The Chronic Fatigue Syndrome and Fibromyalgia Symptom Description Thread

[Cort]

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!

I hope you can hang on there Dee and find some relief - you never know...

 

[VJ Knutson]

The major feeling is that someone beat the shit out of me when I was sleeping.
But there are a thousand other descriptions. My head & legs feel like heavy dead weights, hard to drag along. My muscles ache & throb, except for my hands and knees, which have sharp, ice pick-like pain. My brain feels like it's on ice - slow and sluggish. I run out of energy very quickly, like a sloth, but the pain increases when the energy is gone. My chest feels like there's an elephant restingon it, like the comercials for COPD. My stomach is so sensitive, most anything can leave me with intense cramping & diahrea. If I stand too long, I get dizzy, lightheaded, start losing my hearing, and my vision goes black.
I often say I need a full-body transplant. But this wouldn't help, because my brain is also messed up.

Ha ha, Pam. I told my husband he needs to trade me in. His response: "No offense, but have you seen yourself - no trade in value there at present, I'm afraid."

 

[VJ Knutson]

I once described the pain as similar to a toothache - there is some release with pressure, but generally it is an all over throb. Symptoms come and go but range from flu-like malaise to muscle cramping or weakness (definitely not trustworthy enough to walk without supports), difficult breathing, sensitivity to foods and stimulus, social exhaustion, mental blowouts, etc. Reading, watching tv, or even going out of the house are all a bit much at the moment, however; I have found I can write - so I am trying to capture the experience through poetry.

See "Chronically Creative" for poems on living with ME/CFS/Fibromyalgia. https://vjearle.wordpress.com/chronically-creative-living-with-chronic-illness/

(If you are interested, of course.)

 

[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.

By the way, I have seen it used in other forums and places and such as a person's thumbnail or signature and although the top got cut off on mine if you click on mine and do a copy and download you can probably get it on your computer. I do see it around so I don't think there are copyright issues.

I forget what it says at the top but if you copy and download it may show up but it isn't necessary. If you want PM me your e-mail and I will send it in an attachment and it will have what it says across the top.

 

[Wendy Hart]

You nailed it with the "muscles are petrified wood and my tendons are like old rotting rubber bands."

 

[VJ Knutson]

Not sure if this the correct forum thread to post in, but I am experiencing a new symptom and wonder if anyone has any insight.
Yesterday, while entertaining company, I was hit with a sudden need to lie down (not a new experience), and then when I did move to a lounge chair - we were outside - I had the sensation of everything around me moving as if I was in the center of an earthquake. Even laying down the sensation persisted. I guess it is severe vertigo. When I was still trying to work, I would get mild sensations of the floor rocking, but not to this extent. It was so bad I could not stand up or move without assistance. It continues today, although I am pushing through it to get to the bathroom, etc with the use of a walker. Has anyone else had this experience - can shed some light on what might be happening?

 

[Tami]

A couple I forgot: The only way I can explain this is; it feels like I'm breathing backwards.
Often it feels as if there is something in the center of me, pulling all muscles toward it. I can't replicate it by trying and it normally happens as I'm falling asleep. When I notice it, I can consciously release muscles--when I relax again, all muscles draw in again.

 

[Tami]

Cort,
This is a great respite for my wife, who is wtf tired of hearing my symptoms, especially as they have worsened for the last few years. They're similar to others' descriptions but I have given some of them my own names.

Generally, I feel as if I have been thrown off the Empire State Building with resulting crushed bones and then had my entire body roasted by a blowtorch. Wait a minute and after that fall, am instead submerged in subarctic water, with tingling, " funny bone nerve pain" but everywhere, even hands.

There's Superman syndrome, where my shins and calves are being squeezed and crushed like he's trying to make carbon into a diamond, perhaps the worst pain I've experienced in my life, 11/10.

There is a decade old deep bone pain on my lower hip, not pecerceivable as anything by MRI, that radiates to my back and groin as a wholly debilitating awfulness.

Of course, I have the requisite neuro feet, crushing and burning pain in the lower feet. Sometimes I have muscle cramps and spasms in my calves that are so pronounced you can see them jumping under the skin like worms, wowing the inept ER doc who prescribed a week of quinine for an exotic type of spasms I knew they weren't and forty bucks down the drain, with an incredulous pharmacist who called me in to discuss the prescription.

I have a deep tendon pain in my upper back that immobilizes my left arm, as well as the common misnMed tender points, there's nothing tender about them in throat and neck tendons, sometimes up to my scalp in back.

Occasionally my legs feel like lead and, a new CFS- like symptom is terrible burning in my legs after exercising, no matter if the exercise was only using my arms.

I also have developed fatigue that wS not pRt of my illness for the lat 25 years. The overlap between FM and CFS symptoms experienced by a sufferer is roughly 50%, odd for me since pain, insomnia, and spasms were major symptoms.

I also developed severe tinnitus 24/7 three years ago as my illness started to take a turn for the worse. I don't know if writing this is cathartic or reminds me, daily anyway, actually, of the 150 phenobarbital I've kept for 25 years, acquired in a lucky fluke when accidentally being discarded by a fallout shelter. They're my escape hatch.

Like everyone, I have dozens more symptoms that come and go... costochondritis allodynia...etc., etc. These are invisible illnesses that make being alive challenging.

Can relate to so many of your symptoms. Thanks.

 

[Tami]

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.

Thanks for sharing...it is so disheartening; hard to live without hope of feeling better. I hope, as I read here somewhere, that you can find some happy moments throughout your day, despite not having any hope of regaining your old life. I do better with this on some days, than others.

 

[Tami]

I have said this A LOT...to my daughter, getting out of bed seems like an EPIC task...I am exhausted, just LIFTING my head from the pillow...I drink WAY too much coffee and it just BARELY makes me awake enough to get in the shower...I look like hell when I arrive at work and everyone asks if I am "doing ok", since I occasionally have GOOD DAYS, I think that THEY THINK I am Bi-polar (since I look totally different, i.e. hair and make up are done...face isnt droopy). Does anyone experience GOOD DAYS that seem a world apart from your bad ones?

Yes, compared to bad days, I do have better days that seem a world apart.

 

[Tami]

I like "brain prickles" very good discription!

Thanks for describing many of my symptoms so well.

 

[Tami]

I like "brain prickles" very good discription!

Thanks for your good description of so many of my symptoms. I often remind myself, my shoulders really aren't as large as a football players...though they sure feel like it.

 

[Tami]

Some days I think; "How can I feel like this and still be alive?
I also hope you can find some relief.

I hope you can hang on there Dee and find some relief - you never know...

 

[Tami]

Ha ha, Pam. I told my husband he needs to trade me in. His response: "No offense, but have you seen yourself - no trade in value there at present, I'm afraid."

Smiling...so thankful to be able to laugh at ourselves sometimes. Thanks for sharing; my husband will get a laugh out of this--he needs laughs as much as I do.

 

[fmmama]

Three descriptions: 1) Migraine of the body
2) Acid poured into entire bloodstream and circulating almost everwhere
3) A feeling of total toxicity.


I have fibromyalgia and chronic fatigue.

 

[Tammy7]

Wow.............some really good descriptions!........don't think I have anything to add but it got me to thinking........... I have such a hard time describing symptoms to my Dr........not that it would do any good......because I don't think she takes very good notes.......but I'm going to use a lot of the descriptions from this thread that I really feel apply to me....write them all down and give a copy to my Dr. for my file. At least I will no for sure that there is something of substance in my file that really gets across how I feel..........................not the standard notes that Dr's hurridly scribble down.

 

[fmmama]

It helps to add my symptoms to this list.

One more I told my doctor and he winced as I said it:

My body burns all over, starting at the top of my spine between my shoulders, it goes into my face, scalp, ears, neck , arms, then goes to every other place. I flush on my neck, face and chest. It's very scary. It feels like I am being dipped in electronic fire.

My doctor then said, okay, okay, I understand, you don't have to describe it more. !!!

He does care about me, and he is sympathetic. That was why he said that in this case.

 

[Tammy7]

I walk like Frankenstein's monster

Me too! Especially in the mornings.........then later it's the penguin walk......

 

[Tammy7]

Does anyone experience GOOD DAYS that seem a world apart from your bad ones?

Most definitely........and it blows me away.............I can feel like death warmed over one day and I think well........this is it.......your going down......and then the next day have an extra special day and think to myself.............this isn't too bad.....I could live like this the rest of my life.

 

[Tammy7]

Not sure if this the correct forum thread to post in, but I am experiencing a new symptom and wonder if anyone has any insight.
Yesterday, while entertaining company, I was hit with a sudden need to lie down (not a new experience), and then when I did move to a lounge chair - we were outside - I had the sensation of everything around me moving as if I was in the center of an earthquake. Even laying down the sensation persisted. I guess it is severe vertigo. When I was still trying to work, I would get mild sensations of the floor rocking, but not to this extent. It was so bad I could not stand up or move without assistance. It continues today, although I am pushing through it to get to the bathroom, etc with the use of a walker. Has anyone else had this experience - can shed some light on what might be happening?

Yes............I have had the sensation of being in an earthquake. I posted in another thread about my vacation to Hawaii and feeling like there were tremors...........but no one else was feeling it. The sensation got so bad that it felt like the floor was coming up to my waist. For me I think it was the result of pushing way too far...........a vacation to Hawaii was way too much for me......and the only reason I went is because it was a surprise and everything was already paid for. Fortunately I have not had those sensations since.