Poll What's your worst symptom right now?

[Folk]

After years stuck with "Cronic Fatigue" name, most people (educated or uneducated) still think ME/CFS/SEID (that last one really didn't catch huh?) is just being tired all the time.
The thing is. Sometimes patients make me believe this is actually the "main" symptom for most of them. There's the spoon theory to "explain the illness", but spoons don't have brain fog or pain...:\
I see cartoons and funny jokes from patients in Facebook groups saying they're tired all the time.
That way is kind of easy to mislead the public and the doctors (even though the doctors shouldn't be that easy misleading).


I know that when the HUGE fatigue struck me like a train for the first time, and I couldn't even get up of bed for more than 1 hour I though "yes... that's the worst symptom" but brain fog came and it was side by side. Top 2, but that came with the fact that I was already used to feeling so much pain (it came 7 years before others symptoms).

So I would like to know from the patients. I won't differentiate FMS from ME/CFS cause, well, not even doctors and tests can, so let's blend it all and: What is your worst symptom right now?

 

[Folk]

Pain here. Specially allodynia, which is hell.

 

[Abrin]

If I had to choose only one I'd have to say: Light/Noise Sensitivities

A large portion of my fatigue/headaches comes from the fact that my eyes just can't deal with the light.

I find it very hard to get things anything done when I am pretty much forced to just lie down and close my eyes.

 

[weyland]

The most disabling for me is the OI. It prevents me from being active enough to even cause PEM.

 

[Who Me?]

@Abrin somewhere here there is a comment about light sensitivity being related to poor adrenal function and low cortisol. Delayed pupillary response I think.

I have crap adrenals which I'm working on. When I first started DHEA I was able to keep my blinds open all morning. It is definitely related.

I think it was in the thread about the conference in the UK w few months ago

 

[Snookum96]

For me right now it's OI, followed by sound sensitivity, followed by everything else. It all sucks. Sorry I'm in a pissy mood today.

Great poll idea btw!

 

[JennyJenny]

Fatigue and PEM. My limbs are like dead weight. There is no spring in my step/muscles. I lumber around with dull eyes and not able to smile as even my face is dead weight.

Every Action has an Equal and Opposite Reaction? Nope. Every Action has a completely Adverse and Overreaction by 100x.

 

[Tammy7]

There are two symptoms that come in as a tie for me that are my worst. OI and when my head feels like it has the flu and feels like it is burning up.

 

[weyland]

It might have been good to separate PEM and fatigue into two items as they are not the same thing. I suspect there would be more votes for PEM than fatigue.

 

[Cort]

After some reflection I have to say the most upsetting symptom is probably brain-fog - because the inability to communicate properly particularly verbally is heart-breaking - it really is. It's not as painful as the others but I think if it was taken care of I could handle the others much more easily.

PEM and fatigue are my most obvious symptoms. I am almost always overdoing it - it doesn't take much - and I almost always am experiencing pain....I would so love to be able to exercise again and have my body feel good.

Thanks for the poll!

 

[Tina]

PEM which brings on fatigue then brain fog and neurological pain.

 

[Cort]

PEM which brings on fatigue then brain fog and neurological pain.

Ultimately I think PEM says it all......

 

[HMBCheryl]

Brain fog. Difficulty with comprehension and retention. I can't seem to learn new things, my short term memory is impaired. I couldn't keep up with the Abundant Energy Summit, so I bought it to view at my own pace. I love to read, but even fiction is difficult. There is so much research I want to do but I am limited to about an hour a day in 15 minute increments. I wouldn't mind the physical symptoms so much if I could use my mind for more than meditation while resting.

 

[Abrin]

After some reflection I have to say the most upsetting symptom is probably brain-fog - because the inability to communicate properly particularly verbally is heart-breaking - it really is. It's not as painful as the others but I think if it was taken care of I could handle the others much more easily.

PEM and fatigue are my most obvious symptoms. I am almost always overdoing it - it doesn't take much - and I almost always am experiencing pain....I would so love to be able to exercise again and have my body feel good.

Thanks for the poll!

I take Modafinil for my brain-fog. It has literally changed my life. I am still exhausted and in pain but at least my brain now mostly works...well, until the medicine wears off again.

 

[Ughhh]

I voted for pain. Pain followed by temperature dysregulation and then severe fatigue.

 

[Ughhh]

Now that we are deep into summer I would say my worst symptom is a systemwide ill unwell feeling, the closest thing I can describe it as is feeling like I’m being poisoned by something toxic. ?‍? I thought about going to the hospital when I’m feeling it really badly I just hate the hospital and I don’t want to deal with them treating me like I’m crazy

 

[Ughhh]

Now that we are deep into summer I would say my worst symptom is a systemwide ill unwell feeling, the closest thing I can describe it as is feeling like I’m being poisoned by something toxic. ?‍? I thought about going to the hospital when I’m feeling it really badly I just hate the hospital and I don’t want to deal with them treating me like I’m crazy

I've since learned that there is possibly a name for what I'm feeling "the sickness response" that originates in the brain