It has been very noticeable that over the last week I have been in slightly less pain and feel a lot more "alive".
I have spent the winter in virtual hibernation going to work then bed at around 7pm but still waking up feeling wrecked, so the Doctor suggested Vitamin D3. It has taken a few months but that, along with the recent sunshine, has almost given me a spring in my step.
I think I need to emigrate every winter to somewhere hot...
Tuesday, 16 April 2013
Sunday, 14 April 2013
Its not all negative
Even though I have constant pain and tiredness I still try and have some fun sometimes, especially now both of my (very supportive) kids have their own homes and I don't have to worry about them any more.
About 18 months ago my daughter bought me a Powerboat Taster lesson for my birthday. It was in Southampton which is a fair drive so the pair of us went down together and then had a lovely weekend together on the Isle of Wight afterwards.
Unfortunately I became addicted to boats!
So last year I took a 2 day Royal Yacht Association course in PowerBoat Handling and gained my International PowerBoat Licence. It was fantastic fun but hard work, especially on the hands, but worth it. The next few weeks had to be spent recovering but I find that if I dose up with enough painkillers beforehand and rest well afterwards then I can afford these occasional heavy weekends.
..and I am going again next Friday! Yay!
My husband and a few of his diving friends are taking the club boat down to Plymouth to spend a weekend on the water just playing with the boat. LOTS of warm clothing needed especially on wrists and ankles but I sooo looking forward to it.
I will let you know how it goes :)
About 18 months ago my daughter bought me a Powerboat Taster lesson for my birthday. It was in Southampton which is a fair drive so the pair of us went down together and then had a lovely weekend together on the Isle of Wight afterwards.
Unfortunately I became addicted to boats!
So last year I took a 2 day Royal Yacht Association course in PowerBoat Handling and gained my International PowerBoat Licence. It was fantastic fun but hard work, especially on the hands, but worth it. The next few weeks had to be spent recovering but I find that if I dose up with enough painkillers beforehand and rest well afterwards then I can afford these occasional heavy weekends.
..and I am going again next Friday! Yay!
My husband and a few of his diving friends are taking the club boat down to Plymouth to spend a weekend on the water just playing with the boat. LOTS of warm clothing needed especially on wrists and ankles but I sooo looking forward to it.
I will let you know how it goes :)
Wednesday, 10 April 2013
A REAL name
So in the papers today there is news that there is a new, non drug, painrelieving gel that is going to revolutionise Ostoearthritis treatment.
This is great news especially as a lot of people are sensitive to the current anti-inflammatory drugs and so experience side efects.
My complaint is that it will mean another raft of well meaning people telling me problems will soon all be solved.
I DON'T have Ostoearthritis, I have an autoimmune condition that happens to contain the world Arthritis simply because the joints are afected as well as the rest of the body.
Why can't our condition have a real name like other conditions do? Like Lupus, Crohn's, Grave's Disease or Addison's Disease.
Whenever people ask me what my condition is they invariably say "Oooh, I have that too, in my thumb/knee etc because all they hear is the word Arthritis which they obviously do have but of the Osteo variety. I can not then say mine is different without seeming to be trying to outdo them so I tend to hide it and not mention it.
Most people have heard of Rheumatiod/Inflammatory Arthritis but think it is just a variation on the more common Osteoarthritis which is decaying of the joints and which will affect most people eventually if they live long enough. The name Rheumatoid Arthritis does not in any way describe the fact that this is an illness that affects everything the sufferer does. Our bodies have permanent inflammation which can be reduced by strong drugs, we have a constant slightly high temperature which prevents sleep sometimes, we are in constant pain, the joints become "wobbly" and so each movement takes approximately three times as much energy so everyday tasks are so much more tiring and because a lot of the treatments supress the immune system we catch every cold, virus or bug that is going around.
So pleeeease can we have a REAL name that reflects that this is NOT just a joint problem?
This is great news especially as a lot of people are sensitive to the current anti-inflammatory drugs and so experience side efects.
My complaint is that it will mean another raft of well meaning people telling me problems will soon all be solved.
I DON'T have Ostoearthritis, I have an autoimmune condition that happens to contain the world Arthritis simply because the joints are afected as well as the rest of the body.
Why can't our condition have a real name like other conditions do? Like Lupus, Crohn's, Grave's Disease or Addison's Disease.
Whenever people ask me what my condition is they invariably say "Oooh, I have that too, in my thumb/knee etc because all they hear is the word Arthritis which they obviously do have but of the Osteo variety. I can not then say mine is different without seeming to be trying to outdo them so I tend to hide it and not mention it.
Most people have heard of Rheumatiod/Inflammatory Arthritis but think it is just a variation on the more common Osteoarthritis which is decaying of the joints and which will affect most people eventually if they live long enough. The name Rheumatoid Arthritis does not in any way describe the fact that this is an illness that affects everything the sufferer does. Our bodies have permanent inflammation which can be reduced by strong drugs, we have a constant slightly high temperature which prevents sleep sometimes, we are in constant pain, the joints become "wobbly" and so each movement takes approximately three times as much energy so everyday tasks are so much more tiring and because a lot of the treatments supress the immune system we catch every cold, virus or bug that is going around.
So pleeeease can we have a REAL name that reflects that this is NOT just a joint problem?
Monday, 8 April 2013
Pain levels and drugs
RA is different for everyone as far as I can see but the recurrent themes seem to be joint pain - made worse by cold, tiredness and reaction to various drugs.
After trying a few treatments over the years I have now been settled on Methotrexate 20mg a week and Folic Acid twice a week which have greatly reduced my symptoms and is expected to slow down the progress of the condition and avoid the severe twisting of the hand and feet joints that occurs with time or with lack of suitable treatment.
Apart from a suppressed immune system the other main side effects of this drugs are nausea or sickness which can be controlled by the Folic Acid, thinning of the hair, lack of appetite and lethargy.
On balance I am happy to have found a treatment that seems to work for me and doesn't cause an allergic reaction.
This blog is not meant to be one long moaning session but I think it only fair if I give you an insight into my condition so you can judge the rest of it in that light.
So the current state is I take Methotrexate, Folic Acid, daily pain killers (Naproxen) and pain killing gel (Voltorol) to gain as near to normal life as possible and so I am in low to moderate pain from my ankles and wrists all of the time which get moderate to bad if i get cold. I am usually achy and stiff so need plenty of rest in a warm bed at the weekend and can now say I have a system that suits me.
After trying a few treatments over the years I have now been settled on Methotrexate 20mg a week and Folic Acid twice a week which have greatly reduced my symptoms and is expected to slow down the progress of the condition and avoid the severe twisting of the hand and feet joints that occurs with time or with lack of suitable treatment.
Apart from a suppressed immune system the other main side effects of this drugs are nausea or sickness which can be controlled by the Folic Acid, thinning of the hair, lack of appetite and lethargy.
On balance I am happy to have found a treatment that seems to work for me and doesn't cause an allergic reaction.
This blog is not meant to be one long moaning session but I think it only fair if I give you an insight into my condition so you can judge the rest of it in that light.
So the current state is I take Methotrexate, Folic Acid, daily pain killers (Naproxen) and pain killing gel (Voltorol) to gain as near to normal life as possible and so I am in low to moderate pain from my ankles and wrists all of the time which get moderate to bad if i get cold. I am usually achy and stiff so need plenty of rest in a warm bed at the weekend and can now say I have a system that suits me.
Sunday, 7 April 2013
In the beginning...
Where to start....
I could start at the beginning but I don't know where that is, I only know that from as long as I can remember after the birth of my son in 1986 I have been sore and felt unwell.
It got progressively worse over the years but my numerous visits to the Doctor's informed me I had a virus, or had probably pulled something etc and it wasn't until 2009 that I realised I could no longer go on feeling like a 70 year old at 45 years old.
So back I went to the GP but this time armed with information from various websites that pretty much convinced me I knew what was wrong. She was no use at all. I told her both my ankles and wrists were really sore, I felt like a zombie all the time, I felt hot and generally felt ill. Without any examination at all she told me I had arthritis in my ankle and to take paracetamol!
I suggested it might be RA but she dismissed this idea so I used the magic word...my symptoms were "symmetrical" which must have triggered some medical knowledge in her head because she then suggested a blood test. The next morning she phoned and asked me to come straight in....apparently she had discovered I had Inflammatory Arthritis.
I was shocked!
Needless to say I refuse to see that GP again and have a very good realtionship with a young female GP in the same practice who is excellent, understanding and friendly.
I could start at the beginning but I don't know where that is, I only know that from as long as I can remember after the birth of my son in 1986 I have been sore and felt unwell.
It got progressively worse over the years but my numerous visits to the Doctor's informed me I had a virus, or had probably pulled something etc and it wasn't until 2009 that I realised I could no longer go on feeling like a 70 year old at 45 years old.
So back I went to the GP but this time armed with information from various websites that pretty much convinced me I knew what was wrong. She was no use at all. I told her both my ankles and wrists were really sore, I felt like a zombie all the time, I felt hot and generally felt ill. Without any examination at all she told me I had arthritis in my ankle and to take paracetamol!
I suggested it might be RA but she dismissed this idea so I used the magic word...my symptoms were "symmetrical" which must have triggered some medical knowledge in her head because she then suggested a blood test. The next morning she phoned and asked me to come straight in....apparently she had discovered I had Inflammatory Arthritis.
I was shocked!
Needless to say I refuse to see that GP again and have a very good realtionship with a young female GP in the same practice who is excellent, understanding and friendly.
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