Fatigue is getting to me
Hi guys, it's my first post here.
I'm a man in my late 20s, diagnosed since 2013. Symptoms started a few years before that.
Anyway, to jump straight into the whinging and complaining:
I've been struggling with fatigue since the very beginning. I still have near perfect joint mobility despite having had a lot of pain throughout the years.
From 2017 to 2020 I was on enbrel, which stopped working. Since March I've been on humira, which works fairly good against the iritis, stiffness and pain (but not perfectly).
However, the fatigue is not helped at all. I work a busy job with pretty much no down time ever, luckily only 36 hours a week. Most evenings I will just fall asleep after coming home.
The weekends are just used for resting. Today's Saturday and I didn't have the energy to even play a video game until the evening.
I've been doing this for years now but it means that my quality of life is poor. No social life is possible, including finding a partner.
I've soldiered on for many years and tried diets, supplements, vitamins and exercise. But nothing helps.
I've accepted now that this is just how it's going to be. Which is great because I no longer blame myself for being tired at work and so on.
It feels like my time at work is coming to end now as I'm turning up late almost every day and can't perform due to fatigue and brain fog.
I can't work part time since i don't have a partner to help pay the bills.
This feels like an unwinnable battle or an unsolvable problem. I keep coming to the conclusion that this life isn't really worth living, but there's no way out apart from winning the lottery.
Long story short, I'm just very tired of the 'fight' and discouraged.
Does anyone have any tips for fatigue at all? I will try pretty much anything.
Please don't suggest the same things that you can read all over the internet. I've already done all that, this is a serious problem I've been trying to solve for years. Maybe someone has a creative solution or some drug they take that's not often talked about?
To end on a more positive note, i really love robot vacuums! Everyone with AS should get one, what an energy saver!
Hi there's no such easy fix in life but I used to suffer really bad about 7 years ago and I decided to do something about which mainly involved changing my diet and getting exercise in but this can be hard to stick to and takes a long time to build up a capacity but trust me it does work and if you have good mobility that's even better.
After a few years the pain started to dissipate and fatigue lessened and I even got qualified as a weightlifting coach you need to start slow and learn to manage the fatigue I even get days now when after work I'm super fatigued and just have to not do anything but rest and I work in construction.
A few things which will help will be a few 30min session in the gym of squatting and deadlifting and combined this with increasing your healthy fat intake such as nuts, black seed oil, flaxseed and porridge as I noticed a big difference when focusing my diet around these types of food.
Any questions just ask.
It's great to hear that your diet and exercise adjustments have made a difference for you.
Thanks so much for sharing.
Be well, Doreen (Team Member)
Good morning from Parry Sound Ontario Canada
I totally understand your fatigue struggles. I also have the same challenges. My social groups are very limited and usually short due to fatigue and work. I honestly take each day one at a time and sometimes one hour at a time on really rough days. I try as much as possible to focus on the good positive things and thoughts. I find being outdoors raises my spirits and reminds me how there is such beauty around us. I try to stay committed to my morning walks as they help me feel grateful and motivated to the day ahead. Kinda like food for the soul.
What a beautiful picture. I can see how this can affect your soul.
Thank you for sharing it along with your wonderful perspective.
Be well, Doreen (Team Member)thank you
I just wish my family and friends understood that I'm not lazy, I'm not depressed, I'm not stubborn, I'm fatigued. I'm tired. I'm unable to move sometimes because it washes over me like a tidal wave. I'm all alone, stuck in my body and im screaming inside.
I hear you rob! It really is so hard when the people closest to us don't understand. I've sent this article to many of my friends who don't understand what I go through. I'm going to leave the link here just in case it helps. https://ankylosingspondylitis.net/living/understanding Ali (Community Member)
Thanks everyone for the lovely replies!
Small update. My employer has now fired me from my permanent contract.
Instead he has offered me a temp contract at reduced working hours - 80% or 4 days a week for 6 months.They don't believe I can manage a full-time job. They're right, I can't.
Not sure how to take this, I stopped blaming myself years ago though. We will see. Happy holidays everyone 😃
I am so glad that you seem to have come to a resolution. If you are like me, the stress of not knowing is almost worse than the resolution................ rick (moderator) ,
I just wanted to check and see how things are going.
How is the reduced schedule working out?
Thinking of you, Doreen (Team Member)
