Very Tired

[Derek]

Hi fellow sufferers
Has anyone experienced the type of tiredness that plagues me with my WG. I also suffer from Bi Polar depression which also can, if you let it, duvet dive. My doctor I see for the bi-polar says that it is difficult to know how much of this tiredness is due to WG or bi-polar.
I have had bi-polar for 30 odd years and I know how I feel with it but the tiredness I suffer from is different. The doctors do not listen though. I know my own body and I know this is not due to bi-polar or its medication.
The tiredness I get is the same everyday and when it comes it is as if someone flicks a switch in your head and you cannot think clearly and you suddenly feel overpoweringly fatigued. When you try to walk the effort need is disproportionate to what you want to do and it seems like walking in glue. I have to lie down and sleep. I do a lot of walking and do three 1 hour studio aerobic exercises a week. When I do not feel tired.
I hope I have not sounded neurotic or vague but it is hard to write about things when you do not have the all the answers.
Hope you all are feeling OK for today
Derek

[andrew]

Hi mate....
We had a discussion about 'brick walls' a week or two ago. Sounds like you have a doozy of a brick wall, maybe even two You're not being vague and definitely not neurotic.

You have WG with the added complexity of Bi-Polar thrown in. I'm around someone with BPD every day and I know what you're talking about with the tiredness. Good for you getting exercise though as that's one of the best things you can do for BPD/Depression. WG though will get in the way as I'm sure you're aware. The secret (if it's really a 'secret') is not to push yourself. It'll just make it worse.

As for the specific WG tiredness well I can't say that it hits me precisely the same as you but when I'm tired...and I mean WG-tired...there aint nothing stopping me from hitting the sack. I turn into a zombie and sleep so deeply pretty much nothing wakes me up.

Another important thing to do is to accept the fact that you're tired when you're tired and take a break. Sounds like you are though so I'm probably preaching to the choir

Oh...is there any possibility that the meds for the BPD are conflicting with the meds for the WG?

[Sangye]

Hi Derek,
It's impossible it is to describe the type of fatigue we get. Others (including docs) usually think it's just very weak, or very tired. Holistic doctors can tell the level of depletion, though, and that's brought me a lot of comfort-- knowing someone believes me! Acupuncturists, in particular, can measure your chi and really get it. My last acupuncturist was always fooled by my appearance. He'd say, "You're looking better today!" Then he'd take my pulses and say, "Oh, boy. Wrong again!"

My Wegs doc at JHU understands. I was describing it one day, and said, "It's like I'm..." He jumped in, "Empty." Bingo!!! Ten points for the gentleman in the white coat!

[Doug]

"Empty"! I've been trying for years to come up with a specific word to describe malaise to people who've never experienced it. Thanks, Sangye!

I'm farther into this problem than the three of you, and am in remission (for at least the last three years). I can't speak for all, because some of us have cases that sound like they never truly get into remission after years of treatment, but, in my case, after I got off the immunosuppressant drugs and Prednisone, I started to feel much better. The specific time I woke up and didn't feel like getting out of bed would take a miracle and superhuman effort, not to mention three sticks of dynamite, is lost to memory, but when it hits you, you may even cry, you feel so good after so much misery and "emptiness"! Find joy in that moment!

Take heart, be patient with your body, be positive, follow your doctors' instructions to the letter, become an informed advocate for your own treatment, take your medications like your life depended on it, continue your exercise (with Andrew's caveat!- don't over do it; you need to become very aware of what your body tells you), and know that we are here to cheer you on, to commiserate when you hit a wall.

p.s. Derek- I hesitate to speak for Andrew and Sangye, though I feel they would agree with me: feel free to pass on our experiences to your doctors as further evidence that they are- what's that pungent expression? "full of ****"- when it comes to the source of the fatigue you try to describe. Haw! Doctors are full of book knowledge and varied levels of specific knowledge from other exposures to Weggie patients, but they tend to fall short on what it's like to be a Weggie. It's our responsibility as Weggies to bring them up to speed. You've tried, but now you have three Weggies saying "Derek isn't a basket case neurotic. There is something to the fatigue he has outside of BP and medications." Good luck!

p.p.s. Cool! When Andrew designed this website, he installed coding to deal with "naughty" words! I used a naughty word, but the program substituted the four asterisks, above. If you don't believe it, type in a few naughty words of your own the next time you post. Cool!

[Sangye]

Oh, no. I can see what's coming from this group-- a BUNCH of posts filled with asterisks. Too funny, Doug.

Yours is good advice from someone who's been through it and gotten to "the other side." It makes me feel better just knowing that's possible.

[Cindy M]

I agree with the "empty" for being exhausted. Sometimes you look fine but what you are feeling inside is not the same. Just wondering if anyone has been given any timeline for remission to kick in if that is at all possible. I know....stupid question. I am constantly asked. I have been on prednisone since Jan 15th and have not been working since the end of November/08. Not sure when I will be going back to work because I am suffering alot with my eyesight....red eyes, blurred and double vision, mass has developed beside my right eye. It takes a good hour when I wake up to feel like I can focus somewhat on things. Somehow I feel lucky because WG has only effected my from neck up.

[crackers]

i suffer quite badly from fatigue.any physical activity wipes me out.it's as if someone opens a tap and drains off whatever energy i had.walking with concrete legs is a pretty accurate description of how it feels.the need for sleep is overwhelming and non negotiable,trouble is when i wake up i don't feel refreshed just not tired enough for sleep.hope that makes sense.
john.

[Sangye]

It makes sense to me, John! I can't just rest or sleep and "bounce back" either. It's like the bank account is empty. It takes more than not using the account to fill it back up again. Wish I had the magic deposit slip!

[crackers]

sangye i used to try to explain it by saying that " normal " people wake up in the morning wih a full tank of petrol while i wake up with just a gallon in mine.if at some point thru the day the "normal " tank needs a top up then a two hour nap will do the job,whereas my two hour nap leaves me with just fumes to run on.but if you come across that deposit slip will you please send me one.
john.

[Sangye]

If I find that deposit slip, I'll make tons of copies and mail them out to every Weggie!

I recently discovered a great way of explaining what "empty" feels like. (I have a 4 cylinder car, so this may not make sense to someone who only drives V-8 engines.) You know how you accelerate to get up hill and sometimes you can press the accelerator as much as you want but there's no response from the engine? That's what we experience. My friends have had a glimmer of understanding with that. But you know, before we had this, we couldn't have understood it, either.