I can no longer do the things I enjoy or the
things I didnt enjoy. My life exist of mostly
moderate to severe pain and very extreme
exhaustion 24\7. I rarely go see the Dr any
more because I truly don’t have the strength.
I stay home and my life exist of sitting on back
porch, bath, bathroom and bed, thats it 
Hi, my name is Brookelyn and I feel the same way. Not quite to that extent, I can still go out but only for short periods of time. I am going to the chiari instutue tuesday and am hopingfor an answer on how to getcompletely better for good. Im sorry you feel like this; your not alone.
Brookelyn, thank you :). If it’s ok I would
love to keep you in my prayers, that they
will be able to help you. I wish I would of
went to bigger hosp years ago, but I don’t
dwell on it anymore. I use to be able to
see the difference looking back on the yrs
the months, now we notice a difference in
a week :(. I am only 49 and want to live a
active life, but it doesn’t seem to be in Gods
plan. Thanks so much for sharing with me,
today is my first day on. Have a pain free
and restful night. God Bless
Brookelyn said:
Hi, my name is Brookelyn and I feel the same way. Not quite to that extent, I can still go out but only for short periods of time. I am going to the chiari instutue tuesday and am hopingfor an answer on how to getcompletely better for good. Im sorry you feel like this; your not alone.
Margie, I can't do the things I use to be able to do. After reading your bio, I know I don't have near as much going on as you do but I have been told by my neuro that she doesn't recommend that I drive. I can't be out for long periods of time. I can hardly make it to the kitchen and back to my bed without my heart racing and feeling like I am going to pass out. I haven't been to my doctor in a while because she is almost 3 hours away and the ride to and from kills my neck and back and head. I too hurt all the time. It sucks. But I try to look at the little things that each day brings and I try to be thankful for all those little things. I know how hard it is. How depressing it can be. I remember working nights and wishing I could just stay in bed....Now the saying, "be careful what you wish for" keeps popping in my head. All we can do, is what our bodies will let us do. I hope you get to feeling better. And always know that you are not alone!!!
I know this sounds a little insensitive, and I apologize, but have you talked to anyone about depression? Depression is a very common thing for people that have constant and chronic pain. What do your doctors say? What is the state and status of your Chiari? Do you live alone and do you have supportive people around that can help get you to and from the doctor's office? I know this is a lot of questions. Please give us more info so we can better support you!
Carla
Stacey, thank you 
It’s been 3 yrs since I
have drove as well. The main reasons is bc
I would forget where I was going or how to
get home, and it caused so much pain in my
neck and head. I have said the same thing
many times, about be careful what you ask
or Pray for because you just might get it. I
worked 3rd and so many times said the
same thing, little did I know. My Neuro Dr is
2 hrs away and it’s so hard to get to fam Dr
which is 20 min away. I have a very close
relationship which God and he is the one
who gets me though each day after I’ve done
all I can do. I as many of us have, have
learned to appciate the little things as well
because we know what’s it like for health to
limited and change the way we lived. Were
we lived there’s just no Drs that understand
Chiari, FMS or CFS. I had Drs ask me what
a Chiari is. I will keep you in my prayers and
wish you a wonderful night. Thanks again
and God Bless.
stacey said:
Margie, I can’t do the things I use to be able to do. After reading your bio, I know I don’t have near as much going on as you do but I have been told by my neuro that she doesn’t recommend that I drive. I can’t be out for long periods of time. I can hardly make it to the kitchen and back to my bed without my heart racing and feeling like I am going to pass out. I haven’t been to my doctor in a while because she is almost 3 hours away and the ride to and from kills my neck and back and head. I too hurt all the time. It sucks. But I try to look at the little things that each day brings and I try to be thankful for all those little things. I know how hard it is. How depressing it can be. I remember working nights and wishing I could just stay in bed…Now the saying, “be careful what you wish for” keeps popping in my head. All we can do, is what our bodies will let us do. I hope you get to feeling better. And always know that you are not alone!!!
Carla, hi you have no reason to apologize.
That is a very important and legitimate ?. I
went though a severe depression but in the
mid 1980’s. I had physical problems then and
was raising 2 kids as well as taking care of
parents, 2 house fires, bad accident, very I’ll
son, etc. Since then I have went though a
day or week where I get depressed, but with
God leading me I’ve been able to bounce
back. Ok this is were it gets somewhat unreal
and my Dr and have dicuss it many times. I
am now at the point with my illnesses that I
am sooo very exhausted that depressed is
not even a issue, and yes I know how crazy
it sounds lol, but oddly enough it is true. But
I also want to say I’ve had no choice but to
learn how to truly leave it in Gods hands and
that was a very hard thing to learn. A couple
months ago I was waking up in panic attacks
and I ask my Dr if I could go to talk to some
one. I did and he as well as my fam Dr say
they are proud of the outlook I have on life
when dealing with soo much. We found out
it was a med causing panic attacks. As so
many people know there horrible. I’m am
very blessed to have a wonderful and very
understanding husband. I would be in a
Nursing facility without him. My fam is very
supported even the ones that dont under-
stand the illnesses. Ok my eyes are getting
blurry so later I will explain about the Chiari
and health issues. Sorry I can’t finish now.
Thanks so much for caring :). Talk to you
a little later. Wishing you the bless and God
Bless.
Carla Jo Stone said:
I know this sounds a little insensitive, and I apologize, but have you talked to anyone about depression? Depression is a very common thing for people that have constant and chronic pain. What do your doctors say? What is the state and status of your Chiari? Do you live alone and do you have supportive people around that can help get you to and from the doctor’s office? I know this is a lot of questions. Please give us more info so we can better support you!
Carla
i do, i dont have energy to do much, even sometimes standing is a issue, i go to the letterbox and back (and that is really hard work), i sit outside and smoke, reading makes me worse, i watch tv, which is full of nothing, answer ph if it rings (if im not to down in the dumps), i cook dinna and make beds is all the house work i could do, it would take me 30mins to strip my bed to wash the sheets, and make again, i gave up on during that, somedays i wouldnt have the energy to eat and drink, i remember saying "im going to end up in hospital dehydrated"
even being on the comp seemed like a mission, everything seemed hard,
if i went into town i would take my nana in, i do enjoy taking her, but sometimes, she would be more active than me and well she is 94yrs old, it sometimes got me down, my sister would txt for me to come over and i would make an excuse, after i picked the kids up in the afternoon, i would as quickly as i could make afternoon tea, then go to bed, if they came in i would sometimes get really grumpy and yell at them, that would make them said, and then i would beat myself up and feel like someone should take the kids off me, spiralling down we go,
i couldnt seem to help it, and it got worse,
ive now had decompression surgery, and still feel like that, im soooo hoping with time it will get better, i did have 3days i felt like i could rule the world, but then i would over do it,
soo yea its not your fault you feel like that, you have a medical condition and needs to be addressed as such,
carla i was on antidepressant for pain, i was on a bigger enough dose to work on emotions, i didnt help me, i think its so hard when you have no energy, i think checked for Cronic Fatique Symdrome, might fit better, i dont know, maybe even a mixture of both, im sorry carla i dont mean to sound horrible, but so many professionals say could you be depressed? there is such a negative thing about it, and if your depressed to must have made your symptoms up, i know thats not what your meaning, its tough...sorry