The Chronic Fatigue Syndrome and Fibromyalgia Symptom Description Thread

[Dana L Lauren]

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.

Do you notice the flu symptoms MORE when you are short on sleep? I DO

 

[Dana L Lauren]

When I open my eyes in the morning I don't want to move. I know it's going to hurt immediately. My knees feel like someone took a hammer to them, my knuckles feel like there are pliers squeezing. (But only certain fingers) Low back, just ouch!
On low energy days just getting out of bed takes a giant amount of effort. It feels like I climbed a mountain in my sleep then am trying to wake up and do it again.

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?

 

[Dana L Lauren]

I get pain that's like fire ants are swarming through my veins and biting along the way spreading their venom and pure burning inflammation.

My legs constantly feel like someone is torturing me with dull, rusty instruments, an electrified chainsaw and thousands of electric bees, over and over.

Getting up in the morning after anywhere between 0-6 hours of horrible sleep (sometimes no slee for a week at a time) is going to be so painful, but worse is I know even the act of lying down at night or anytime hurts so much, like gravity is now extra or the titanic is dragging me under, and my bones are creaking and grinding like my grandmother's and my muscles and tissues, especially ribs, are stinging and aching.

My feet are always painfully freezing but if I cover them I immediately get feverish symptoms. I go between blazing hot and shivering cold more times a day than there are kernels of popcorn at a movie theater.

When I exercise I feel like I am dying. And I feel even worse for a week after. A few months ago I tried to do a quick grocery shopping and that was so taxing on my system I was bedridden for a week. I couldn't even sit up or shower. I didn't feel human. I don't feel human.

I'm in my twenties. I've felt this way and more, worse and worse since I was a kid. I felt like an elderly person when I hadn't even been eligible for my drivers license yet.

Something needs to change.

I GET THE COLD FEET THING ALSO, it gets old...I think people feel as if you are a whiner. But they aren't just chilly, they are "painfully freezing" like you said. That is different.

 

[Dana L Lauren]

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!

THE headaches are indescribable sometimes...aren't they? Sometimes it feels like an ice pick going RIGHT through my eye. At other times, it feels like my head is a pressure cooker and it is boiling and swelling...I can feel the throbbing of it...everywhere...it also leaves me more brain fogged, than the usual brain fog I suffer from...brutal

 

[Eva Nagy]

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 can relate to the pain increasing when energy is gone (if I have energy at a given time). Also exactly what you said about your stomach and if we do have a good day when we wake and this happens, I know for me that anything planned has to be cancelled. IBS is horrible, and I know it varies with everyone but a bad attack can last for weeks. I drink pediolite when I get like this to put electrolytes back into my body and take probiotics as well.

What concerns me is one of my newer symptoms you mentioned: stand too long, I get dizzy, lightheaded, and just started getting that blackout feeling like I am going to faint. As if the rest of it wasn't bad enough. I would understand a little better if it happened on a day that I maybe pushed too hard but I haven't been able to do much lately at all. I have to make my own lunch, and sometimes I have to sit down between even making a simple sandwich. Have you been given a reason for this? I haven't told my Dr. yet. Take Care

 

[JayneL62]

Aside from others already mentioned I hate the feeling my joints are being unscrewed/wrenched apart it results in ball of fire in (particularly) the arms & hands; also it's NEVER feeling awake, the permanent haze is dangerous as it completely ruin spatial awareness

 

[Lettie]

My hair hurts.
My eyeballs are cold.
My nose is cold.
I feel like a screw driver has been slammed into my shoulder blade and twisted.
I feel hot and my sweat is cold OR I feel cold and my sweat is hot.
I feel like a curved X steel beam has been slammed through the upper left of my head... But it comes and goes.
It feels like my veins have white glue in them, my muscles are petrified wood and my tendons are like old rotting rubber bands.
My brain is burning.
My brain feels like it has mold in it.
I could go on but now I am just showing off. lol

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.

 

[Slusterbubble]

How about this symptom description? The multitude of seemingly unrelated symptoms associated with FMS constitute a hypochondriac's dream. Try to imagine the physician's disposition if a patient tells him that he is simultaneously experiencing ALL of the following symptoms...
Pain: widespread pain, back, joint and muscle pain, headache/migraine, pain response to pressure (allodynia), temporomandibular pain, non-dermatomal parestesias, stiffness, especially in the morning, stiffness after standing, sitting or lying in the same position, swollen tissues, myoclonic twitches, muscle spasms, weakness, decreased ability to exercise.
Sleep: sleeping problems, unrefreshing sleep, restless legs.
Overall: cold sensitivity, increased body temperature, fever, increased perspiration, blurred vision, urinary frequency, urinary hesitancy, prostatic constriction.
Intestinal: nausea, abdominal bloating, alternating diarrhea / constipation, functional bowel disorder, increased urge to defecate, weight fluctuations, urinary and fecal incontinence.
ENT: nasal congestion, loss/change in taste or smell, dry mucous membranes.
Dermatology: itching, numbness/tingling of the skin, rash, eczema, hives/welts, urticaria, generalized allergy.
Pneumology: coughing bouts, respiratory problems, obstructive ventilatory deficits, wheezing.
Cardiovascular: bouts of hypo and hypertension, sudden blood tension drop, irregular cardiac rhythm, palpitations and tachycardia, vasoconstriction.
Psychological: decreased energy, decreased libido, nervousness, dizziness, anxiety, depression, severe functional impairment of activities of daily living (ADL).
Cognition: decreased performance speed, decreased attention span, cognitive overload, impaired concentration, fibro fog, inability to multitask, short and long-term memory consolidation, lethargy, apathy.
Does this ring a bell ?...

 

[Mwasi]

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.

Hello,

Based in Montreal and have quit public servant position for almost 3 years, and slowly losing English, so be patient reading that post

When I wake up, I feel like I had a car accident during sleeping: body is burning, everywhere. Back, legs (restless legs), arms, even hands and almost all fingers. I feel like I slept for....10 minutes? Often, I sleep for 11-12 hours but for nothing: i do not feel fresh anymore since I don't know when. Add sleeping apnea a very low energy. Social life is close to below 0: I can't go out anymore for a meal in the afternoon, energy to low, and even discuss with one friend is demanding too much to my brain, my so tired body. Return back to symptoms: I feel always and always tired and I am tired to be tired!

I try to explain to friends that i do not feel anymore well and "confortable" in my body. I often think at suicide because I do not see the end of this very painful, sand and lack of energy in every cell of "my costume". I just want to be live with a normal energy and NO PAIN.

What is very strange to me, it's that I have tons of projects in my head but my costume refuse to follow my head! Head is driving at 200 km and my head at...0,5 Km. What can I do?

Thank you

 

[corinne]

Toilet head...my head feels like it is a toilet...filled with sewage. My body, poisoned...sick and poisoned...chemically toxic. At my worse I feel as though I have been poisoned and am dying. When I have weakness it starts from deep within, that feeling of no reserve. And then my body feels like a wet noodle...I can't even clench my fist the weakness is so pervasive.

 

[Cort]

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.

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.

 

[Cort]

Aside from others already mentioned I hate the feeling my joints are being unscrewed/wrenched apart it results in ball of fire in (particularly) the arms & hands; also it's NEVER feeling awake, the permanent haze is dangerous as it completely ruin spatial awareness

Joints being unscrewed/wrenched apart

 

[Cort]

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.

Thanks for letting me know. If anyone else is having this problem please PM me (click on my picture and start a conversation).

 

[Debbie Iverson]

How about this symptom description? The multitude of seemingly unrelated symptoms associated with FMS constitute a hypochondriac's dream. Try to imagine the physician's disposition if a patient tells him that he is simultaneously experiencing ALL of the following symptoms...
Pain: widespread pain, back, joint and muscle pain, headache/migraine, pain response to pressure (allodynia), temporomandibular pain, non-dermatomal parestesias, stiffness, especially in the morning, stiffness after standing, sitting or lying in the same position, swollen tissues, myoclonic twitches, muscle spasms, weakness, decreased ability to exercise.
Sleep: sleeping problems, unrefreshing sleep, restless legs.
Overall: cold sensitivity, increased body temperature, fever, increased perspiration, blurred vision, urinary frequency, urinary hesitancy, prostatic constriction.
Intestinal: nausea, abdominal bloating, alternating diarrhea / constipation, functional bowel disorder, increased urge to defecate, weight fluctuations, urinary and fecal incontinence.
ENT: nasal congestion, loss/change in taste or smell, dry mucous membranes.
Dermatology: itching, numbness/tingling of the skin, rash, eczema, hives/welts, urticaria, generalized allergy.
Pneumology: coughing bouts, respiratory problems, obstructive ventilatory deficits, wheezing.
Cardiovascular: bouts of hypo and hypertension, sudden blood tension drop, irregular cardiac rhythm, palpitations and tachycardia, vasoconstriction.
Psychological: decreased energy, decreased libido, nervousness, dizziness, anxiety, depression, severe functional impairment of activities of daily living (ADL).
Cognition: decreased performance speed, decreased attention span, cognitive overload, impaired concentration, fibro fog, inability to multitask, short and long-term memory consolidation, lethargy, apathy.
Does this ring a bell ?...

It ALL rings a bell. An ENT looked at my chart and let out a shocked "oh my god" before gathering himself enough to discuss my loss of smell. I still chuckle when I think about it because it's the little things that keep us going through all this, right?

 

[Tami]

This isn't new, but being filled with wet cement has always been accurate. It feels as if I'm aware of gravity's force on every inch of my body.
My brain feels as though it's smoldering.
My mind knows what it wants my arms and hands to do, but at times they seem disconnected and I begin to fumble, spill, and drop things.

Thanks for being here everyone and for your input.

 

[Cort]

I get pain that's like fire ants are swarming through my veins and biting along the way spreading their venom and pure burning inflammation.

My legs constantly feel like someone is torturing me with dull, rusty instruments, an electrified chainsaw and thousands of electric bees, over and over.

Getting up in the morning after anywhere between 0-6 hours of horrible sleep (sometimes no slee for a week at a time) is going to be so painful, but worse is I know even the act of lying down at night or anytime hurts so much, like gravity is now extra or the titanic is dragging me under, and my bones are creaking and grinding like my grandmother's and my muscles and tissues, especially ribs, are stinging and aching.

My feet are always painfully freezing but if I cover them I immediately get feverish symptoms. I go between blazing hot and shivering cold more times a day than there are kernels of popcorn at a movie theater.

When I exercise I feel like I am dying. And I feel even worse for a week after. A few months ago I tried to do a quick grocery shopping and that was so taxing on my system I was bedridden for a week. I couldn't even sit up or shower. I didn't feel human. I don't feel human.

I'm in my twenties. I've felt this way and more, worse and worse since I was a kid. I felt like an elderly person when I hadn't even been eligible for my drivers license yet.

Something needs to change.

"
I'm collating these now. We're getting lost of temperature-related sensations - burning, cold - these are all sensations associated with damaged nerves.

Sorry you've had to deal with this from so young. Your last sentence "I felt like an elderly person when I hadn't even been eligible for my drivers license yet" - very evocative.

 

[brenda]

How about this symptom description? The multitude of seemingly unrelated symptoms associated with FMS constitute a hypochondriac's dream. Try to imagine the physician's disposition if a patient tells him that he is simultaneously experiencing ALL of the following symptoms...
Pain: widespread pain, back, joint and muscle pain, headache/migraine, pain response to pressure (allodynia), temporomandibular pain, non-dermatomal parestesias, stiffness, especially in the morning, stiffness after standing, sitting or lying in the same position, swollen tissues, myoclonic twitches, muscle spasms, weakness, decreased ability to exercise.
Sleep: sleeping problems, unrefreshing sleep, restless legs.
Overall: cold sensitivity, increased body temperature, fever, increased perspiration, blurred vision, urinary frequency, urinary hesitancy, prostatic constriction.
Intestinal: nausea, abdominal bloating, alternating diarrhea / constipation, functional bowel disorder, increased urge to defecate, weight fluctuations, urinary and fecal incontinence.
ENT: nasal congestion, loss/change in taste or smell, dry mucous membranes.
Dermatology: itching, numbness/tingling of the skin, rash, eczema, hives/welts, urticaria, generalized allergy.
Pneumology: coughing bouts, respiratory problems, obstructive ventilatory deficits, wheezing.
Cardiovascular: bouts of hypo and hypertension, sudden blood tension drop, irregular cardiac rhythm, palpitations and tachycardia, vasoconstriction.
Psychological: decreased energy, decreased libido, nervousness, dizziness, anxiety, depression, severe functional impairment of activities of daily living (ADL).
Cognition: decreased performance speed, decreased attention span, cognitive overload, impaired concentration, fibro fog, inability to multitask, short and long-term memory consolidation, lethargy, apathy.
Does this ring a bell ?...

 

[brenda]

Absolutely

 

[brenda]

Oops!!! Absolutely rings a bell with me. I would not wish this illness on anyone.

 

[Mwasi]

Me again.
2 days ago, I met my sister who now lives in Australia. She was not aware of my health situation and explained to her how I feel every day. Remember when you helped your friends to move home? The day after, all muscles & joints are extremely painful from head to toes. But "the moving effect" is there every single day. Exhaustion is deeper along the days passing and I can measure how I am loosing capabilities with time. 2 years ago, I was able to walk likely more than I do now. I use to ask for observation from my friends and family as I noticed my memory is really in bad shape and cognitive in general.

Rhumatologist use to ask which one is worst: pain or exhaustion? It's exactly on the same level: hard to live with and equally disturbing.