Fatigue, what does it mean?

i have had cidp since dec 07, about 8 months…
kind of new too– i know something of fatigue–

if you’d like to be in touch– i’m around–

alice

skype: ad0237
yahoo msg: ad0237

The definition of fatigue is something my neuro and I have discussed — one time I mentioned that the fatigue was less but that I lacked stamina. She asked me what the difference was and I said that lacking stamina means that I have enough energy to start doing something but give out before the task is finished. Fatigue is the bone-gnawing lack of energy that means I can’t even start the task. Lack of stamina is brought on by actual activity; however, I can go to bed fatigued and get up the next morning still fatigued, without doing anything more strenuous than turning over in my sleep (although, depending on how I’m doing and how comfortable my dogs are, that can be very strenuous :D).

Best wishes in the battle,

Deb
London

BTW, fatigue can hit at any time. I’m sitting here at my desk at work; I came in quite energetic and the only thing I’ve done is made myself a cup of tea and checked my e-mail, and all of a sudden boom! fatigue. Suddenly all the energy I’ve ever had has drained completely away and I feel like a wet rag. Blah.

I get both fatigue and stamina. One day I can wake up and if the weather is right, I slept okay and right after my B-12 injection, I get a bout of energy. Just like yesterday morning, I had energy and was able to be very productive. Had B-12 shot the day before and slept well. Then to suddenly feel fatigued. But the day before which was the day I got my B-12 shot, I was suffering and trying my best to be functional.
Then I get days where I lack the stamina. Just can’t function that day no matter how hard I try. Trying to be productive but my body is taking constant rest periods every 5 minutes.
Then the fatigue I get makes me feel like I am a zombie. Will lay in the recliner all day. Feels like I am a cancer patient or have severe leukemia and totally can’t do for myself.
Take me to a grocery store on a day like that and I am struggling to get down the isle. When I get that way too, I feel like my heart is being strained and have to sit down a minute trying to gain some strength back. Will not eat well on those days either.
Mine comes and goes. Will go a week suffering to a week trying to be functional to totally non functional.
Also noticed when I am functional I am trying my best to get caught up in my home and then after I get caught up, I have the relaspe all over again!
I too believe that when nerve damage is being active killing off more nerves that your body is straining itself everywhere else which causes the fatigue.
On days like this, I wished I was 27 years younger before I even started getting badly sick. I was very active back then.

Wow Linda you explained that so well I thought you was talking about me. I could have never explained that feeling as well as you but I fell that way all the time. Today I am just now waking up at 2:30 in the afternoon and could go back to sleep right now . GRRRR it is soo miserable. I actually feel like a loser most the time because I cant go like I di before I am now going to a counselor for depression and it seems to be helping me some. so I hope that everyone is getting all the rest and help they need to keep going despite all the hurdles we seem to have to climb over daily.

Boy oh boy, Fatigue, lack of stamina, just add severe pain, and I am there !!!
I think that physically the fatigue and stamina thing results from less muscle fibers available to do the job. The more demyelination occurs, the less muscle fibers will function. I think Lee Spurgeon posted a really neat synopsis about that.

He posted studies showing that it really didn’t take much muscle loss to really affect function, and thereby stamina. If you had a 25% loss in neuro-muscular connectivity through demyelination, you would suffer somethng like 50% faster reduction in performance. Meaning that less available muscle fibers have to do so much more work. Correspondingly, you get tired faster and recover slower.

IVIG seems to help improve the neuromusculars quicker. People gettheir strength back before sensory improvement. Cortico-steroids seem to do the same thing. For me, I feel so much better physically when I drink my herbal mint teas.

Have a great day !!

2nd wow!!

Remember I am the caregiver of Bill. Our last company left on Saturday and although I am just the caregiver I slept thru the morning. Bill slept 10 hours, read the paper and went back to bed. He slept most of the day(this is Monday)
I remember Saturday we both took a nap(I never took naps during the day until his disease came roaring by plus all the company we have had. I know I worked on the clean up on Saturday and did more on Sunday but somehow he and I slept half of Monday away to the point that I really thought it was Sunday.

I couldn’t believe I did not know it was Monday. That was the day I had planned to put all his papers on cidp in order and get them copied for the Cleveland Clinic . We leave on Saturday. Instead I was washing cupboards down . What a time to do that.

I always felt Bill’s fatigue was mostly depression also but I do not think so now.
Keep in mind that we have had company at least 5 times from July to now.
Most of them relatives. 7 just left but three were children and that is what I enjoy the most. I always miss my own grandchildren even after they leave but these were our neices children and very enjoyable. Our own children have been very helpful as Bill cannot seem to do much of anything because of fatigue. He does not nap while company is here so he sleeps alot once they are gone.

The bed and breakfast is now closed for the season until Thanksgiving when I get to see my own 5 grandchildren. and their parents.

So I truely understand your fatigue.

All smiles-Hi-let me add that I agree with Dick and Deb in London gave the perfect explanation of fatigue and lack of stamina. My neuro told me from the beginning in 2000 dx with cidp to “rest when you are tired”. Sometimes that does means all day if that’s what it takes-hard to accept that you just can’t do things like you did before gbs/cidp; I believe acceptance of this helps you focus on the positive side better. I feel best in the morning, on my good days, and have the most pain and absolutely no stamina at night. I maybe use different terms that my friends and family understand,” I’ve lost my legs.” Then they know I am done for the day=0 stamina. Less stress with having home ivig versus out pt hospital ivig has proved to be more successful for me.
And finally to simply answer your question of what fatigue means to me: In the beginning I still tried to keep up with my friends ( they walk faster, eat faster, talk faster, etc. ), but I was just too tired to try anymore, and now go at my own pace-less fatigue in the beginning and with luck more stamina in the end. My really faithful friends(post cidp people that didn’t distance themselves from me) slow down with me and we have a great time. And I have some really great new friends.
Good luck on your journey.

Right now I’m willing to try anything! Yes it can lead to depression. I have been very depressed these past few months after my surgery. Worst part with me was getting surgery because I had 3 bad disk in my spine and right after that surgery….except for being slow and sore, I was getting hope again and felt pretty darn good. I suffered with a back injury after getting backed into in a parking lot by an SUV and they told me it was soft tissue injury. Got fed up with the doctor because he was not listening to me and went to another doctor. They did CT Mylegram and found 3 bad disk. So they did surgery on May 14. 2008. 3rd week, I got really fatigued. Cancer feeling fatigue and the next week my nervous system went totally crazy. Parkinson type tremors in my hands and arms and shoulders. Carpul tunnel pain began and my legs and hands were on fire. Ever since that happened the fire pain has not stopped. And then the nerves in my body feels like I have a vibrator inside my body doing a buzzing and vibrating thing. And then I get this bee sting kind of pain! I think that is when a nerve blows it’s light bulb causing a really nasty sting.
After my surgery, I was all excited about finally getting better and having my life back. Never realizing that the surgery was going to trigger this mess! Of course I did not know what CIDP was either. Been in my house 2 years staring at walls from the back injury to get all excited and think I’m going to get better and then don’t! Actually am worse now than before the surgery. I will be honest with you all! The depression after that kicked in and I have been severely depressed.
I felt like I opened Pandora’s Box. Every now and then I sit there in my bedroom and start thinking.. Do I really want to live this way? Suicidal thoughts! I try to fight those thoughts and put my mind on something else. And I try to fight the depression. It’s a clinical depression is what it’s called. Meaning we are not Bi Polar or have any kind of Mental Illness. Our depression is set off because we are sick with CIDP. In my case Systemic Lupus and CIDP. Anybody that is chronically ill can go through this type of depression. Seeing someone is a good idea if it will help. Medications that help depression sometimes help. Just depends on how severe your depression gets. Ohh! Some medications can also cause depression, so double check your meds and if you see depression is listed and then let your doctor know. They may have to change your meds because some meds can cause a person to get suicidal thoughts or severe depression.
You know! I wished I was a scientist I would devote every hour I had trying to find us all a miracle cure! None of us need to go through this. I am praying my CIDP can be given IVIG’s or Plasmaphersis and hope it’s soon. Some of us get lucky and get diagnosed quickly while others sit in limbo waiting to get diagnosed. This Limbo stuff is not fun! I pray we all get well and I pray for a cure to end this mess!

Hi allsmiles (btw – cute name!)

I think that we have all had those days when we have stayed in bed all day(or at least felt like it!). I have days where Saturday starts at 10:30am – a nap at 3 and sleeping at 9:00pm!

That might be a function of a relapse. Or it could be that your energy levels are low (or your iron levels). Try and get outside abit, take a short walk or do some stretches. Just listen to your body, I guess.

This thing is insidious, though. I got up at 8:30 this morning after working yesterday, felt pretty perky when I met my husband for coffee, went home and did some chores, and by 4 — let’s just say, perky was long gone. I am totally exhausted, and could happily go to bed until tomorrow.

Do talk to your neuro. I found that trying out some Pilates has helped alot in terms of energy and strength.

Take care
Debs

Hi Deb! What are pilates. Never heard of that before. Now you have me curious! LOL! I wished I could sleep! I miss sleep! Here I am up at 3:14 in the morning in the forum. Will eventually go to sleep but probably won’t get but a few hours. Then during the day will nod off in my chair.

HI,

A noteworthy topic in understanding fatigue vs stamina. My experience on this topic is very very similar to what member eightplusfive has talked about.
I have actually stated to my doctor in exactly the same words during my time when I was under initial repair and strengthenging. I have less fatigue but not the stamina.

During active denervation, when I would get up and walk, the first few steps would go OK, then I would go into a severe limp (Fatigue) from 3 deficits. LT calf very weak, Rh knee buckling and RH hip unstable. that would contiue and I could walk for maybe 50-100 yrds only, become exhausted (stamina) and need to sit. If I sat for a few minutes, get up again, the first few steps went OK again, then blown out again.

Upon waking in the morning, would feel good for about an hour then feel like head sleepy and bottom out at the usual place. take about a 3 hr Zonker Nap every day.

During the remission phase, as each day and week passed, the number of steps before the limp started began to increase and the amout of work strength extened and nap time reduced. The fatigue issue got better for about 3 months before the stamina improved. I still do a 1 hr nap every day at around noon, then OK til 9 or 10 at night. I can miss a nap on a day if needed. In remission for 6 months now and can walk about 1/2 hr without the limp, then it starts but I can keep going for a while (1/2 hr), If I sit for a while (5-10 min), I recharge a lot better and last longer.

I had a very hard time understanding if things were better or worse. I would be positive and think I was getting better, but actually I wasn’t. Once I have experience both, I now know the difference and have some level of confidence that I think I can detect the direction I am going. Sorry about the length of this, its hard to short and sweet yet convey.

Hi Linda

Pilates was developed by Joseph Pilates in WWII (I or II, can’t remembeR) as a way to rehabilitate soldiers who were bedridden. It is a series of exercises that involve developing your core strength — the muscles in and around your abdomen. He developed a machine called the reformer, which is a series of pulleys and springs — you use resistance to train your feet, legs, arms and core. (lying down!!)

There are a bunch of exercises that you can do at home without the machine, using a swiss ball, or just on a mat. I have some serious balance issues because of the lack of sensory input, and I find that the Pilates really helps with it. Having a strong set of core muscles also helps your posture immensely (great because of all those years of guarding from the pain), but doing the exercises does help with the stamina!

Cheers
Debs

Thanks Deb for the response back on the pilates. I was wondering what that was? I ordered one of those exercise CD’s and inside it was a rubber type of tool for stretching. I tried that CD out but could not do it myself because of balance issues. But just thought this would be a great tool for excercising my body while in bed and sitting. I also ordered a bycicle pedal set that you can sit in a chair with and pedal away trying to help with my leg muscles. Just started doing that some. Going to try everyday though to get at least 15 minutes in a day to build those muscles up. And going to look online and see about other exercises I can use while watching TV and laying down some. I have alot of problems walking. I can barely go! So this may help me alot! Thank-you!
Tim! Good to see you in here again! Was wondering where you were at! But know your mom has been very sickly! Still saying prayers for here! Hugs