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...

Off The Grains - Result

Well its been a while now since I decided to try and see if not eating grains made any kind of difference to me personally.

I was 99% good !

And 1% bad....

Well we can't all be perfect. Especially not me!

I mostly didn't eat any kind of grain at all. I lapsed on a very few occasions, such as croissants... a cheese and marmite sarnie.....small bits of rice... testing a bit of a peanut butter cookie I made for a friend...

I actually do feel a bit less stiff, and in particular much less bloated. But the pain levels are the same. As a result I will definitely continue to eat a lot less grains, in particular ones containing gluten, as the less bloated feeling is much more comfortable all round.

I have some very good tasting gluten free wholegrain organic pasta made by Doves Farm in the UK. They make a fantastic range of very high quality organic flours and related products, which I use whenever I can.

I have also almost completely cut out sugar, but I always put honey in my drinks etc anyway. Maybe this has also helped with reducing the stiffness slightly, its hard to tell. However I ate very little sugar before reducing it.

But I definitely feel less bloated and therefore more comfortable.

And I have lost 10lbs ! Which is a big bonus for my joints and muscles and my back.

Sunshine and Gardening

Today is the third day of gorgeous warm sunshine and pale blue skies here in the west of Ireland.

Its heaven. Its a sheer joy to sit with limbs and skin exposed to the warmth and feel some of the pain just ebb away. Maybe its the lovely feeling of warmth on the skin, but to me heat is one of the most instant and noticeable forms of pain relief.

I have pottered in the garden with 'rests' in between with my legs up and a good book... and at times the sheer pleasure of it makes me forget the sluggish feeling and the all over hurt. I can understand why people emigrate to warmer climates.

Only problem with that is you have to leave behind your good friends. And they are as important as heat.

Besides, you have to be pretty well off to be able to afford to move country !

However, I have the perfect solution... win the Euromillions and then buy a second home on a remote Greek island, or if you prefer more action, southern Spain... then spend your life between Ireland and the warmth of the med sun... MMMM.

I also love being warm ! And dreaming...

Well now its back to the polytunnel as I have a jungle of weeds in there that I remove bit by bit. I won't use weedkiller as I like to grow my veggies and fruit as organically as I can.

I am what I eat.

It is also good gentle all over exercise. I just have to watch my back as I have arthritis in my spine also.

H Pylori & Manuka Honey Treatment

I am still taking the Manuka honey about 30 minutes before every meal and I am extremely happy (and amazed) to report that I have not had a 'sore' stomach for over 5 days now. According to all treatment plans with Manuka, you need to keep taking it for between 2 and 4 months to ensure that all H Pylori are totally killed off and don't return when you stop. So naturally I will keep going (besides it tastes heavenly).

Cutting Out Wheat and Grains

It has been a week now since I ate any grains, and I can't say that I notice any difference in my pain levels or the inflammation. One thing I can say is rather different is that I don't feel as bloated around the middle, more comfortable somehow, less fat in the tummy !

I will try and stick to it for another week, just in case.

Diet & RA Continued

I was reading this morning, yet again, about diet and rheumatoid arthritis, and I found the following paper

http://www.nutramed.com/arthritis/arthritisfa.htm

It is very interesting and adds more confirmation to what I have been thinking for a while, based on my own feelings and experience.

Perfect over your afternoon coffee !

Food and Rheumatoid Arthritis - An Experiment

I have long been aware that after some meals etc I feel a lot worse, generally, all over. Especially the inflammation and its effects.

I know that potatoes can make me sweat and feel odd, and alcohol gives me a temperature and makes the RA 10 times worse almost straight away...

But I have never tried proper exclusion diets to see if certain food groups are causing some of the extra pain, stiffness and general feeling of illness.

I was recently reading an article about lectins, the different kinds and the different food groups they are in (www.krispin.com/lectin.html). I had found it when searching through google for information on food and RA. It adds a lot of little missing links in the info I already have in my head... and was very interesting.

So, as an experiment, starting yesterday I have cut out the first food group containing a certain kind of lectin, that is grains containing gluten. This is all grains, including wheat, quinoa, rice, buckwheat, oats, rye, barley, millet and corn. This naturally means I won't eat grain vinegar and alcohol, among many other things. I don't eat many processed products, so I won't have to check many labels !

I will stick to this for 2 weeks and then see what is different, if anything.

After that I will, in turn, cut out legumes (all beans), dairy, and finally the nightshade family (potatoes, tomatoes, aubergines aka egg plant, and pepper/peppers).

At this point, going on my past instant reactions to potatoes, I suspect the final group, the nightshade family. But only by doing this clinically will I find out for sure if any of these groups are aggravating my system.

Manuka Honey, H Pylori & Stomach Disorders

A few days ago I started using active Manuka Honey to see if I can stop, once and for all, my ongoing stomach pain problems. These I have had since I was 19 and I'm now 48.

I should add that I eat a very balanced, mostly organic, diet. I rarely eat junk food, I drink alcohol about 4 times a year and rarely drink fizzy drinks, eat sweets or fatty foods etc. I only use olive oil to cook with and mostly steam or bake my food (not fry). I have never smoked or drank to excess.

My diet is not and has never been the cause of my problem.

I have taken Pariet (a proton pump inhibitor) for many years now as a maintenance device, as if I don't I'm immediately in horrible pain, as well as often feeling sick (due to excess acid and the pain mostly). Also, even while taking the Pariet, I only have to sniff asprin, or any asprin related drug like NSAIDS, and it starts.

As I was not offered the simple Urea Breath Test to see if I have H Pylori or not (please see previous post), I decided not to wait to discuss endoscopies with a consultant (not required anyway in this instance and in my case dangerous as I have severe sleep apnea and choke during the procedure, meaning I stop breathing, as it involves an anesthetic).

Taking the Active Manuka Honey has zero side effects, unless you are diabetic or allergic to honey, in which case you can't take it. So it's 100% safe for me.

It slowly, over a period of between 2 and 4 months, kills off all the H Pylori bacteria totally. Which means no more pain !

The only draw back is the cost, about €40 for a weeks supply of the 400+/20+ strength. This is the strongest version I have found around where I live in Ireland.

I will report here as to how I am improving with it (I am positive and I really would like this to solve my stomach problems).

About 30 minutes before every meal, I eat 1 good teaspoon of the honey on about an inch square of bread. The bread is important to keep the honey in your stomach longer, to keep it working there longer. I also take 1 dose in the same way, just before bed.

I am still taking the Pariet, as this does not affect the action of the Manuka Honey in any way, and complementary practitioners will mostly advise that you continue with it through the treatment until cured.

There is another complementary medicine alternative to this treatment for killing off H Pylori, called Mastika. You buy this in capsule form from a good health food store and take several capsules each day.

If this doesn't work for me, then I don't have H Pylori and I will know for certain that my stomach problems were caused by the high dose asprin I took for Stills Disease (a form of juvenille RA) throughout my young childhood.

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' ?

An Introduction To Me

I have had RA since I was 2 (Stills Disease). You would think that I would be used to it, and in some ways I am. However, it partially went away from about age 10 to my mid 30s and then re-appeared, slowly, insidiously and bit by bit eating into how I led my life.

It is now, as a 48 year old woman, that total acceptance is impossible. If I totally accept it then I am letting it have its wicked way. And as long as I fight it, it will never win. I feel very strongly about this, as positive thought begets positive action.

RA is an auto immune disease. This is where the body’s auto immune system attacks the body’s own tissues, in the case of RA primarily the joints and the tissues surrounding them, and in some cases other organs of the body.

Your immune system normally hunts down and then kills off all invaders in your body, such as infections and such. With an auto immune disease such as RA, it also attacks healthy tissue, creating the well known inflammation associated with RA.

In my mind Rheumatoid Arthritis should not have the word ‘arthritis’ in its name. It is a systemic illness involving other parts of the body, as well as the joints. In some quarters it is known as Rheumatoid Disease, and personally I prefer this. But that’s just me being awkward!

How it affects me

I have pain in almost all my joints, some a lot more severe that others, and to varying degrees. Sometimes certain joints are worse, and then another time it will be different joints that cause me the most annoyance.

I have pain in every muscle in my body. I literally hurt all over. They are also all ‘stiff’, and at its worse, it’s as if I have semi cramp all over. I assume this is caused by inflammation.

I don’t have the strength in my muscles I once had (and no it’s not old age!)

The constant severe inflammation in my wrists appears to have caused carpel tunnel syndrome in both hands.

Practically it means I can’t turn taps off properly. I have to lift a kettle or saucepan with 2 hands as I am liable to drop it (I don’t always have as tight a grip as my brain tells me that I do). I have to use my upper arms and shoulders to lift myself out of a bath (extremely painful as the RA is in them too of course). I can’t kneel down at all as the pain is unbearable. Stairs are a pain in the neck (and the knees and the rest of the body) as on a bad day I have to drag myself up via the banister. I have to lift myself off of and out of chairs, which is very painful. I can’t start my petrol lawnmower, chainsaw, brush-cutter etc anymore, (I have had to buy namby pamby electric or battery versions). I am often exhausted just sweeping one room, and then of course bending to use the dustpan and brush is extremely painful (which means I use avoidance and the house is not always as spick and span as it should be). And as for dating… what guy wants to date a woman who can barely do steps or stairs and who has to lift herself out of a chair in a restaurant !

Having said that, to the best of my ability I do not let it stop me doing anything. And I never will.


Additional Info - In early 2010 I was also diagnosed with Fibromyalgia, which explained a lot of the strange things I had been complaining of.  It was also confirmed that I had some damage from Osteoarthritis, probably due to damage as a child, and the joints not wearing normally as an adult.

Welcome

Welcome to my very first post on my new blog - Living with Rheumatoid Arthritis in Ireland.

I intend to make this not only a record of my experiences of the disease, but a source of information, a place for sharing and a haven for people who feel isolated in their difficulties.

I hope to post a minimum of twice a week, maybe more. I want to make this a fun place, as well as an information and ideas place.

Many thanks for visiting and I hope that you come again as often as you wish.

Please say hello, either by comment or email. I would like for this to be an interactive blog as much as possible. To make that possible I am happy to post peoples experiences and ideas, but I will always research things myself prior to posting to ensure a fair and accurate blog.

Happy reading !