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My Top Ten Chronic Fatigue Syndrome Warning Signs of Impending Crash

By Jody Smith HERWriter
 
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In the world of Chronic Fatigue Syndrome, there are crashes and there are crashes. Some lift within an hour. Some linger or deepen for days, weeks, months. Years.

No telling in the beginning whether it will be hard or mild, short or long. So each downturn needs to be treated with care, like the potential plague it is.

I'll try to describe my experience with my own personal coven of Chronic Fatigue Syndrome (CFS) symptoms when they begin to swarm.

1. Brain fog

Though "brain fog" is the term usually employed for this, really, "fog" is not an accurate description. That sounds ... quiet ... restful ... or at least blank.

What I get isn't foggy. It's neither quiet nor restful. And it certainly isn't blank. It's a kaleidoscope of images and thought fragments jitterbugging and flickering through my head.

Can't finish the thought I started. Can't remember the beginning of the thought I just started ...

2. Vertigo

Not just dizziness, I've discovered. Vertigo is a hallucination of the inner ear. The body's messaging systems are confused.

I've tasted many flavors of vertigo. When the room starts lurching, that's vertigo. When I feel like my head's going to roll off, that's vertigo too. When I can't tell if I'm going to bump into the wall, and have to plant my feet to keep from swaying, I am havin' some vertigo.

3. Vibrating

"Paresthesia" is the fancy name for the buzzing, vibrating, numbness, tingling, inner tremor, and other bizarre physical sensations. Mostly it's in my arms, hands, face and head. When it's very bad it spreads to my legs and feet.

4. Breathing problems

I'll find myself panting and gasping for air. More delicate, but no less distressing, is the silent whistle, air blowing out from between "o" -shaped lips. Or then there's the one my husband says sounds like a sigh. But it's not a sigh. It is a frequent, extended expulsion of air from my lungs, trying, I guess, to get more carbon dioxide out and make room for more oxygen to get in.

5. Orthostatic intolerance

That Gotta Fall Down Right NOW feeling.

Add a Comment10 Comments

Chrissie

Hi such a relief to see your feelings here. I can certainly empathise with you.
I have been dignosed with both PBC and Sjorgens and both have symptoms of chronic fatigue. All my Doctors also question whether I also have CFS.

What I find most frustrating is that there are no precursors to the 'Crash'. It just happens without any reason. I dont seem to have any days with 'energy' any more.

I dont think this is connected with Potts for me. My sister has Potts and it is connected with low blood pressure however, I have high blood pressure

June 7, 2010 - 8:58am
Jody Smith HERWriter (reply to Chrissie)

When I have had days of no energy, especially if it is for a prolonged period, I start spending time in bed, reading if I'm up to it or closing eyes, maybe sleeping. When I get too restless to just stay in bed, I will be up and around but every hour or two, go back to my bed again for twenty min. or so. This helps the body regenerate, working with our ultradian cycle.

Even after I started feeling less burntout, I try to take breaks, resting, reading, knitting, sleeping ... these breaks help regeneration and healing continue.

I sympathize with the condition you find yourself in. It is a terribly hard thing to live with. I am hoping you will experience some healing in your future.

Thanks for writing.

June 7, 2010 - 9:28am
Chrissie (reply to Jody Smith)

Thanks Jody

I do rest as I have no energy to do anything else but I dont sleep and also have sleep problems at night. I try to do puzzles or something to try to focus my muddled brain.
I am interested in your comment about healing.

June 7, 2010 - 11:50am
Jody Smith HERWriter (reply to Chrissie)

Chrissie,

You are the best judge, but sometimes trying to focus the muddled brain just makes it more worn out. I had to quit reading and crossword puzzles for a year, because it was too draining. I started knitting which didn't seem to be so draining, and gave me something to do. It was soothing.

I used to use Valerian, a natural sleep aid, and melatonin and Rescue Remedy are other natural options if you haven't tried them.

I was a vegetable at one time. Could not grasp conversation and could hardly speak. Full of vertigo and buzzing and vibrating. Eyes didn't work right. Gasped and panted for air and would get worn out trying to walk the couple of rooms from bedroom to kitchen.

Could not be out of bed for more than 20 min. at a time.

But I am healing. I can't offer you any guarantees that you will heal. But I can tell you that it is possible to come back from what seems an impossible situation. I don't know how much of what I lost will come back but it is already more than I hoped for ... and I am not done yet. Hope is hard, for fear of being disappointed yet again. But hope can also keep you from going under.

I hope that things will turn around for you.

June 7, 2010 - 2:46pm
EmpowHER Guest
Anonymous

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May 30, 2010 - 6:03pm
Jody Smith HERWriter

Hi there.

POTS and CFS seem to be inextricably intertwined. I have not yet come across someone with CFS that doesn't have at least some POTS symptoms. Some of them are relatively mild -- mine for instance don't get in the way nearly as much as they used to.

And then others have POTS so severe that they can hardly lift their heads from their beds. I used to have POTS symptoms almost that extreme for many months at a time. I am one of the lucky ones, I have been improving considerably over the last few years.

Thanks for bringing this up.

March 12, 2010 - 11:32am
EmpowHER Guest
Anonymous

Have you looked into POTS Syndrome? POTS stands for postural orthostatic tachycardia Syndrome. It is believed that most people who have CFS in fact also have POTS and visa versa. The symptoms are almost identical. Symptoms of POTS include: unremitting fatigue (often brought on after a virus, trauma, stressful event, pregnancy or puberty), racing heart, orthostatic intolerance, shortness of breath, dizziness, headache, the feeling of passing out when you stand, exercise intolerance, cold feet and hands, temperature regulation issues, and many more strange symptoms. To learn more about this syndrome you can contact me any time at JSRHUM@comcast.net
Any one who suspects they have this should see an electrophysiologist or another doctor who specializes in autonomic dysfunctions.It is important to rule out Mitral valve prolapse, so a ultra sound of the heart should be ordered. A tilt table test or orthostatic vitals can determine if you have this syndrome or not.

March 11, 2010 - 6:08am
Jody Smith HERWriter

Thanks for writing, Zarla, and Cecelia.

Zarla, you know, sometimes when I'm improving again, I do get really hungry. Like my body has some catching up to do.

And I empathize with the experience of being knocked down for a week -- or more -- after some small exertion like a little walk. That has happened to all of us ... too many times.

We'll continue to hope to bounce back up and stay up.

February 25, 2010 - 10:10pm
EmpowHER Guest
Anonymous

Good job! Thank you, Jody, as always,

Cecelia

February 25, 2010 - 6:16pm
EmpowHER Guest
Anonymous

You have done a good thing, putting into plain English some of the more debilitating stuff that we can go through without anyone ever knowing. In addition to your little gems, I also get muscle spasms, feel extremely weak, have tremors and excruciatingly painful arms!
The talking gibberish is one of the most entertaining ones for those in the know-my friend usually just tells me to shut up and go lie down!
When I'm on the way back up, I get RAVENOUSLY HUNGRY - do you? Or, maybe that just me!!!

Hoping you are not crashing at the moment, oh, and I like to call them 'Crunches'! I think it better describes the abrupt end it brings to your day!!!

20 minute walk lead to a 'crunch' last week-still coming back from that one!

Thankyou again Jody, keep up the blogging.
Zarla

February 23, 2010 - 3:13pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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