what is your fatigue like?

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ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/29/2009 4:19 AM (GMT -7)   
I tried to search the forums for an answer to this question and couldn't find one, so I'm going to ask it: could you please tell me what your fatigue is like?

I'm looking for really specific descriptions - what it feels like, when it strikes, what happens if you try to push through it, what you can do on a "normal" day.

I'm just trying to get a sense of what is "normal" for the people on this forum, and where I fit into the fibro spectrum.

Thanks heaps,

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 7/29/2009 5:59 AM (GMT -7)   
It's a little early for my brain to be working Ivy but I will try. smilewinkgrin Like so many other things with fibro it varies from day to day and what I'm doing, if I'm doing something that takes a lot of energy of course I run out faster. For example I have four rooms of hard surface flooring which is where we mainly live and I have a four month old puppy that is still not potty trained. If I vacuum and use the steam mop on all four rooms that is it for the day for me, I'm drained and can barely drag myself to the shower. No matter what I'm doing I'm tired before 3 everyday. I don't have a night life, it is spent on the couch watching TV or if I'm real energetic on the computer. My family has started being very accomodating and planning things earlier in the day cause they know I can't do nights. We go to bed at 10:00. I use to love the nights. cry
 
I'm trying to find the words to descibe hitting the wall of fatigue everyday. It's like having all the energy sucked out of you. If I don't quit and try to push through it I get physically ill, like my body is shutting down, especially my digestive system. I asked my doc if that was possible and he said with my digestive system anything is possible. It's not a normal, I really worked hard today, tired that I use to feel when I was healthy. Sometimes if I rest for a few hours I regain a little energy. I make myself take the puppies out to play for awhile every evening between 5 and 6. When they start running through the house going nuts I know they need to go out and run. Depending on what I have done during the day I might have enough energy to walk them too if it is a nice evening and check on my neighbor who is fighting cancer.
 
That is pretty much my life, I try to get a little house work, laundry or run errands done during the day when I have energy and that's all. Every morning I go over in my mind what needs to be done the worse for the day, if I need to go to Walmart I keep the rest of the day light.
 
When I went on the vit D before all the stomach problems started this time I did feel a difference in my energy level and a big difference in my motivation, I was tickeled to death. So hopefully after they figure out what is going on with my digestive system I can get back on the D and calcium. My docs were going to figure out if I could have calcium and D infusion but I haven't heard anymore about it.
 
I hope this helped in some way Ivy.
 
luv and hugs
Marlee
 
 
Forum Moderator Fibromyalgia
 
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Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 7/29/2009 9:01 AM (GMT -7)   
Well...since I'm super new...and probably have nothing much to add.

I slept all of 19 hours on Monday. Every five/six hours I'd wake up...maybe for a few minutes...maybe for an hour or two and then I'd be down again. Even then...all I was looking for was to wake up painless. Still hasn't happened. Yesterday I worked. From 5-9. I was exhausted by 4. I had to get showered and dressed and sometimes just showering makes me so tired I need a nap. I shook it off for awhile and then around 7:30...I was dragging so bad. I took a 25 min. break when we're only supposed to have 15. Didn't mean too but I was trying not to walk where the arch of my feet stretch too much 'cause it felt sort of liking I was stepping on nails. Every few hours every day no matter what I'm doing...I feel so tired...I have to lean back or lay down.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Crohns Dx'd: February 2008.
Pentasa
Fibromyalgia Dx'd: July 21, 2009
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Prenatal Vitamin
Allergy meds


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 7/29/2009 9:37 AM (GMT -7)   
Ivy, when I'm hit with fatigue it's like someone pulled a plug and all my energy drained out of my body.  My arms and legs become very heavy and I'm extremely foggy.  It is frustrating.
 
Last weekend I had a beach party to go to.  For some reason I couldn't get to sleep.  That will happen to me maybe six times a year.  I ended up with only four hours of sleep Friday night and was a lump in the beach chair all day long.  I was soooo tired and didn't want to move at all.  I felt in physical pain just trying to keep my eyelids open.  It's such a miserable feeling so I really try to do all that I can to get enough rest but not overdo it either.  Too much sleep makes you more tired.  You do need to keep going.
 
But, I'm doing far better with fatigue then I did.Ive mentioned a thousand times about malic acid/magnesium supplements, but they really have helped me with energy.  Getting my vitamin D levels helped with energy too. 
 
Also, I am on a sleep schedule.  I am usually in bed by 10 PM and get up between 6:30 and 7 AM  I do get up several times at night but fall right back to sleep.  I have been doing this for years.  I never lay down (unless I have the flu or something like that) until bedtime.  If I ever laid down and took a couple of hours nap, I would never get to sleep that night and it would take me days to recoup.  But, by doing this, I am generally asleep in 15 minutes so this help a lot.
 
I am the best in the mornings.  That's when I walk the dog and run errands or work around the house.  If I get sleepy in the afternoon I will have a cup of tea and that  usually will wake me up again.  I do try to rest more in the afternoon.  By "resting" I mean I'm working on the computer or reading...doing easy stuff.  Occasionally my body will give me a power nap...I'll doze off sitting up for about 20 minutes.  Then I'm good for the rest of the day.  This doesn't happen really often, though. 
 
I hope this gives you a few ideas to help you.  It's not fun being tired all the time.  You don't want to miss out on living!
 
Sherrine
 
 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


JennyBHurts
Regular Member


Date Joined Jun 2009
Total Posts : 23
   Posted 7/29/2009 9:42 AM (GMT -7)   
For me it is like a balloon with a small leak in it most days.  I can wake up and feel ok....but over the course of  the day my balloon is getting less and less air in it.  Sometimes I am completely flat by mid-afternoon, sometimes it never goes flat (Woo-hoo)!  On really bad days, I wake up and it's flat. Those days are THE WORST.  And then add pain to the mix and it's is a bad day. shakehead
 
I also shut down if I don't get enough sleep.  I am physically ill, like I have the flu.  I guess this is pretty common with fibro.....
 
Jenny B


Age 36
DX w/ fibro June 2009
DDD & annular tear at L5/S1
endometriosis since age 18, have had 5 surgeries to date
 
Current meds:
OxyContin 30 mgs 3 X day
Dilautid 2 mgs 1-2 X day for breakthrough pain
Elavil 25 mgs
Zoloft 75 mgs
Lunesta 2 mgs
Klonopin .75 mgs
Protonix 40 mgs
Flexeril PRN
Phenergen PRN
 
I am living in the body of an 80 year old......
 


myjoy
Veteran Member


Date Joined Feb 2009
Total Posts : 686
   Posted 7/29/2009 10:18 AM (GMT -7)   
Interesting that you brought this up today. I'm having one of my worst fatigue days in a long time. No energy what so ever. I started out feeling ok this morning, and went to aqua therapy, but on the way home, I could barely drive I was so fatigued. Upon getting home, I laid right down for a nap. I slept for 2hrs, and don't feel any better.

I usually get about 7 hours of sleep at night.

I have always felt guilty on days like this, but it seems many of you go through the same thing. After 3 yrs I'm still getting used to this fibro thing. It wears me out to take a shower too! I'm going to try and do the dishes today, and that's about all I can get accomplished - if that.

The bad fatigue can even happen on days when the pain isn't quite as bad. It just creeps up out of nowhere. Hope we are helping you out.
DX fibromyalgia 2007, osteoarthritis, obsessive-compulsive disorder OCD, depression, anxiety, sleep apnea, hysterectomy.

fluoxetine (prozac), abilify, trazodone, lorazepam, prilosec, nabumetone, hydrocodone, c-pap machine.


DonniesGirl
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 7/29/2009 10:40 AM (GMT -7)   
Hi Ivy,
As for me, the fatigue is a feeling like my arms and legs weigh a ton. I feel like I just can't drag my body around anymore. The only way to get relief is to lie down for a while, and sometimes sleep. My family is pretty well used to it now, but my kids still ask "what's wrong". :(
The fatigue can hit pretty much anytime, but it is really bad when I try to run errands or shop. Getting in and out of the car wears me out. I try to only go to one or two stores and get everything. If one store takes too long, then that's it. There are days when I wake up feeling like this. But, evening seems to be my best time. That's when I try to work in my flowers or do work on a project I've been putting off.
I hope this helps...

Sincerely,
DonniesGirl
Fibromyalgia, Chronic Fatigue, GERD, Irritable Bowel, Mitral Valve Prolapse, Depression
 
Rx:  Lyrica 100mg 2x, Prilosec OTC, Tramadol, Paxil
 
 
 
Even though the journey's long,
and I know the road is hard,
there's One who's gone before me,
He will help me carry on...


beautymom5
Regular Member


Date Joined May 2009
Total Posts : 84
   Posted 7/29/2009 12:13 PM (GMT -7)   
When I feel fatigued I feel my eye lids are heavy and my body does not want to move. I have had days where my brain is racing but my eyelids are heavy.

I try to take frequent breaks during the day. I also try taking more magnesium and D-Ribose when I can't seem to keep my eyes open.
In the strength of the Lord, I can do all things


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 7/29/2009 3:37 PM (GMT -7)   
Hi Ivy,

My fatigue level varies throughout the day. Some mornings I have have to sit down on
the shower bench because my legs feel like they can't support me. There are days when I
feel like I can't lift my arms over my head to wash my hair, or too tired to shave both legs.
I have gotten out of the shower and have been too tired to dry off. An hour later I might
feel almost normal, able to do some housework and laundry. After lunch I could feel like I
am dragging myself around the grocery store.

I do have good days and usually overdue it because I feel so good, but I end up paying
for it the next day. Pacing myself goes a long way.

I have fibromyalgia along with alot of other stuff and take lots of meds. My vitamin D level
was low, and I was put on 50,000 IU a week for two weeks and now take 1000 IU daily.
Cannot tell if it has helped or not.

I try to listen to what my body is telling me and rest accordingly.

Robin
 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements


SleepyBug
Veteran Member


Date Joined Nov 2008
Total Posts : 1097
   Posted 7/29/2009 4:02 PM (GMT -7)   
JennyBHurts said...
For me it is like a balloon with a small leak in it most days. I can wake up and feel ok....but over the course of the day my balloon is getting less and less air in it. Sometimes I am completely flat by mid-afternoon, sometimes it never goes flat (Woo-hoo)! On really bad days, I wake up and it's flat. Those days are THE WORST. And then add pain to the mix and it's is a bad day. [img]/community/emoticons/shakehead.gif[/img]


I also shut down if I don't get enough sleep. I am physically ill, like I have the flu. I guess this is pretty common with fibro.....



Jenny B


Hi Jenny! (and welcome!)

This is a GREAT description of what my fatigue feels like! Just like a leaking balloon..you hit it right on the head.

For me, the fatigue feels just like that-a slowly leaking balloon and I'm out of get up and go by 4:00. Some days I wake up with no air at all (you're right-those are the WORST!!) and then some days I have a nice full balloon and things are going great and then BAM somebody sticks it with a needle and pops it. That's when the heavy lead feeling comes in my arms and legs.
"The ideals which have lighted my way, and time after time have given me new courage to face life cheerfully, have been Kindness, Beauty, and Truth"~Albert Einstein


Littlesrebel
Regular Member


Date Joined Jul 2009
Total Posts : 163
   Posted 7/29/2009 8:38 PM (GMT -7)   

I could barely drive I was so fatigued so many times. I fall asleep too much. redface

You are in the right forum. I'm so glad to have support here.

 


Fibromyalgia, Chronic Myofacial pain syndrome, major depression, mood disorder, panic attacks, anxiety, personality disorder.


Lefty85
Regular Member


Date Joined Apr 2009
Total Posts : 87
   Posted 7/29/2009 9:26 PM (GMT -7)   
For me, my fatigue can vary. At it's best, I just feel tired, like I haven't slept enough. At it's worst, I can fall asleep completely at random any time I am sitting down. My eyelids are always heavy and my eyes themselves won't focus correctly because it seems like the muscles aren't working right. My limbs feel like they weigh a ton. It's a deep and overwhelming exhaustion. Sometimes my mind can't focus on anything other than how tired I am. If I try to do anything strenuous I often feel as though I am going to pass out.
My fatigue doesn't seem to relate to how much sleep I get. I nearly always sleep at least 8 hours, and I always have to drag myself out of bed. If I didn't, I could just sleep and sleep, all day and all night. But I never feel rested. I almost always feel weak all over. Many times when I am asleep I am still partially conscious and aware of what's going on around me. I have trouble sleeping sometimes, because I'll jerk awake due to pain or a muscle spasm. I don't think that my body ever gets into the deeper cycles of sleep, which, I believe, is why I'm always so tired. It's very difficult, and coupled with my pain, plus my medications that cause some drowsiness, most days it's an extreme challenge just to function well enough to go to work. The only thing that seems to help a little bit is taking vitamin B12.
I hope you find this discription helpful. Take care!
SaraBeth
Fibromyalgia, Depression, Anxiety
***********
Amytriptiline, Flexeril (PRN), Percocet (PRN), Ambien (PRN at bedtime), B12
***********
Be not afraid of going s l o w l y, be afraid only of standing still.
 
 
 
 
 
                                                                                  

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