Dealing with fatigue
Hi everyone,
I have just been diagnosed with PsA. The fatigue has been a debilitating factor for me. It has impacted on my ability to focus at work, as well as socially being able to make plans without risking cancellation at the last minute. I'm hopeful that now I know the cause of the fatigue, I'll be able to work on improving my energy levels, but I'm also uncertain what to expect.
I'm curious to hear if others have experienced severe fatigue, whether this has improved with treatment (and what treatment), and what sort of lifestyle changes have helped you in keeping energy levels up to maintain your regular activities?
Thanks in advance for sharing,
Francesca
Hi Francesca,
Fatigue has long been my number 1 complaint. The joint pain and tendonitis is no fun, but it's the fatigue that has kept me from living my life, feeling satisfied at work, being the kind of parent I used to be, and really feeling like myself. I think what is frustrating also is that because of the flaring nature of PsA, my "good periods" (which were actually great periods at times!) were always a bit tainted with the fear that the fatigue could show up at any time. I have found two things to be very helpful.
1) I've done a lot of work on "pacing" - prioritizing the things that I value, avoiding over-working, asking for help BEFORE I exhaust myself, etc. This has also including making time for daily exercise (even just walking), prioritizing my sleep a bit more (which I still struggle with), and making tough decisions about what to say "no" to (again - BEFORE I'm wiped out). Cognitive-behavioural therapy for chronic pain/chronic illness can be super-helpful - its main components are pacing and working on catastrophic beliefs about pain, fatigue, etc., which just tend to make both of those things worse. Essentially, I try to avoid the "boom and bust" pattern, but it hasn't been easy (Pacing definitely does NOT come naturally to me LOL).
2) I recently started Humira. It took forever to get insurance to cover it, so I went through over a year of ineffective and/or intolerable medications to prove that I needed something else. It has made an ENORMOUS difference. I've had for injections (over about 6 weeks) so far. I'm not pain-free (at least not yet), and I still have to engage in all my pacing work. However, my overall energy has gone WAY UP. Now, I'm just about as tired as any other full-time working parent of young kids (LOL), which is way more manageable than the crushing exhaustion that typically accompanied my flares. I'm hoping it continues!!
I really feel for you. It's so hard to explain to others how impairing the exhaustion is - and in fact, I often doubted MYSELF when I felt that way - like doubted I could be this tired. I may end up feeling exhausted again, at some point, but for now, I'm trying to enjoy the energy, and work on ways to prevent big flare-ups. I hope you will feel some relief soon!
I really couldn't love this response more
! Pacing is probably the most difficult, yet most effective thing I have found to fight fatigue, especially as a parent. If I'm being honest, a monster cup of coffee also contributes to getting me going as well. Although I guess I wouldn't necessarily recommend it because of the whole vicious cycle it perpetuates.
It wasn't until my kids got a "little" older (8,7,5) that I was able to realistically make sleep a priority. But that is always the next thing I focus on after pacing. If I don't get enough sleep, or don't sleep well, then I will more than likely find myself in a flare, or at the very least a fatigue spiral of epic proportions.
I have found that one way I judge if a biologic is working is based on how quickly I "tire out" when I try to do something. So, I suppose that is something to consider as well.
I wish you both a few good days, and try to be a little gentle with yourself. 😀 -Leanne, Community Moderator
Hi, Fatigue has been my constant friend but some days are better then others as long as I don’t push myself too hard, which is tough when people want you to go go go.
