Mods: I wasn’t sure where this belongs. Please move it if my coin tossing came up with the wrong forum.
I want to say upfront this is not a whine or cry for sympathy. I don’t have energy for that kinda stuff when it comes to my health.
I’m looking for new input/suggestions for things to try or additional information I may have missed, etc.
For those of you not familiar with CFS, CFIDS or M.E. (USA is still the only country that uses the “old” name for it. Very controversial since the name Chronic Fatigue Syndrome (CFS) and * Chronic Fatigue and Immune Deficiency Syndrome (CFIDS)* addresses one part of the condition, but discounts the rest of it resulting in a LOT of misunderstandingj). Here are a couple links that will provide more information if you’re interested in learning more about it.
Chronic Fatigue Syndrome /Myalgic encephalomyelitis
Symptoms, etc.
A brief overview of this virus:
[ul]
Fatigue
[li]Severe fatigue which has persisted or recurred during 6 or more consecutive months, with other known medical conditions excluded not be improved by bed rest.[/li][li]Profound physical and mental exhaustion out of proportion to effort which may be accompanied by pallor/paleness[/li]Neurological
[li]Substantial impairment in short term memory[/li][li]concentration and confusion [/li][li]difficulty with word finding and calculation difficulties[/li][li]spatial disorientation[/li][li]light-headedness - feeling “like I’m in a fog”[/li][li]dizziness, balance problems [/li][li]headaches of a new type, pattern or severity [/li][li]sleep disturbance – sleep a lot or insomnia…none of it is restorative.[/li][li]fainting [/li]Muscular
[li]muscular weakness [/li][li]painful muscles [/li][li]joint pain without swelling [/li]Flu-like Symptoms
[li]sore throat[/li][li]swollen lymph nodes [/li][li]nights sweats [/li][li]ow grade fever [/li]Gastrointestinal / Urinary / Sexual
[li]nausea [/li]Emotional
[li]Irritability [/li][li]Depression [/li][li]Emotional lability (mood swings) [/li][li]Anxiety[/li]Other Symptoms
[li]shortness of breath [/li][li]abnormal body temperature [/li][li]dysfunction (feeling cold or too warm) [/ul] [/li]
Yeah, I know that’s not very brief, but if you look at any of the complete lists, you’ll see that’s brief. I only included my major symptoms.
A bit of background info:
I woke up one morning abb. 5 am to go to work on February 6, 1996, after having the flu for a week or so, but found I was literally to weak to get up. I couldn’t get out of my bed… no matter how hard I tried.
It took all the energy I could muster to reach over to the bedside table to the phone and dial work and tell them I wouldn’t be in.
I am officially disabled. Social security said so and if they said so, you know it must be true. :rolleyes: I swear you have to be a healthy person to go through that application and appeal(s) process.
I don’t know that I can describe the feeling so that the average person would understand… I know I NEVER would have understood until I was living it, but I’ll try to give you a description so that maybe someone reading this who has a misperception about this illness, maybe you’ll be able to understand it better.
A good day now: Previously, I would have thought I was seriously ill…perhaps should be in the hospital because surely something was seriously life threatening to be so tired and weak.
A bad day now: I can sleep for 2 or 3 days straight only waking (kinda) to go to the bathroom, or maybe eat something that Rico insists I try to eat. Before we were married, I wouldn’t even try to eat when I was on my own.
The rest of the time: Somewhere in between. I might be able to do a little bit of something around the house and then rest. And I do mean a little bit… not more then 10-15 min. of something light. But the heavy house cleaning like vacuuming, scrubbing the shower, dishes, floors … my Wonderful husband (he’s doing the dishes right now) has to do.
Stress is very bad! I haven’t been able to regain any ground since our Shae was terminally ill and I wore myself out.
So, anyone have anything they’d like to share (constructive)? I’ve heard from plenty of people who say it’s all in my head and if I wasn’t so lazy I’d be fine. Please don’t go there.
Thanks