Fatigue......

[doni54]

Hi All,

I don't get to post on here much anymore and I thank you all again for all your prayers for my granddaughter, Ava, and my daughter Beth.  Ava weighed 2 lbs 13.7 ozs today and was having a good day.   We still have quite a way to go before she can come home, but every little bit of positive progress means we're a day closer.

I just wanted to ask those of you who have taken medication for your fatigue if you could recommend anything.  My fatigue has always been one of my worse symptoms, but with all this with Ava I am running pretty much 16 to 18 hrs a day and I think it's about to catch up with me...haha

Legs aren't working much at all lately and my webble wobbles are at an all time high.  Seems if I barely lean to one side, it's all I can do to keep from falling over.

I know it's from the fatigue and want to ask my sweet GP if he would prescribe something that might help, but I wanted to get some experienced input from all of you first.

Any suggestions would be greatly appreciated!!!

Hugs,
doni

[michelleric]

Doni,

SO thrilled little Ava is coming along well and her weight gain is improving.  I will still keep her and your family in my thoughts and prayers..

As for you, you do need to slow down. (I can give this advice, but never follow it myself!)  Do as I say, not as I do.


Really though, you must try to take care of yourself, otherwise you will get even more fatigued as well, as more symptoms will erupt.

Hugs,
Michelle

[jensequitur]

Wow... you do quite a lot!  No wonder you have fatigue issues.  I just barely have enough to do 8 hours a day, then home and dinner and sleep.

[doni54]

LuLu.....This MS neuro was in B'ham and my first MS neuro was Emily's husband, and he was a total and complete a$$.....hahaha  Guess I'm just gonna be one of those that gets to try out a dozen neuro's before I find one who cares about this old woman...heehee  It will be awhile before I try again though, too much on my plate at the moment...

Love you too Shelly girl!!!!!

[sllowe]

Doni-girl,

I've never taken anything for it :( But, sure know it wreaks havoc on the legs, not to mention the coup.
Hoping you can get something for it though soon.
Love ya,
-me

[Lulu54]

Doni,
We know sometimes life forces us to do what is contary to what is smart for us.  Just do your best to slow it down, ok?.  

That neuro is an a$$ if you ask me.  There is no need for you to be waiting - CIS is definitely clear for you.  Another doctor perhaps?  I heard DR. Emily Riser from the Tanner Center speak at the Expo in Louisville. I think she is in Birmingham, which would be a  drive for you but perhaps well worth the trip.

hugs back to you,
L

[doni54]

Thanks everyone.  

I know I need to rest more, but have to work.  Up at 3 am every morning, then off to the hospital when I get home, then the usual "home work" when I get back.  I do go to bed as soon as possible, but most times that means 9 or 10 at night.  Usually by Thurs/Fri I will crash earlier as I get to the point that I can't function at all.

I sleep like a rock when i finally stop, so sleeping is no problem, except on the days that Ava isn't doing well.  I was already going to ask about something for fatigue even before this situation.

I've had a thorough work up, just spent most of the summer having more tests.  Neuro says he's sure it's MS, just won't give me my dx because he wants more clinical proof?  Wants to wait 6 more months for new MRI's...........

Have brain, c spine and t spine (lower) lesions showing on my MRI's, abnormal VEP showing almost complete blindness in my right eye, due to a lesion on my optic nerve.  My LP didn't have any O bands so don't know if that's the reason, or if it's just that I don't have ENOUGH lesions, he didn't really explain himself.  

GP isn't happy with him at all and I'm sure he would help me if I asked. He knows I'm not a drug seeker because I've never taken anything for my symptoms, barely take a tylenol for pain.

I'll try to slow down and get to bed earlier but just wish there was something to help.

Gotta get ready for work now, hope everyone has a great day!!

Hugs,
doni

[rendean]

Dearest Doni,

So happy that Ava is gaining weight! Sorry but I have to agree with DB and LU about taking care of yourslf so you'll be fit when Ava gets home. Make an afternoon nap a habit and don't slide on it either.

I have you ,Beth, Ava and the rest of your family in my prayers.

Ren

[doublevision1]

So glad to hear your granddaughter is gaining weight and doing well.  I know so many children who came early, and tiny, and all, now ages 5 - 9, are doing great.  One of the tiniest is now the tallest kid in his grade 4 class!

As for your own health, I completely agree with Lu's last paragraph.  Your body needs rest, and most likely does not need meds which would just serve as a Band-aid rather than address the underlying cause.  The pace you've been keeping would be rough on a completely healthy person, so I can imagine the toll it's taking on you having a chronic illness, not to mention the stress you're currently dealing with.  The MS meds aren't meant to be quick fixes for situational exhaustion, which is what seems to be what you're experiencing.  You need rest and good quality sleep.  The MS fatigue meds could interfere with that.  

Having said that, I'll throw in the obvious 'I'm no doctor' caveat.  Fatigue needs to be thoroughly assessed especially in MS patients as it's causes are often complex and multi-factorial.  I would question a doc who would prescribe without first undertaking such an assessment.

I know getting more rest is easier said than done in your situation, but like Lu points out you will be no good to anyone if you keep up that pace.  I fear you would seriously crash if you do try keep it up.

Sweet dreams, Doni.  ;)

[Lulu54]

Hey Doni - good news about Ava's weight gain.  It's a long haul but she will be fine.  I can just feel it.

As for the fatigue - there are a couple big guns (as in very expensive) that are prescribed for people who have sleep problems.  They are Provigil and Nuvigil (yes, they are related!).  The people who are on these mostly swear by it for assisting with the fatigue.

The people who can't get those approved by their insurance often go to the next group - the drugs that are rx'd for attention deficit disorder (ADD).   I believe that includes ritalin and adderal.   Be sure to throw that out as an option to your doctors but be sure to do it in a way that doesn't sound like you are drug seeking.


The obvious answer here is the one you don't want to face and admit  - stop doing those 18 hour days.  You know how much you are going to be needed when Ava comes home and you need to be sure you are still upright.  The stress and fatigue will run you in the ground, as you well know.  Put yourself on a schedule and stick with it.  You will end up being no good to anyone if you keep this up.

hugs,
L

[grannyhotwheels]

Hi Doni...

I'm so glad to hear that the baby is doing well... I have kept all of you in my prayers... I'm sorry I can't help with the fatigue question... I'm having a problem with it myself... I hate the thought of taking another pill but sometimes we just gotta do what we can to survive...

Hopefully someone will be able to help you since i'm bumping this up... Please keep us informed about Ava and do take care of yourself too...

I'll be praying,
Carol