Which CFS Symptom Do You Hate the Most?

[livingwithcfids]

Very interesting thread topic, Marg!

Although the fatigue and muscle pain suck, brain fog is the worst. The brain fog really frustrates me like nothing else. I get the urge to kick or punch something to let out my anger when I am under the "fog". Nobody seems to understand but when I try to explain to others I compare it to not getting any sleep and being "brain fried" the next day. My brain feels 5X slower.

But what is rather odd is that the fog comes and goes and is more intense and less intense at random days and times.

Does any one have a better simile or metaphor to describe the cognitive impairment we experience?

 

[Sallysblooms]

I have gotten rid of fog completey, fatigue is much better, CFS/ME is better, just POTS, STUPID POTS> but the most hated part of CFS for me was vertigo. It is horrid. Thankfully I have not had it in years and I hope and pray it is gone for good. I had LOW B12....

 

[Sing]

OI, specifically NMH is how I'd answer now. This is a more recent problem, just during the past two years since major surgery. I've gotten used to the others which I had for many more years, and still have.

Cognitive difficulties, slowness, memory impairment, trouble thinking on my feet, telling stories, tracking what is going on, blanking out--the cognitive impairment is probably the most dangerous and disabling issue, but right now, maybe because the NMH is the newest of my troubles, I am bothered by it the most.

 

[markmc20001]

For me it it the inability to really DO anything and follow through. I get fantastic world changing ideas sometimes, but can't make a phone call or pay my bills most days.

The inability to measure or test my symptoms for disability proof. All you can do is say you don't feel well, but look fine and so nobody believes me. impossible to prove anything to family, neighbors, dr's, SSDi. etc... Actually makes me sicker.

 

[aiden424]

My worst out of many symptoms is the OI or POTS. It"s the OI that seems to trigger many of my other symptoms.

 

[markmc20001]

The dizzyness/lightheadedness and not being able to see straight drives me nuts.

My newest symptom is jaw pain that makes it so my teeth don't line up. That is miserable.

 

[Andrew]

I was going to say OI and PEM. But those are actually worsening of symptoms. So I guess the worse is the fluish feeling.

 

[Marco]

For me knowing that no matter what I eat I'll end up feeling much worse.

I enjoy food and cooking but the IBS/headaches and whatever that results takes the shine off every meal.

 

[taniaaust1]

This is a very hard question for me to answer.. there are so many different very horrible things. Most of the symptoms I hate the most actually arent my most disabling ones.

- Pain would have to be my number 1 hated symptom.. any symptom which has severe pain. I cant stand constant severe pain, it really wears one down in all ways eg severe bone pain where my bones used to feel like they were being drilled within them. One just wants to die to excape that symptom.

2- .. severe vertigo of which has dropped one on the floor, room spinning fast and going to throw up due to that. (fortunately i only had that one once). (you just wish to pass out to gain some relief)

3- Insomina in which one is missing full night sleeps at times eg going 42 hrs at times, getting only 3-4 hrs on other nights etc so extremely tired but still cant sleep. Sends one half mad and makes ones brain badly functional

4 - Mind fog.. where one cant remember what basic objects look like or how to work them eg Im trapped in a room and dont know what a door is. I want toast but cant remember how its cooked or what a toaster looks like. I get into trouble with security at carpark as I destroyed a boom gate as I couldnt work out how to get my car out of the park..forgot ticket machine stuff. Forget what family members look like. Severe mind fog confusion where one cant function is horrid.
...

Things like the POTS collapses where I cant walk at all and also going blind and unconscious are nothing compared to how much I hate those those other four things I listed.

 

[hurtingallthetimet]

hello im new to board and tyring to figure all this out...saw your thread and needed to vent...i hate it all...i use to be thin now im fat because of medications and so much fatigue i cant exercise..

i hate going to the grocery store or shopping..use to enjoy both...but not the social anxiety and panic attacks are too much and though i am hurting and so tired i feel like falling over...i run like a crazy person to get everythign at once so i dont have to go back...i throw it on register belt and in car like im in a contest to win big prizes...whcih by time i get home i am so worn out....i have to take medications because i cant take and drive...i have family to help but i feel like such a burden i try to hang onto last few things i can do by myself..

i hate that i wake up exhausted and stiff in pain even if i do sleep a few hours {i have insomnia} i hate that even brshing my teeth or taking a bath is exhausting...

and i hate that no one sees how sick we are and expect us to act fine...at least thats how ive been treated...sorry so long been a hard day and needed to vent...

 

[Enid]

We have such a list here (and all too familiar) one hopes one day one bright spark will put together and SOLVE.

 

[meadowlark]

For me it's a dead heat between POTS (which has me almost entirely bedbound) and soaring blood pressure, which often goes north of 180/112 and stays there for days. The side effects are many and hideous, plus I feel like my heart is about to leap out of my chest.

But in all honesty, I've had a lot of ME/CFS phases: vertigo-nausea, migraine-fibro, PEM-fever, etc., and with each one I've found myself almost shouting "anything but this!" at the bedside wall.

 

[anniekim]

Used to be the OI. My experience is that's by far the worst of all the me/cfs symptoms. I had it for years, but none at all now.

Now days the PEM is my worst symptom. I'm pretty good doing nothing (which is major recovery for me), but the stress/exertion boundaries keep me very limited.

I was a cross country runner. Hiking (not running) one of my favorite trails is the goal.

HOpe you reach your goal one day. May I ask if you can ascribe the improvement in your OI to anything in particular, or was it just time?

I hate the PEM which means I can never leave the house and at it's worse rendered me bedridden for 16 months (am lucky, know people endure that for much longer). Also the chronic head pain I've had for 6 years, 24/7, like steel bands digging into my skull. Would love for the pressure in my head to go, ahhhhh, the relief if it would.

 

[Snow Leopard]

Brainfog.
I mean I don't enjoy the headache that I've had for over 10 years running, but it's not the pain that I find most disabling.

 

[Tristen]

HOpe you reach your goal one day. May I ask if you can ascribe the improvement in your OI to anything in particular, or was it just time?

I hate the PEM which means I can never leave the house and at it's worse rendered me bedridden for 16 months (am lucky, know people endure that for much longer). Also the chronic head pain I've had for 6 years, 24/7, like steel bands digging into my skull. Would love for the pressure in my head to go, ahhhhh, the relief if it would.

Thanks Anniekim, Yes it was mostly intensive antiviral tx that put an end to the OI.

We are really close, hang on just a little longer.

 

[taniaaust1]

A toss up between insomnia and muscle aches, both of which wax and wane. When I do sleep muscles feel better. Anyone else have trouble sleeping when the moon is full?

Yes even before I had insomina I'd have trouble with some full moons.. also feel kind of high at that time some months. I could tell it was a full moon at times even if I hadnt seen it, due to my silly reactions to it.

I went back throu all my high school diaries and all my boyfriend breakups which I listed in them, had happened at the time of full moons.

Seems im sensitive to basically everything.

 

[u&iraok]

Yes even before I had insomina I'd have trouble with some full moons.. also feel kind of high at that time some months. I could tell it was a full moon at times even if I hadnt seen it, due to my silly reactions to it.

I went back throu all my high school diaries and all my boyfriend breakups which I listed in them, had happened at the time of full moons.

Seems im sensitive to basically everything.

Me too, I can't sleep on a full moon and I feel kinda high during them sometimes. I'm a hypersensitive person as well.

As to which symptom I hate the most, that's difficult, I hate the OI, the brain problems and MCS but I guess it's the nervous system problems that I hate the most because that make me sensitive to noise and crowds and movement and stress which makes it difficult for me to be around people and be engaged when I just want to scream. For me, the fatigue seems a calm relief in comparison sometimes.

 

[shannah]

Me too, I can't sleep on a full moon and I feel kinda high during them sometimes. I'm a hypersensitive person as well.

Increased sleeping problems during a full moon is not something usually talked about in regards to ME/CFS so I'm glad to see it mentioned here as a problem by a few people. It's typically thought of as a 'Lyme' thing.

All of my symptoms are worse during a full moon, including sleep difficulties, and I should mention I was treated for Lyme/co-infections for 3 years by a LLMD with no overall improvement.

 

[Fifi]

Loss of cognitive abilities and lack of a decent nights sleep for one reason or another!

 

[No_more_pain]

For me, anymore, I think brain fog/concentration/memory difficulties probably hits me hardest.

Don't get me wrong... all the other physical symptoms are horrible, and if I dwell on any single on of them, I can (in the moment) feel THAT surely must be the worst (like for example how some joint/muscle pain can just eat at you, gnawing constantly like a chihuahua attached to your shin, no matter what you're doing).

But in the end, my mind is a retreat from all that ails me physically. And when that is compromised... I'm "up excrement creek without a means to propel myself." It ruins my ability to enjoy physically passive activities, like reading or watching television, it has decimated my attempts at writing (an interest of mine I always wanted to somehow turn professional) and it's probably the one symptom that really makes me feel disabled in every sense of the word. Mess with my body? Yeah, that's old news... mess with my brain? OH NO YOU DI'N'T! <head bob, finger wag>

I have my moments or periods of clarity, for sure... but they never seem to come at the right times.