May 31, 2011

What the bleep is wrong with me?!?

The past few days I have slept nearly non-stop around the clock - waking up only to complete the most crucial life eating.

My body hurts in ways that make no sense. My elbows hurt. My legs ache. I feel like I completed an Ironman and then lost a few rounds in the boxing ring.

Walking from the kitchen to the bed I am short of breath and dizzy. I hit the mattress and find myself asleep for 6-8-12 hours at a time. I wake soaked in my sheets from night sweats.

The sun outside hurts my eyes and I hide in the darkest room in the house to avoid the light.

All of the gains I made in the past few months have disappeared. Where did they go??

No point in calling the doctors; they've heard it all before and have anything new to offer. No point in telling my friends, who wants to hear this crap? My family are kind, but worried...I don't want to trouble them either.

Is this a flare?
A relapse?
Extended jet lag?

I can't find a single diagnosis that matches my symptoms and it is frustrating as hell.

Thanks for listening...I'm going back to sleep now.


  1. How awful! I'm sorry you've hit a rough patch - I hope it clears up soon, never to return. Sleep well.

  2. You have had the am cortisol tested before right? 'Cause you sound a little like me there.

    Have your docs run any blood work when you are feeling like this? That might be worth pursing.

    Hope you feel better soon.


  3. I hate all the back and forth, it seems like a tease, sometimes...the sleep, though, always seems to make things a little clearer the next day, for me, anyway.

    Thinking of you.

  4. Headstrong - Thanks for the support. Do any of these symptoms sound lupus-like to you? I still haven't found an answer to my high ANA, and it is always in the back of my mind...

    POP - I've had am cortisol tested twice before, the first was low, the second time was normal. All of the blood work I've had done when I feel crappy is pretty much the same: sort of low ferritin (but not too low), high ANA, nothing ever points to a clear direction. Do you have any ideas of what else I should be tested for?

    E. Greene - I agree, the back and forth is awful - you get your hopes up and then *boom* another crash.

  5. If you've had even one low cortisol test and with your symptoms, I would keep checking. If you get another low, I would be pushing hardcore for an ACTH challenge and ITT test (if it becomes necessary).

    And talk to some of the adrenal patients here ( as they have more expertise than me.


  6. Have you ever entertained the idea that you have an autoimmune disease? There are other foods that are giving you a leaky gut besides gluten and this launches your immune system to attack you. You need to see me.

  7. definitely appears autoimune since the ANA is high, symptoms question now becomes which one/ones :( there are over 100 AI diseases out therw and often when a person has one, they have at least one other which ends up confusing the doctors with conflicting symptoms.
    this link will most definitely help in many ways:

    I still don't understand the difference, I mean if your autoimmune response is out of whack, should be one or two "basic" ways to a road back to living. Unfortunately not so for everyone-I'm 6 years into this crap and no end in sight. I woke up this and yesterday morning as if a semi had run me over, backed up and did it again...and that's with 24/7 pain control. All I can say that may be any use to you is demand a visit to a neurologist (I still haven't gotten this), more important a rhuematologist (extremely helpful!). be sure you and your doc have a great relationship and if its a big practice-be sure that you can request him/her every time you visit, as this saves mix ups and repeating every thing before you get to the day's symptoms that are bothring you.

    good luck and I wish you the energy and the pain free day you deserve!