posted
Hi everyone...for the past 2 weeks or so, I have been averaging about 12 hours a day in bed. The rest of the time I am able to get up and around a bit, but 12 hrs a day seems like an awful lot to me.
I literally am so exhausted that the only thing I want to do is lie down and snuggle with my boyfriend. While the snuggling is awesome, the being too exhausted to do anything else is not.
I had my gp tell me the other day that this is a form of chronic fatigue syndrome but I know thats crap, although I do test positive for Epstein Barr. Anyone else have fatigue this severe? What if anything helped turn things around for you?
Thanks in advance. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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posted
I have been on a fatigue roller coaster for almost 2 years. Sometimes I spend half the day in bed, but the past two months I have been stuck in bed most of the day. I was diagnosed with CFS before Lyme, but I think it's just a category to describe a condition that comes with chronic illness. Fatigue is really my #1 symptom (though I do have many), and this has kept me from being employed for most of that time. Hopefully I can resolve this with treatment.
Posts: 131 | From Neptune, NJ | Registered: Oct 2012
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
It's hard some days I wish I could stay in bed, but with work, kids etc it's impossible to do so.
On the other hand needing to get up and get going has been helpful as well.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Yup. Im in bed alot. I sleep tons as well. I typically get 7 hours of sleep a night. After I get my kids to school, If I am able to I will sleep until they get back at almost 4 in the afternoon.
Most days, I can't sleep that whole time, as I have to grocery shop, or do something else. But, I do nap almost everyday. And if I over do it one day, I pay for it several days later, sleeping alot those days.
If I could I would sleep my nights worth of sleep(7 hours on school nights, more on non school nights), plus an additional 5 hours during the day, with minimal output of energy the rest of the day, and still not have any issues going to sleep that night.
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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posted
Thanks everyone. It helps to know I am not alone on this, although I am sorry you all are suffering with this fatigue too. It is the kind of exhaustion that I can only describe as painful...it makes doing anything so damn difficult. Ugh. I hope we all feel much better very soon. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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i work 4 hours a day during the week and other than that i am down.
i have a special mat with pillows and blankets on the living room floor.
if i get a burst of energy i do as much as i can during that time before i'm hit again.
if i plan something i need to spend plenty of time before hand resting.
no spontaneous outings here!
life is like long periods of constant fatigue punctuated by shorter periods of paralyzing exhaustion.
i'm lucky to have a supportive husband who never makes me feel bad about my inactivity and can help take up slack for the things i used to have energy to do
Posts: 428 | From Midwest | Registered: Dec 2012
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Jess,
I felt like that when I was first on the TPN, and it wasn't until the doctors recognized the lipids were making me so sick and then they took the lipids out of my TPN that I felt better.
Not saying the lipids are causing your fatigue, just explaining that sometimes there are complicating factors that happen with TPN that can cause or worsen fatigue.
That said, I have some days even now with terrible fatigue...especially if I spend a lot of energy the day before.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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MannaMe
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posted
My husband is spending ALL day in bed the past week. Only up for the bathroom / shower.
Ever since Thanksgiving he's only been able to be up a little at a time - an hour, maybe.....
For him its adrenal fatigue, most likely Lyme & co induced.
Posts: 2249 | From USA | Registered: Aug 2011
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posted
Thanks everyone for the responses! Jess.
Posts: 870 | From ct | Registered: Nov 2012
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i had my colonscopy yesterday and i don't know what they gave me, propofol i think, but i came home at noon, slept until 3 and then went to bed at 8 and woke up at 9:30.
lately i'm so tired i can't move. could be the cipro and flagyl that i'm on. i'm on 500 three times a day and it's kicking my butt.
could be a herx or something..but i'm dragging. just want to sleep 24/7
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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surprise
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Member # 34987
posted
Jess- isn't one of the hallmarks for babesia is this unrelenting fatigue- sleeping- staying in bed?
If I remember correctly, you tested positive for babesia- hopefully you can start your IV antibiotics and treatment soon-
Hang in there!
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Hi surprise! Yes, I def tested serum positive for babs with both Quest labs and Igenex labs.
I start Rocephin this Friday oyyy and I will also discuss a babs ned with my llmd, as I am allergic to Mepron.
Thanks. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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MannaMe
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posted
Jess, can you rife for Babesia? That way you aren't adding meds to mess up your gut.
Posts: 2249 | From USA | Registered: Aug 2011
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posted
Manna-my dr does work in conjunction with someone who uses Rife, so yes that is theoretically a possibility for me. I didn't know Rife was truly effective with babs. Thats great news,, if thats the case. Thanks. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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surprise
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posted
Ah, if you started antibiotics on Friday, sounds like it's hitting infection, and why you are in bed!
About 2 hours after a Bicillin shot, I would HAVE to lie down for a brief nap.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Oh no, I start the meds this coming Friday...haven't started them yet. I am not looking forward to the herxes from Hades than I am sure will await me, but I have to do what I have to do to get better.
Ugh..thanks again, Surprise. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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surprise
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posted
Things are only looking up- you will treat, and get better.
And, in a way, you are lucky to be able to do IV. As Dr. B just said at the conference:
'If I were in practice today, I would do much more IV.'
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Before I knew what was going on, I found that taking flower pollen tablets gave me energy. I haven't taken this in a long time, but I suggest it as maybe something to try.
Posts: 13116 | From San Francisco | Registered: May 2006
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map1131
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posted
I refused to lay in bed. For a long long time, I would wake up, read paper, take a shower and be wiped out like I'd not slept a wink.
But I had made the bed and that wasn't my destiny. It was my couch. Many hours without TV or anything......just lost in my own fears, pain and brain fog.
My therapists could not understand why I could not, would not rest in my bed during the day. All I knew was in bed I would have felt defeated and there was no way I could face that.
Crazy, but each of us are different.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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sparkle7
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posted
I know what you mean, map1131. Sometimes we have to psyche ourselves out of being in an illness mindset.
I had CFS - you spend most of your life in bed. I had a job where I worked all night. The manager was my friend so he used to let me sleep under his desk when it was slow...
Fatigue is worse than pain, I think. You can usually take something for pain but fatigue is really debilitating.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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I have the chili and dessert ready but Iam down for the count. Hope it gets better as the day goes on.
Rest of family coming tomorrow.
Posts: 620 | From Ks | Registered: Oct 2011
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sparkle7
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posted
I think it's best to not be too hard on one's self... You just have to take it one day at a time. I'm sorry your husband cried for you, daynise. It's tough. Hang in there.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I spend most of my day on the couch, all day every day. I do attempt life but crash by noon
Posts: 11 | From East coast | Registered: Sep 2012
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map1131
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posted
My wish for you guys that are in that place of such extreme illness is......someday soon you will find the right tx that at least gives you the ability to put one foot in front of the other and live your life as much as you can.
Short periods that allow you to do life with others. Crashing the next days. Then resting to do life again. Crashing again.
It's not the best, but it's a beginning. That day will come.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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surprise
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posted
Well, I have no idea if this helps, maybe some hope, but
this holiday season has been the best I've had in 3 years. I had more energy, I participated, had joy times with my kids.
Yeah, I pushed, but I would like to think I'm getting better. I'd like to think the hard treatment I've done/endured has made a difference.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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MannaMe
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posted
My husband has been rifing for Babs ever since he was diagnosed. He felt better immediately and usually rifes for babs at least once a day.
Recently stepped it up to twice a day.
I don't know how effective it is against the babs, but I would assume its at least helping keep it in check.
With him feeling better after rifing - it must do something!
Posts: 2249 | From USA | Registered: Aug 2011
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WPinVA
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posted
Jess, That was me last year. I think a large part of it was due to babesia. This year I am doing so much better. Now I am basically functional with the caveat that I need to ration my energy and lie down a couple of times during the day, and make sure I get enough sleep. And if I overdo it, I do crash and need a couple days of rest at home. But even my bad days now are better than they used to be.
Lots of things helped me get out of bed. Effective treatment for one. Also getting my adrenals and thyroid back on track were both huge for me. As for supplements: COQ10, thermatabs and Researched Nutrionals NT Factor Energy were all very helpful.
You probably meet the clinical definition of Chronic Fatigue Syndrome (caused by Lyme & Co.). I did and maybe still do, but there is hope. I still have a ways to go, but I am finally able to see the light at the end of the tunnel.
Posts: 1737 | From Virginia | Registered: Aug 2011
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