Blog changes

Thanks to everyone who followed Training Because I Can! over the last nine years. This blog started with Addison's Disease, hypothyroidism and a crazy idea of doing an Ironman distance triathlon. My life has changed and so has this blog. I am using this blog strictly for Addison's Support topics from here on out. I hope to continue providing people with hints for living life well with adrenal insufficiency.

Friday, March 13, 2009

Regular tired versus Addison's tired

There's been a lot of discussion about being tired on a Yahoo Addison's board where I lurk and Diane emailed me and asked me about being tired so I thought I'd write about it here.

This is what runs through my mind when I'm really tired:

I look at the clock and do the calculations, 5 pm, only 3 hours until I can hop in bed and 4 hours until I can reasonably fall asleep. I question myself, "Is this regular tired or Addison's tired?" My temper is short, my eyes burn, my body aches, all I want to do is close my eyes and sleep instead of driving to pick up my son. Is it possible for a person to fall asleep driving at 5 pm? No. I'll be ok. Do I take more Hydrocortisone? No, I'll wait, maybe I'm just regular tired. I get home and take care of more boring tasks, I'm cold to the bone, take a shower that only burns my skin but doesn't get rid of the cold I feel deep down inside. It's 6:00 pm, should I take more Hydrocortisone? No, I'll eat dinner first, maybe that's it. I didn't do anything but sit in front of a computer all day, how can I be so tired? I look at the clock and it's 7:20 pm. Only 40 minutes before I can get in bed and 1:40 before I can reasonably go to sleep. Time to clean up the kitchen, oh crap, how I'm I going to get through this? The nausea hits and I cave in to taking extra Hydrocortisone. Crap, I already take 25 mg of Hydrocortisone a day and I'm small. Will I get fat, will I have trouble sleeping, will I get osteoporosis? I pop the 5 mg of HC reluctantly and wish it would kick in faster. Finish cleaning the kitchen and straightening the house. I get into bed and feel huge relief. I can't screw much up from here with my malfunctioning brain, the electric blanket will eventually get rid of the cold that I've been suffering through for the last few hours. I'm too tired to reach over the bed for the remote, I'll watch whatever's on. An hour until I can fall asleep. If I fall asleep now, will I wake up with a migraine from screwing up my sleep patterns? I'll stay awake for an hour more. Ahhhh reality TV is on and is about my speed since reading is an impossibility because I can't concentrate. I can't plan out the next day because my brain can't think clearly. I drift off to sleep, hoping tomorrow will be better, that I will not be so tired...

The above example is how I feel at 5 pm about 50% of the time these days. Perhaps it's the weather, the time of year or the stupid daylight saving time that prevents me from starting my day until an hour later, makes my day start in pitch blackness and wastes an hour of daylight by making the daylight be in the evening when I'm too tired to enjoy it.

Sometimes, though only 2 or 3 days a month, I'm so tired that if I had the flexibility to stay in bed and sleep all day, I would. For so many reasons, this is not practical for me. I usually end up feeling like I have the flu, sitting at the computer, wishing that 8 pm wasn't in 12 hours. Sometimes I put my head down on my desk and cry because I'm so tired.

Addison's tired is such a different tired than regular tired. Many times with regular tired, you feel satisfied that you've done something to "deserve" being tired. There's a reason for it, you've pulled weeds in your garden, finished a big project or played with your kids. Addison's tired leaves you feeling cheated, scared and sick. I always wonder if I will pull out of Addison's tired. Will it be intractable this time? Addison's tired feels like a tired that will never and can never go away. Addison's tired hurts. Your brain doesn't work, your muscles and joints hurt, maybe you cry easily or anger easily. You don't feel like you. Hell, sometimes I can't even make simple decisions. I stare at the person asking the simple question and wonder when the words will come out of my mouth and what I'm going to say. It's like my whole body, mind and soul has short circuited. I feel like an idiot. I try not to go out in public when I'm like this.

The day after the Addison's tired I try to evaluate what might have caused the tired. Sometimes I'll look at my pill case and see that I've missed half my meds or I'll vacuum the floor and find my pills on the floor, have I gotten enough sleep over the last couple of weeks, am I eating OK and often enough. Maybe I was supposed to start my progesterone and didn't. Usually, there's no noticeable reason except my body occasionally breaks down and tells me, "NO!"

Addison's tired sucks, it hurts. Often, for me, taking extra HC doesn't even work. I just have to cry, feel sorry for myself, stay out of public, don't answer the phone, hope the work that I've done on the computer isn't crap and hope I won't have to redo all of it.

Mostly I hope that the tiredness, fatigue and exhaustion will pass. I hope I'm not getting some other disease. I hope that I won't have to spend money on doctor visits or start taking more meds and tests. I always hope that tomorrow will be better.


Pip said...

I've been lurking on that discussion as well! You've pretty much described how I used to feel before diagnosis. I think the key for me was the distinctive heaviness. I just felt like I couldn't hold my body up any longer. I also remember the fuzziness and a sense of slurring my words. After I'd been dosed up on Solucortef in hospital it was my speech that was a revelation to me. I felt like I was speaking much more crisply, and to add to that, everything was suddenly interesting again.

Now, I find the tiredness is much more of a grey area. Like this afternoon. Sure I'm tired, but I rode for three and a half hours this morning. Surely that's a normal tiredness? I'm still trying to work out the difference.

Unknown said...

WOW! I stumbled across this blog by entering "hydrocortizone, exercise and Addison's" into my search engine and it this blog was on top of the list.

I have been feeling very tired with muscle and joint pain since December. It's all been getting progressively worse every day it seems. About a month ago I found out that my cortisol level was less than one and further tests (ACHT stim) verified that I have Addison's.

I've been searching all over the web to find out more about the disease, treatment, side effects, etc...then I came here and I can definitely relate to your description of the fatigue that you are experiencing.

I do physical work and by the time that get home, I clean myself and go to bed. Then I wake up tired and sore and begin the cycle again.

I see the endo doc for the first time on Wednesday (the 18th) and hope to get on steroid replacement and also hope that it helps.

It sounds like you are still wiped out in spite of the fact that you are taking hydrocortizone every day. How much worse was it for you before you started on the pills.

Sorry for butting into your blog...I'm just trying to learn what to expect from this disease and treatment.



Unknown said...

Hey Pip,

Way to go with your PB on your half marathon!

What I was describing in my post was the Addison's tired which for me, rarely follows exercise. If I feel the way I was describing, I can't do ANYTHING at all let alone start my workout or dress for it. Sometimes I need help walking to the bathroom! I can run 50 or 60 miles at a whack and can't walk to the bathroom other times, go figure!

I'd say if you can talk and move, it's regular tired! :) You'll know the Addison's tired when you get it. It will probably come out of left field and you won't know what caused it or how to walk to your kitchen cabinet for your meds.

:) Dusty

Unknown said...


I'm glad you found my blog. I hope you get lots of information and inspiration.

I occasionally have days like I described in my post but the other days I work a very physical job and train for endurance events.

Now that you're diagnosed with Addison's, you will start to feel better. What I was describing only happens to me infrequently but I think it's important for others with Addison's to know not every day is awesome for me.

HOLY CRAP, you had the ACTH stim test and your doc didn't prescribe steroids yet. That's malpractice.

Make sure you're super educated before you go to your doctor's visit. Most likely you will know more about addison's than your doctor. That's usually the case.

I urge you to print off the Addison's owner's Manual and the Cecil's chapter on the Adrenal Glands and make copies for your doctor. email me and I'll email you links to all the important info.

:) Dusty

Anonymous said...

This is an interesting description, Dusty. The screwed up speech and the loss for words. The waking up tired the aches and pains. These are all things I experienced prior to HC therapy last summer.

I was diagnosed with Relative Adrenal Insufficiency so my basal levels are typically around 7 or so. My Stim tests show I have very little response to increased stress though. While I've never had anything close to adrenal crises, I think the cumulative effects were leaving me in the afore mentioned state.

I am only taking 10 mg HC a day. It took me months to have any real recovery and in fact the first 6 weeks I had chronic vertigo and couldn't walk across the room without getting nauseous. As I recovered I would feel good for a day and crappy the next 6. I have gradually gotten to where I feel good most of the time. But the fatigue comes in waves and cycles.

Regardless of how I felt, I got up and went to work everyday. I did have to quit coaching my son's baseball team after almost collapsing on the field in Sep. Not to mention I hit a few kids throwing batting practice! Very frustrating.

But I'm not quitting! I just started my first day as a head coach for Little League today. Wish me luck!

The idea of "looking" sick is a bit of a conundrum. We get to sport this sexy Addison's tan and lose some weight because you have no appetite. Look great, feel like shit! Go figure. I have felt myself thinking, "what, don't I look sick enough for you?". Maybe I'm just lazy and depressed and that's why I can't get off of the couch. Ugh.

BTW, New Jersey misses you today. It's sunny and 60 deg!


Unknown said...

Hey Jersey,

How's the Little League Coaching going? How old are the boys? FUN!!! You're not supposed to hit them with the ball though. :)

Love this, "We get to sport this sexy Addison's tan and lose some weight because you have no appetite. Look great, feel like shit!"

:) Dusty

when the musics over said...

It's been a couple weeks since I read this. But, man, does this hit home. So, yes I am coaching 9 and 10 year olds. It's wonderful, I love working with the boys.

Last Saturday was opening day. Windy as hell, 35 mph all day. At the field at 9 AM, assemble the lads, hand out some uniforms. Line up and listen to the local wind bag discuss the last 50 years of Little League baseball in Linwood. Get on with it, were freezing out here. Send them home after telling them to be back at 5:30 for our first game.

Spent most of the afternoon working on the house. Nothing too major, hammer and nails shoring up some support beams, etc.

Get to the field at 5:30. Organize the lineups, run through drills, proceed to coach my first game. The boys have trouble throwing strikes so it drags on. I felt pretty good up until the last half hour. Then The Tired starts in. Shut down the facilities and take my son out for a hotdog at 7-Eleven (the game went late so the concessions closed). Home at 9:15. Wind down on the couch, knock back a few.

Next morning I can hardly move out of bed. 9:30 I drag myself to the medicine cabinet and pop 10 mg and go back to bed. 10:30, drag myself out of bed again and get dressed determined to be productive. My hands are so swollen, my wedding band is cutting into my skin. Takes five minutes to lube it up and screw it off. Wife and kids went to church, I'd like to plug in my guitar and get in a few licks. My hands are swollen and joints stiff. Ten minutes of that and I quit in frustration.

Now I'm regretting the "voluntary" practice I scheduled at 1:30. It's not voluntary for me, I'm the coach. Try to eat, down another 5 mg at 11:30. Sit on the couch and try to do some creative writing. Creative my ass, I'm brain dead. Shut the laptop and put my feet up.

By 12:30 the HC is starting to pick me up. I'll get to practice after all. Made the best of the 90 minutes on a beautiful afternoon. Home at 3:15. Dad is finished for the day. Damn did I ache.

This is what I call a "body hangover". And I have Relative AI? I don't know how you can run 50 miles. That's amazing!


Unknown said...


Sometimes I don't know how I can do much of anything, like today. I put off eating or going to the bathroom because it seems like too much work. I get really achy in addition to the tiredness too. I think the key to this disease is to be your own researcher and advocate. Make sure you're optimizing your HC dosing and that your hormones are all normal (most doctors don't do this for you! You've got to ask/beg for the testing you need). Lastly, you've got to accept that OCCASIONALLY there will be days that you feel like total shit. I'm having some trouble with the acceptance!!

Jean said...

This insight into "Addison's tired" is so helpful to me, a mother of a 6 year old girl with Addison's. But my problem is trying to figure out: is her lethargy & nausea related to her seizures or her Addison's? Probably doesn't matter--more hydrocortisone is usually a good place to start.

Your description is such a clear picture of all the things this exhaustion affects--physically, emotionally, and mentally.

Della said...

Anyone else out there struggling with migraine headaches on top of their Addison's Disease? I was dx'd 15 years ago, and had migraines then, but they've only gotten worse, so that I get one bout 75% of the month. Imitrex, Zomig, Maxalt, Amerge, etc. work well for me so I can go about my day, but I've probably set up a rebound reaction at this point. None of the prophylactics (antidepressants, anti-seizure meds, etc.) have worked for me because I get sedated to the point that I can't work.

Unknown said...

Della, I get migraines too and I've tried prophylactics (hormones and Prozac) and nothing works. Sorry yours are so bad. I feel lucky that mine are once or twice a month since I've started replacing all the hormones that I'm missing (progesterone, DHEA, melatonin, testosterone). Do you replace any other hormones? Have you ever considered going to the Diamond Headache Clinic? :) Dusty

Unknown said...

Hi Dusty, Very interested to read your blog because I've had Addisons for 20 years and have the same symptoms you describe.

Lately the exhaustion and muscle aches have got much worse - probably due to menopause. Have been prescribed bio-identical hormone replacement of estrodrial and progesterone for the last two years and recent testosterone levels extremely low.

You mention taking DHEA, testosterone, progesterone and melatonin Do you find these added hormones make a positive difference to quality of life? I have been reluctant to try the testosterone because of side-effect of acne . Would value your comments.

Unknown said...

Hey Denise!

Come join us at my forum and we can give lots of input! Yes, replacing deficient hormones helps TREMENDOUSLY with improved quality of life. All side effects can be avoided with appropriate replacement, regular blood work and adjusting doses of hormones so that you stay within age and gender matched ranges.

Anonymous said...

Finally found others with "Addison's". 3 years ago I nearly died, no dr. knowing the culprit. They hit me hard & fast with steroids to bring me back, liver, kidneys...all was shutting down. Was intubated, chest poor husband alone watching!!! Now almost 3 years later a new Doctor listened to my story...tested my Cortisol...the did the ACHT..not good!!! Now on prednisone...only 4 mg...feel like crap.. but Endocrinologist does not seem to listen. SHe denies saying she was going to ween me off to see if the Cortizone injections from my knees could be the culprit???? The Orthopod called her when I was in so much pain..said just do the knees!!! Round & round we husband ALWAYS goes with I know I am not crazy. I just want to feel better.

Unknown said...


Come to my website and join the forum. Sounds like you need help advocating for yourself with your doctor. We have a lot of advice and info.