The Chronic Fatigue Syndrome and Fibromyalgia Symptom Description Thread

[Lissa]

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.

Yes!! You both described this so well. I've experienced it too, but never talked about it because it was - well, too weird to explain!

It happens to me when I've been standing in one place for too long... Timing varies, most often it has happened in the kitchen, trying to cook or wash dishes. It just feels like the floor is moving, rolling, slow motion and inconsistent. I don't get dizzy luckily. But for a few seconds I feel like my body is trying to keep from falling down- as if my knees are sloppy or about to give out. Or maybe if could be described as a brief case of spaghetti legs.

I adjust my stance and grab a countertop- thinking whoa! What's that? Earthquake? But nobody else is affected or even notices. Once it happened to me lying down - I could totally swear the couch was rumbling / rolling. Again - no dizziness, nothing turning... Just a sense of motion underneath me. I even checked online on the earthquake website and called my husband at work to see if they felt it. Nope.... Nothing. (Seriously, I had even looked at my legs and SAW them trembling as if something was shaking the couch, not coming from muscle spasms because I was relaxing, completely passive, and couldn't feel anything!)

Crazy stuff! I'm glad it has always been very brief for me. I can't imagine having it go on for more than a few seconds. That sounds even more frightening!

 

[VJ Knutson]

Yes!! You both described this so well. I've experienced it too, but never talked about it because it was - well, too weird to explain!

It happens to me when I've been standing in one place for too long... Timing varies, most often it has happened in the kitchen, trying to cook or wash dishes. It just feels like the floor is moving, rolling, slow motion and inconsistent. I don't get dizzy luckily. But for a few seconds I feel like my body is trying to keep from falling down- as if my knees are sloppy or about to give out. Or maybe if could be described as a brief case of spaghetti legs.

I adjust my stance and grab a countertop- thinking whoa! What's that? Earthquake? But nobody else is affected or even notices. Once it happened to me lying down - I could totally swear the couch was rumbling / rolling. Again - no dizziness, nothing turning... Just a sense of motion underneath me. I even checked online on the earthquake website and called my husband at work to see if they felt it. Nope.... Nothing. (Seriously, I had even looked at my legs and SAW them trembling as if something was shaking the couch, not coming from muscle spasms because I was relaxing, completely passive, and couldn't feel anything!)

Crazy stuff! I'm glad it has always been very brief for me. I can't imagine having it go on for more than a few seconds. That sounds even more frightening!

Looking back over the time it happened, I wonder if this was a reaction to one of my visitor's perfume. Just before it happened, she moved away from me and remember feeling relief - I have such a sensitivity to perfume.

 

[Martinigal]

Fibromyalgia is relentless in it's ability to cause pain and dullness. For me it feels like:
You have that horrible flu, you ache to the bone, you're on the edge of what's real and what's not
You're feet make standing or walking too long simply impossible. The pain causes me to go some where else in my brain, I'm in a bubble so I can survive. This is especially bad if I'm stuck some where, no place to sit. This drives me further into a feeling of choosing to be house bound.
Waking up in the morning is horrible. You look at the clock and see that it's so late in the day, the fog fills the space where I've just had another terrible dream, of the
person I used to be. And in this dream all my loved ones abandon me, as has happened in my real life. My lower legs feel as if somehow I've managed to move my feet like Linda Blair's head, the pain from my knees to my ankles is so bad. My feet are numb and my back may or may not support me when I get up.
My walker waits for me.
I tackle the day by walking, half bent over to make my coffee. I then head over to the sofa turn on the heating pad and set it up so my back can relax as well as all the
muscles which have tightened up so badly through the night. I think I get really frustrated during my nightmares and I dig my fists into my head and my fingers
sometimes get pushed through the metal vine of my headboard.
All day long I fight the flu that won't get better, the pain in my muscles that won't get better and the complete fog I swim through that never goes away. I used to be smart, the cognitive losses are emotionally painful.
As the day wears on I will deal with a needle which happily boars through out my chest. I will try to move and my hips will scream, how dare I try to make my body
work. Don't I know I'm not "normal"?! That my body has chosen this mutation and I have NO SAY IN THE MATTER. I am trapped inside my self and I am
disappearing. A little more each day.
I've been hospitalized several times for my back, my hips and Pneumonia. Once Pneumonia and meningitis.
Suicide is definitely an option. I was the life of the party, now there is no party, just sadness, and pain as my constant companions. I have horrible health care, even
worse mental health care. I have my stash so I can go when I'm ready, but some where, in the mind that I'm losing a voice tells me I'll go to Hell. But I'm already in
Hell, I tell it. Oh, just you wait and see, it says, Hell makes this look like a vacation in Bali. So I don't go to my stash. Due some strange Christian belief
but I'm not a Christian, I don't believe in all of that and I don't, but for some reason there is this little voice. And even that seems like Fibromyalgia.
How unfair is that, to only be taking up space in the world and not being allowed to chose my exit strategy, which I've really needed the past couple of weeks.
But I'll wake up tomorrow and go through it all again. For, as much pain as I suffer, as much of my brain that's gone, the worst really is emotional. To live in a constant
state of depression without a single person knowing how I feel is more difficult than any physical thing in my life.

 

[Martinigal]

Yes!! You both described this so well. I've experienced it too, but never talked about it because it was - well, too weird to explain!

It happens to me when I've been standing in one place for too long... Timing varies, most often it has happened in the kitchen, trying to cook or wash dishes. It just feels like the floor is moving, rolling, slow motion and inconsistent. I don't get dizzy luckily. But for a few seconds I feel like my body is trying to keep from falling down- as if my knees are sloppy or about to give out. Or maybe if could be described as a brief case of spaghetti legs.

I adjust my stance and grab a countertop- thinking whoa! What's that? Earthquake? But nobody else is affected or even notices. Once it happened to me lying down - I could totally swear the couch was rumbling / rolling. Again - no dizziness, nothing turning... Just a sense of motion underneath me. I even checked online on the earthquake website and called my husband at work to see if they felt it. Nope.... Nothing. (Seriously, I had even looked at my legs and SAW them trembling as if something was shaking the couch, not coming from muscle spasms because I was relaxing, completely passive, and couldn't feel anything!)

Crazy stuff! I'm glad it has always been very brief for me. I can't imagine having it go on for more than a few seconds. That sounds even more frightening!

I can totally relate to the dizziness. When I walk down the hallway of my apartment building I weave like a drunken fool! I actually smash into walls, even inside my house. I used to struggle with this while taking a shower. Finally I had to start washing my hair in the sink on a separate day, then shower the following day. I've fallen quite often.

 

[Martinigal]

-The bottoms of my feet feel bruised like they have been struck over and over again with a 2 x 4.
- My skin is on fire, must be two miles from the sun.
- Wardrobe???? Pajamas day and night.
- I walk like Frankenstein's monster
- My elbow is only comfortable in a saluting position.
- Feels like fingers are constantly pressed deep into my shoulders (underneath the skin and touching the bone).
- My head droops like a rag doll, just takes too much energy to keep my neck straight.

The bottoms of my feet are SO painful, in the heel area only. I have a tendon disorder, they've tried to cast me, I'm in a steel rod brace from my foot to my knee and still I have such pain.

 

[Martinigal]

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.

Your closing statement "These are invisible illnesses that make being alive challenging." was a bit understated, I think. Life certainly is challenging, it's also a lot more than that, it's exhausting, sad, makes being alive more like Hell than challenging. Not to insult, but what you've described is horrible, I know that feeling of almost every you've listed, except the insomnia. I sleep long and hard, but my hours are turned upside down. I wake at about noon, I'm exhausted all day, fall asleep after I eat and at about midnight I've got more energy that I have all day. I just wanted to give you more credit for living like you do, and like I do. Best to you, Lorraine

 

[Martinigal]

Cort, if I remember correctly, you have ME, not Fibromyalgia, right? I feel silly asking this but is ME also painful. I relate it to Chronic Fatigue Syndrome, where fatigue is the main complaint. Am I wrong? I'm only trying to learn. I know people with ME have other issues like food intolerance, chemical sensitivity, those kinds of things, but I never knew that ME also is accompanied by pain. And, if so, what then is the difference between FM and ME? The intensity of the fatigue? Please help me understand.

 

[Cort]

Yes!! You both described this so well. I've experienced it too, but never talked about it because it was - well, too weird to explain!

It happens to me when I've been standing in one place for too long... Timing varies, most often it has happened in the kitchen, trying to cook or wash dishes. It just feels like the floor is moving, rolling, slow motion and inconsistent. I don't get dizzy luckily. But for a few seconds I feel like my body is trying to keep from falling down- as if my knees are sloppy or about to give out. Or maybe if could be described as a brief case of spaghetti legs.

I adjust my stance and grab a countertop- thinking whoa! What's that? Earthquake? But nobody else is affected or even notices. Once it happened to me lying down - I could totally swear the couch was rumbling / rolling. Again - no dizziness, nothing turning... Just a sense of motion underneath me. I even checked online on the earthquake website and called my husband at work to see if they felt it. Nope.... Nothing. (Seriously, I had even looked at my legs and SAW them trembling as if something was shaking the couch, not coming from muscle spasms because I was relaxing, completely passive, and couldn't feel anything!)

Crazy stuff! I'm glad it has always been very brief for me. I can't imagine having it go on for more than a few seconds. That sounds even more frightening!

That is really something....I hope it continues to be very brief!

 

[Cort]

Cort, if I remember correctly, you have ME, not Fibromyalgia, right? I feel silly asking this but is ME also painful. I relate it to Chronic Fatigue Syndrome, where fatigue is the main complaint. Am I wrong? I'm only trying to learn. I know people with ME have other issues like food intolerance, chemical sensitivity, those kinds of things, but I never knew that ME also is accompanied by pain. And, if so, what then is the difference between FM and ME? The intensity of the fatigue? Please help me understand.

Studies indicate that pain is very common in ME/CFS but it's not one of the hallmark factors. Some people with ME/CFS have no pain. Fatigue, post-exertional malaise and cognitive issues are the most common symptoms in ME/CFS. Pain and Fatigue are the most common symptoms in FM.

What is the big difference between ME and FM? That's a good question! I'll bet the answer is going to fall somewhere around the ability to exercise. People with FM don't exercise all that well but they appear to tolerate it better than people with ME/CFS.

Some people think these diseases are on a continium with FM on one end and ME/CFS on the other.

 

[Cort]

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.

Acid poured in the bloodstream -------- OUCHHHHH!

 

[Martinigal]

Studies indicate that pain is very common in ME/CFS but it's not one of the hallmark factors. Some people with ME/CFS have no pain. Fatigue, post-exertional malaise and cognitive issues are the most common symptoms in ME/CFS. Pain and Fatigue are the most common symptoms in FM.

What is the big difference between ME and FM? That's a good question! I'll bet the answer is going to fall somewhere around the ability to exercise. People with FM don't exercise all that well but they appear to tolerate it better than people with ME/CFS.

Some people think these diseases are on a continium with FM on one end and ME/CFS on the other.

I've always thought that as well. And good thought about the exercise thing, although I have been unable to exercise due to issues with my back and feet.

 

[CathyH]

Great description! - Yes to pretty much all of those you have listed Slusterbubble xx

 

[Martinigal]

Cort:
Exactly! The only thing I would emphasize would be the intense muscle aches, in the way that the flu feels. Body aches. For me, certainly joint and muscle pain, but the ache is really at the fascia level (I know you know this) and for me this feels more like a horrible flu.

 

[CathyH]

Hi Martinigal, I wonder how many of us are suicidal and have a stash of medication for that purpose ready as you said? I know I do, but something inside always says "but what if". Maybe just knowing we can exit if we want helps? xx

 

[Martinigal]

Hi Martinigal, I wonder how many of us are suicidal and have a stash of medication for that purpose ready as you said? I know I do, but something inside always says "but what if". Maybe just knowing we can exit if we want helps? xx

Cathy, great question! I think knowing that I have a stash is good and bad. Good for sure, it always allows me a way out. Bad because I believe it's really quite a thing to take one's life. It leaves such a mess behind, my parents would be devastated and guilty, which is my biggest concern. And, in the end I'm afraid, which I think I also said. I'm also at that horrible place where one finds a wonderful pain medication, energy like crazy, self sufficency, pain greatly reduced and then it stops working. I'm now slipping back into my old ways. Exhausted after sleeping 10 hours, takes me 3 hours to attempt a shower and getting ready to run an errand and preferring to stay home where I know I'll be comfortable instead of going out and hoping IBS doesn't strike, that there will be a place for me to sit, etc. It's heart breaking. Those first 7 months were so golden. Also the weight gain has become unmanageable.

 

[Cort]

Cathy, great question! I think knowing that I have a stash is good and bad. Good for sure, it always allows me a way out. Bad because I believe it's really quite a thing to take one's life. It leaves such a mess behind, my parents would be devastated and guilty, which is my biggest concern. And, in the end I'm afraid, which I think I also said. I'm also at that horrible place where one finds a wonderful pain medication, energy like crazy, self sufficency, pain greatly reduced and then it stops working. I'm now slipping back into my old ways. Exhausted after sleeping 10 hours, takes me 3 hours to attempt a shower and getting ready to run an errand and preferring to stay home where I know I'll be comfortable instead of going out and hoping IBS doesn't strike, that there will be a place for me to sit, etc. It's heart breaking. Those first 7 months were so golden. Also the weight gain has become unmanageable.

Darn Martinigal - it's really hard to slip back like that.

What worked for seven months?

 

[Cort]

The bottoms of my feet are SO painful, in the heel area only. I have a tendon disorder, they've tried to cast me, I'm in a steel rod brace from my foot to my knee and still I have such pain.

Ouch! You are really going through it Martinigal! Sending you some good wishes

 

[Cort]

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?

That sounds similar to what Lauren Hillenbrand experiences.

 

[CathyH]

Cathy, great question! I think knowing that I have a stash is good and bad. Good for sure, it always allows me a way out. Bad because I believe it's really quite a thing to take one's life. It leaves such a mess behind, my parents would be devastated and guilty, which is my biggest concern. And, in the end I'm afraid, which I think I also said. I'm also at that horrible place where one finds a wonderful pain medication, energy like crazy, self sufficency, pain greatly reduced and then it stops working. I'm now slipping back into my old ways. Exhausted after sleeping 10 hours, takes me 3 hours to attempt a shower and getting ready to run an errand and preferring to stay home where I know I'll be comfortable instead of going out and hoping IBS doesn't strike, that there will be a place for me to sit, etc. It's heart breaking. Those first 7 months were so golden. Also the weight gain has become unmanageable.

Its such a frustrating illness hey. I'm also with you on the weight gain - I'm currently 3 stone heavier after 3 years of illness, despite following a 'clean' diet.

 

[Martinigal]

Darn Martinigal - it's really hard to slip back like that.

What worked for seven months?

Methadone...I decided to try it after speaking to random people and finding out they had FM too, but they were working and seeming living normal lives.
I asked how and the answer was always the same: Methadone. Plus my PCP's medical assistant had FM and she was on Methadone. Like I said, life changing.
Now I'm dealing with the downside. My body has adjusted to the dose and, albeit on I'm a very low dose, do I want to get into the cycle of upping the dose,
adjusting, then increasing the dose again? I'll tell you, the relief I felt from the methadone was like heaven. Never have experienced any "high" from it, just
pain relief, fog clearing, and tons of energy. Over the past month I've really felt my body adjusting. Sad Sad Sad :-(. It's a huge issue, complex in every way.
Do you just accept that to live a better life, you'll have to continuously up the dose, or just quit here and go back to the despair of hopelessness?
PS: Please no comments on the dangers of taking pain meds. Believe me I've did not come upon this decision lightly, it saved my life literally.