The Chronic Fatigue Syndrome and Fibromyalgia Symptom Description Thread

[Judi]

I have some weird descriptions for some of my sympts!
- hulk arms (the muscles of my arms and shoulders feel painful, and huge & swollen - as if I look like the Hulk).
- deprivation ( I get this when coming out of a crash. It just feels like I'm missing a hormone or chemical in my body. Tho all my hormones test normal)
- bruised brain (feels like my brain has been shaken around inside my skull to the point of being 'bruised')
- ankle garters (feels like I'm wearing garters on my lower calves that are too tight & cutting off circulation)
- brain prickles (pin point prickly sensations in brain)
- liquid brain (like my brain is drowning in oil)
- buzzing (like my whole body is buzzing or vibrating)

I like "brain prickles" very good discription!

 

[Mwasi]

Thanks to all of you.
Really interesting to read all this.
I feel it's kind of therapeutic way to EXPRESS what we experience every day in our dear body. Hard for others (meaning people who do not have ME) to understand what we are describing/feeling.

 

[dee]

I feel dead and am waiting for a cemetery caretaker to take me to my grave. This has been for the past 15 years and I just keep getting worse, never better, no matter what I try. If the FDA and NIH aren't going to approve of and make affordable to us any medications that actually work, I for one would like them to just kill me. I have no quality of life and it appears that I never will.

 

[Cort]

I have some weird descriptions for some of my sympts!
- hulk arms (the muscles of my arms and shoulders feel painful, and huge & swollen - as if I look like the Hulk).
- deprivation ( I get this when coming out of a crash. It just feels like I'm missing a hormone or chemical in my body. Tho all my hormones test normal)
- bruised brain (feels like my brain has been shaken around inside my skull to the point of being 'bruised')
- ankle garters (feels like I'm wearing garters on my lower calves that are too tight & cutting off circulation)
- brain prickles (pin point prickly sensations in brain)
- liquid brain (like my brain is drowning in oil)
- buzzing (like my whole body is buzzing or vibrating)

I definitely get the "hulk arms" - they feel massive after exercise - quite contrary to how puny they are.

 

[Cort]

What a rich, rich assemblage of symptom descriptions - they are truly Shakespearean in their richness - I'm starting to collate them on Resource page here - http://www.cortjohnson.org/forums/resources/chronic-fatigue-syndrome-and-fibromyalgia-symptom-description-page.199/

 

[Joy S]

Sounds like you have allodynia. If you have a crawling sensation on the skin its called formication - https://en.wikipedia.org/wiki/Formication. It can also occur in your body. It's associated with nerve damage, all allodynia is as well - http://www.ehow.com/about_5563523_crawling-sensations-associated-nerve-damage.html. It can be caused by lots of things.

drives me crazy! Glad to know it actually has a name/description.....

 

[dee]

hi katvil, to feel dead would be to feel NOTHING. much better, huh? we're all in too much agony here! little longer then 15yrs. for me so now i pray for God to forgive me and TAKE me. M.E./CFS is TOO much to bear!
may God bless you!

 

[Cort]

Hi Cort and everyone, I 1st want to thank you Cort for reaching out to me. I want to pursue this further and share more with you but for now I just have a little bit of energy and I know that I am unable to shorten words into more of a poetic feel today. Another day but I want to share a bit.

I have FM, ME/CFS and Sjogren's. Sjogren's still allowed me (prior to getting hit with FM and then ME/CFS) to have some sort of life. That is a nasty autoimmune but the symptoms would ease up allowing me to have a life between flares.

Having FM and now ME/CFS has totally taken a very active lady
to her bed with the 4 walls around her day after day.
She sleeps at a 45 or 90 degree angle, night after night,
longing to lay down flat and stretch out.

I have a bathroom in my room and sometimes my muscles feel like lead and jelly all at the same time and many times have trouble walking to the bathroom on bad days which is often now. It isn't like when your muscles hurt after a good workout or a long walk which I loved doing. A good stretch, couple Advils and went dancing same night.

It feels like there are fibers inside the muscles that tingle painfully and my arms and legs feel like they have heavy weights on them and like those fibers are on fire and have bad blood flowing through my muscles. I feel poisoned. I feel like an alien infection has taken over my body that Drs. haven't identified. Those same fibers I feel in my muscles feel as though little bugs are taking little tiny bites. Those bites reach into the nerves and the pain combined makes me think these little bugs can live off my muscles and nerves for a lifetime as they get nutrition and deplete mine and now have me bed bound again about 80%. Along with those little bugs are parasites that feel like they are feeding off my body just under the skin. I constantly have to take the sheet off my legs and then put it back on as I get chills when it's 90 degrees outside. My body's thermostat is totally broken.

For now I will stop because I'm unable to verbalize the rest of what I wish to say. I just want to say one more thing. I had a little remission for about 6-9 months where I could cook 2-3 x's a week and even go out to special family functions. I was able to go camping just before I crashed again. I went from again 80% bed bound to 60 % and back to 80% again. My D3 went up to 78 after fighting it for 2 years. I backed down my dosage a bit and in 5 1/2 months it went down to 54. Those same parasites and bugs are sucking MY nutrition. I have been low on magnesium since 2011 and finally over 1 1/2 years ago I was put on magnesium daily to stay alive. Just had that checked and Dr. each time asks me if I am taking my magnesium because the # won't get up to normal. YES I take it daily, never miss. Well another time sleep, IBS, fibro fog and more that I can likely make a little more poetic maybe (on a good day).

Parasites and bugs and poisoned blood, sounds crazy ha? Well actually my Dr. just ordered a parasite stool test and when that word came up I suddenly related it to how it feels inside my muscles and the nerves. Hugs (I did my best for now)

You did great! Good luck with the doctor and getting those magnesium levels up!

 

[Steve]

hi katvil, to feel dead would be to feel NOTHING. much better, huh? we're all in too much agony here! little longer then 15yrs. for me so now i pray for God to forgive me and TAKE me. M.E./CFS is TOO much to bear!
may God bless you!

Dee,

We all know, how you feel. I live for the rare moment during the day when I enjoy something despite the pain...aa breeze, ice cream, wine...the only way you can do it. I always visualize my tombstone ( unless I'm cremated)...no colonoscopy, no bike helmet, no pain.

GLTA.

 

[TJA]

All of this sounds familiar. I often feel like I ran a marathon then went on a 3 day no sleep party bender ... when really all I did was take a walk and clean up the house a little.

I also often say I feel like I got hit by a truck and I'm trying to peel myself off the ground (or out of bed). Migraines, tension headaches, muscle aches, "soft tissue" aches, muscle tightness and rawness, aches deep inside my hips that cannot be stretched are all common.

I've developed a strong sensory integration issue - the feeling of hair touching my face or a tag from clothing rubbing my skin can drive me crazy. Sometimes my skin crawls for no reason, it feels like there are ants all over my body and there's nothing there.

Brain fog that causes me to forget the names of every day items, people's names, when something happened.

Getting up in the morning is like crawling out of quicksand or thick, sticky mud. Even after 10 hours in bed, it feels like it's been 30 minutes of sleep. Random skin rashes, seasonal allergies, anxiety attacks are all common now.

This illness affects every part of my body and my mind, and managing it is a full time job.

 

[Snookum96]

I forgot about the ever wonderful "I think somebody drugged my food. Like yesterday. And the day before that. And every day.

 

[JennyJenny]

Powerful words, but the image associated with your name/membership is what i connected with, feel like. Where did you find that? If you don't mind me asking.

I think about.com Adrienne Dellwo had it posted but I can't remember. It might be on her facebook page.

Gross, isn't it. And it describes Fibro pain very well and I think makes the point to those who do not understand. I use it for a Twitter page when I tweet out information on Fibro and ME/CFS to various news organizations, medical journals, government agencies, etc.

Illustrations are very powerful.

 

[Katie]

Fatigue like a narcoleptic
Day-time exhaustion so bad I feel like a toddler when they fight going to bed-so tired I want to cry, and I do
Can't feel my legs when driving-have to touch them to make sure they're still attached
My brain feels like I've had a stroke-right side of my body is weak and I limp, I forget words, can't remember how to spell often simple words.
Feels like I have tourette's syndrome-my arms have a mind of their own-twitching and jerking-how much sugar have I spilled trying to get it in my coffee? Followed by uncontrolled swearing (ok I'm exaggerating).
Fierce headaches-almost blinding
Difficulty breathing deep-feels like trying to breathe under-water
Wake in the morning feeling like I have the hang-over of all time-maybe I should take up drinking!
Either too hot and sweaty or too cold but still sweaty, get chilled easily and it hurts all over
Need dark glasses out doors-photo sensitivity
Small sounds irritate the heck out of me-super sensitive to touch, noise, light,
Searing pain in all joints but not always at the same time but when it is-well it's hell
That's it! I (we) live in hell on earth

 

[Lissa]

I definitely get the "hulk arms" - they feel massive after exercise - quite contrary to how puny they are.

Ditto here.... "Exercise" being carrying a laundry basket or taking out the trash... Oh my!! Such an odd sensation when it doesn't even seem possible --- a majority of my time is spent resting! So weird!!!!

 

[Forebearance]

For years I described how my ME/CFS felt as like having both altitude sickness and mono at the same time.
(I have experienced altitude sickness, near the top of Long's Peak in CO.)

But another good description is that it feels like being partially paralyzed. That is a better description than "fatigue". Because it takes a effort of will every time I want to move a muscle. That description was originally used by Erik Johnson. And I heartily agree with it.

Also, @Merry, maybe you would be interested to know that many people experience that "knitting needle in the heart" type of pain when they are around a specific mold toxin. I don't know what the name of the toxic mold is that produces it, for sure, so those of us who can notice it call it "ick toxin". It's one of the worst types of mold toxin.

 

[Merry]

Also, @Merry, maybe you would be interested to know that many people experience that "knitting needle in the heart" type of pain when they are around a specific mold toxin.

Interesting. Thanks for the information. I hate to think other people feel that "knitting needle in the heart" pain.

 

[soti]

"pain"... You know that sound that you can make to pretend you're making a crowd sound: "the crowd goes wild!" AHHHHHHHHHH. That's what it's like. All the parts of your body are a crowd that's yelling at you.

"sensitivity to light and sound" ... imagine you've left the house without any skull or scalp protecting your brain from the outside world so that every passing mote of dust hurts it.

"brain fog"... imagine your brain is trying to grasp a thought like a hand grasps an object. Now imagine you have a horrible cramp in that hand and you can't put your fingers and thumb together at all.

Now, just for fun, try to hold a conversation with someone.

And when I sometimes look healthy and functional... it's like Wile E. Coyote running out over the cliff. No matter what you do, gravity always wins.

 

[Cort]

"pain"... You know that sound that you can make to pretend you're making a crowd sound: "the crowd goes wild!" AHHHHHHHHHH. That's what it's like. All the parts of your body are a crowd that's yelling at you.

"sensitivity to light and sound" ... imagine you've left the house without any skull or scalp protecting your brain from the outside world so that every passing mote of dust hurts it.

"brain fog"... imagine your brain is trying to grasp a thought like a hand grasps an object. Now imagine you have a horrible cramp in that hand and you can't put your fingers and thumb together at all.

Now, just for fun, try to hold a conversation with someone.

And when I sometimes look healthy and functional... it's like Wile E. Coyote running out over the cliff. No matter what you do, gravity always wins.

I like that - try to imagine a holding a conversation with someone when all that is going on - exactly!

 

[Cort]

Interesting. Thanks for the information. I hate to think other people feel that "knitting needle in the heart" pain.

I'm hoping to avoid that one

 

[Cort]

Like I said - not for the faint of heart!

Fatigue like a narcoleptic
Day-time exhaustion so bad I feel like a toddler when they fight going to bed-so tired I want to cry, and I do
Can't feel my legs when driving-have to touch them to make sure they're still attached
My brain feels like I've had a stroke-right side of my body is weak and I limp, I forget words, can't remember how to spell often simple words.
Feels like I have tourette's syndrome-my arms have a mind of their own-twitching and jerking-how much sugar have I spilled trying to get it in my coffee? Followed by uncontrolled swearing (ok I'm exaggerating).
Fierce headaches-almost blinding
Difficulty breathing deep-feels like trying to breathe under-water
Wake in the morning feeling like I have the hang-over of all time-maybe I should take up drinking!
Either too hot and sweaty or too cold but still sweaty, get chilled easily and it hurts all over
Need dark glasses out doors-photo sensitivity
Small sounds irritate the heck out of me-super sensitive to touch, noise, light,
Searing pain in all joints but not always at the same time but when it is-well it's hell
That's it! I (we) live in hell on earth