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.
6 September 2009
3 September 2009
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.
1 September 2009
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...
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' ?
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' ?
25 August 2009
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.
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.
18 August 2009
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 !
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 !
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