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Archive for July, 2009

Fatigue, coping and other things…

Fatigue, tiredness that doesn’t go away when you rest/sleep/sit down.

Pain doesn’t annoy me as much as fatigue, being tired all the time is no fun. Mostly because it stops you doing all the things you want to do. This Stene Prize submission is a short article describing life with the fatigue of psoriatic arthritis. I liked it because the author is a woman with children, so I can relate to it. The whole article is worth a read, but this quote struck me as being particularly apt.

“In my opinion coping is a short-term strategy and arthritis is a life-long disease.”

In another related article the author (Sharon Kilty) says:

I have often heard people say that despite their arthritis they go on fighting and pushing themselves as giving up would be wrong and a sign of failure…All I can say is time does heal, you are not alone and making your arthritis your friend and working with it is a lot less tiring than fighting it all the way.

I think I agree with this way of thinking. I could fight this forever more and still not “win”. Why set yourself up to fail?  I might find a combination of drugs that help, I might not. For the past 20 years I’ve had pain in my feet and trouble walking, not one of the suggestions by consultants, GP’s or physios helped.  That’s not to say they don’t help other people or that they weren’t worth trying, but I think you can miss out on a lot of life by searching for that elusive cure.

I think I need to consider this quote in more depth

the person’s experience of living with their disease, in all dimensions, physically, emotionally, mentally, spiritually and socially.”

How do I feel about arthritis?

1) Physically e.g. it hurts, I can take pain killers or a hot bath, I can go to bed early or make something easy for dinner. I can let the housework go. I can wear comfortable shoes and sit down when I’ve had enough.  The physical side of things is pretty easy to get your head around.

2) Emotionally – The constant fatigue gets me down. I don’t like being a burden, asking my husband to do more when he’s already tired form a full time job.

3) Mentally. Is this different from emotionally?  I’m not sure?  Is arthritis something “I fight” or something “I live with”. Does it define me as a person?  Well, if you’re reading this blog, I’m sure you think it does, but then again, maybe this blog is an outlet, if I whinge about it here,  I don’t have to whinge about it in real-life, to my family or friends.

4) Spiritually.

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Do I feel like I’ve been given arthritis? No.
Do I think some creator God is punishing me? No.
Do I feel like I’m being punished for deeds done in a past life. No!
Do I feel like this experience is supposed to shape me and make me a “better person”. No.
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I believe in evolution by natural selection. Evolution depends on random chance mutations.  Somewhere in my family a random chance mutation arose that means some of us get psoriasis and some of us get psoriatic arthritis.  It just happens. My eyes are green. I don’t blame God for that. He didn’t give me green eyes. Green eyes have evolved over centuries and by chance and my genetic inheritance I have them.  The same is true for the arthritis, it just happened.  Shit happens. It’s not part of some master plan.  This is what I believe. I don’t expect others to agree with me.

What I like about Quakers is that you are allowed to explore your own beliefs and experiences and compare them with others. I’ve always believed that I have a questioning mind, which doesn’t do too well when asked to believe things “on faith”. If there is such a thing as a creator God, then he gave me this mind, so I can only assume I’m supposed to use it. Therefore I believe that arthritis just happened, I’ve not been chosen to “suffer” and my life hasn’t been mapped out for me.

5) Socially.  How do I feel about arthritis socially?  For me this is the hardest one to deal with. I try to hid it. I always have. It is how I operate. It almost feels like an ingrained, in built mechanism for living. I don’t want sympathy. If no one knows I have arthritis then I don’t have to deal with other peoples attitudes, assumptions and bl**dy stupid comments (Have you tried fish oil?  You need to do more exercise. You can’t let it rule your life…)

Socially, arthritis definitely affects my social life and has done for a very long time.  How long can you stand at a party/in a pub without sitting down?  How long can you dance at a ceilidh or a nightclub? If you want to drink you need to get the bus/train?  How far is the train station?  How long can you stand and wait for a bus?  How exhausted are you after a week at work? Do you even have the energy to be social?  What about those “comfortable” shoes, they hardly look good when you are dressed up for a night out? Using a walking stick would help, but what if someone saw me?  What would I say?

I think I need to give some serious thought to these things at Quakers, or as Quakers would say I need to consider these issues “in the light”.  I need to think about these things in a non-judging manner, to see what is the best way of living my life, for me.

This also ties into the ideas behind “Breathworks“, I recently read a book by one of the founders, “Living Well with Pain and Illness“, I’ll write a review on it, when I get a chance.

Sharon Kilty’s website reminds me of another quote from Flake HQ (written by a guy with both psoriasis and psoriatic arthritis)

The derm I’m seeing these days said to me early on-with refreshing forthrightness- that he could prescribe ever more dangerous treatments, but opting for them would be my call

It’s my body, for better or for worse, so ultimately I need to decide what risks and treatments are acceptable to me.

Quakers in the News

There are lots of stories in the news today about Quakers “allowing” same-sex marriages.  You don’t often read about Quakers in the mainstream press, although I’m not sure the focus entirely on same-sex marriages is a good thing.

Anyway when I looked into the story in more detail, I found lots of general information on the British Yearly Meeting website and this link to an article in the Guardian. There is a lot of discussion at the end of the article on whether Quakerism is any different to other forms of religion, which is worth a read.

Categories: Quaker Tags: , ,

Psoriatic arthritis in my hands

July 29, 2009 1 comment

For the past 6 months or so, I’ve been bothered with pain and stiffness in my finger joints. In Novemeber 2008 the 4th finger on my right hand became fat, swollen, red and very very tender. It was hard to sleep because  even turning over was painful. Since then a similar thing has happened to the 5th finger and the middle finger on my left hand.

Just now (touch wood), they are stiff but only hurt if I bang into something. I can’t bend them properly or straighten them and it’s getting harder to grip things (like jar lids), but I can still type, obviously, as I am typing this.

I’ll post up these pictures, in case they help someone else looking for a diagnosis, it also means I’ll have a point of comparison to look back on. Don’t use this picture on your website (or anywhere else) without emailing me and asking my permission.

Hands July 2009

A hospital appointment

Well, I have an appointment to see a rheumatologist, less than 4 weeks after my last GP appointment, I am amazed! Well, it was 8 months ago that I first went to my GP, but you know, this is the NHS I was fully expecting to wait another 3-4  months.

I feel like crap today, I ache all over, especially my neck. I don’t know if it’s

a) the arthritis

b) I’m coming down with a cold

c) I just slept funny.

How do you tell? I’ve taken some paracetemol and I’m hoping I feel better soon, hopefully the kids will enjoy some extra tv time because that is all I’m fit for today.

Psoriatic Arthritis, blood tests and x-rays.

Well my blood test results are back, everything looks normal, which is good. CRP (C reactive peptide), is a general marker of inflammation, which can rise when you have an inflammatory arthritis. My value is less than 10. Anything from 10-150 can indicate an arthritis flare (although that is not true for everyone, some people can have a severe flare that doesn’t show in their blood work). Sometimes inflammatory arthritis can cause an increase in your white blood cell count and again there is no sign of that. Some people with chronic diseases like rheumatoid and psoriatic arthritis can develop anemia and fortunately my haemoglobin (Hb.) is now back to normal. I think I will keep taking the spatone.

That’s all good news on the blood front, unfortunately the x-rays did show signs of psoriatic arthritis. It can take several years before psoriatic arthritis causes damage that can be seen on x-rays.  See the webpage from “Learning Radiology” 0r the University of Washington MSK Resident Projects for the technical details.

How do I feel about all this. I’m not sure? I’m glad my bloodwork looks normal (even if I feel crap.)  I’m glad I’m not anaemic but if I’m not, then there must be another reason why I’m feeling so exhausted. I’m a bit disappointed that they can already see changes on the x-rays but there’s not much I can do about that. Oh well. That’s life,I just need to get my head around it.

Categories: Psoriatic Arthritis Tags: , , , ,

Anaemia and Arthritis

Iron Deficiency B12 Deficiency

Pernicious Anaemia

Anaemia of Chronic Disease
RBC Size Microcytic Macrocytic Normocytic
MCV (82-99) Decreased Increased Normal
MCH (27-32) Low Normal or High Normal
TIBC High Normal Normal or Low
Ferritin (10-291) Low High Normal  or High
B12 (130-700) Normal Low Normal
Folate (200-650) Normal Normal Normal
RBC (4-5) Low Low Low
Hb (12-16) Low Low Low

I am waiting on the results of some blood tests. My previous blood results showed I was anaemic and I was prescribed iron tablets. I’ve been doing a bit of research into anaemia and there are lots of different types. In all types of anaemia your red blood cell and haemoglobin (the bit inside your red blood cells that is made with iron) are low.

The most common one that most people have heard of is, iron deficiency anaemia, this is the one that is helped by iron pills (or by eating lots of black pudding and chocolate, yum!). From what I can gather, if your red blood cells look small down the microscope, the volume of your red blood cells is small. Your iron stores (ferritin) are low, your mean cell (MCH) haemoglobin is low but your total iron binding protein is high then you probably have iron deficiency anaemia (assuming your B12 and folate levels are normal).

Another type of anaemia is pernicious anaemia, which is caused by your bodies inability to absorb the vitamin B12. This type of anaemia is not cured by taking iron pills, you need to have B12 injections (roughly every 3 months). To be diagnosed with this you need to have low levels of B12 and high levels of iron stores (ferritin), your red cells will also look bigger than normal down the microscope. Unlike iron deficiency anaemia your total iron binding protein will be normal and so will your mean cell haemoglobin.

There is another type of anaemia, related to inflammatory conditions like psoriatic and rheumatoid arthritis, this is caused by high (untreated) levels of inflammation in your body. It is quite hard to tell it apart from iron deficiency anaemia (and some people can have both at the same time). If you are anaemic and you have an inflammatory condition and all your other blood results are normal you probably have an “anaemia of chronic disease”. Sometimes people with high inflammation do show a raised ferritin level, but if the B12 level is normal then this isn’t caused by pernicious anaemia. Anaemia of chronic disease improves when the underlying condition is treated and doesn’t improve with iron tablets.

Interestingly pernicious anaemia can be an autoimmune disease (like psoriatic arthritis, rheumatoid arthritis and thyroid problems).  If you have one autoimmune disease you are more likely to get another. My Grandmother had pernicious anaemia and an underactive thyroid which is why I did a bit more research into anaemia and psoriatic arthritis. Hopefully I’m just tired and anaemic because of the psoriatic arthritis and not because I have something else wrong with me!

I like to learn things by looking at pictures, so I also drew the table at the top with some diagrams, which help me remember the important points.  I still forget what questions to ask when I see my GP though!

Aneamia Table

Information from

http://en.wikipedia.org/wiki/Total_iron-binding_capacity

http://www.nursingtimes.net/nursing-practice-clinical-research/laboratory-diagnosis-and-investigation-of-anaemia/203856.article

http://www.aafp.org/afp/20030301/979.pdf

http://www.arc.org.uk/arthinfo/patpubs/6269/6269.asp

Pathophysiology By Carie Ann Braun, Cindy Miller Anderson (Pg 398) (found using google books searching for folate, iron deficiency anemia)

The reference ranges given in the table are from a UK NHS hospital and apply to females.

There is more than one sort of arthritis?

Is there more than one sort of arthritis?  Oh yes, about 100-200 different types (you can check out a list on Wikipediea Arthritis – Wikipedia) The first one most people think of is:

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1) Osteoarthritis (OA) – this is caused by wear and tear on the joints, you tend to get it as you get older. Osteoarthritis is called a non-inflammatory arthritis. An inflammatory arthritis has inflammatory white blood cells in the joint fluid.  Osteoarthritis has no white blood cells in the joint fluid so is termed non-inflammatory.

Inflammation (a red and hot area of the body) is caused (or “mediated”) by the immune system.  White blood cells are a part (or “component”) of the immune system. There are about 30 different types of inflammatory arthritis.  The most common one is rheumatoid arthritis.

2) Rheumatoid Arthritis (RA) – an inflammatory arthritis, the bodies immune system attacks it’s own joints and causes pain, stiffness and often swelling. Most people (about 80%) with RA, have something called RF, Rhematoid Factor, in their blood.

3) Psoriatic Arthritis (PA) – another inflammatory (immune mediated) arthritis, this is the one I have (although some unlucky people can get several different types of arthritis at the same time).  Most people (about 85%) get the psoriasis (itchy flaky skin) first, but some people (15%) get sore joints before they have trouble with their skin. Most people with PA, don’t have RF (Rheumatoid Factor) in their blood.

Last time I had my blood checked, I did not have RF, which was a relief, although psoriatic arthritis can be severe, rheumatoid arthritis tends to be worse, so I was pleased that I “only” had PA and not RA. Hopefully it will stay that way.

The UK Arthritis Research Campaign produce  lots of different booklets on different types of arthritis. They are detailed and helpful and well worth a look if you want more information on a specific type of arthritis. Children can get arthritis too, not just young people.  In Scotland Arthritis Care run “Joint Potential” for young adults aged 16-25 years, there are places available on their courses now, click on the link if you are interested. Arthritis care also have a “Young People’s” section in their discussion forum.