The Brick Wall of Fatigue

I have had times of fatigue during the course of this illness, but recently I have experienced it on a whole new level, I have been working out for a month and about a week ago I got a migraine, then a flare up of swelling and pain and then this fatigue that I have not experienced to date that has lasted 9 days now.

I feel like I could just sleep and sleep and sleep. Over the last couple of days I also had an art show which turned out to be quite profitable, thank the Lord, and the joys of getting a root canal.

I am so wiped out and I feel like I have been caned in the backs of my legs and my knees, ankles and butt muscles hurt so bad. This is literally a pain in the ASS, hahhaha. I am going to the gym for the first time in 5 days and I am going to try to do half of my usual workout.

I called my rheumatologist yesterday to report this and he ordered a short prednisone burst. That will probably feel like going from 0 to 60 in 3 seconds. By tomorrow I should be loony.

How does one manage this ? How do you "listen to your body" when your body is saying "lie down and sleep indefinitely"? If I listened to my body I would not get anything accomplished and the first thing to go would be going to the gym.

The best way I can describe the feeling of this fatigue is like if you had a bad hangover and came down with the flu at the same time.'s everyone else doing ?

Awww, Mimi, that just sucks. And you were so happy about how well you were doing on your new, active regime. Two steps forward, one step back, I guess. But Mimi, if your body is telling you that it wants sleep why are you planning to take it to the gym? Would a gentle walk, or maybe some swimming, be better for you right now?

Hope you’re feeling more yourself soon.

Ugh. Sorry MimiB. I'd say that this is part of the whole process. Some days are diamonds. Others are coal.

I found it difficult to "listen to my body" at first. I wasn't sure what I was listening for. And my timing was terrible. By the time I had interpreted the message it was usually too late!

I know you've got a newly developed workout plan but perhaps it was a little too aggressive a way to start? Once I got back into a regular schedule I set myself quite a tall order of a workout plan, too. And I was fine with it while I was on prednisone but it has been a little harder to manage since I'm no longer assisted in the energy department by daily doses of steroids. That notwithstanding, I have had to listen carefully to my joints, my back and my general energy level and more than once I've had to excuse myself from some activity or commitment that got in the way of either exercise or downtime.

THIS is the balance I struggle with: work / working out / hobbies and commitments / family. Often I can make time for three out of four, but not all four. It used to be that in those situations I had typically robbed time from the family bucket. I've realized that now and I have changed my ways. Now, if I need more time, I steal from the work and commitment buckets. Family and working out HAVE to be priorities for me as without them I would be alone and immobile.

Anyway, I write all this to encourage you to keep trying to find a path that works. Further, you do realize that you have a LOT on your plate as it is, right? And for someone struggling with an autoimmune illness I think you have HEAPS on your plate! Work, family, art show (which meant you spent hours making product), doctors appointments, etc. It is really awesome that you do so much but you might want to ask around on the board about how much/little people feel they can accomplish without feeling utterly burned out. It is probably a lot less than you're doing! So, kudos for doing so much but feel free to work yourself a little less hard!! You might have a little more energy for the gym if you do.

And please know I write to you as your friend in illness and workouts who, like you, is struggling to find that tipping point (but not tip over!).

I struggle with it too. I find with a fare I am unable to get anything done, not even the pool. As the flare ends and I start to feel better I have to be very careful not to overdo and that has been very hard to remember. I start to feel better and I can see all the things that need doing! I re-start the pool with half my usual exercises and do nothing for the rest of the day that requires muscle and tendon. The next few days I add muscle/tendon using activities in 20 minute increments. I try to get lots of rest and sleep and keep adding 20 more minutes every few days.

It takes a while to learn what our bodies need but I did find it was a lot less activity than I would like. I hope this helps Mimi, I will keep you in my thoughts and prayers.

Hi Mimi,

One thing you'll find long term with PsA is that the more you "push through" and don't listen to your body, the more push back your body will give you. Yes, there is a fine line between listening to your body and getting things done. If your body says rest, build in ample rest. As in, add in a good 3 hour nap / rest time in the middle of the day. Keep pushing through and you may get a monster flare. You have a lot on your plate, and your body is telling you to take something off that plate! :)

I am going to take y'alls advice and REST ! Thanks for listening and you all are the best. I only did 20 minutes on the bike today and then I got my hair cut and had to pick up something at Walmart and I am done for,

I keep reading how exercise is so important when you have PsA, but honestly if I listened to my body, it would scream "Please don't make me go to the Y, please, please, please, NO!!!" So I am wondering what the bare minimum is when you are flaring, and what if the flare lasts for a couple of weeks ? Should you try to do a little something, and if so how little or how much? I feel like I am trying to nail jello to the wall to find the answer.

To top it off, my dad just called and wants me to ride with him and my stepmom from NC to Dallas TX next week, which would be two days in the car and two days back ( for my brother's 50th birthday) and as much as I would love to go to the party and hug my brother I think all of that sitting in the car would do me in. I've got to call my dad tonight and tell him and I know he's going to be disappointed, but I just don't think I could handle it. That's another thing about this stuff, is not being able to meet everyone's expectations. Even when you want to go but can't.

I hear you mimiB. And the disease is invisible so even when you are able to say "no" people question it as you don't look sick. It really sucks. I like your analogy "nailing jello to the wall". I like it. I also like "herding cats". Both fit life with PsA!

When I am flaring I lose my appetite, hit a wall of fatigue, and walk like Frankenstein all day not just the first 2 hours. I usually feel chills, and don't want water on my skin. Instead of exercising in the pool 3 X week I MIGHT go once a week. If I don't manage it once a week, during a flare, I try to get some walking in. Either the grocery store or if the weather is nice around my neighborhood. I walk slowly and carry my cane. I find the arthritis class in my pool moves too fast when I am flaring. If I push it I get tendonitis and bursitis in all sorts of places and my spine or fingers start locking up. It is quite painless though the tendon spasms hurt like hell. As my flare lets up I am able to increase my activity in increments. Which is lucky because my appetite comes back so I better get moving or I'll get fat!

This is what works for me mimiB. Remember we are all different. I am also old (I had a birthday this week!) I am 57 now. I did not get my PsA diagnosed until I was 50 but had it in childhood, perhaps since birth. So that was a long time without treatment though I do remember wrapping a lot of tendonitis in Tiger Balm and flannel!

Michael, we sound so much alike ! I am going to be 56 in may as was just dx in 2012, but I know I have had it much longer than that. The enthesitis, bursitis and tendonitis stuff is horrible, OK, it helps to know what you do ICOF ( In Case Of Flare ) with your exercise routine.

I have a question about the chills. I get chills, but don't have a fever. How weird is that ??? I take three pain pills a day that contain 325mg of acetaminophen and I am not sure if that would be enough to mask a fever or not. Sometimes I get this goosepimply chilled skin crawly feeling and think I have a fever, but I take my temp and it's only 97 !

I like the herding cats analogy too. it's a wild and crazy world for us.

I don't run a fever either. I take 500 mgs of Naproxene (Aleve) and 1000mg of Tylenol morning and night. But when I am truly sick I will bust a fever right through that. I have had 2 pneumonia shots so I shouldn't get that sick again. And I don't see patients any more and my kids are grown. When I have a flare I get wicked chills and my nose runs! But it is clear like allergies. And I don't want water on my skin at all. It feels like I have the flu and multiple sprains. The tendonitis and bursitis sucks. I put Salonpas on them, sometimes a heated throw and sometimes the nozzles in the hot tub at the gym. All seems to help. I think you and I are a lot alike mimiB- you be Garcia and I will be Prentiss! I sure have her finger nails! Do you live somewhere warm mimiB? I sure know Vermont winters are getting to me.

Yes !! The clear runny nose !! I never associated it with a flare, but I think you are on to something there,

Garcia and Prentiss, LOL ! If I didn't spend so much $$ on doctor visits I would have a different pair of funky glasses for every day of the week, like Garcia.

I live in NC where it can be below freezing one day and 70 degrees the next, in the middle of March.

I have a SIL in Virginia. I keep wondering if a warmer clime would be better on my joints. I am just not sure it would make much difference but I will keep visiting her and thinking about it.

I have 2 pairs of glasses so maybe I should be Garcia! One is red the other sort of like a tortoise shell/calico cat!

Oh Mimi, hope you feel better soon. Its hard when you’ve done all you can to keep as fit as possible but the PsA kicks in and floors you yet again. I’m sort of in the same boat at the moment. This has been a weird flare, long and slow, I cut down on everything ( since Christmas) I was doing to preserve energy and be able to keep at work, so all I was doing was working and resting ( gentle walks on rest days). I gave in 10 days ago and said “enough is enough” been off work since. I know I’ve done too much as I’m so tearful as well as the pain and fatigue. I intend to take time to care for myself, think you need to do that for yourself too, and just increase your activity levels as you can. You will probably find that when you can get back on the “hamster wheel” ( my partners euphemism for life in general) you will be able to pick up at a higher level than you started before. Thinking of you x

Thank you, Louise ! It really does feel like a hamster wheel or a rat race maze at times ! May we all be kind to ourselves today and do something we can enjoy without wearing ourselves out !

I am new to PSA and thank you for sharing I just finished dragging myself through this week. I can’t express how much this post helped me I told my husband yesterday there has to be something really wrong I had to take a nap after work only 40 mins it felt like an eternity. I am learning about flares and have to say have read many posts thinking hmmm I don’t have those and after everyone here sharing this is what a flare is!!! My husband said yesterday as I sat at the kitchen table crying your friends on your support group have been through what you are going through!! I was shocked because he realizes I am sick but all the posts I sit and read in the middle of the night because my knees and lower back are burning are giving me comfort. I pray you feel better mimmi and again to all of you that share Thank you!!!

Hi Adirondack ! I am sorry we met under these circumstances, but I am so happy that my post sparked a helpful dialog for you. It sure helps me to be understood and to hear what other folks are experiencing and how they cope.

I come to this site a lot to read and lots of times it's in the middle of the night. Those 3 am "owies" can be so annoying. My pain meds don't carry me through the night. I wish there was something that would ! I hope you had a nice day. I had a great one thanks to 30 mg of prednisone and sunshine and lunch with a good friend. I even bought some yarn to make my newest grandson a blankie. I feel like Cinderella on prednisone, Tomorrow starts the taper, Booo.

Your post came at the perfect time. I was just wondering today what sparks my fatigue and I believe it is stress. I won’t bore you with details but this weekend has been filled with family stresses and emotions have been running high. Yesterday I was so fatigued I slept nearly the entire day and then went to bed at nine and slept all night. I have been in the middle of a costochondritis flare which has been causing me a lot of shoulder and back pain. I just think stress adds to my problem.

It's a vicious cycle, isn't it ? Pain, tension, stress, fatigue, and not necessarily in that order. it's like "Am I stressed because I am in pain, or am I in pain because I am stressed?" The answer to both of those questions is "YES". I don't think it's either or, I think it's both.

Who isn't stressed these days? We must have a strategy to reduce it, since it is unavoidable. Some stressful situations and people are clearly avoidable and that is what I try to focus on cutting out so that I have some energy left for the unavoidable stuff. I am learning, albeit slowly, to choose my battles.

I get so fatigued that I literally sleep for 16-18 hours some times. So, I understand how you feel.