The Chronic Fatigue Syndrome and Fibromyalgia Symptom Description Thread

[Lulutwo]

I didn't know what true exhaustion was until acquiring this disorder 14 years ago. It feels like falling down a deep, dark hole and trying to climb up that hole, only to slip down again and again. I've forgotten how it feels to get a good night's sleep. I wake up feeling tired, so tired.

I've developed migraines that feel like someone is hitting my head with a hammer...and there's the upset stomach that accompanies the migraine. My muscles are sore and I toss and turn all night long...I wake up tangled up in blankets. I am trying to understand why there is less understanding about CFS/ME among doctors in general, and no solid treatment plan.

On top of everything else, I also experience excruciating lower back pain that radiates down one leg. Pain meds don't get rid of all the pain, and if you ask for help...well, we are suffering because of those individuals who abused pain meds to get high.

I just want relief...is that too much to ask?

 

[katvil]

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.

 

[Sarah R.]

A cracked antique, yes, I relate to that. I can't keep enough blood in my head to stand in line at the grocery store. I become woozy and have to bend at the waist to let the blood flow back into my brain. I usually pretend I'm fiddling with my shoe, so people won't wonder what I'm doing. At home if I'm out of bed long, even sitting up, my mid-back aches deeply enough to send me back to bed.

My memory is on par with my 88-year-old mother's, and she is 25 years my senior. I speak in 5-word staccato because I'm trying to get my thought out before I forget what I'm saying. And five words is about all my brain can spit out at any given time. Usually I can't retrieve that sixth word, so there's a long pause while my mind spins in a seeming void. If I'm lucky, I find the word or I'm able to describe it in such a way that my listener can guess what I'm trying to say.

From time to time it seems that all of my mucous membranes ulcerate--from my mouth to the other end of me. This is a searing, broadcasting pain. Focus on much else during those times is practically impossible.

This is just the tip of the iceberg, but... I'm getting tired now.

 

[Cort]

I've finally figured out a way to describe one of my most difficult to describe symptoms - it's a weird painful flushing feeling more so in my head and upper body that I get when I feel fluey.

It's actually one of my least favorite symptoms. It's not as painful as the muscles feeling like they're burning but it's more off-putting.

 

[Cort]

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.

"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"

whoa

 

[Cindy T.]

My fibro pain centers on my legs. I think "can't I just unzip this layer of pain and step out of it like I would a pair of pants?". The fatigue is the worst of my symptoms and the most perplexing. Going to the bathroom exhausts me. I live close to the beach but hate to go down to the shore because the wind is painful on my skin. I can't tolerate sound or light. I am afraid to leave the house because I'm afraid it will be so difficult to get back. I drink way too much because the alcohol numbs the nerves and reduces the pain. It slows the rest of the world down so I can tolerate it.

 

[dee]

Those suffering with M.E./CFS are NOT the faint of heart! we are so strong we don't even know how we're taking all this! my head always feels like its going to EXPLODE and i feel as though i'm not here with people on earth and sometimes i feel like i'm LEAVING brainwise so i grab onto something to hold me here. i hit my head! its AWFUL!!! i left earth a LONG time ago! the pain and AGONY is too much as the headaches are UNBEARABLE!
i've learned to say with this illness: Drug Thyself!

Waking up, THATS too much exercise! I'm EXHAUSTED!

 

[KweenPita]

Some days are easy and muscles just choose to spasm but now my smooth muscles, like my bladder and stomach join in, oh and my throat may choose to right as I swallow. It's really entertaining when my veins pop up to the top of my skin (I am a chubby girl) and my whole body goes goes goose pimples at 98 degrees out. Again a muscle spasm day.

Now if it's a Princess and the Pea Day. It is downright $#!try. My husband says voice is below whisper but sounds fine to me. Everything is magnified by the multitudes. Touch hurts. Showers hurts. Wrinkles hurt. Need silky fabrics. Soft seams. Soft voices. Bland foods. Smells causes headaches. Lights causes headaches.

Then there's the fire ant days, usually happens when I have an infection. To make things worse infections just won't go away. I am not a whiner, but I hate freakin fire ant days.

 

[TinaTwo]

Cort, I can relate to your weird painful flushing feeling in your head. When I get that, it feels like every nerve or cell in my head is activated and not in a good way, and sometimes it does spread to other parts of my body. Kind of creepy/crawly and a very strained feeling. Like you said, not exceptionally painful, but entirely uncomfortable and debilitating. I kind of attribute those feelings to when my immune system has gone into total overload from multiple exposures (pollen, chemicals, activity, viral, etc), but who knows if that's accurate. Sometimes I do wonder if mast cells are involved.

When I feel I'm in a "viral" flare-up, I also get a feeling in my entire nasal/throat cavity like someone is blowing either very hot or very cold air throughout the whole area. Also most unpleasant and debilitating though not a typical pain sensation.

My all-over body aches are hard to characterize - in the early stage of my illness (20 years ago) they felt muscular, but now feel more like deep tissue aches, almost to the bone. Luckily, my pain is not as severe as that described by many others (and for that I am thankful), but my entire post-exertion symptom complex is most debilitating. I could go on and on about that.

I would not wish this illness on my worst enemy (if I had one), but sometimes I wish the naysayers could live in our bodies for a few days (and maybe, for some particularly disdainful and unbelieving ones, a few weeks ).

 

[Donna C]

Off topic but the type on this thread is so small it's almost unreadable. Been on the computer for a few hours and this is the only site that has such tiny type.

 

[phoebe111]

My calves and legs and the TOP of my feet have a deep ache that feel like blood is pooled and not moving from the knee down. I try to compress it, I sit on my feet, I hammer my calves, but the ache just goes o.
A soft touch or the feel of air moving against my skin can be exquisitely painful.
Sometime I feel like I have the flu.
Sometimes I feel like a crawly sensation that is more mental than physical...I think of awful things being on the move through my body.

 

[Karmin]

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)

 

[Vicki]

Fortunately, or unfortunately, I have a multitude of other chronic health problems and surgeries so that it is hard to tell sometimes what is FM and what is the aftereffects of the most recent surgery (or discovery of an inherited health condition). I had severe chest pain and other PEM symptoms back in 2000 & 2002 that were bad enough to get a referral for an a stress echocardiogram (with NIL results), but it wasn't until much later in around 2009 that I was diagnosed with (inherited from my Mother's family) Hypertrophic Cardiomyopathy for example. Now severe.

I do remember several incidents while still working full time prior to 2010 like not being able to work out how to write and spell (in my office accounts job) and usually having about 6 rest breaks on the (normal) 12-15 mins walk home from work. There were days I couldn't walk down the office corridor and had to use my hands on the walls to support me so I didn't fall over. It was like vertigo (except that I've never suffered from vertigo before). t remember one day arriving home so exhausted I could only sit on the couch in my coat because I was too exhausted to take it off. I sat there unable to get up or move my arms as the daylight faded and it was about 4 hours later after sitting in the dark, unable to move, that I was finally able to stand, turn the lights on, eat some bread (I was too exhausted to butter it) and then undress and fall into bed. I remember sitting down in the gutter near my local food market because I was too exhausted to stand (while waiting for the taxi to arrive and take me home).

And I can't count the number of times my limbs won't do what my brain tells them to.

'Limbs of Concrete' and unable to move was a big issue back in those days of working. Tripping and walking into office furniture was also a problem. 'Waddling like a Duck' on the walk home was a regular occurrence. Severe headaches in the last 5 months of working with brain scans, ophthalmology consult and a month off work (mainly sitting in a dark room doing nothing for the first week) and then, the first day back at work being unable to see straight, or continue working, resulting in my quitting my job permanently.

It's much rarer now, but sometimes I can be happily watching my favourite TV show and my wrist (or other body part) starts hurting and within seconds it feels like my wrist is 'exploding with pain.' I don't get a 'sore' or 'aching' body part, it feels like an army of thugs is belting me continuously with baseball bats. And just when you think the pain can't get any worse, it can disappear and it's like the episode never happened. How do you tell a doctor about excruciating pain (when the pain disappears before you can get to the medical appointment.

2 months ago, I had a second round of back surgery and 2 weeks after being discharged from the rehab unit, I had a bad fall and gashed my head (with concussion). It took 3 weeks to recover and stop feeling severe pain not only on the injury site, which was expected, but other weird places. I was so dizzy that walking around my apartment made my legs feel like jelly and my fingers, hands would drop things & legs would bump into furniture and so on. My GP diagnosed Post Concussion Syndrome, but I wonder if it was an exacerbation of FM/CFS/MCS symptoms?

I still have pain from the lower back surgery site from 2 months ago.

Every time I have an exacerbation of physical or cognitive dysfunction, my MCS rears it's ugly head and I have to stay away from people, shops, road works & anywhere where there is the faintest hint of cigarette smoke. (I used to be a social smoker back 40 years ago).

Recovered now.

Yes, I have what some would call a great life in (enforced) retirement, but I do nothing that will incur or exacerbate symptoms. No one understands ICI (invisible chronic illness) except those who have it.

.......and if one more person tells what I should, or should not do, (e.g. go out with friends and have a laugh and a few drinks and I will forget all about it), I WILL STRANGLE THEM! If one more person tells me I need to get out more, or try and get a part-time job, I will...................(enter your own words here).

 

[Outnabout2B]

Great idea! Thanks Cort. Here are some of mine.
Muscle burn: It feels as if acid has been poured over my body.
Headache:It feels as if someone is blowing up a balloon in my head and it's about to explode.
The moment I came down with ME: as though someone had come along with a syringe and had withdrawn all my energy.
Leaden legs. Like a healthy person getting out of a very hot bath. The pooling of blood in the feet but 200 x worse ALL the time
Or like the pooling of blood in the feet after coming down in a lift. For a healthy person it lasts a split second but again 200 x worse ALL the time.
Cognitive dysfunction: as though my brain is Swiss cheese . In formation goes in, but into the black holes: disappearing and unable to retrieve.
As a passenger in a car, post drive: as though I had been on a roller coaster
Etc, etc

 

[Outnabout2B]

Also
The internal tremor: like a car idling or like feeling the electricity go through the cord while the vacuum is on.

 

[Eva Nagy]

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)

 

[Snookum96]

Love this thread Cort - great idea!
I am in the same position as Vicki, I'm not sure what causes what at this point.

I feel like I'm in a coma and can hear everything going on around me but can't really participate.
My feet are glued to the floor.
I've been punched in the face.
My bones are vibrating.
My skin is shrinking around my bones and muscles.
Electricity is running through my feet.
I just got hit by lightning.
Tiny little fish are nibbling at my leg muscles.
I'm like a puppet and the puppeteer controls my muscles.
I've been stabbed in the heart with a skewer.
My body is just plain giving up on me.

That's what I can think of right now.

 

[Anna]

It feels like my brain is swollen, like it's too big for my skull. My brain feels like a soggy sponge wrapped around a buzzing whirring toy. There's this overwired centre surrounded by sludge.
Generally there's a feeling that everything is inflamed and sort of throbbing and tingly but numb all at once, including my thoughts. Super sensitive but dulled down and slow at the same time. Joints ache, lactic acid burn in the muscles. There's this feeling that gravity is pulling me down when I try to take my body's weight. My brain feels too heavy for me to hold up my skull and I can't sustain sitting without everything sagging towards horizontal. There's no stamina anywhere except that incessant buzzing toy deep in the centre of my brain that never stops.
Sleep is a series of lurchings on the surface of wakefulness. It takes ages to wake up even though it doesn't feel like you've been asleep. In fact it takes most of the day for my brain to feel awake.
Everything seems too bright, too noisy, too fast, and I'm like a zombie, the walking dead, with flaccid limbs and a flat dead-eyed saggy-faced slack-mouthed expression. I have to remind myself to change my expression when I talk to my kids so they know I'm not sad or angry (which is apparently how my face looks when I'm like this). On really bad days when I can't seem to move my face into an expression, I just tell them I'm smiling on the inside.

 

[Beckyterr]

It's likely that many of the symptoms people experience don't really make it into surveys. A descriptive and a poetical element is missing. The richness of the symptom presentation in these diseases is not protrayed. That's a shame - these are very symptom-rich illnesses...
[fright]View attachment 581[/fright]
This thread is the opportunity to rectify that by getting creating and providing your own unique description of the symptoms you experience.

One of my favorite symptom descriptions is "cement legs", another similar one is "molasses legs", and the symptom I experience most that doesn't mentioned much is "burning feeling muscles and skin - particularly after exercise".

I will put the different symptom descriptions into a Resource page as we go along. At the end we'll have a thorough and hopefully enlightening description of what people with ME/CFS and FM really experience.

 

[Beckyterr]

My memory is shot! I used to be the Office Manager, Transportation Manager and the Sales Servce Manager at a small multi-million dollar company. I left my career two years ago, after working there 21 years. I couldn't keep track of anything, I made a lot of mistakes and I was so exhausted. My main physical complaint are my legs, ankles, and feet. I tell the doctor that it feels like I am walking on bone.