posted
I like to believe that much of our fatigue is caused by our body fighting so hard to kill infection.
Try keeping yourself as busy as you can (even if it is just a game of Chutes and Ladders with the kids) to try and distract yourself and pass the time until you can take a nap.
I think one of the hardest things for those of us dealing with Lyme is the monotony of trying to get through another day of torture. The faster we can get through these days in order to get to the better ones, the better. I'm already counting the minutes until my 2 little ones are in bed so I can call it quits for the day.
Have you been tested for iron and magnesium levels? How about your cortisol?? As you probably already know, deficiencies in any of these areas can cause profound fatigue. At least these would be easy for you to adjust.
You hang in there as better days are ahead!!!
Posts: 561 | From mass | Registered: Jul 2007
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posted
Merrygirl, I wish I didn't know exactly how you feel. But I do. An ocean of fatigue, dizziness and pain are keeping me home from church, again. I tell friends it's like getting treated for cancer: the cure is worse than the illness, but necessary. And when you have kids you can't give up, can you? Even though mine are in their twenties they need me alive.
Kate
Posts: 22 | From seattle | Registered: Aug 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Merrygirl, I've been there, and it's awful. Mine extreme fatigue did not let up until about 12 mths ago. I still have it if I overdo life. But I can knock it back pretty quickly with resting more.
It wasn't until I tried Ambien CR that I started getting the restful sleep one needs to fight an illness. I had done trazodone twice, Ambien, tylenol PM, and some natural stuff that didn't work for 7 yrs.
Ambien CR is different in that it is slower releasing and in layers that help you go to sleep and stay asleep. The only time in the last year that I would wake up was my ocassional, maybe once a month restless leg/arm/body pain.
If my grandchildren are spending the night and the youngest one comes looking for me in the night, I do wake up hearing him. So if you are worried about the children, maybe this would work also for you????
If I've had a very stressful day, sometimes I take a .25 xanax to help my body/mind wind down so I can focus on reading some before bed time & Ambien CR.
I still can spend my energy quickly in the morning if I'm on a time schedule and have any early appt, and things that must be done by a certain time. Life??????
But I can just lay down on the couch and relax for an hour and my fatigue will abate enough that I can do life for a few more hours.
Deep sleep is essential. IMOH major healing can only begin when you are getting restful sleep. Big difference for me anyway!!!!!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Melissa, Have you tried Provigil? Ask Dr P for a prescription for some; he thinks it is great. It works like Ritalin but without the jitters.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
PS
I should also say I understand, and cannot imagine having two little ones to care for while being this exhausted.
The part I hate the most is how hard it is to wake up when I have to pee. It sucks!!! I am so tired, I don't know how I can possibly wake up/get up and go to the bathroom.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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for me and finaly I have found something to make me get into that delta 4 sleep.....huge difference.
I know what you mean about wearing a led suit.....
i tried yesturday and today to go to the grocery store with my husband....
made it to the car......drove to the store....but by the time we got there....
soooooooooooo fatigue..... i even hate the word........
i to am sick of this Lyme crap and have had a pretty awful weekend......
I do know though.....that you will get better....you will....
i have been there and plan to be there again.....
.....and when you get down do what you did......get online...and give a shout out....
people with Lyme are the only people i know that really know what you are going through......
i hope your doing better. thinking of you.....
from one fatigue to another..... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
I do think a good night sleep is key, but I've found that sometimes that doesn't even help with the fatigue, it doesn't seem to matter.
I have been taking Ambien every night since June, unfortunately that's what it takes to get decent rest.
I have changed my diet recently and have found that my fatiuge isn't as bad.
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Another one here that can definitely relate. I had this horribly before my diagnosis and was sleeping unrealistically amounts and remember feeling like it was next to impossible to even move my arm up from the bed.
With diagnosis, I was feeling it lift, but then a couple months ago, got hit hard with it again. At first I thought it must be a type of herxing, but then found the yeast had been getting the best of me, even though I've been on the diet since my treatment started.
Not saying that is your problem and I didn't have outward signs of yeast in the beginning so I had no clue what was going wrong, but just saying that sometimes you need to find the angle that is causing it...perhaps a co infection or whatever.
My heart goes out to you since today is the first time I was even moving much out of bed since this hit me. It was horrid.
Keep us posted on how you are doing. We really do understand. Wish we could say we don't relate, but sadly, we know it well. Ugh!!!!
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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jamescase20
Unregistered
posted
Two words...lithium orotate! I know your pain, I was sleeping like crazy...and now I feel WAY better...Read up on this amzaing brain detoxer.
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posted
Merrygirl, It is definitely harder with little kids to take of. I was where you are a while back. The fatigue was unbearable. I had 3 little ones. I had to pick them up from school. It was a monumental task for me at the time. One day a woman I was friendly with but not that close with noticed my struggle. I said no thank you when she offered to help. But surprisingly she said no to my no and next thing I knew she was picking up my kids everyday for me until I got more strength. Make sure you prioritize, accept help and most important don't feel guilty - you do the best you can.
Posts: 472 | From New Jersey | Registered: Dec 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Thanks for all of your replies. I am sad we all have to deal with this!
Tracy- I have tried provigil but I could't fall asleep well and my PCP said Ritalin has a shorter half life. Maybe it is time to try it again,
I have sleep apnea and I havet got my CPAP machine yet. Maybe this will help.
Sigh
Melissa
Posts: 3905 | From USA | Registered: May 2007
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posted
I didn't read this whole thread, just the first post ..... but I wanted to mention that I take NT Factor for fatigue. It's a big help.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Wishing you were Merry again,
I can definitely relate to the fatigue that makes
You feel like you have run into a wall.
I also have little ones.
I've been so tired that I have actually fallen asleep (dozing)
At the table while they are eating lunch.
I just push through. I have to. Sometimes I have an extra
Cup of coffee in the afternoon to help me make it.
I do know how you feel. Lately my fatigue has been
Growing in leaps and bounds.
I napped last week. Third time since diagnosis' (10/06)!
Even though I am always exhausted that is just not me.
Don't give in. Don't give up.
Your kids need you. We do too.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by merrygirl:
I have tried provigil but I could't fall asleep well and my PCP said Ritalin has a shorter half life. Maybe it is time to try it again,
Melissa, I have the same problem, but am helped a LOT by Provigil.
Take it early in the day and it won't affect sleep.
It's an amazing drug -- you get wakefulness but not hyper. Just awake. It helps.
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
Melissa, I can relate to what you are saying. My fatigue has never been as bad since my 2nd llmd started me on 22 supplements last april 07! When I got thru them, I quit them all; my fatigue is much worse now ... I did NOT have it this bad before taking the supps.
Sending you . hope cpap helps you too. It didn't for me. I got a full face mask but my nose is always plugged up and I can't breath.
when you get your cpap, have them show you the one with water/humidity.
DIDN'T work for me; water was supposed to be 80/was, but to ME, it felt like 32; I FROZE FULL TIME plus the NOISE is unbearable to my super sensitive hearing too.
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posted
awwwwwww, Merry, I wish I could take care of your kids for you like I do my Gdd for my DD. Don't you have anyone to help you?
My dd is in bed at least 18 hrs a day.......can't say she is always asleep, but she does sleep lots.
I will pray that you get through this clear to the bone fatigue. The only time I can remember being so tired was when I had Mono and also was real low on iron.
I coudln't keep my eyes open and was sooooooo very tired.
I did get better though. Hang in there, You will get there..............
HUGS
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
quote:Originally posted by merrygirl: I have sleep apnea and I havet got my CPAP machine yet. Maybe this will help.
I'd say this is your fatigue problem right there. From one apnea sufferer to another- believe me, its why your exhausted. Lyme +apnea= chronic zzzzz's.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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. hope cpap helps you too. It didn't for me. I got a full face mask but my nose is always plugged up and I can't breath.![[cussing]](graemlins/cussing.gif)
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