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

[Cort]

It's great that xyrem is so readily available now - when I wanted to try it no one would touch it. Cort, in the review section did you mean other sleep enhancers should NOT be taken with it?

That's apparently what I read somewhere - I have to say I have no idea where but it might have been Drugs.com

 

[Cort]

I could have checked all the boxes, also. The FM heaviness is so prevalent, I often feel like I weigh about 500 pounds. I actually weigh 160. I also feel like there is a giant blood-pressure cuff on my limbs, particularly my legs. You know that feeling when they're taking your blood pressure, and it gets so tight you want to yell, "Stop, it's too tight!" That's how it feels. The brain fog is so unpredictable. I'll be talking about something with which I'm very familiar and just go blank on a word I knew half an hour ago or the day before! Sometimes it comes back after a moment, sometimes the next day. When I'm talking with people, I have to say, "Sorry, just having fibro fog on a word". Then I have to run through all the synonyms. It's especially weird because I have an English degree; I've always been a writer. With the CF exhaustion I feel like my bones are made of jello, that they cannot hold me up. When I've had to push to get through a very important event, I will lie in bed and review the things in my body that don't hurt: my throat, my stomach, my lungs, my intestines. That's about it. Even my face, jaws, gums, eyes, skull, every limb, every appendage, aches very deeply, and my skin hurts to the touch. Stiffness is intense and continuous. Everytime i stop moving it's like I'm wet cement, and the cement sets into a solid. I was always an athlete. I used to being so strong and limber when warmed up. It's like being a 110 years old, and I felt this way for 23 years. I got sick when I was 36. So lovely, huh?!!

Not fun Julie!
Something has really gone wrong!
Is your pain worse when you're fatigued? Do you think that your pain is a function of your fatigue to some extent. That is if you have more energy do your pains diminish? And when you have less energy they increase or is there no relation?

 

[Cort]

It was July of 2007. I remember the "walk" I tried to take with my husband the day after being discharged from the hospital (with no diagnosis) because the doctor had convinced my husband that I needed the exercise. I struggled to achieve that recommendation (as I was always the highest of achievers), but within just a few minutes I needed my husband to literally carry me. My legs were like lead. It was, as I imagine, like having 100lb weights on each of my limbs.

As I think back on those initial months...horrible flu-like symptoms...nervous, racing heart...heightened awareness of my stomach...feeling as though I was out of my own body...extreme fatigue....extreme sensitivity to sunlight...went from 154lbs to 107lbs within 7 months....No burning body pain yet....aching body pain at that point.

I prayed to die.

I believe that was the beginning of my CFS. What a journey for each of us since "the beginning", huh?

I would like very much to hear of others' initial symptoms....Anyone?

That would be a great project. I'm going to put that on my list. It was the worst time for me - that's for sure.

 

[Cort]

You've hit on a very important idea, imo. "The snowball effect" - how does the length of time we suffer with fatigue and pain, the inactivity/lack of exercise, contribute to worsening of the condition(s)? My instinct tells me it's quite significant. In my case the fact that I have gained nearly 20lbs in the past 2 years is a major contributor to the more frequent and longer lasting episodes of extraordinary pain.

It would be interesting to hear from others on this idea.

I think it does. I'm about ten lbs from where I want to be - just can't seem to get that weight off but for me I think it's more the increasing stiffening off the muscles and the affects on my joints. I feel like things are continuing to contract and I do not see good days ahead. I am battling back with stretching. I hope to God it works otherwise I'm not going to be in good shape pain wise.

 

[J William M Tweedie]

It was July of 2007. I remember the "walk" I tried to take with my husband the day after being discharged from the hospital (with no diagnosis) because the doctor had convinced my husband that I needed the exercise. I struggled to achieve that recommendation (as I was always the highest of achievers), but within just a few minutes I needed my husband to literally carry me. My legs were like lead. It was, as I imagine, like having 100lb weights on each of my limbs.

As I think back on those initial months...horrible flu-like symptoms...nervous, racing heart...heightened awareness of my stomach...feeling as though I was out of my own body...extreme fatigue....extreme sensitivity to sunlight...went from 154lbs to 107lbs within 7 months....No burning body pain yet....aching body pain at that point.

I prayed to die.

I believe that was the beginning of my CFS. What a journey for each of us since "the beginning", huh?

I would like very much to hear of others' initial symptoms....Anyone?

I was diagnosed with Polycythemia Vera (PV) in early 2011. Confirmed with a bone marrow biopsy the Dr. started me on Hydroxyuria. After a month I ended up in hospital with a life threatening fever; delirious, I have no recollection at all of the first 2 days. After 15 days and every test the Drs could think of, the fever dissipated. The Drs never found a cause. (PUO) I was convinced it was caused by the Hydroxyuria and despite yet another specialist's advice, I refused to continue taking it, opting for weekly blood draws (450-500ml) to relieve the pressure. My own research and months of insisting that 2 special tests be done, my Dr finally acquiesced and when the results came in, they were negative. Drs were astonished. The PV had mysteriously disappeared but the fatigue that had accompanied it never went away. I struggled through another year of work but by the end of 2012 I couldn't continue. Fibromyalgia developed over the past year and has gotten progressively worse. We have to keep whatever pressure we can on the funders to get answers to this complex and befuddling disease.

 

[susanna]

I find that the post-exertional symptom is not a separate thing- it is all of the things listed and more. It is also not just fatigue. Using the 'f' word just confuses ME with the fatigue that accompanies all sorts of conditions. Researchers should be more discriminating in relation to PEM symptoms (and all ME symptoms for that matter).
With PEM, fatigue is the least of my problems, I get the molasses feeling, pain, stiffness in muscles, loss of blood for to the brain (I can almost feel this) leading to brain fog, at some point hunger, thirst, feeling cold, muscle twitching, tired but wired, unable to get to sleep that night, sensitivity to sound. Probably more. These are all part of my PEM. The symptoms vary over a number of days. Day 3 is usually the worst, the second day being better. Most of these are nothing to do with exertion in normal people.
I'd like to see researchers look at what might underlie these symptoms after exertion, instead talking about 'fatigue' which has caused so much confusion. this would be an elaboration of the Snell et al studies.

 

[Dee VanDine]

What about hypersomnia?
No one experiences that?

definitely have hypersomnia, as well as all the symptoms listed in the poll. it was hard to choose.

 

[Dee VanDine]

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.

yes, that's what my doctors call "hypersomnia".

 

[Dee VanDine]

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 was initially diagnosed 25 years ago with CFS. that was before fibromyalgia was a thing. later, i was diagnosed with fibro. and, i'm just now finding out about the ME label or ME/CFS. i can't say where the symptoms come from. then there is osteoarthritis, degenerative disc disease, nerve pain, and infections (upper respiratory mostly). they all seem to blend together for me.

 

[zenmom]

A study found that people with chronic fatigue syndrome regularly experienced five different types of fatigue while healthy controls only regularly experienced one.

Cort, I just answered the poll. I would have picked 4 types of fatigue but the poll restricted my choices to 3, so I flipped a coin between molasses-like and flu-like.
What is the type healthy controls regularly experience?

 

[MK Gilbert]

I get a depleted feeling that is not sleepiness at all...like my system has run out of gas. I often feel a very unpleasant contraction in my chest area (not a heart problem). Maybe you would describe it as molasses or flu-like, brain fog for sure. Have always had trouble communicating what it's like.

I get that "tightness in the chest" too, esp if I have too much caffeine which I'm very sensitive to. I've had times when I've slept too much (I normally seem to need about 10 hrs/night, but don't often nap as I have so much trouble getting to sleep anyway...IF I nap I seem to need a 3-hr nap! I get all the types of fatigue, I guess...)

 

[Carrie Conley]

I checked 3 but could have easily been 5. When I have a major fibro flare I feel like I am coming down with the flu. Never know what is going to happen. 9 times outta 10 its fibro. I have learned the difference over the years.

Brain fog is another thing I deal with alot. Especially in the morning. It can take me most of the day to get out of it and be able to do anything. I dont dare drive anywhere til it is gone.

 

[susanna]

I get that "tightness in the chest" too, esp if I have too much caffeine which I'm very sensitive to. I've had times when I've slept too much (I normally seem to need about 10 hrs/night, but don't often nap as I have so much trouble getting to sleep anyway...IF I nap I seem to need a 3-hr nap! I get all the types of fatigue, I guess...)

Kate, I get terrible contraction in the chest too. Chest muscles seem to freeze up. Feels like I'm getting a chest infection. It has expanded to the back and neck muscles. I don't hear this complaint many times. Loosening the muscles by rolling on tennis balls helps a bit. This was part of my earliest symptoms. It is a big part of PEM when I have used my arms in a raised position.

 

[susanna]

Does anybody experience craving for sweets pretty soon after exertion? I do, also thirst. This pilot study, although small may cast some light on this symptom? I hop they follow up these findings:
Abnormalities of AMPK Activation and Glucose Uptake in Cultured Skeletal Muscle Cells from Individuals with Chronic Fatigue Syndrome Audrey E. Brown, David E. Jones, Mark Walker, Julia L. NewtonPublished: April 2, 2015
DOI: 10.1371/journal.pone.0122982 http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0122982

 

[susanna]

definitely have hypersomnia, as well as all the symptoms listed in the poll. it was hard to choose.

Dee and Folk, I feel as if I could sleep all the time, but if anything I have trouble sleeping except for short periods, broken sleep at night, etc. The other side of the same coin? the short sleeps are refreshing though, for a short time.

 

[ladylinda]

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.

I agree with all of that and glad you added the "feels like you've been drugged". I get that a lot too.

 

[Laura L]

Xyrem, (sodium oxybate) gives me the deep and restorative sleep, I cannot get on my own. It's lessened my pain, though it still exists. And now, I'm not stiff in the mornings the way I used to be. Being able to sleep again is a great blessing, and I'm all for more $ and more research. Hoping we'll find out what it is and how it's cured, before I die.

I have just started xyrem about 5 weeks ago. It has given me back stamina and energy, I lay down a lot less and malaise and IBS has greatly diminished. I can do so much more, feel like I'm rejoining the human race. However I am occasionally getting a tight chest feeling and my POTS had worsened a little. I take a beta blocker for this but still am concerned about it. My doc and jazz pharma don't seem concerned. Right now I'm on 5ml a night going up to 6 shortly, I am currently doing 3 days on xyrem then switch to 2 days on lunesta bc of the POTS and chest side effects. I was wondering did u experience similar side effects?

 

[fdotx]

Has anyone on Zyrem tried trazadone? It works well for me and like Zyrem is supposed to increase deep sleep whereas meds like ambien can actually fragment your sleep.

 

[Laura L]

Has anyone on Zyrem tried trazadone? It works well for me and like Zyrem is supposed to increase deep sleep whereas meds like ambien can actually fragment your sleep.

In 2012 I used a combination of trazadone 50 mg with .1.0 clonazapam and horizant. Got me 6 hrs fragmented sleep each night, but started to feel much better. Then I weaned off clonazapam. One day I spent too much time in 100 degree heat which caused a crash for 4 months. I think if I stayed on clonazapam this may not have happen. I will say tho, on that combination I did feel much better. When/if I go off xyrem I will definitely go back to trazadone and use Lunesta sleep cocktail. I build up tolerances to drugs so I try to mix it up here and there. I'm hoping the POTS and chest tightness side effects diminish when taking xyrem.

 

[Upgrayedd]

As I sit here, I can barely think of the words to describe my fatigue. Drained, fogged, heavy-limbed, tired-but-wired, yes, yes, yes, yes...

Usually, I'm mostly okay in the mornings, and I get worse as the day goes on, especially in the afternoon hours. But today, I'm sitting here at work, worthless, staring at my computer screen. I think it's partially due to a hangover from taking extra Elavil to sleep last night.

Sometimes I go through a period when sleep comes almost normally, but then it goes away and the insomnia returns. I used to use Trazodone, but it stopped working reliably, so I switched to Elavil. Last night, 25mg made me sleepy, but brought no sleep. After several hours of listening to my wife and dogs sleep, I took more, and I did finally sleep soundly until morning. But now I feel like I'm still asleep, the walking dead, helpless and hopeless.

Without meds, I don't sleep and I'm exhausted and frantic all at once. With meds, I sleep, but I still don't feel well. Just feeling like crud.