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Fatigue
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Ladybug914 posted:
Hi Dr. P,

Well for me fatigue dies not mean that I'm feeling sleepy, it is more a feeling of being completely drained of energy. This may seem a strange analogy but I keep thinking of a sponge that is full of water then it is squeezed all of the water out of it until I get the very last drop.You feel weak and sad.

Ladybug914
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dollbug responded:
Hello Ladybug***MiMi in NC...I just wanted to tell you that our Dr. P is no longer a part of our FM support group. He has been gone for over a year I think. Actually I am not sure when he left since no one bothered to inform any of us what was going on at the time. I do know that WebMD had some major changes and we lost both Dr. P and the other guests as well. We also lost our moderator, Caprice.

It is sad that they are no longer here but Dr. P had a lot of discussions and they should be able to be found under *tips or resources*.

I do want to tell you that I also have the *chronic fatigue*...and I have NOT found anything that has helped it. The odd thing is that some days are better than others....(thank GOD for this). I only wish I could figure out why. I think a lot of us FMers deal with fatigue.

I am searching trying different *tools* and *researching* things in hopes of finding something that will help this.

Take care.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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meg_k replied to dollbug's response:
Ladybug,

I second your comment. I have several good friends who are physicians (though not FMS experts) who for years have been trying to convince me that it's the medications I'm taking that are making me tired. (Anti-depressants, Neurontin, etc.) I keep telling them that the meds do make me sleepy/drowsy, but the fatigue that goes with Fibro is something else entirely. They seem to have trouble (as do many) understanding that sleeping may improve (but doesn't cure) the underlying fatigue of FMS.

The wrung-out sponge analogy works for me. I think of it as an internal meter I have that's set to a different level each day (in other words I can't predict it). When my energy use for the day reaches the top of the meter, everything shuts down until I can rest/meditate, or possibly until the next day.
 
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missist replied to meg_k's response:
I agree--it does help to sleep well, I've been sleeping much better lately--due to meds. LOL. Not cured though and the odd day still comes along when I am just wrung out, dry and drained. Sponge is perfect analogy.
 
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kandscreeley responded:
For me, it's tiredness and fatigue. For example, if I let myself, I could sleep all day. Do you guys find the same thing? However, on the fatigue side, it seems to me like my body is just much heavier than it should be. It takes so much more effort just to lift my arms or legs or walk.
 
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meg_k replied to kandscreeley's response:
kandscreeley, I know exactly what you mean! Sometimes I'm feeling fine and then out of nowhere my limbs feel like lead. It's like I'm so tired inside, my brain can no longer make my limbs move. I almost can't feel them...if they are moving there are not moving under my direction because there is no way I have the strength or stamina to make that happen.

I can definitely sleep a lot, too, if given the time. I agree missist -- meds make me drowsy!! I wonder if we have a lot of "sleep debt" if we have spent a lot of years not sleeping well. I get a little worried about where I'm at depression-wise if I am sleeping all the time...something to watch out for.
 
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dakotaspirit1957 responded:
m like that sponge... but instead of empty i turn to heavy rock... my whole body just gets weak and heavy... the only thing i can do is sleep when this happens... resting doesn't get it... my hypnosis and meditation doesn't help... the problem is i sometimes have to sleep for 3-5 days before i am my old self again...

the thing i find strange though is doing a time study i found out i crash like this with and without serious pain... even with good sleep patterns before it happens...

they have done 3 sleep studies and one lasted through a 4 day sleep... when they woke me for the wake up times i immediately fell asleep sitting up... we even tried to have conversations to keep me awake and i fell asleep during them... they thought it was narcolepsy till they tested me on a good strong days to follow... i was energetic and showed no need of sleep... and that was after a string of and during a string of bad night where i hardly slept... due to pain...

fatigue can be so mysterious... and i agree we may become drowsy with meds but fatigue is little to nothing to that... needless to say... i left everyone itching their head in confusion...

i hope at least you don't feel alone... we are in this mess with you...

take care... love... jan/dakota
 
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bette_kaffitz responded:
Hello all, for me it is as if someone has disconnected the power cord. It is just that sudden. I'll be moving along with my mind on the task at hand when I just have to stop.

I've been known to leave the grocery store, go to my car, and lie down in the back seat of the minivan. I keep a pillow and afgan there for these times. (As you can guess, I try to con hubby or son into going shopping with me.)

A few times in a mall, I have had to find a bench and just collapse. People stop and ask if I am all right. Of course, I'm not, but I say I'm O.K.

At home, it has happened in the shower, while standing at the kitchen sink preparing dinner, and while choosing clothes to wear. There's no rhyme or reason to it.

One of the reasons I stopped pain meds is that they do make you feel tired. But tired is related to sleep. Fatigued is related to muscles that just refuse to hold the body up any longer. I don't think my pain level is higher without oxycontin, but the fatigue is still there.

Bette
 
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booch007 replied to bette_kaffitz's response:
Bette I so hear this. I was shopping in the health food store and couldn't get past the register area. The clerk went and got the supplements I went in there for and I had to use all my strength to get back to the car. My motor just turned off.
I don't even attempt a mall. That was when I asked for the handicap sticker as I couldn't get back to the car at times.......

How do you explain that to people looking at you? Ha! He was great and I knew he looked at me and thought "she has issues".

As we read Starlanyl's work though don't you see the energy needed for the muscles in this tightened jacket of fascia....that a trigger point is constantly using up energy for the whole muscle......I can see this being a perfect reason for body failure, sponge wrung out....power cord pulled...motor turned off.

Hydration over time helped so much of my function, but I am still loaded with these "bee stings" TrP's. I have 2 in my hips right now that will challenge my legs for sure...so no major walking for me....It is so complex....it can be overwhelming even for us to help get ourselves better tuned.

I was so bad in the past I was going to quit...leave...kick the bucket. Glad I didn't as so much in my life has happened and I am here for it. This can truly bring you to a bad or desperate place. .

I was told they lost one person on the board years ago and that is how Friday roll call started...to keep an eye....
My neurologist also lost someone for the overwhelming challenge of this all. .

Well I just wanted to bring Starlanyl in this and say that many calories and energy usage is being taken away from the muscle which lives in a tight jacket if you go with her research.

Thanks for listening, Nancy B
 
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meg_k replied to booch007's response:
Booch007, I know that feeling of people out in public looking at you like "What is wrong with that person?!?!" when the energy collapse hits.

I really appreciate your observation about trigger points and I believe it 100%. When your energy is depleted, you can't waste ANY -- even if trigger points only take a few watts away! Which is why I try not to waste emotional energy on things/people I can't change, because that depletes you, too.

My hubby wanted me to rent a cart rather than a wheelchair at a recent outing because it gets to be a lot for him to push me around for that long. (Despite the fact I am light as a feather!! Ha ha.) How can I explain to a person who does not have FM that I am too tired to use a cart?!?!?
 
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booch007 replied to meg_k's response:
Meg,

Sometimes you can't. No one understands the bodies we are living in......just remember though, the less you use your body the less it will give you.

Each thing I do I think of as physical therapy and muscle maintenence. Even if I pay later. I alternate muscle groups and am mindful of the the stretch and use being done. NOTHING is taken for granted.

When I ran out of gas...it was earlier in this and I don't do that much OUT of the house to get that way now. You know you.

I can do quite a bit with a cart. He may also have a stigma with the chair thing. It is a tough place to be in.....but do what you need to do.

Remember a body in motion stays in motion just like the commercial says.

And "If you don't use it...you lose it" that one too.

. Take care, NancyB
 
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Anon_2912 responded:
For me my fatigue is described as "my brain is NOT tired, just my body". Although my body tends to stay hyper..I don't nap or EVERY feel drowsy...I don't drag myself to work, heck I have to be in at 8am but always show up at 7:30..It is just that times I can feel like everything moving in slow motion, although it is not...I think my brain is just hyper therefore my body will not rest.... and I so much want it too....

I have dealt with insomnia for about 20yrs now...I developed mine due to thyroid storms.

I currently take 10ng Ambien, with an OTC maximum strength sominex, and sometimes 2 Advil PM.

I usually sleep in increments of 2hrs without waking up.

I don't take any type of Fibro medications for the very reason of the unwanted side effects. I do take ibuprofen 800 for my muscle/bone aches.
 
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zippdee7 responded:


I am with you on that. Tried to explain that to my family for years, and still doesn't get it. I'm sooo.. tired right now. Just want to lie down, and I'm at work after being on vacation last week.

Keep you hand in God's hand and he will keep you in perfect peace!
 
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Anon_2912 replied to zippdee7's response:
Yep agree..

God promised a safe landing NOT a calm passage..
 
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bette_kaffitz replied to Anon_2912's response:
When I was first diagnosed in 1990, the rheumy was going out the door when he turned around and asked, "How are you sleeping?" Ambien was new then. Boy, did it work!

Somehow, along the way, it no longer works for me.

I'm usually asleep by 4 or 5 A.M. I go to bed around 10 P.M. There's a lot of time in there to read, do crosswords, or stare at the ceiling.

I make myself get up around 7 A.M. most days, but every now and then, I don't wake up for several more hours. I only set an alarm when I have to go out in the morning.

A good night's sleep? What's that?

Bette


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