Thank you, thank you - this is the first time I've heard someone (besides me) say they have to rest after taking a shower. I had been doing this for a year prior to my diagnosis of RA. Half way through getting ready for work every morning, I'd just lie down flat on the floor for 5 or 10 minutes. Eventually I'd scrape myself back up and carry on.
I'm doing much better now but still after a morning of light activity like laundry, dishes, straightening up the house -- I'm shattered and have to rest again. After working an 8-10 hour day I go directly to bed.
This is despite the fact that my rheumatoid is apparently quite well controlled -- no actively flaring joints at the moment. Always stiff and crunchy, though!

I like the benadryl comment too!

I am fairly new to this diagnosis and it is hard for people to understand. I can't be hugged the way I used to and that is hard for my kids who love to squeeze.

I think if anyone has ever had a low grade fever that has made them a little dizzy and needing to sit or lie down is the best way I try to explain it. If someone doesn't understand, I am at the point where it doesn't matter anymore. It is what it is!

Fatigue is sneaky. I describe it as feeling like I've been run over by a Mack truck. Even drying my hair can tire me out at times. I'm fairly strong, but sometimes at the end of the work day all I can do is sit on my couch and watch trash TV. You are not alone in this, sweetie. Unfortunately, fatigue usually is paired with RA.

No one can understand when they do not experience it so give up on convincing them. I applaud you and please applaud yourself for accomplishing all you needed to do and excuse yourself and be non judgmental of yourself when you rested as you needed.
All my best!

Nope others do not get.
My husband is on that list. Drives me crazy.
My sister has been struggling with Anemia. She's exhausted by it. She called me & said she can understand now & does not know how I manage. She's a person who can go on 3 hrs sleep easy so totally out of her norm. Takes something like that to happen before people can attempt to identify.
By the time I shower & dress I feel like I've been up for 24hrs.
It's the most frustrating thing, outside the brain fog that is.

You did a phenomenal job. Jeez even with my hyperactivity I'd be wiped out.
I rarely go back to bed. I do sit in the recliner staring into space until I lose the battle & take the toothpicks out holding my eyes open.

It's the one thing that sent a huge red flag up before my diagnosis.
With that kind of exhaustion I knew something was really wrong.
When anything or any outing is planned I just pray I can get through.
So hats off to you.
Sammy

I'm less than a year into this diagnosis, but dealt with it for almost a year prior - so hubby did see firsthand how much pain & problems had, just now know what to call it! Meds are getting it in check, but yesterday was a "roller coaster" day (my tech terms) - one minute, doing good, energy & no real issues; 5 minutes later, feel like a "wet noodle" & zero energy, chills; and maybe 10 minutes later, gone....thats frustrating!!! But keep him informed - I had read on a site this woman gave a "Rheumatoid rating" to her family everyday - so on a scale of 1 to10(10 being worst), she'd let them know her pain level; if she told them it was a 7 or 8, they knew she would probably need some extra help that day; if only a 2 or 3, well then they would know she should be good for the day. I have used that with my hubby - there have been some days, I just tell him, it's an 7/8 today, so be forewarned, I'll need some help. in my year prior to diagnosis, I got mono for the first time in my life & shingles - luckily, prednisone helped lessen the degree of shingles, but he reacted to that visual (& commercials) surprisingly, he really felt my pain & seemed to understand. Sharing a website or a book or pamphlet may help in educating others. Good luck! one day at a time...

I will get those days when I am down and out all day, but it seems more frequently things will change drastically during the day for me. It can go both ways.

This morning for example I felt pretty good - maybe a 4 or 5 but felt a little better after breakfast and actually had some energy. Tinkered around in the barn for a little while then spent 45 minutes on the tractor - felt good to get something accomplished for the day. Then around 2pm it hit me - that feeling that you know it is coming and coming fast. Sat down in my chair, turned on the TV, and was out within 30 seconds. My wife woke me up for supper and now am ready to get back into the chair.

I've also started out the day needed my cane to just barely move enough to make it to the bathroom. Then as the afternoon would wear on I would get better and better and be able to put the cane away. Weird stuff!

This is one of many reasons why it is almost impossible to make any kind of appointment - even to make plans for tomorrow. We only leave the homestead now once every other week to do a grocery run and plan it for Wednesdays. That of course changes a lot of times. But I think when I know when those certain Wednesdays are coming up I get kind of psyched up knowing that we have to go and get it done somehow. Same goes for doctor appointments that were made 3 months in advance. I somehow always seem to get to them - again I think I get myself ready for it days in advance and just get it done.

It is what it is.

Thanks everyone, great posts!!

I hit my breaking point and called my rheumatologist today. Felt like I had to scrape myself off the floor yesterday. So exhausted. My doctor's nurse is a nice girl, but she drives me crazy. Her response to my fatigue "Are you taking Iron? Have you called your PCP?"

Yes I am taking a multivitamin with iron. No I haven't called my PCP, because they will tell me to call my rheum!! And then finally the kicker.. "After you call your PCP and see them, and if they rule out things like hypothyroidism and low vitamin D, the rheumatogist will see you because maybe it is a lupus flare."

So now I have lupus too. Fabulous. :-P