Posted Wed 10 Jul 2019 8.13am by Dorothy
Hello everyone, and thank you for letting me join in. I'm just waiting for blood tests to rule out a couple of other things before my GP confirms his diagnosis of Psoriatic Arthritis (I've had psoriasis for 20 years). Meanwhile, he's given me some prescription NSAIDs but not given me any other information on managing the problem.
I've read conflicting advice about exercise - some say that you can't do any further damage to your joints by exercising, so just keep going even if it's painful. Others say that it's important to pace yourself and stop if the pain increases, as overdoing it can trigger flareups or make them worse. So I wondered what people who actually have this condition have found works for them.
I have a part-time job and am also part-time self-employed as a gardener. I love the gardening, but have found it increasingly hard to cope. Fortunately, both jobs are pretty flexible, so most of the time, I've been able to rearrange my schedule so I'm not doing anything too physical when I'm feeling really bad. But my part-time job is ending in 2 months (no more funding for it) so I'm having to job hunt, but have no idea how PsA might affect my ability to do various tasks. Any pointers for finding a job that I can do well or jobs to avoid? Right now, I feel like shooting me might be the best option, as I'm no longer fit for anything much!
Posted Thu 11 Jul 2019 1.01am by wendyloish
I suspect you will have to find your own limitations by trial and error. I say this because, with my back affected, especially my lower back, I have found that things involving long time standing or twisting from the hips like sweeping, vacuuming and such are difficult and bring on long term pain. That aside, I can do quite a bit that entails exercise without sideways movement. I love gardening, but have found that only short periods in the garden can be tolerated, and even then only on a good day. My brother, also a sufferer, is 4 years older than me. As he does not have the back problems, but mostly seems to be affected in his joints (especially his legs), he is active in his garden, and is even involved in weed management on a reserve close to his home. He also has not the sideways movement problem that I have. If you see us as two end members in a range of possibilities, you can see how much variation in symptom severity is possible.
About exercise, my advice would be to do that when the inflammation is under control, and as little as possible when it is not. That works for me. And when I have pain, if it is there for more than a few days I go on a fast, not the low calorie pretend kind (called intermittent fasting) which is recommended for weight loss, but the true kind which bring on autophagy. I find at least 4 days is needed. I do allow myself a cup or two of coffee with an aspatamine tablet and a splash of low fat gluten free milk, a cup of cocoa (no milk with aspartamine again). Currently I am on day 3 of such a fast, after having my back tweaked by a chair collapsing under me, followed by a long drive to and from Canberra (5-6 hours each way).
Hope all this is helpful.
Posted Thu 11 Jul 2019 9.49am by Dorothy
Thank you for your reply. It is really helpful to hear from someone who actually has this, not just giving advice out of textbooks. I guess it will take time to work out what I can and can't do, but it's really bad timing just as I start looking for a new job!
Your advice about exercise makes sense - when I came home from the doctor, I had this attitude of 'well if this is going to stay with me for life, I just need to ignore it, push through the pain and keep going'. So I did and the next day, I was in so much pain I could barely stand.
I have trouble with hands & feet, legs, back & neck, but it seems to move around. Is this normal? A couple of weeks ago, I was getting a lot of back, neck and ankle pain, now those bits are still uncomfortable, but it's my hands, feet and knees that are really hurting...wish it would make its mind up!
I hope your back recovers from the fall soon.
Posted Thu 11 Jul 2019 5.13pm by Mac
In all my year's with PsA I have always been told to exercise, as in riding a bike, walking, or swimming. I find the bike and swimming the best now, but I think it's important for you to kept active.
As for work sadly i don't work anymore, but keep at it as long as you can. The most important thing and the one i struggled with most is pace. Even to this day when the sun shines i make hay, only to spend the next couple of weeks in agony.
Posted Thu 11 Jul 2019 11.39pm by wendyloish
I think we all make the same mistake about pacing ourselves. And I don't seem to ever get it quite right. On my fast at the moment, my back feeling good for the first time in weeks, I could not resist the temptation to do a little bit of gardening. Too soon! Now there is still a bit of pain in my lower back at a point where I thought I aught to be inflammation free. And I had to come off the fast at the end of day 3 as I developed diarrhea. How is that possible on the 3rd day of eating nothing???
About exercise, I did aquarobics for a while, but the impact of jumping, even in water, was detrimental. I now do 1 hour of disco-dancing a week when things are good, and just simply skip it if they are not. I have an exercise bike which I find useful, but I confess that I rarely sit on it. I find that sort of exercise is good, but my motivation is not. The type of bike is important, though, mine is a recumbent bike. I chose this as it is much easier on the back.
As Mac said, it is important to keep active and make hay while the sun shines. And the trick, which I still have not learned, is to stop before you think you need to. You only know how much is too much when you have done too much.
Posted Fri 12 Jul 2019 8.27am by Dorothy
Thank you Mac and Wendyloish for your advice. I think pacing myself will be very challenging. In the past few months, I've gone from being constantly active, usually doing quite heavy manual work, to times when I find walking from one room to another difficult, so when I do feel ok, I tend to go crazy!
I'm going on holiday near the sea in a couple of weeks, so I'll try swimming while I'm there and see how I get on. (I'm on a low income, so don't want to pay ££s for a swimming session if it's no use) May see if I can borrow a friend's bike too and try that. Up till now, all my exercise has come from walking, gardening and generally running round, but I can't do that enough now and I'm starting to get fatter, which I know will make my joints worse.