Combating Debilitating Fatigue

[dizzygirl]

hi IM wondering how you folks combat fatigue..and by fatigue i feel that the word "fatigue" is an understatement in what im experiencing...

Im gettting down right exhausted just from trying to chew food...here a few wks bad i reached short distance for toilet paper in front of me.. and it was like i was reaching and picking up a hippo or something... i was irritated in at the level of exhaustion that i felt from something so simple...

I spoke with my pcp yesterday about the level of fatigue or exhaustion .. and he said there really isnt anything that he can give me to try.. b/c of all the other issues that i have going on..due to the complexity of it all..

he said there are stimulats available but that those would not be a good idea for me to try,... and try and hold out for my Rhuemy appoint in august.

So I feel somewhat desperate here.. in asking for pointers.. b/c i can feel the fatigue in my muscles so bad its unreal. and im wondring what on earth has triggered it to get so bad....im trying to keep as active as humanly possible... but my activety level is frigtenling low...i feel like im sleeping my life away.. i try to fight the urge to sleep and in the end only end up sleeping more.. or getting more OI symptoms if i dont give into the need for sleep... it makes me want to cry...where has my life gone! its gone to the sand fatigue man :/

any advice is greatly appreciated

thanks a bunch

[nichob73]

Hi, I experience severe fatigue also debilitating, weakness also. I put it down in my opinion just lack of fluid, if you think how much IVs help you. If you have more volume continously which we obviously do not have your heart cannoy function properly your brain cannot function your cells cannot function. Do you have any mitochondrial problems. Also I have had people say the weakness may be enteroviral and i have no treatment

May i ask a question were you reasonably red faced before your illness and now pale?

I have noticed there is not a pale face icon

[Rachel]

Dear Linda,

I'm sorry the fatigue is so bad. I wish I had some good advice and help to offer, but I can't think of much. Incase any of this helps, though, I'll ramble a bit...

I've had severe fatigue (you know, the fatigue that is beyond all fatigue) at times, but it has never lasted as long as yours has been. I've had days/weeks where I've been bed ridden. I could crawl the 10 feet from my bed to the toilet, but that was all. I couldn't leave the room, could hardly eat, and many times couldn't even watch tv because it was too hard. The only thing that ever helped that was sleep, rest, water, rest, gatorade, rest, a little bit of food, rest, and more rest. I know that most doctors wouldn't not allow a patient to stay in bed so much, but when you can't physically get up, you just can't do it. And when you're home alone it is even harder.

Can your boyfriend or friends come over to help you at all? Help you in the bathroom, or help you out of your bedroom into a recliner? Even if you're just moving from the bed to a recliner, at least you're moving. And the stimulation of someone there can help to keep you awake when you need that.

Have you ever tried Provigil? I know that it helps some people to be more alert/have more energy. It did help me a tiny bit during the day, but then it made sleep almost impossible the next night. So Provigil wasn't a good option for me. But perhaps it would help you.

The DINET "What Helps" page says that "Cerefolin is a vitamin supplement that may help patients combat fatigue and feel more alert." I've never tried it, though, and haven't heard a report from anyone who has. But maybe it would be worth looking into.

Sometimes on my very sleepy days when I can't seem to wake up it helps to prop up in bed and drink some coffee, tea, or herbal tea (whatever your body can handle at the time). Even if there isn't caffeinne, just sitting/semi-sitting and drinking something can help me to wake up. And it helps even more if there is something to watch on tv, radio to listen to, or someone to talk to me (not talk with me as I can't talk right away - it takes too much brain power that I just don't have with all the fog at that time).

I have no idea if any of those ramblings will help or not. I've had the severe fatigue, but not for as long as you've had it, nor with some of the other symptoms you also have. Definitely check with every doctor who will talk to you. Pick their brains and see if you can figure out what is going on. I sure hope you can get the help you need.

I'm thinking of you and praying for you. Take care and make sure to keep in touch and let us know how you're doing and what the doctors say.

Love,

Rachel

[Sushi]

So sorry about the fatigue. Most of us know exactly what you are talking about. I discovered (after a month) that clonodine was actually causing much of the fatigue--it just wasn't for me, even at the very low dose I was taking. Have you been taking it a long time?

Now I am taking adderal, which helps a lot, but you may have conditions that prohibit that. Wish you the best.

[Ernie]

Hi Linda,

I need to sleep 12 hours a day with a CPAP.

[persephone]

Hello Linda, wee hen! I've had this lately too. My mum is forcing me out of the house each day, even if it's just aimlessly wandering around the supermarket. Get your boyf and folks over if you can- just to get you out and about- it hurts but it will help. I have noticed that my joints hurt MORE when I stay put, but it's important to avoid overdoing it as well. Strike the balance!

Haven't heard from you in a bit. I'm off Myspace pretty much as it attracts all sort of crappy viruses these days. Get on facebook, woman! No viruses on there! and easier to navigate.

Loads of love, keep in touch xx

[lthomas521]

I pretty much accept the fatigue as a given and ruthlessly prioritize my activities. Okay, so I prioritize them badly and end up wasting my energy on my job and shortchanging my personal life. But at least I have health insurance for the time being.

Besides prioritizing, it helps to figure out lower-energy ways of doing things. For example, make out the shopping list but let someone else do the shopping. Sit down to do the preparation work for cooking. I find it handy to use a crock-pot, because I can just put the ingredients in and turn it on. No standing.

You might find it helpful to trade chores with other people. Let them do the standing up chores, you do the sit-down ones.