Poll The Fatigue Poll: What Types of Fatigue Do You Experience?

[Carole]

Lissa- When I am ask to go somewhere or do something with a HEALTHY person, my comment is
always- "I want to-but will have to let you know-I am not the same one day to the next.
This INCLUDES FAMILY THAT DOES NOT GET IT!!!!!!

Carole

Just thought after reading John's quote "The Ship has sailed" My favorite poem.
I SAT AND WATCHED THE SUN COME UP-

A SHIP SET SAIL-

A BOY SWIM BY-

NOW THE SUN HAS SET-

THE SHIP HAS SAILED-

THE BOY SWAM PAST-

THE LIFE GONE BY IS MINE-

Carole

 

[Joanna]

Most recently I experienced fatigue that was so intense it felt like some of the worst pain I have ever felt. I cannot really express the sensation.

I have had extreme pain many times, especially since I suffer from Fibromyalgia. I have also had some serious surgery for gall bladder, years ago when they sliced my middle open through layers of muscle... which resulted in pain that made me question which was worse, the illnes or the cure. And I had a long labour and delivery of two children with inducement drugs and no pain relief in the final hours of labour at all. So I know about severe pain. This painful fatigue was an aching to the very core of me so intense I could not rest or sleep until I just passed out. It caused me to feel nauseated because of its intensity. I would rank it up there or even above all the other pain I have ever experienced, and I have been bed bound most of the time with Fibromyalgia and probable ME for the last 3-4 years.

I also experience orthostatic intolerance and jerking and shaking episodes fairly regularly, which have worsened over the last year.

I also have periods, and did during these recent episodes, where I know I have had enough sleep, and do not feel sleepy, but feel so drugged from brain fog that I am fighting hard to stay awake at all, and yet when I allowed myself to close my eyes and let go of my muscles to some extent, I remained at that edgy point where I could neither stay awake nor sleep. It felt like the worst kind of hellish hangover combined with the drugged feeling you get coming out of major surgery.

After awhile I started going in and out of consciousness during an hour or more. This whole situation lasted all day, all that night, and most of the second day and evening. There was no other contributing cause I could come up with except stress from a family member's problem, and that family member is not living with me but in another country. I do believe it just added to an already greater than tipping point situation.

I know that it sounds odd to call this pain I experienced 'painful fatigue' instead of pain, but it was so completely bound up with fatigue that it seemed a new development of my usual fatigue to me.

For all of the 13 years since my Fibromyalgia diagnosis, I have experienced losses of consciousness accompanied by an electrical sensation all over and an incredibly painful pressure all over my body, particularly in my legs and feet. During these times it is not uncommon for me to lose consciousness repeatedly for several minutes or more at a time, and sometimes to never wake up until the next morning or late at night if it happens during the day and evening.

My carer asked me the other day to explain what is the difference for me between falling asleep and what I called 'losing consciousness'. This threw doubt into my mind about it, and I was not sure how to give an answer. I wonder if some of you understand the difference and how you would describe your experiences.

 

[Joanna]

When you have both illnesses ME as well as FM how can you tell where all the symptoms comes from...your brain fog , your aching, flu like pain, your IBS and I could go on, because the s/s are so similar.....

I think I have both, and I can't tell.

 

[Deb Peterson]

Voted for the "Only 3", because I have had all of them! I also have that sudden urge to sit down and take a quick nap and if I try to fight it, my body will try to take a snooze any way. (Not good for driving.) I also get so tired that I actually feel like I'm buzzing on every nerve ending. Last night was an exhausted buzz where I felt my heart was racing. It resulted in general insomnia and bizarre dreams when I did asleep. Nixstar, I try to keep a regular sleep schedule at night but like you, I just try to roll with it when the sleep doesn't come or bizarre nightmares come.

 

[Deb Peterson]

Before getting sick, if I saw a person wearing a neck brace I arrogantly assumed they were faking. I was in superb health, what was their problem? Didn't they know that a schedule of vigorous physical activity was essential for keeping a body fit? What was it about "use it or lose it" that they were not getting exactly? Physical activity was a stimulant for me, better than any drug, and I was perpetually upbeat and cheerful.

Humility for me means "to the earth". Ten years ago, I slammed into Mother Gaia with a thud. Overnight. I have been taught humility. While not as quick to judge, upbeat and cheerful are dim memories. I now get the experience of having others look at me and wonder why I can't just suck it up. They say I look good. What is my problem? Worst part is, I have no answer.

I know what it is like to bonk at the end of a run, bike, run event. To stumble past the bagel bar and face plant near the port-o-pottys. Next day I was feeling better than ever and ready to rumble. What did not kill me made me stronger. It was all about pushing myself to the limit and it felt great.

That ship has sailed. CFS aint like that. Rest has lost its efficacy. The exhilaration that exercise or employment used to bring is replaced with a feeling of weakness and dread. Ten minutes after starting anything, I used to feel my body shift into high gear and now I am moaning in agony ten minutes into any physical or mental activity, and the knockout blow of post exertion crash is waiting to finish me. Post Exertional Crash is as if my body shuts itself down as a precaution so I don't damage it by continuing whatever activity I am doing. Similar to a electrical circuit breaker.
Yeah, I know tired. This is something else.

If I may take the liberty of including this link? It speaks to humility, I think.

I don't look that different but certain activities cause me to lose my breathe, My husband regularly tells me, "You're just out of shape.", You need to do some vigorous regular exercise.", "Push through the fatigue." and on and on he goes....... Then one morning I get up and start "sucking air" just walking from my bed to my bathroom and he starts again.
I have been doing a lot better lately balancing my activities as much as possible and feeling pretty good but, the summer heat cranked up and the humidity has been very high here. So last week when any activity beyond sitting under a fan in the air conditioned room bring on the "air sucking" response, I decided I could finish mowing my daughter's yard
(a 15 minute job). I pushed way too hard and had to spend the rest of the day recovering.
I agree my FM has been an exercise in humility for me. As much as I want to be the same person I used to be, I have to be disciplined and balance/limit my daily activities.

 

[Dee4dogs]

I came down with the flu this week and didn't know I had it until I started coughing up phlegm. My thoughts are that I'm so used to the fatigue, aching and heavy limbs, I didn't notice my body coming down with the flu. Has anyone else experienced this?

Yes, I have many times.

 

[Dee4dogs]

When you have both illnesses ME as well as FM how can you tell where all the symptoms comes from...your brain fog , your aching, flu like pain, your IBS and I could go on, because the s/s are so similar.....

For me I had EBV/CFS (the 2 words were used interchangeably at the time) 1st and then diagnosed years later with FM. So I knew which symptoms I had and then which ones suddenly appeared that I hadn't experienced before. But I assume many people are given both diagnosis at the same time these days. With CFS it was more sheer exhaustion, IBS & flu like symptoms that were relentless, where FM is more pain related with brain fog and exercise intolerance. For me exercise intolerance should really be called movement intolerance (or something similar) because I have to pace myself on doing everything. My consolation prize is that I look healthy.

 

[Julia Selph]

I mean something like daytime sleepiness.
Waking at 11 in the morning and have to sleep again at 1 in the afternoon or something like that.

Or like some people report sleeping 18 hours a day. Stuff like that.

Every couple of weeks, minimum, I sleep, often 24 hours out of 26.

 

[Dee4dogs]

What about hypersomnia?
No one experiences that?

The only period of time that I personally experienced what you are describing is when I had ACTIVE EBV. Do you know if you have EBV?

 

[Dee4dogs]

Voted for the "Only 3", because I have had all of them! I also have that sudden urge to sit down and take a quick nap and if I try to fight it, my body will try to take a snooze any way. (Not good for driving.) I also get so tired that I actually feel like I'm buzzing on every nerve ending. Last night was an exhausted buzz where I felt my heart was racing. It resulted in general insomnia and bizarre dreams when I did asleep. Nixstar, I try to keep a regular sleep schedule at night but like you, I just try to roll with it when the sleep doesn't come or bizarre nightmares come.

Deb - in your comment to John about "sucking air"...would you say that this feels like the muscles that are used to move your lungs are fatigued? I ask because what I describe is how I feel. For ex: I can't squat down to scoop the kitty litter box without this happening. I recently mentioned this to the pulmonologist ( I was seeing him for sleep apnea) and he ordered a breathing test & chest xray. As both tests came back fine, I'm sticking with my description of what really is happening.

 

[Annemarie]

I agree - i cou

I picked three, but actually I could check "all of the above." Different types of fatigue at different times, plus I have both ME/CFS and FM. I left out the tired-but-wired because I get that when I've exceeded my "energy envelope" )or "spoons" or whatever term you prefer) and these days I mostly manage to avoid that, but in the early days of being sick I had it more often.

There's also the somnambulant kind, when you absolutely can't keep your eyes open and it feels like you've been drugged.

ld easily pick all boxes. Found it hard to select just three. It would've been easier to ask which ones do you NOT have Like you I have FM and CFS. Life is a constant balancing act: what can I do, how long will I be able to do it for, when can I go to sleep, how much work can I do before I will collapse? If i go grocery shopping, I won't be able to cook dinner anyway, so what is the point. If I take the dogs for a walk, will I be able to get back? And then we are not even talking about the pain....

 

[Cort]

Deb - in your comment to John about "sucking air"...would you say that this feels like the muscles that are used to move your lungs are fatigued? I ask because what I describe is how I feel. For ex: I can't squat down to scoop the kitty litter box without this happening. I recently mentioned this to the pulmonologist ( I was seeing him for sleep apnea) and he ordered a breathing test & chest xray. As both tests came back fine, I'm sticking with my description of what really is happening.

Staci Stevens says these are some of the most aerobically active muscles in the body. She thinks energy depletion in them could account for the reduced rates of "ventilation' during exercise some studies find in some ME/CFS patients.

 

[Cort]

It's interesting how few FM patients answered the survey. I think it must reflect the less severe problems with fatigue and, of course, the greater problems with pain.

 

[Elaine Schoepf]

It's interesting how few FM patients answered the survey. I think it must reflect the less severe problems with fatigue and, of course, the greater problems with pain.

Cort - maybe, or could it be that many of us have been diagnosed with both.

I have had FM since 1994 - I thought I understood fatigue, because I was not able to do as much as I used to - I would experience sudden exhaustion when I had done too much (I was working full time as a pastor and youth director, going dancing every weekend, going to the gym and working a second job as a desert caterer- I also made and sold brownies at Renaissance faires) as time went by my legs and arms just became too tired to keep up - not too weak - I coud DO the work - just after I would get that heavy limbed feeling and feel exhausted in my chest - I used to joke about hoe I was discovering that I had this wall I would hit when I did to much - but the darn wall kept moving. Pain became a big part of my life. But I could still manage to keep up a reasonable social life and work and even go to the gym off and on.
Then I got a flu that knocked me out and a doc tested me for everything but couldn't say anything but you have a virus - something herpes related but we can't tell what. He decided to call it CFS. But it came and went, So I still identified as a Fibro person - finally getting a diagnosis several years later (by my podiatrist and chiropractor first!).
In 2006 I got hit with something that felt like bronchitis - it was causing me to huff and puff and not be able to climb stairs and I often even fall asleep at my desk (while typing!). I took a sabbatical that I was due and slept 20 ish hours a day, waking only to sip water or soup and use the toilet. During that time I gained 30 lbs!

After 6 weeks of that I went to a Chronic Fatigue specialist and was officially diagnosed CFE and all the usual viral and other suspects.

I now know what fatigue really is. I still have to work - and I thank God I can manage - I just can't do much of anything else - and on days off I sleep.

Lately I have had constantly swollen and painful glands - usually that just comes when I am having a particularly bad spell - my doctor usually declares that I am fighting a virus (oh Really?? I think that is the story of my life!! lol) Any one else live with the painful glands? I tend to gain 5-10 lbs and appear a bit puffy all over when this is going on. This whole thing is just weird with a beard.

Be blessed you all!

 

[Cort]

Weird with a beard - like love it . I think your right. I could have been diagnosed with both. In fact I was but me/ cfs was first.

 

[Cort]

Staci Stevens says these are some of the most aerobically active muscles in the body. She thinks energy depletion in them could account for the reduced rates of "ventilation' during exercise some studies find in some ME/CFS patients.

I also wonder about sensitivity to stuff in the air. I get that sometimes. I also feel better when it rains and clears air out.

 

[Carole]

Voted for the "Only 3", because I have had all of them! I also have that sudden urge to sit down and take a quick nap and if I try to fight it, my body will try to take a snooze any way. (Not good for driving.) I also get so tired that I actually feel like I'm buzzing on every nerve ending. Last night was an exhausted buzz where I felt my heart was racing. It resulted in general insomnia and bizarre dreams when I did asleep. Nixstar, I try to keep a regular sleep schedule at night but like you, I just try to roll with it when the sleep doesn't come or bizarre nightmares come.

Deb- Don't know whether you have been evaluated for sleep Apnea and had an overnight study but it has made a world of difference in my sleep. I was waking 40 times a night and I quit breathing. I would start with heart palpitation and could not go back to sleep. Don't remember where I read it-but went to have an overnight sleep study done.
Usually a Pulmonary /Sleep specialist is the best. He titrated my machine and it also has a humidifier on it. The strange thing is My machine pressure is actually quite low 5-9 from machine.
The Mask is hard to get used to. However, All of my Palpitations have gone away. I had been previously to a Cardiac Dr. and he ruled out Cardiac.
May be worth looking into. I think it saved my life as I was having racing and palpitations also during the day.
All of that is gone now.

You have to sleep to get better. MY CARDIAC DR TOLD ME-YOU ONLY GET SO MANY HEARTBEATS IN A LIFETIME!!

Love all the interest from you people.!!!!!

Carole

 

[Carole]

Deb- I know everyone is going to roll their eyes with this one but- If you do wake up and can't relax enough to go back to sleep there are Yoga stretches that will increase your circulation-WHILE IN BED- and help you to go back to sleep also.

Even if you are hurting some, particularly cramping-Do just a few. I can write them up in a blog for anyone that wants to try them. Just do for 5 min. At a time.

Sleep Dr. also said to keep temp in my room 67-68 degrees . The cooler the better.

ZZZZZZZZZZZZZ

Carole

 

[Carole]

The only period of time that I personally experienced what you are describing is when I had ACTIVE EBV. Do you know if you have EBV?

All of mine started with Mono-EBV, CMV, . This become reactivated in me off and on.


Carole

 

[Carole]

Cort - maybe, or could it be that many of us have been diagnosed with both.

I have had FM since 1994 - I thought I understood fatigue, because I was not able to do as much as I used to - I would experience sudden exhaustion when I had done too much (I was working full time as a pastor and youth director, going dancing every weekend, going to the gym and working a second job as a desert caterer- I also made and sold brownies at Renaissance faires) as time went by my legs and arms just became too tired to keep up - not too weak - I coud DO the work - just after I would get that heavy limbed feeling and feel exhausted in my chest - I used to joke about hoe I was discovering that I had this wall I would hit when I did to much - but the darn wall kept moving. Pain became a big part of my life. But I could still manage to keep up a reasonable social life and work and even go to the gym off and on.
Then I got a flu that knocked me out and a doc tested me for everything but couldn't say anything but you have a virus - something herpes related but we can't tell what. He decided to call it CFS. But it came and went, So I still identified as a Fibro person - finally getting a diagnosis several years later (by my podiatrist and chiropractor first!).
In 2006 I got hit with something that felt like bronchitis - it was causing me to huff and puff and not be able to climb stairs and I often even fall asleep at my desk (while typing!). I took a sabbatical that I was due and slept 20 ish hours a day, waking only to sip water or soup and use the toilet. During that time I gained 30 lbs!

After 6 weeks of that I went to a Chronic Fatigue specialist and was officially diagnosed CFE and all the usual viral and other suspects.

I now know what fatigue really is. I still have to work - and I thank God I can manage - I just can't do much of anything else - and on days off I sleep.

Lately I have had constantly swollen and painful glands - usually that just comes when I am having a particularly bad spell - my doctor usually declares that I am fighting a virus (oh Really?? I think that is the story of my life!! lol) Any one else live with the painful glands? I tend to gain 5-10 lbs and appear a bit puffy all over when this is going on. This whole thing is just weird with a beard.

Be blessed you all!

Elaine- Love the pix of you and the Dog. I have a Dog Rescue. Looks just like my Anna.

Carole