There has to be a better word. I've recently switched to Humira from Enbrel, which gradually pooped out on me in 2015. After four shots (two months) I wasn't noticing anything to make me think it was working. But last week I got my first clue (I think). I'd had a very busy weekend, and at the end of it I said to DH, "I'm tired now, but I'm not having "that" tiredness. You know what I mean?" He had to admit that he didn't, but he was kind enough to say that he remembers my making comments like that in the past.
With this disease, there's tired and then there's tired. The word "tired", though, doesn't adequately describe it. Anybody who has the "tired" that goes along with PsA knows that it is different from just being tired: it has a different texture, a different density, I don't know, it's just different. I've called it "crushing fatigue" and I guess that's pretty descriptive.
So I got to thinking about it. How is it different? For me, the PsA-tired feeling is like having lead in my veins. Like having a dead battery. Unlike the "tired" that comes from a long hike or a particularly busy day, this tired is different.
I'm at the lead in my veins point. I usually lay down during the day, but today I was traveling to have lunch with family, and it was impossible. It can alternately be called so tired that I want to cry. And I still have to exercise today! Ugh.
I've been having alot of "that" tired lately and this week it has simply flattened me. For me it is a feeling of utter physical and mental failure. I feel weak (lead in every limb), vaguely nauseous, my eyes barely want to open or see and my brain is struggling to function with even the most basic tasks. I would willingly not even get out of my bed.
People around us don't understand ... a friend who I saw on Friday said to me that I must be ill. I tried to explain that how I'm feeling is not "ill" as she meant it such as having a bug or virus. I am simply tired, but not the kind of tired that a good nights sleep fixes. This is tired that sleeping doesn't fix.
Seenie, I hope that tired feeling--crushing fatigue--goes away when Humira is fully working. I was trying to think of my "tiredness" and how to describe it. I'd have to say that since being on Enbrel I'm not having any unusual fatigue. But, up until I went on Enbrel there were two types of fatigue. Several years ago--and I'm talking 10 or so--I had what I now call crushing fatigue, because I felt like I was going to crumble into a pile of dust. This went along with very poor sleep and after the doctor told me no caffeine after 1:00 in the afternoon, I was able to sleep better. After that, I had more fatigue that felt like exhaustion. You probably think, isn't that the same thing? It was sort of the same, except it involved my muscles. My arms and legs were sore and weak. Taking a shower in the morning after a good night's sleep wore me out. That was definitely a PsA symptom because almost instantly when I started Enbrel it went away. What bothers me now is I sometimes think it's coming back slowly, and Enbrel isn't fully working. It's nowhere near what it was back then, though.
Seenie, do your muscles get weak?
Also, like you, Jules, my brain is NOT functioning well lately. This past week I've had trouble remembering words that I should know. My daughter said something about an epidural, and I had to ask what an epidural was! My other daughter talked about a friend of hers and I couldn't remember who that friend was. Those are just a couple examples of what brain fog is doing to me this week. I hope it lets up. Does brain fog scare you guys, too?
Yes, GrandmaJ, it scares me ALOT and it's so stressful as well knowing that I'm not bringing anything like my "A" game to anything at the moment. "F" game for failure most of the time :-(
I do know "that tired"--crushing fatigue is a really good description--and the other tired.
I'm at "that tired" right now. I know better but I let bronchitis go on for waay too long before getting something done about it. After a week of listening to me hack up several lungs, this past Sunday, Paul hauled my sorry carcass to the Urgent Treatment Center. I'm not coughing up a lung as much or as often. But....I missed my last dose of Humira so it's been over 20 days AND one of our cats, my baby, my Mercedes, died in my arms this past Sunday evening.
Between bronchitis, no Humira and grief, "that tired" decided to enter the picture as we came out of the grocery store yesterday. I finish my antibiotic today so I can inject Humira tomorrow morning. I have a suspicion that I'll be calling for a Prednisone taper sometime this week.
I'm sorry to hear about your kitty, sixcat. My thoughts are with you. I also hope you feel better. I should scold you about the bronchitis, but I do the same thing. Right now I have a sore throat. We will see how it goes before I go to the doctor. My son just had a cold, so I am assuming it's viral. I have my injection today and I plan on taking it.
Yes, lead in the veins tired. Lay down in the walmart parking lot and die tired. Yes, that's my old friend. It's been a bit since I was that tired (thank goodness). Hope everyone gets a nap today.....
I get crushing fatigue and crushing pain and im only on plaquenil.I have rescheduled my rheumy appt for another day as i was too tired to take 2 buses there and 2 buses home.
I know both tireds too well myself, but I managed to get a good amount of much needed rest these last two days. Just in time for family issues to flare and I can not allow my tiredness to be even a discussion right now. I do want to send my condolences to you sixcat. I have been there myself, 6 months pregnant at that time, it was a hard week (regardless of hormones) saying goodbye to a dear friend that always cuddled my blues away. Love this discussion, maybe I will pipe in later.
So sorry to hear about your cat! I’ve got the worlds stupidest and most un affectionate cat - really he is! But I’d still miss him if he wasn’t here! As I don’t work my tired days consist of sleeping for 4 hours in the day then back to bed at 9pm for another 11 hours - don’t actually know how I’d fit in work come to think of it …
Thanks, amielynn and Rachael. Paul picked up his ashes yesterday. Today became the day when we allowed the grief in so we spent part of the morning crying and holding each other. Talking today, Paul helped me realize that when my cream tabby baby, my Tanner, the cat in my picture, the one I was so attached to (and he to me), went to the Rainbow Bridge in 2009, I didn't allow myself to grieve, in part because Mercedes filled the void and because I was getting sicker and too caught up in trying to hold onto what little life I had at the time.
He says when I'm ready--and I'll know when--we have enough love and room for the next feline member of our family.
I'm feeling better mentally, not quite so empty, a bit less tired, but bless PsA's little heart, my calling for a Prednisone taper is becoming more likely because my thumbs and the tops of my shoulders (a clear sign I'm entering a flare) are beginning to hurt.
So sorry to hear about your cat! I've got the worlds stupidest and most un affectionate cat - really he is! But I'd still miss him if he wasn't here! As I don't work my tired days consist of sleeping for 4 hours in the day then back to bed at 9pm for another 11 hours - don't actually know how I'd fit in work come to think of it ....
Sorry to hear about Mercedes sixcat. Animals are wonderful, the older I get the more I appreciate them.
I fear the fatigue. I think it's potentially a very isolating symptom. I've had it so bad I assumed I was on my way out and the only thing I had to compare it to was how I felt while waiting for a blood transfusion, completely out of it. These days it's more like there are fairly random 'limits' and I can live with that. I'm not usually too fussed about terminology but I do agree about the 'tired' tag, it doesn't really convey how crushing fatigue feels at all. There are other diseases that cause fatigue of course and disease-related fatigue is a whole different ball game from the tiredness that is a natural occurrence for even the healthiest of people.
Wow, interesting how one can go from never tired to exhausted overnight! Remember how I've been boasting of not being tired even after nights with only a few hours sleep--all because of Enbrel?
Well, today has been different.....all day long I kept saying I'm so tired today. Finally, at 5 p.m., I got a break and took a 2-hour nap. It's 7:30 and I'm still exhausted. I've never had days where I did the Rumpelstiltskin, but I'm thinkin' today could have been one of those days. It's haunting me that my Enbrel is fizzling out. My fingers have been throbbing all day, too, and that was one of my constant PsA symptoms.
Ugh--today has been a horrible reminder to me of the fatigue I felt every day before I started Enbrel. Hope you all are feeling more chipper than me!
I’m experiencing a flare and have suffered from crushing fatigue for about 3 weeks now. I rarely do any activities outside work. I just don’t have the energy and prefer not being around people when I feel this way. My hubby has not been understanding at all. He wants his wife back. Well I’d like to have the old me back too but I realize that’s not going to happen. He thinks I should be able to take a pill and make all my problems go away!
Yes, I do know "that" tired! Have had a couple of "those" days recently but as a whole, the Enbrel does help in that regard, even when it does not seem to be helping with my joints. I hope you get great relief from Humira!!!
Grandma J, I'm with you here. Have had a couple of really bad days. My Enbrel seemed to start fizzling out around last November but the rheumy said to give it a little more time so we are waiting until March to change things around. Even when the joint pain and inflammation flares, it seems the Enbrel has kept the fatigue at bay, until recently. I'm sorry you are having that kind of "tired" as well...
Grandma J said:
Wow, interesting how one can go from never tired to exhausted overnight! Remember how I've been boasting of not being tired even after nights with only a few hours sleep--all because of Enbrel?
Well, today has been different.....all day long I kept saying I'm so tired today. Finally, at 5 p.m., I got a break and took a 2-hour nap. It's 7:30 and I'm still exhausted. I've never had days where I did the Rumpelstiltskin, but I'm thinkin' today could have been one of those days. It's haunting me that my Enbrel is fizzling out. My fingers have been throbbing all day, too, and that was one of my constant PsA symptoms.
Ugh--today has been a horrible reminder to me of the fatigue I felt every day before I started Enbrel. Hope you all are feeling more chipper than me!
I prefer the term, “crushing fatigue”. It comes on so suddenly for me; I feel a little like the Sandman smacked me with his bag of dust.
Like yours, mine is worse when my meds are off, so hopefully Humira will give your some nourish results. I really hope your experience with it is as good as mine, since it was the best bio I’ve tried.
I pulled the trigger and called my rheumy on Monday. Two days into a dosepak and after 12 hours of sleep both Wednesday night/Thursday morning and Thursday night/this morning (yep, I was waaay late to work both days--the alarm, the cats yowling for their breakfast and Paul's repeated attempts did NOT wake me up), I'm feeling better--and a whole lot less "that tired" than at any time in the last three weeks.
I hated doing it--hate taking Prednisone--but I need all my faculties the next couple of weeks. Not to mention, I was DONE with the hip pain. Yep, the hip is better today than in the last three weeks, too.
This flare has taught me just how much of a whammy Graves disease crushing fatigue, PsA crushing fatigue, being sick, off Humira for two doses, on antibiotics and stress causes. Sheesh.
When I see him in March, I'll tell Dr. Abbas ol' curveball struck again. :-D
