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

[Carole]

Same here. I have both diagnoses and could check all of the above. Barely able to keep my eyes open, I go to bed. Lying in bed trying to relax the muscle tension throughout my body - Im all tensed up like i'm trying not to fall off a ledge....as I start to doze off I "startle" awake like an infant....that would probably qualify as "wired but tired". But I had exceeded my 3 options.

It qualifies that you may actually have sleep apnea. You are jerking awake because you have quit breathing.
Read my blog in this in this Article. You need an overnight sleep study done by a prof Pulmonary/Sleep specialist.
Saved my life-Literally!!!! You Startle awake because your body is telling you you are not breathing.
LISTEN TO IT!!!!

Carole

 

[Elaine Schoepf]

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

Carole

My sweet goofy Poppy - we found her wandering down a busy street post whelping. The animal rescue suspected a local back yard breeder, someone came to claim her but was rejected (I assume the breeders). I told them they could NOT put her down - call me first. They did. I took her home to foster - HA! next week she will have owned us for a year. She is my cuddle bug. Blessings!

 

[Elaine Schoepf]

It qualifies that you may actually have sleep apnea. You are jerking awake because you have quit breathing.
Read my blog in this in this Article. You need an overnight sleep study done by a prof Pulmonary/Sleep specialist.
Saved my life-Literally!!!! You Startle awake because your body is telling you you are not breathing.
LISTEN TO IT!!!!

Carole

i do the jerk awake thing too, but have as long as I remember. Last time i had a sleep study, I didn't have apnea but did have a limb movement disorder I can't recall the name of (lol) and severe RLS. I have always talked in my sleep - I now often scream, yell curse and sing in my sleep - time for another study? I think so!

 

[Elaine Schoepf]

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.

Oh my stars!! Pacing is everything! Yet it is not enough to avoid the wall crashing. Grrrrr! Exercise intolerance/ movement & stress intolerance are the bane (s?) of my existence. I just want to take my dogs for a walk in the park, for Pete's sake!

 

[Elaine Schoepf]

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


Carole

HMM... Makes me remember something.
Mono and EBV were going around like wildfire in 1985/6 at my graduate school in the hills of Berkeley. (AIDS was also rampant at the time.)
So were other Herpes viruses which we we now know about - but they were only diagnosed back then if you were a person with AIDS and had a great healthcare team.

I had a year long virus that made my chest feel full of hot oatmeal.I never went to the doctor - it was Kaiser a half hour away and I was too tired to take Bart all that way. Several of my good friends at school got diagnosed with EBV that year.

After the virus, I began to have what I later learned to be peripheral neuropathy, first pain and heaviness in my lower legs and feet and elbows to hands, and then years later the numbness and tingling in the same places (sock and glove syndrome someone called it).

I never thought about a connection between "the Year of Oatmeal in My Chest", followed by severe depression and the neuropathy and later the FIBRO/CFS that I ave always thought of as my first experience with Fibro or CFS which happened after a dog attack in 93.

Now I wonder if got the HBV in the 80's, and a mild case of fms.cfs followed by a several year remission, set off again and the dog mauling resulting in a big flare that just never really went away again.

I had the "oatmeal in the chest" virus again in 2006 and was diagnosed with EBV and HHV6 and mycoplsasma pneumonia. No CMV diagnosis ever, tho. (i lent myself to my rheumie and his friend the infectious disease specialist in the late 90s and let them test me for every crazy infectious disease they had the equipment to test for. All they found was signs of signs of herpes like viruses they couldn't identify.

it is all interesting. and frustrating. Pretty please, can we all just get better, now?

 

[Elaine Schoepf]

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

Same here. I could sleep around the clock (and just get up for a bit here and there) if I just didn't have to work. and sometimes i just can't help it - I sleep and sleep until my body lets me wake up again.

 

[Carole]

My sweet goofy Poppy - we found her wandering down a busy street post whelping. The animal rescue suspected a local back yard breeder, someone came to claim her but was rejected (I assume the breeders). I told them they could NOT put her down - call me first. They did. I took her home to foster - HA! next week she will have owned us for a year. She is my cuddle bug. Blessings!

I have two in foster care that had been abused and neglected. They are wonderful dogs and do not deserve their treatment by Idiot dog fighters.

So glad you got her and appreciate her.I rescue Doberman, Rotties and now have 2 Bulldogs Anna and Adele.

Carole

 

[Carole]

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- Have you been checked for POTS or OI? It definitely fits your pattern. Still think the CPAP saved my life as I was waking 40 times during the night and having Palpitatons. I had quit breathing. Since I am on machine titrated to a low setting-
The Palpitations have stopped.

Just a suggestion.

Carole

 

[Carole]

HMM... Makes me remember something.
Mono and EBV were going around like wildfire in 1985/6 at my graduate school in the hills of Berkeley. (AIDS was also rampant at the time.)
So were other Herpes viruses which we we now know about - but they were only diagnosed back then if you were a person with AIDS and had a great healthcare team.

I had a year long virus that made my chest feel full of hot oatmeal.I never went to the doctor - it was Kaiser a half hour away and I was too tired to take Bart all that way. Several of my good friends at school got diagnosed with EBV that year.

After the virus, I began to have what I later learned to be peripheral neuropathy, first pain and heaviness in my lower legs and feet and elbows to hands, and then years later the numbness and tingling in the same places (sock and glove syndrome someone called it).

I never thought about a connection between "the Year of Oatmeal in My Chest", followed by severe depression and the neuropathy and later the FIBRO/CFS that I ave always thought of as my first experience with Fibro or CFS which happened after a dog attack in 93.

Now I wonder if got the HBV in the 80's, and a mild case of fms.cfs followed by a several year remission, set off again and the dog mauling resulting in a big flare that just never really went away again.

I had the "oatmeal in the chest" virus again in 2006 and was diagnosed with EBV and HHV6 and mycoplsasma pneumonia. No CMV diagnosis ever, tho. (i lent myself to my rheumie and his friend the infectious disease specialist in the late 90s and let them test me for every crazy infectious disease they had the equipment to test for. All they found was signs of signs of herpes like viruses they couldn't identify.

it is all interesting. and frustrating. Pretty please, can we all just get better, now?

Elaine-
I graduated San Diego State -100 years ago then spent 1 year at Berkley. I became sick in 87 I think.
Had a wonderful infectious disease dr. that was on the Aids research here and started me on Immune Globulin- In 3 weeks I started to get better. Took them for years . Until mfg Bayer sold the co to someone else. They changed the formula with a detergent and generic and it did not work. I still take the generic-made by Telecris but I may stop as I get a headache after sometimes.

I remember when I first started with the Brand name by Bayer and the Dr. would always have me wait for 30 min to see how I did. My head would clear up in about 10 15 min. Amazing. This Dr. is retired now and went into Aids research.

I am planning on going to an infectious disease Dr. here in the SE as there is no one here, that has a clue about anything that is going on.

Carole

Carole

 

[Abby]

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.

 

[Abby]

Oh, I forget, I also use a vpap machine and it's very helpful as I have both kinds of sleep apnea, obstructive and central, (where my brain forgets I have to breathe). Forgetting words is just awful, I love words and being bereft of them so often, it's frustrating. Lowers my self-esteem. Makes it hard to express myself and be understood. I've been ill with fm for about 30 years and spend a lot of my time in bed.

 

[Cort]

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.

Congratulations Abby...Stiffness upon waking is pretty common for me.

Please consider reviewing Xyrem here - http://www.cortjohnson.org/forums/reviews/treatments/sleep/xyrem-sodium-oxybate.262/

 

[fdotx]

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?

 

[Julie G]

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?!!

 

[J William M Tweedie]

I have all five, as most of us do, but what is called molasses fatigue here (I call it lead limbs) has happened either as a new variation of flu fatigue just more frequent for me recently - maybe worse because of the snowball effect of less active life? Wired and tired usually happens when I'm trying to sleep or nap - or that's when I notice it most, for what that is worth.

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.

 

[Grace2U]

Prayed to die.....

 

[Grace2U]

Perhaps this has been a topic that I missed, but I am curious to know how others first realized something was seriously wrong..... Anybody?

 

[Grace2U]

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 you are right J William. This constant burning and aching has got to be taking a toll on our bodies as each day passes. I too have gained at least 20lbs in the past 2 years only. Now I'm in a losing mode.....who knows why? Crazy. If I remember correctly....the pain represents inflammation. Inflammation, over years and years, must be detrimental aside from the Post-exertional Malaise, and flu-like symptoms That's my reply
(I'm glad I didn't accidentally press the "post reply" button too soon on this post!) Sorry about the earlier post Cort.

 

[Grace2U]

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?

 

[J William M Tweedie]

I think you are right J William. This constant burning and aching has got to be taking a toll on our bodies as each day passes. I too have gained at least 20lbs in the past 2 years only. Now I'm in a losing mode.....who knows why? Crazy. If I remember correctly....the pain represents inflammation. Inflammation, over years and years, must be detrimental aside from the Post-exertional Malaise, and flu-like symptoms That's my reply
(I'm glad I didn't accidentally press the "post reply" button too soon on this post!) Sorry about the earlier post Cort.

Have you done anything specific to lose weight? I have been gluten free for months but it has not had any effect.