Posted Mon 8 Jul 2019 10.07pm by fi
Hi all, my partner recommended I should find a forum, and I found you.
I feel like no one gets that I am struggling because you know, I still go to work, I still 'exercise' - within limitations but people don't see that.
I live alone, No one sees that it takes me over an hour to get my body moving in the morning, my hands are the worst. No one sees I wake up regularly during the night.
I am exhausted ALL the time, last night I felt I slept but woke at 8.45am (late for me) felt like I had flu there were so many aches and pains, hands took ages to get going, by 4.30pm I just fell asleep, luckily working from home, and woke at 7pm.
My diagnosis for potential PsA was a few weeks ago, I am into week three of Methotrexate. i'd never heard of it, but when I started looking at symptoms realised I'd gone to the Dr as my achilles were swollen in November (they said it was the wrong shoes). My toe nails have looked like my dads for a couple of years (he had psoriasis as does my brother). I had Osteoarthritis in my hips, both have been replaced, the latest was March this year so I'd just put everything down to that.
I try to still do the usual things but I have to nap and plan outings to reduce walking.
Thanks for reading would be good to know how others have managed the pain and tiredness whilst continuing to live as normal as possible.
But also to not feel so alone.
Posted Tue 9 Jul 2019 1.22am by wendyloish
About the sleep problem, I know it is a bit of a stretch, but for me once I eliminated certain things from my diet I started to sleep better. I used to get up four or five times a night, sometimes I would be up and watching TV at 3 or 4 am. Now, after 40 years of having to get up during the night to empty my bladder, I now can sleep through the night. Or at least I can 4 days out of 5.
The problem with getting out of bed I have addressed by staying in bed at least half an hour after waking. During that time I do stretching exercises, especially for my back, hips and knees. I was told by a doctor a few years ago that the pain I was feeling was not from the joints so much as from the muscles constantly contracting to minimise pain. Anyway, this works for me, it allows me to get out of bed without too much of a problem.
My diet is FODMAP. It is supposed to be for irritable bowel syndrome (which I have), and it works to reduce inflammation throughout the body, as well as in the gut. I find whenever I stray from it my psoriatic arthritis get worse and more painful. It took some time for the diet to fully impact (from memory that was about 3 months), but it has proved to be a good method of symptom control. When things get worse I go on a fast. 4 days seems to be sufficient to get things back under control. In fact after a long car trip I am just starting another 4 day fast today. It never gets my weight under control, but it will eliminate the inflammation. For now.
Hope this is helpful
Posted Tue 9 Jul 2019 11.49pm by fi
Thank you very much for your reply, I do the staying in bed for an hour in the morning to get my hands and ankles moving, glad I'm not alone ;) I'll do some research into the diet plan, appreciate the tip,
Take care and all the best
Posted Thu 11 Jul 2019 7.38pm by Mac
Your definitely not a lone Fi, though when I waken during the night with pain it's the loneliest place in the world, and I have 3 of a family in the house.
The pain and tiredness can be hard too deal with at times, and hard to stay on top off, the right sort of exercise helps (sometimes it's a killer :( ). For me the pain and tiredness I can deal with, the thing i find the worst/humiliating is having to get my wife or worse still daughter to open a bottle of milk for me when things go south.
I wouldn't worry about what others think, you can't control that. What you can control is your own thoughts, and through the year's with PsA I have found a positive attitude sure does go along way. It's easy to fall into that feel sorry for your self, to easy especially when things go belly up.
Stay positive and enjoy life with your partner, and when things are good remember to pace your self, it took me along time to figure that one out. I got more good days by pacing myself. Though I do still do silly things and pay dearly for it too.
Good luck Fi and keep working as long as you can.
Posted Fri 12 Jul 2019 6.45am by fi
Thanks so much for your reply, it's so helpful to know I am not alone and others are experiencing the same issues.
I will take on board what you say about being positive and not beat myself up if I need a rest or a nap before a night out. It's just the way it is and I just have to be a better planner :)
I have found that swimming is helpful so thats been added to my keep fit routine and I am just tackling my eating.
I have been on Methotrexate for 3 weeks now and I am daring to believe its making a difference this week.
Thanks again & all the best
Posted Sun 14 Jul 2019 6.47pm by Mac (edited Sun 14 Jul 2019 7.17pm by Mac)
Just watch with the Methotrexate Fi, it could be working alright, or you could just be in remission. I'd go canny for a while till you see how things go.
Oh and try the bike for exercise Fi, I always found it good.
Posted Sun 14 Jul 2019 11.11pm by fi
Thanks Mac, I will do, and glad to hear the bike is good, I was hoping to get that into my routine this week so good to know.
All the best