offered disease altering RA drugs ? Why are they letting my joints disintegrate, as well as my spine and not offering anything other than NSAIDS which they know I can't take, and Solpadol which I'm told I can't take many of as it 'isn't allowed' and I may get 'addicted' ?