Life with Psoriatic Arthritis.

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I was diagnosed with Psoriatic Arthritis in 2007.  We thought that I was suffering from Carpal Tunnel Syndrome, which is quite common during and after pregnancy. I had pain in my hands, and wrists, but it also extended to my elbow and shoulder, so my GP wasn’t convinced, and sent me to see a specialist to test for Carpal Tunnel to see if it was that. The test came back negative, and I was referred to a Rheumatologist. It actually took him about 2 minutes to diagnose me. He looked at my hands, looked at my feet, then asked me if I had or ever had psoriasis.

When I was 12, I developed a very itchy, flaky scalp. It refused to go away, even with copious usage of Head&Shoulder’s (horrible stuff, I can’t stand it) so my Mum dragged me off to the doctor. He diagnosed a fungal infection, blamed the fact that I wasn’t drying my hair after washing it, and prescribed some vile ointment which I was supposed to rub into my scalp. This stuff smelled horrible, made my hair greasy, and stained my scalp. I refused to use it after one application, I was 12, I was not happy about looking like I had a greasy comb over look. My Mum found some coal-tar shampoo, that helped to relieve my symptoms, so for years, when my scalp has been bad, I’ve used that, and never really thought about what could be causing the problem. I often suffer from achy joints, my hands, knees and feet get very painful, especially in the winter, when it’s cold, and I struggle to get over minor illnesses that other people throw off in a few days.  A common cold can take 2 weeks to go, and I often was on antibiotics in the winter, for chest infections that wouldn’t shift.

It turns out all these things are linked. Psoriatic Arthritis, like other forms of arthritis, is an autoimmune based disease. My symptoms of psoriasis, swollen hands and sore joints, plus my weak response to normal bugs and viruses are classic signs of the disease. When the doctor explained it to me, it all made sense. He also said that pregnancy suppresses the symptoms, but then shortly after birth, when the hormones settle, the immune system kicks in and causes a massive flare up, hence why I was in so much pain about six months post partum.

I am diagnosed as having Symmetric Arthritis, the most common type, usually affects multiple symmetric pairs of joints (occurring in the same joints on both sides of the body). Approximately 50 percent of people with this form of psoriatic arthritis will develop varying degrees of progressive disease, which destroys joints and can be disabling. (source) I am most affected in my feet, ankles, knees, hands, wrists, shoulders and neck. 

I so far have avoided taking medication for my condition, other than occasional cortisone shots, as temporary relief. I was offered the choice of trying Methotrexate as a treatment, but the side effects are pretty serious, and I wasn’t comfortable with the idea of taking it. I do try to avoid certain trigger foods, and take certain supplements to try to help my symptoms and I find exercise really helps me.

One thing that the doctor told me was that my feeling tired, constantly, was also a symptom. He said that lack of sleep can cause a flare or prolong it, and when I am run down, and mid flare I feel exhausted. Some days it is actually a struggle to get out of bed. Once I am up and the pain in my ankles and knees has eased, I’m ok, but it is not an easy illness to live with. Being sleep deprived has made the last few months worse as it has exacerbated the condition.

I am fortunate, that although I do have this disease, it isn’t as severe as some forms of psoriatic arthritis, and so far it has been manageable. I did struggle and do still struggle to admit, that I have a long-term, chronic illness, and it isn’t something I talk about to many people. I don’t look ill, I don’t look like I’m in pain, so most of the time, I ignore it, or grin and bear it.

I found these links helpful.

http://www.papaa.org/resources/about-psoriatic-arthritis

http://www.arthritiscare.org.uk/AboutArthritis/Conditions/Psoriaticarthritis

3 comments on “Life with Psoriatic Arthritis.
  1. Joanne says:

    Hello. I’ve seen your entry about Psoriatic Arthritis today, have only been able to read quickly as it’s “one of those days” but your story and symptoms and everything are virtually identical to mine. I’ve just been diagnosed, and the similarities between my life and your post are startling. Thanks for sharing. I’m only just starting to find out about this condition and have a long way to go with getting information together and your post has given me so many ideas and leads to follow up. Big big thank you.

  2. Am glad my post has been helpful. I found dealing with the diagnoses and working out how to cope quite challenging, but there are some good resources out there. It’s mostly about what works for you. Some people swear by lots of exercise, I find that doesn’t help, but gentle stuff like pilates, some ballet exercises and swimming do. In a way it’s good to have the diagnosis ‘cos it explains so much, things like the tiredness, low immune system etc make sense. Feel free to mail me if you need any more info, and those websites are quite useful too. Also, if you’ve got a good rheumatologist, that makes all the difference. Mine is lovely and so helpful and pro-active.

  3. Joanne says:

    My immune system is shot, always has been. I got shingles really badly in both my pregnancies and always struggle to shake things off…. you mentioned, on me re-reading this a bit more closely (finally!) that you avoid certain trigger foods and take certain supplements. Do you mind me asking a bit more about that? I did read that tomatoes can be a trigger for some people? I eat tomatoes like they are going out of fashion so will be a bit gutted to dump them, but if it helps, then I will… I’d be very interested in any thoughts you have on that.

    The tiredness too – in recent months, more than ever I have had tiredness that runs to my very core. Days when I have simply had to (and I really mean had to, as opposed to just being a lazy cow) sit down and close my eyes. Regardless of what I am doing. But it’s not from aches and pains it is simply from a deep seated overwhelming tiredness I have never known before. And also after an apparently ok night’s sleep. Often I simply need to close my eyes and drift for ten minutes and then I can carry on.

    I’ve found a fantastic meditation app for my phone – Headspace – just allows me to remove myself from the day to day churn for ten minutes a day and I am sure I am feeling the benefits, I fully intend to carry on with it. Anything that calms and settles and scales back some of the worry and panic I often find myself in has to help.

    My rheumatologist is great too.

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