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Derek
04-23-2009, 07:18 PM
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
04-23-2009, 08:02 PM
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 :D

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

Sangye
04-24-2009, 01:18 AM
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
04-24-2009, 02:57 AM
"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
04-24-2009, 06:13 AM
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
04-24-2009, 07:33 AM
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
04-24-2009, 08:42 AM
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
04-24-2009, 10:03 AM
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
04-24-2009, 10:44 AM
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
04-24-2009, 10:52 AM
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.

Doug
04-24-2009, 12:46 PM
Cindy- Everyone who hits remission hits it at a different interval. I felt pretty good (i.e. "not too bad") months before my doctor agreed to call my state one of remission. I hope you achieve it soon, but recognize that your body has suffered a serious trauma, even if you look pretty much the same from the outside.

You know what happens when blood supply to a reattached, severed finger can't be reestablished before tissue starts to die: the dang thing turns black and breaks off! (Or something like that!)

Try to visualize what happens when the disease process damages tens of thousands of small and medium sized blood vessels all over your body. Once the drugs arrest the over-active immune system, stabilize your system (well, you hope!), deal with the inflamation, then your body has the problem of cleaning up the dead and damaged cells. It isn't a pretty picture! It takes time, more for some than others.

Try this: ask your primary care doctor what he or she regards as the point of remission for WG, then use that standard as your guideline each time you learn blood and urine test results. I bet you'll have some interesting conversations with your doctor if you do this! I know some of us use the "How do I feel?" standard to help judge when we've hit remission, along with the medical judgement of our doctors, but you need another way to allay your anxiety and frustration, I sense. Question your doctor each time on each point. (Don't tell him or her who told you to do this! Haw!) Have your doctor explain the significance of each deviation from "norm". I've done this with my doctor, on other issues, and it helps you feel in control of this BFF! It also establishes you as a member of the team working on this thing that happened to your body.

Cindy M
04-24-2009, 02:41 PM
That's a great line "It also establishes you as a member of the team working on this thing that happened to your body." I never thought of it that way. I guess I really don't understand this disease, all the different ways it can attack you. I know it effects your blood vessels, but I am a very visual person so unless I can actually see pictures I am only guessing at what happens. What exactly causes the crusting in your sinus's, why my head always feels like it's in a tunnel, the poor and double vision. Alot of questions.

Carol
04-24-2009, 05:14 PM
My "magic deposit slip" is meditation - I try to fill one out each day.

Derek
04-24-2009, 05:46 PM
Hi Sangye

Thanks for your message it seems to have started a good debate on tiredness which
has been very helpful.

Derek

Derek
04-24-2009, 05:50 PM
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 :D

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

Thanks for your message. Where would I find the discussion that was had on brick walls you mentioned.

Thanks. Hope you are OK for today

Derek

KtheC
04-24-2009, 09:09 PM
For me, when I had just gotten out of the hospital I did get tired and end up napping. When I finally got well enough to start excersising again this diminished. And now that my metabolism is pretty much back to where it was and my work outs are full strength the tiredness had gone away. And to make things a little better since getting off the prednisone I am sleeping much sounder at night.

Sangye
04-24-2009, 10:41 PM
Hey Derek, is that a German Short-hair pointer I see? One of my mutts has pointer in her. When I was healthy enough to bring them to a bark park (ie, could chase them down if need be), Lotus used to love to run with the pointers. Her favorite game is, "Lemme be da rabbit." She loves to be chased at top speed. Her body is so beautiful-- very svelt lines-- and when she'd run everyone would say how spectacular she looked. A real little athlete. She's a very "ordinary" looking dog otherwise, so it was always amazing to see the transformation. The pointers were the only dogs who could keep up with her and chase her to her satisfaction. The herding dogs--like my boy Patch-- run with bursts, and she'd look completely disappointed when they'd shift course and try to herd her. "No, no, no! Chaaaase me!"

(Boy,this was really off-topic. Except for the rabbit mention, of course.) :D

Derek
04-25-2009, 12:16 AM
As far as I know it is a pointer. I have changed it now for something more sleepy
for a while.

Hope you are feeling ok.

Derek

Derek
04-25-2009, 12:23 AM
For me, when I had just gotten out of the hospital I did get tired and end up napping. When I finally got well enough to start excersising again this diminished. And now that my metabolism is pretty much back to where it was and my work outs are full strength the tiredness had gone away. And to make things a little better since getting off the prednisone I am sleeping much sounder at night.
I hope one day I get where you are with the energy levels. I have been diagnosed with WG since 1989 and know matter gets done it never goes into full remission but just stays at a lower level and then flares again. Guess I have accepted and got used to it as much as possible.
Keep well
Derek

Sangye
04-25-2009, 12:24 AM
Looked like a purebred pointer to me! I'm really sick today. Got a cold on top of some other mystery infection I've been battling for 2 weeks. Non-stop sweats and I can barely sit in a chair. I'm getting acupuncture in a bit, so I hope that resolves it. It doesn't seem to be Wegs, but who ever knows with that? I can't even drive to the acupuncturist-- had to get a friend. No good. It takes a lot for me to call in reinforcements.

Derek
04-25-2009, 12:26 AM
Looked like a purebred pointer to me! I'm really sick today. Got a cold on top of some other mystery infection I've been battling for 2 weeks. Non-stop sweats and I can barely sit in a chair. I'm getting acupuncture in a bit, so I hope that resolves it. It doesn't seem to be Wegs, but who ever knows with that? I can't even drive to the acupuncturist-- had to get a friend. No good. It takes a lot for me to call in reinforcements.
Hope you get on ok at the acupuncturist.

Derek

crackers
04-25-2009, 01:15 AM
sangye,hope you start feeling better soon.thoughts are with you.
john.

coffeelover
04-25-2009, 07:26 AM
Wishing you well Sangye!
Lisa

coffeelover
04-25-2009, 07:35 AM
[quote=andrew;2117]Another important thing to do is to accept the fact that you're tired when you're tired and take a break.


This is something I had to learn the hard way. It is great advice! Rest when rest is calling!

My daughter suffers from Bi Polar disease and some of the meds she has been prescribed have affected her in this way. She is over 22 years old, so I am no longer privey to her medications (Privacy laws in MN) so I am not sure what she is taking now but she seems to be much better. I will try to ask her what she is taking and if I find out, I will get back to you, Derek.
As with WEGS, though. Each case is individual and all meds affect each person individually.
Lisa

Derek
04-26-2009, 03:30 AM
Thanks for your concern and would be grateful for any info you get

Thanks

Derek

jola57
04-26-2009, 12:10 PM
Hope your are feeling better Sangye. Take it realy easy and rest a lot.

Doug
04-26-2009, 01:46 PM
Same for me. Not very original, but I hope what ever has a hold on you can be worked out soon. :(

andrew
04-26-2009, 01:58 PM
Hi Andrew

Thanks for your message. Where would I find the discussion that was had on brick walls you mentioned.

Thanks. Hope you are OK for today

Derek

Sorry for taking so long. It's in this thread :

http://www.wegeners-granulomatosis.com/forum/new-member-introductions/217-just-diagnosed.html

germaine
04-27-2009, 09:27 AM
Hi Cindy,
Your vision problems worry me. I had an incident of vision loss (in one eye) It was the weggeners, and it needed pretty aggressive treatment. My vision has recovered except I do still have problems with focus. I saw an opthamologist. I also had a scan that showed some problems. Get demanding, don't mess with this. Germaine

Cindy M
04-27-2009, 11:15 AM
I have seen an opthamologist and had a CT scan done. I have a mass that developed on the right side so I think this may be some of the problem. The opthamologist said my vision should be okay once (hopefully soon) I go into remission. I do have an appointment with my optomotrist on Monday so we will see what he says. I can see straight ahead fairly well. It just feels strained all the time and sometimes they are very painfull.