Category Archives: psoriatic arthritis

Sick and tired

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I hate moaning about my health. I have IBS and psoriatic arthritis , I’m not going to die from either of them but at the moment my health is frankly s**t and I feel like a good moan about it may be just what I need.
It’s around 3 years now since I first became really poorly , pain , swelling , stiffness , sickness , diarrhoea , tummy pain etc and it took a long time and a million blood tests to get properly diagnosed but once I was diagnosed I started taking medication (lots of it) and I started to have periods of time where I was ‘well’ and the pain was manageable . Since a bit before Christmas though I’ve been constantly poorly.
The arthritis and IBS have been very bad , the pain stiffness and swelling had been constant and although most of it had been in my feet and legs until now my hands are becoming increasingly bad , and I’ve had far more bad IBS days than good ones. Along with this I’ve been getting migraines , which make me vomit. (a few times a week) and extreme tiredness. The medication I take for the psoriatic arthritis also makes me vomit so as you can see it’s a a bit of a disaster. It’s been so stressful and so painful that I’m also battling depression and anxiety too. After one of my many blood tests I was also diagnosed with microcytosis . I’m an absolute picture of health aren’t I.
I tried going gluten free as I noticed I was eating a lot of pasta and bread type foods but it hasn’t made much difference. I’m sick and tired of being sick and tired.
Last week I went to my gp and she ordered blood tests for me to get to the bottom of what’s going on. She wants to look at everything so the blood test was for a blood count , rheumatoid factor , vitamin D , b12 , a bone profile , inflammation markers ,blood sugar , cholesterol and liver function.
I will get the results on Tuesday and I’m hoping that they will just result in my medication being adjusted , I’d be happy to try something other than methotrexate (I’d even have steroid injections , despite my needle phobia because I’ve had one a couple of times before and it helped) but I’m also worried , very very worried that the blood tests are going to end up showing that there is even more wrong with me. I don’t think I will be able to relax at all until Tuesday. The IBS and arthritis are more than enough to be getting on with and I take more than enough different kinds of medication without adding to the list.
I just can’t get it out of my head that I might have been so poorly because there is something more sinister going on.
Roll on tuesday.

This weekend was an absolute blessing.

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My ex comes to London once a month with his family to see the kids , because he comes far and I agreed to a stupid plan in court he stays at my house on the Friday and Saturday night , and I pack myself off to my mums with the Dog and Ollie and J. (My two with autism)
I was feeling rough all week in the midst of both an arthritic flare and an IBS flare so when he texted on Wednesday to say he would be here at the weekend I was massively relieved to say the least
I haven’t had a flare up this bad in the three years I’ve had these conditions.
Just before it was time to leave and get the bus to my mums I vomitted ( a lot ) and so the bus ride to mums was a nervous one. The boys were very worried I’d throw up on the bus. And J kept asking me (loudly) are you about to be sick mum? . luckily we arrived at mums just in time before I was sick again.
I wasn’t able to eat any of the lovely things she had bought me ( she had been out and stocked up on gluten free stuff) but I did get snuggled up in bed early and sparkling water was offered frequently . Every part of me was in agony but I slept well , heavily medicated.
The next day ,Saturday, We wanted to try popping out for a bit as the teen needed jeans. I was stiff and slow but off we went. No breakfast for me though As I still couldn’t manage food.
After a couple of hours we got back to mums and I was completely out of it. I lay on the sofa and could barely speak. I was in agony , raging agony and I felt so drained as I still hadn’t eaten. Mum was giving me dry crackers. Which I managed to keep down. Mum told me later that she was thinking maybe I should be in hospital at the point. But I slept , heavily medicated again , and in the morning I slept in till almost11:am.
I had a nice warm bath but still hadn’t been able to eat properly and I was extremely hot.
Mum wanted to pack a bag and come home with me but I felt she had done enough that weekend for me and must be exhausted.
When I got home I lay down and had another couple of hours of sleep. I’m not great today. But I dread to think what kind of mess I would have been in had I not been staying at mums. Because it was safe as the kids were looked after I was able to go to bed heavily medicated And sleep through the worst of it. I’m not sure how I would have coped had I been at home. Alone with 7 kids.
I’m not better yet but that weekend was a total life saver for me. I just really hope this flare up does one soon. And mostly I’m very cross that I didn’t get to eat anything at mums because she buys me all the best stuff.

To run or not to run ….

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I’m definitely not a big fan of exercise,
I’m not lazy ….. I walk a lot ….i don’t really diet , I just kind of keep an eye on how tight my jeans get and adjust biscuit intake accordingly , but I feel like running is missing from my life.

I used to go to the gym, every other day , put my earphones in and run on the treadmill.
But I realised that I could run for free in the great outdoors and so I started to do that.
I was never going to win any races , or medals , or probably even catch a bus but I enjoyed it.
Half an hour in the evening , just me and my music , running.

But then what had always just been annoying aches and pains in my joints developed into psoriatic arthritis.

I’ve been on the right medication for most of this year but I had a long twelve months before that where I could almost not walk atall.
I was in excruciating pain all the time and very swollen and stiff.

Now although I’m still stiff …… Especially in the morning and at night I’m managing the pain well.

And I’m starting to miss running.

I’ve been under so much stress that I feel like it’s just bubbling beneath the surface all the time.

And I need to release it .

But I don’t know if I can run anymore .
I don’t want to do any damage and I don’t want to cause a big flare up but I really want to give it a try.

Is it foolish ?

Are my running days over ?

I’m thinking I should ask my gp but I know it will be a huge disappointment if she says no.

Should I just hang up my trainers and open a packet of biscuits. ?

Doing well ….

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I’ve been for my rheumatology check up today.
In February I was diagnosed with psoriatic arthritis , after 12 months of barely being able to walk and being in excruciating pain . My feet , ankles , knees and hips were in agony.
I could barely put shoes on because of the pain and swelling and walking down the road was painful enough to leave me having to lie down for a few hours.
My hands and fingers are also affected.
With swelling , pain and stiffness .
4 months ago I started taking methotrexate .
It’s a very strong drug. It’s used for chemo but I’m only on a low dose. It has ALOT of side effects. I’ve had to have chest X-rays and also blood tests every fortnight. I have a terrible phobia of blood tests. It hasn’t been fun.
It can make you anaemic , and effect your liver and kidneys. Sickness and nausea are also a side effect.
For the first few weeks I had terrible sickness and nausea , I was taking the medication every Wednesday and being sick for a few days after.
That has lessened ALOT now , I still have some nausea but I have medication for that now , and the results of all the blood tests were normal , the chest X-rays were clear and although I still have stiffness , pain and swelling its much less than before I started taking the medication.
The psoriasis which I get in big patches on my scalp has also cleared up really well .
So I’m going to keep taking the methotrexate long term.
And the best news is that I only have to have the blood tests every two months from now on.

More meds and needles …

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I went back to the doctor today with a long list of ailments. So many in fact that they’ve asked me to book double appointments in future.
Since I took my first dose of methotrexate for my psoriatic arthritis last Wednesday I’ve not felt right atall. I have constant nausea , I threw up quite a bit last week as well as light headed ness. This is unfortunately a side effect of the medication because its a powerful drug but my gp has given me anti sickness medication to ease it. She said that for some people they get past the nausea but some can’t tolerate the medication so it’s just wait and see.
I’m not looking forward to the second dose tomorrow but I’ve started taking the anti sickness tablets today in preparation.
We discussed the migraines I’ve been having recently and the gp feels they are probably caused by the fact that I’m on so much medication coupled with lots of stress. She wants me to try to manage on less painkillers. Maybe holding out till bedtime as she said that taking too many painkillers can contribute to getting migraines.
She checked my eyes and my blood pressure which were normal so she said there’s nothing for me to be really worried about.
Then we talked about the bad tummy I’ve had for two years now. And she has diagnosed me with irritable bowel syndrome i had an endoscopy two years ago which didn’t show anything , I’ve tried some medication incase of any bowel infection but its not getting any better. I only have one or two days in a week where I can eat without it going straight through me. I can’t eat out anymore because that makes me very ill. And I often survive on diet coke alone.
She’s sending me for more blood tests to see if I have inflammatory irritable bowel syndrome or the non inflammatory kind. She thinks I have the non inflammatory kind , which is apparently harder to treat as its mostly a case of learning exactly what I can and can’t eat and all the medication I’m on can contribute to having a bad tummy. She’s also having me tested for coeliac disease , mostly to rule it out so they can plan how to help me better.
So on top of the fortnightly blood tests I have to have FOREVER * shudders , passes out * I have to have two more tomorrow.
My medicine cupboard looks like a pharmacy and I have a pile of blood test forms that fill me with dread , did I mention I also have to do a stool sample BLEURGH * vomits* but at least I’m starting to get things diagnosed. After two years of being really poorly hopefully we can get things under control. None of the conditions I have is curable but at least with the right care and treatments they should be easier to live with.

New meds and needles

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At the beginning of 2012 I noticed that my ankles were getting a little stiff.
Getting up out of bed was difficult , my ankles just didn’t want to bend and when I put my feet on the ground it was like stepping on broken glass.
I didn’t worry too much at first. It was winter , I’m on the road to being forty , I put it down to nothing more than getting a bit creaky in the cold weather.
By March ,after a few weeks of continuing pain and increasing stiffness I thought it was time to get checked out by my gp.
The gp told me it was just a slight inflammation , he told me to take ibuprofen for two weeks and said it should clear up. In fact it continued getting worse. I went back two weeks later and the gp said he would refer me to the rheumatology clinic. I know that referrals always take a while so I waited …. And waited ….. I phoned the gp surgery a few times and was told that the referral had been made but they had not heard anything back yet.
By July I still hadn’t heard anything and the pain and stiffness were getting worse all the time. My feet were so swollen and sore that some days walking was excruciating.
I mentioned to the doctor that I was now getting pain in my knees too and he told me to be patient , I have a friend who works in the hospital , i asked her to speak to someone she knows in the rheumatology clinic to see what was taking so long and it turned out that they hadn’t received a referral at all.
I had to go to the surgery and complain , at first they told me it had definitely been done weeks ago,so I explained that I had checked with the clinic , they checked and found that it had in fact been “overlooked.”( not bothered with)
I finally got my rheumatology appointment. And I also changed to another gp practice !
I had a scan on my feet which showed lots of inflammation and was at first diagnosed with plantar fasciitis , I was prescribed codydramol by the hospital and fitted for orthotic insoles , wearing the insoles was more painful than not wearing them and the painkillers were not touching the pain. So I went back to the gp. Over the next few months I had numerous blood tests , looking for the rheumatoid factor among other things ( as I have a phobia of needles this was horrendous. ) I think that between September 2012 and the present day I’ve had 15 blood tests.
My Gp tried me on all different painkillers and anti inflammatories. The pain was getting progressively worse and I was now getting pain , stiffness and swelling in ALL of my joints.
In February I had another appointment at the rheumatology clinic and was finally diagnosed with psoriatic arthritis. I’ve had psoriasis for as long as I can remember but until then no one had ever linked it with my other symptoms.
I started another new medication and was prescribed tramadol but still I wasn’t getting any pain relief so I was given a steroid injection. ( more needles)
The injection did help a little I’ve been finding walking easier and I’m definitely less stiff in the morning. But still in chronic pain .

I had an appointment at the clinic today and my rheumatologist has put me on long term medication , methotrexate , this is an immuno suppressant , it also affects the blood so I have to take folic acid to counteract the effects . Because this medication can cause lots of chest problems I will have to have chest X-rays every 3 months , the first one will be tomorrow and because it can effect my liver and kidneys I have to have blood tests every two weeks . As I’ve had so many blood tests recently I’ve moved past actually passing out and now I just cry (a lot) get dizzy and sweat like a pig in a butchers shop , brave huh ! Apparently i will also be prone to infections , likely to bruise easily and badly , and bleed heavily
It all sounds like a bit of a palava. I have so much medication to take every day that I’m sure I rattle when I walk , BUT at least now I hopefully have the right medication and I will be able to walk rather than the hobbly shuffle I’ve been doing for so long.
And I realise that although this is a lifelong condition it won’t kill me.
So I will gladly put up with the palava that comes with the new medication !

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