Too pooped to pop ... what do you do when "tired" doesn't describe it?

For many of us, crushing fatigue is one of the more difficult symptoms of PsA, and decribing it to our doctors is difficult and often unproductive.

What’s the best thing you’ve done to shake off the shackles of fatigue that come with PsA?


A while back, Frances referred to this excellent article, which was originally posted by Dandlyons. Thank you, Frances and Dan!
Fatigue and Inflammatory Arthritis
Summary of a presentation at the Living with RA Workshop

Jessica R. Berman, MD
Associate Attending Physician, Hospital for Special Surgery
Associate Professor of Medicine, Weill Cornell Medical College
Associate Director, Academy of Medical Educators, Hospital for Special Surgery
Assistant Program Director, Rheumatology Fellowship, Hospital for Special Surgery
The feeling of fatigue is common in our busy lives. Fatigue that is the result of inflammatory arthritis, however, is very different than everyday tiredness. This kind of fatigue can often be intense and overwhelming, and can have a noticeable impact on quality of life. Steps to help make inflammatory arthritis-related fatigue more manageable include learning to better understand how it affects you as an individual and discussing it regularly with your rheumatologist.
What is Fatigue and What Are the Facts
Fatigue can be described as a severe lack of energy throughout the whole body, sometimes even after a full night of rest. It is very common among people with inflammatory arthritis, affecting 40% or more of those with RA.
Many people often describe fatigue as the most difficult part of their disease. In spite of this, the topic - unlike the subject of pain, for example - is rarely discussed between patients and their doctors.
Talking About Fatigue
Treating fatigue can be difficult for both patients and their doctors. Making a regular point of talking about it together can be a helpful step in treatment. Consider writing down a list of information to share with your doctor at your next appointment. This could include:
How you describe your fatigue
How often you feel fatigued during your daily activities
How fatigue impacts your day-to-day life
What you think causes your fatigue
What you do to manage your fatigue
Together, you and your doctor can assess, or measure, the way fatigue affects you personally. You may also better understand the causes of your fatigue.
Medications That Can Cause Fatigue
While fatigue is a common symptom of inflammatory arthritis, it may also be caused by other factors. Conditions such as anemia or an infection may contribute to it. It can also be a side-effect of certain medications. Drugs such as those taken for colds, blood pressure, pain, and depression can also cause fatigue. You should keep your doctor informed about any medications you are taking, as well as any changes in your medication regimen.
How Inflammatory Arthritis Can Cause Fatigue and How Anti-TNFs May Help
The immune system is very complicated, with many cells interacting with each other all the time. Some of these interactions produce what are called cytokines. One kind of cytokine is called Tumor Necrosis Factor, or TNF. TNF can sometimes cause cellular inflammation, which can in turn result in fatigue. Anti-TNF medications like Enbrel, Humira, and Remicade try to block TNF production, therefore decreasing inflammation. Less inflammation may mean less fatigue.
Measuring Fatigue
There are a number of ways you and your doctor can learn how fatigue affects you. Pain, for instance, is often rated on a scale. Fatigue can be measured in the same way.
Measuring your fatigue is a good way to determine how much it is a part of your day-to-day life, and whether it improves or gets worse over time. One way to measure fatigue for yourself is to keep a diary. Write down when during the day you feel the most tired, and also when you feel you have the most energy. It may help to use a scale to do this. For example, on a scale from 0-10, with 0 being no energy, and 10 being the most energized, how do you feel when you first wake-up? How do you feel at lunchtime? Over time, you may notice patterns in your fatigue. Identifying and understanding these patterns may help you and your doctor plan more effective ways to combat your fatigue.
What Your Doctor Can Do For You
One of the first things your doctor should do in assessing your fatigue is to look for other medical conditions you have that may be contributing. An undiagnosed iron deficiency, thyroid condition, or bleeding could all lead to fatigue. You and your doctor should also talk about your nighttime sleep. Do you generally sleep well or is your sleep interrupted? Are you sleeping on the right pillows? Is your mattress firm enough? Small changes in your nighttime sleep habits can make a big difference in daytime fatigue.
What You Can Do For Yourself
Go easy on yourself and respect your body’s limits. Accept that you are human, and that fatigue can be limiting. Consider making a to-do list and then cross off the least important items and save those for a time when you are feeling more energized. Make daily household chores and outside errands easier when you can. Limit trips to the grocery store by storing frozen foods or ready-to-eat meals that can be easily prepared on days when you may be feeling more tired.
On days when you are up for it, consider exercising. Exercise can improve muscle strength and release endorphins in the body, which can make people feel more energized. Before beginning any exercise routine, however, be sure to discuss it with your doctor.
There are also ways in which you can use your mind to help combat pain and fatigue. Cognitive behavioral therapy, or CBT, is a way of changing your thoughts to help change the way you feel. Certain therapists who are trained in CBT can provide this kind of help. Other activities, such as meditation and yoga (if joints allow), can also be effective.
Making healthy choices about your eating and sleeping habits can also go a long way to managing fatigue. Respect your body when it needs rest. Create a bedroom environment that is conducive to sleep. Leave the TV in the living room. TV watching at bedtime can be stimulating and make it hard to fall asleep.
In the workplace, take breaks, walk around, and ask for help when needed. You may be entitled to certain considerations, for example, a different chair, or a wrist pillow to use while typing. In certain cases, you may also be able to do part of your job from home. Consider speaking with your boss about accommodations that may help you to do your job more effectively.
Lastly, do not be afraid to ask family and friends for help. Most people will be happy to help with errands or other chores when you are not feeling up to them. Occasionally, someone may not understand why you are feeling so tired. You may have to help teach them about how and why fatigue affects you, and that it is a symptom of your arthritis.
Fatigue is very common with RA and it often has a big impact on quality of life. In spite of this, the topic is often overlooked in doctor/patient visits. When you see your doctor, remind him or her to discuss this with you. Doctors are still learning about the relationship between fatigue and inflammatory arthritis and the subject should be explored often as part of treatment.
Patients should learn about how fatigue impacts them personally and what they can do to adapt. Doctors and patients should make it a point to work together to become better educated about fatigue, and to find the best ways to manage it for each individual.

How to Beat Fatigue

How timely! It's not constant for me anymore - haven't really had fatigue for a couple of months maybe. Though I always have limits, a bit like the infamous 'glass ceiling' - I can't see it, I often tell myself it's not there, but I bang my head on it if I'm not careful. Then today - hello! - I thought I might just expire in a lovely little town in mid-Wales called Llanidloes. Son was with us and how I'd love to be on form for him. In those situations becoming a vegetable is a bit heart-breaking. I just rode it out and a kip in the car restored me to my more normal lack of vigour, i.e, enough energy to chat and have a laugh.
All of the above is great advice. Fatigue is real, coping with it requires staying real. But I hate it with a vengeance.

What I hate most of all is remembering how I could go from morning alarm to lights out without a break. Teach all day, run home, make and eat dinner, throw laundry into a machine, go to meeting, do some paperwork, pack a lunch and go to bed. And now a big day is a load of laundry and a trip to the supermarket, and the rest is sedentary activity like moderating or sewing.

Pacing, and knowing when to take a rest is difficult for me. Husband is starting to recognize the signs: the other day he said “It’s time for you to sit and rest, isn’t it?”. And he was right.

Sybil you make me laugh with your “normal lack of vigour”.

I experienced crushing fatigue for a couple years. Looking back, I'm not sure but I think it was partially due to insomnia. But, boy, that felt weird--I always wondered if I had narcolepsy (sp) and was able to fight it enough to barely stay awake! Ever since I've been on Enbrel I have tons more energy and can go on less sleep (about 6 hours). But, 3 times in the past month I've had a weird thing happen--I had a sudden feeling of complete exhaustion and felt like I was going to faint. I felt light-headed and had to lie down for about a half hour before the feeling would pass.

When I had that crushing fatigue, I just kept going, but got less accomplished and became so frustrated. I think the fatigue is also a result of so many aches and pains. My limbs always felt really weak when my PsA was active--I'm not sure if that's a common symptom, but it was for me.

Ugh, yuck.

I think of the fatigue we get as chemical in origin. Which indeed it is in inflammatory disease. It's compounded by poor sleep - which often seems to be its evil twin - and stress and pain and so on, but you can't argue with cytokines. (I like that line because it's short enough for me to remember when I'm about to beat myself up, but if the cytokines aren't to blame or are not the only culprits I'm sure someone will tell me).

There again, we can argue with the underlying process ... and we do, by aiming for the best possible disease control. But in the short-term there's no mileage in blaming ourselves. I've wasted so much time doing that.

I guess it’s not only me in my family to be a member, but now I can add my husband as a relative–I know he’d never get on here and ask for advice or support, so I will for him. His fatigue and exhaustion (are they one in the same?) Are really getting to be a problem for him, and us. He doesn’t have the energy to do anything. He can’t walk more than 50 yards and he needs to sit down–when he goes from one place to another in our house he’s panting as if he just ran a half mile!
I’m not sure what cytokines are, but I get you, Sybil, about chemical imbalances or whatever that must definitely play a big part in how we feel. I’m sure the fatigue is partly our body’s self-defense against whatever is attacking it.
It doesn’t help that he’s obese. I keep telling him that. Because now it’s become more difficult for him to lose weight–he really isn’t overeating anymore–but sits around so much he doesn’t burn off extra calories.
I wish I could go to his p.t. and rheumy appointments today, but I’m babysitting a couple grandkids. I’d sure like some advice on how to get him moving a little more. I don’t think he understands the importance of that (or maybe he just doesn’t care).

When his disease is under better control he will be more able to push himself. If he’s that breathless though, he should be seen about that.

Yep, fatigue is debilitating! When I ask about it, the doctor pretty much just ignores me. I just started Enbrel last week so hoping that makes a difference. I agree with Seenie... It's hard to look back at the things I used to get done in a single day but now pacing is the key.

Take naps and pace myself

It's been a slow process of learning to recognize--and be okay with--when my brain may not be done but my body MUST. That's why I try very hard to visit new clients on Saturdays (my husband works; I hate asking him to take time off because I'm not driving at present). Saturday visits give me time to recover on Sunday so I can get to work on Monday. This past Saturday, however, was a 13 hour day--over 8 hours round trip, 2 hours with client and then a little over an hour stop at the Commissary. I'm here at home today because of a number of things, all of which lead back to my body simply needing more time.

Every now and again, I do visit one of the prisons 40 miles away on Friday afternoons but I still have to ask him to take off. I've asked to go (to the very same prisons/jails) with the folks I work with innumerable times. One can only get no response/ignoring requests so many times before finally giving up. There are two prisons in Kentucky which are on my ALWAYS video conference list. Toward the end of the year, after I get more than the number of arbitrary "thou must visit no matter what and no matter what logic, your own professionalism, ethical and/or moral duties say" marks my bosses require, I do mostly video conferencing. One more visit and that will be me for the remainder of the year, other than my trial client.

My husband is really good at recognizing when he needs to call a stop. He says the look in my eyes changes and my face becomes pinched looking.

Fatigue is such a pain in the butt, like Sandy my Doc doesn’t react much to my fatigue, other than to say…“you need to exercise more” !!! Yes how silly of me! Exercise, why didn’t I think of that?! So the 3 times a week swimming, exercise classes in the pool and in the exercise studio aren’t enough then, you would like me to completely knacker myself on the alter of exercise?! Sorry for the sarcasm but sometimes they don’t understand at all!

Personally if my exercise has slipped a bit I do try to step it up a bit, but if I can’t cope, for example walking up the stairs to the studio is too much! I can’t string sentences together, cry cos I’m flat on the floor then I rest more, put off jobs that aren’t essential, let myself sleep, take strolls in the fresh air and try to chill out until my fatigue level gets to my normal level of just plain knackered x

I am pretty fortunate that my Rheumy does understand the fatigue. He's very sympathetic and does offer some advice. It's mostly "rest and don't over do it" but my middle name is "OVER DID IT". So, it's the wall. I am slowly learning how to anticipate "the Wall" and plan for it. My son starts school in a few weeks and that should allow more rest time, I hope.

The past two night I had awesome, amazing, and wonderful night sleeps! I woke up a new person. Hopefully it continues. I took the monitor out of my sons room. So no more night time wake ups for questions... he likes questions.

Good sleep is a short-term cure in my book. I know I've referred to sleep already (I think about it a lot!) but isn't it the case that the same processes that cause fatigue also cause unsatisfactory sleep? So many of us have problems sleeping and I gather that's not all about being kept awake by pain - or by little people with many questions! The summer before the disease hit hard I couldn't believe how shallow sleep became .... it just didn't make sense to me as at the time I was working out of doors 6 or 7 days a week and having a ball.

amielynn38 said:

I am pretty fortunate that my Rheumy does understand the fatigue. He's very sympathetic and does offer some advice. It's mostly "rest and don't over do it" but my middle name is "OVER DID IT". So, it's the wall. I am slowly learning how to anticipate "the Wall" and plan for it. My son starts school in a few weeks and that should allow more rest time, I hope.

The past two night I had awesome, amazing, and wonderful night sleeps! I woke up a new person. Hopefully it continues. I took the monitor out of my sons room. So no more night time wake ups for questions... he likes questions.

Sybil you’re so right, unrefreshing sleep is a symptom in itself, especially those with fibro type symptoms too. I cannot remember the last time I woke up “full of beans” after a lovely sleep. Think it could have been back in the early 00’s.
Amielynn38, I remember those days well, but my youngest used to wake up in the early hours and not ask questions but sing, steadily getting louder til I appeared. lol he was just so cute :slight_smile:

I recall reading a list of PsA symptoms somewhere online back in the day .... and amidst a list of things that made perfect sense was one odd item "falling asleep on car journeys". I mean ..... everyone falls asleep in the car given half a chance so ..... But I'm sure PsA does take this to a new level. I demonstrated this symptom perfectly once while driving from Aberdeen to Shropshire on my own: 20 minutes driving, 10 minute nap, repeat as necessary! It took forever!