I was diagnosed with Psoriatic Arthritis 6 years ago, when I was just 36.
At the time of diagnosis I’d never even heard of Psoriatic Arthritis but after some research, coupled with the amount of pain I was already experiencing, I was absolutely devastated.
I thought that it would be completely life changing, in a terrible way.
I’ll be honest with you, it has changed my life, but not to the extent I had feared. I’m aware that as I age it will no doubt have a greater impact on my life but for now it’s definitely manageable.
I have pain, in varying degrees, constantly, I suffer with swelling and stiffness, particularly first thing in the morning and at the end of the day, I have bouts of fatigue and the effects of having a chronic illness have taken a toll mentally. I also suffer with IBS which is not unusual in someone with Psoriatic Arthritis, the IBS would flare in line with the arthritis.
Stick with me, it’s not all doom and gloom, I promise.
Through lots of trial and error with medication, and some lifestyle changes I am in a place where at the moment I am managing the Psoriatic Arthritis, rather than it managing me.
Medication I take codiene phosphate (because it also helps to bung you up a little if you know what I mean) and paracetamol for the pain, and although I can take them throughout the day I usually only take them at night now. I take amitryptiline at night for the pain, which is invariably worse at nighttime, because it also helps me sleep, every now and then I’ll take a week long course of sleeping tablets to keep the fatigue at bay.
I also have weekly injections of methotrexate. It’s a nasty drug which does have some vile side effects. I’ve been taking it for two years now, it undoubtedly makes a huge difference. I have significantly less pain, stiffness, and swelling.
But, for a large portion of those two years it made me very ill. Every week after the injection I would be extremely nauseous, often vomiting, and usually having diorreah. I would also be extremely fatigued. These symptoms would generally last for 3-4 days each week. I almost gave up on the methotrexate but for the last few weeks I’ve had very few side effects, some weeks only fatigue.
My GP had to adjust my dose a few times, and I have to take anti sickness meds for a couple of days post injection but now the benefits far outweigh the side effects.
It’s worth sticking with it, with support from your GP.
Exercise I am someone who likes to be active, which is partly why I was so devastated at the diagnosis, but I’ve found that being active actually helps. The stronger my muscles are, the better my joints are supported and it helps to keep my joints flexible.
I do a lot of walking. Aiming for 10k steps a day. I take myself out for walks every day, the length of the walk depending on how much I feel I can manage.
I also enjoy riding my bike. Now, I’m not a fast cyclist and you won’t find me going up big hills but I can usually manage 5 kilometres a couple of times a week. If my knees are particularly painful I won’t cycle.
I’ve recently started swimming. I’m trying to go three times a week. I don’t push myself, I do as many lengths as I’m comfortable with, making sure I splash around first to warm up properly.
Swimming is a really good exercise because it’s low impact. Your joints are supported by the water. While I’m in the pool I find that I’m pain free, which is always a welcome relief, and after swimming I feel much looser.
The important thing if you’re going to exercise is first of all check with your doctor, and then to only ever do as much as is comfortable, pushing yourself too hard will defeat the object because you’ll probably end up in more pain.
Diet As I said I also have IBS. My symptoms would usually flare up at the same time as an arthritis flare up. I would also suffer more after my weekly methotrexate injection.
After making some changes to my diet I’m now relatively symptom free. I probably have one bad day a week rather than suffering every day.
The change I made was going vegan, even before I’d decided to go vegan I’d noticed that certain foods exacerbated my IBS symptoms, namely, dairy products. Since cutting them out of my diet, as well as increasing my intake of fresh fruit and vegetables, I’ve had less pain, and cramping, less bloating, and hardly any diorreah. My arthritis symptoms has also improved somewhat.
I also take a Turmeric, Ginger, and Bromelian supplement, which is believed to help both inflammation and digestive problems. Personally I have felt improvements since taking them. (you should always consult your GP before taking a supplement, especially if you already take a number of prescription drugs).
Now, I’m not here to try to convince you to go vegan, that’s not what this post is about. But, it’s worth keeping an eye an what you have eaten before a flare up. It’s useful to keep a diary of what you’re eating and if you suspect something may be causing problems try to cut it out for a few days, to see if there’s any improvement. It goes without saying that increasing the fruit and veg in your diet is good, as is cutting down on processed foods.
It may take some trial and error but I do believe that it’s possible to at least help to relieve some symptoms of the condition, by being more in tune with your diet, and noticing what foods affect you.
Having said all this, there are days, here and there, when I really just can’t. Either I’m in too much pain or I’m just too fatigued, and I find it really important, when I feel like that, to listen to my body, accept that I’m having a bad day and allow myself to rest. That’s what Netflix is for!
The other thing I should mention is that if I am going swimming, walking, or cycling, I’ll inevitably need a good rest, or an hours nap afterwards. It’s useful to familiarise yourself with Spoon theory.
Exercise, although a positive thing, takes a lot of spoons, you need to be able to rest to get some of those spoons back afterwards.
If I know I’m not going to be able to recharge after exercise then I just won’t do it. It’s no good using all of your spoons, even on a positive thing, if you don’t have enough left to get through the rest of the day.
Psoriatic arthritis needn’t be a devastating diagnosis, there are definitely things you can do to help you to live, positively, with the condition and looking after yourself now will hopefully lessen the impact of it as you age.