Sounds like the symptom that's often been described as feeling "tired and wired". I get that every day.

I've described it as feeling "burned out", but it's more than that. You feel like you're wound up inside, like a watch spring...like you can't get your breath.

Hi, dear. Everyone can experience CFS a little differently. Some of us feel faint. Others do not. Some have a lot of muscle and joint pain. Others do not. What I would do at the appointment is to focus on the fatigue, muscle pain, and cognitive issues that you have. It is hard to describe how we feel, but I would not go into the appointment feeling apologetic in any way for your "weird" symptoms. Something is wrong with you and if your doctor doesn't believe you, in the words of my friend Ta11i, "Tell him to go bug off." You must find a doctor who believes your symptoms are real and not just depression or hormones. While those things do have an affect, CFS is not caused by depression or hormonal issues. Don't let them give you the run around. You deserve respect. I wish I had learned that sooner. I might have saved myself years of suffering. Much love.

First, I'm sorry this is happening.
Couple of thoughts.
1. Adrenal issues (called adrenal fatigue, some docs believe in it and some do not)
2. Anxiety (note I say this because I have GAD and this sounds like a minor panic attack - there is a mechanism where lactic acid builds up in your muscles, even in your core muscles, and makes you want to get moving to get rid of it.. when your body starts to use it up, it uses cortisol to do it.... once it is all gone you are exhausted but wired and tired.)
3. Blood glucose/glucose intolerance/hypoglycemia - your symptoms sound like when my sugar is very low and then I am driven to eat and I am running on sugar for a while.
For what it's worth, it really sounds like a cortisol/lactic acid imbalance.

Thank you all for your advice! Interesting explanations nina1959! I'll bring that up when I see my doctor. And the metaphor with the watch spring gets it to the point RichieD!
It's an appointment at the most specialized institute for cfs in Germany so fingers crossed that it'll be worth the journey of nearly 1000 km. I hope to get some information about their current research too to share it here!
Btw maybe you've seen the article in te guardian too?

I wanted to wish you well on your trip to the clinic in Berlin.
You have gotten good advice here. I too thought of adrenals
when you mentioned your symptoms. Adrenals are also related
to the thyroid. Many of our hormones can be off center and
cause all kinds of energy imbalances, mood disorders and sleep
problems. Hopefully, these things will be checked out for you.
Yes. It's good your'e going there and I hope they have the
kind of understanding of CFS to move you forward.

I have done the somewhat disgusting "spit test" that helps diagnose your adrenal function. I found out that my cortisol levels are low in the afternoon and the evening.

So - you would think I would sleep like a baby????

Nope.

This is my own theory.

In the evening, your adrenal glands feel like they have DO SOMETHING, so since they can't produce any more cortisol, they do what they CAN do, and start sending you some adrenaline. Gee! Thanks, Guys! Just what I need when I am trying to sleep!

Be careful though - even if you should be diagnosed correctly with low cortisol, a well-meaning doctor may ask you to try "adrenal support" supplements. Many of these substances will actually depress your cortisol levels even further, so no Holy Basil or ginseng etc....

I have had fairly good success with grapefruit seed and glycyrrhiza licorice. Both of these help to maintain cortisol levels.

I just recently started taking Royal Jelly, which helps build acetylcholine. I am now sleeping really well. YAY! AND - I have a bit more energy during the day.

I also find that restorative (no other style) yoga really really helps with the Tired and Wired. HATE that when it happens....

Hi!!

It sounds like a bit of panic to me. I have a generalized anxiety disorder since I was in my twenties! (many ages ago). I would have described the feeling afterwards just exactly as you did. Panic/anxiety attacks are strange things. They can cause total body discomfort because our stress level is so high during these attacks. Our blood pressure goes up, and we can feel disoriented and afraid.

When my Cortisol was tested, i showed normal levels in the a.m. and afternoon, but high at night. As you said, just what you need when you're trying to go to sleep. I just take a mild tranquilizer to help myself get through this. My body doesn't respond well to treatments in the form of chemicals/pills/supplements. It's very frustrating to me. I have adverse reactions to everything but Tylenol. I can't take anything for pain.....blah. This disease is horrific.

I did notice that you said you were going to a place where it is CFS specific! That's wonderful. I don't think they will have any trouble with you're struggling trying to describe how you feel. If they are used to seeing patient's with CFS/ME, I'm quite sure there is nothing they haven't heard.

I wish you the best!! Try not to be afraid of this new feeling. It may be something that simply goes away, like lots of our symptoms and the illness itself. Things come and go. Like I said, it's a horrific illness!!

Blessings!

document document document. my specialists have such thick files on me & i cut out articles and give them to them also. we all have different symptoms but its lumped under one big syndrome. our bodies dont work properly & can be very very debilitating for those who do believe us. i am in the health & fitness field, have been trying 20 years to figure this out and only hope one day to be cured of this .
but in the meantime, enjoy the good company of this wonderful support group! :o) cheers! :o)