posted
i'm in bed all day, literally. and even lying in bed, the fatigue is still painful at times. i can barely get up long enough to eat and shower. only in the last 2 days have i had the energy to type for a little while in the evenings, which is why you see me posting now.
if i didn't have my mom to bring me food... thank goodness for people who have family to help. wouldn't know what to do if a person didn't have someone to help.
i've been like this for 3 months, 2.5 months after starting antibiotics. seems like this is extreme. it doesn't sound like others have such extreme fatigue that lasts so long.
how do/did you deal with it? how long before the fatigue eased up? what % of yourself are you after treatment? currently i'm at 5-10% of general functionality.. meaning i can eat and shower with effort.
Posts: 98 | From San Francisco | Registered: Oct 2006
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I totally understand your feelings. It's the worst part of lyme...when you can't move even if you want to do so.
Just do what you can, when you can.
For me, just taking a shower and getting dressed was a BIG success of the day. Still is. Sometimes, just pulling the blanket over your head and letting it be, is the answer.
My favorite song is "Let is be" by the Beatles. I think of this when I can't do anything and feel like I'm nothing anymore, as compared to what I used to be.
You will be well again and so will I. For now, don't stress..give yourself a break.
I swear most of us with this tickborne disease beat ourselves up instead of just letting our bodies guide us.
Of course, life does get in the way sometimes.
Peace!
Posts: 867 | From PA | Registered: Jan 2006
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Cobweb
Unregistered
posted
We are in the midst of a move-Not a whole lot is getting done-unless someone else comes over to assist.
I told my LLMD I can't afford this level of fatigue right now-she prescribed Provigil-which I'm too scared to take! I already feel like a chemical factory.
I remember just melting into this Big Blue Recliner Chair- for hours, not doing anything, just being there. I do get energy spurts throughout the day-when I think about what I have to do. Then I go back to bed.
I plan to do some hard core hibernating this winter once we're moved.By Spring-April/May I will have been in treatment for a year-so hopefully some energy and inspiration will emerge.
Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi grace1,
Yes, I have had extreme fatigue also, I was in bed for two years the whole time I was doxy and mino..it was horrible.
My husband did alot of the shopping at that time, thank God I had my hubby! My mother also took my son, so at least I didn't have to worry about taking care of him on my worst days. I look back and I don't know how I got through it!
I never thought a person could sleep so much and I didn't think it would ever end, but it does get better.
Hang in there. Posts: 6641 | From Michigan | Registered: Jun 2001
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posted
I don't think the word "fatigue" can even begin to describe it!
I used to fall asleep in meetings at work, in the middle of conversations and while driving.
I would sleep for 20+ hours a day. And STILL be exhausted!
And being in bed all day made my body hurt more sometimes.
I was on STD twice and had to work part time for a while.
It is like someone stuck a straw in me and sucked out everything that makes a person function!
It used to make me angry when people would think or say "oh, you are just tired" "we all get tired." I used to have to tell them it was worse than when I had mono, pneumonia and strep at the same time, or when I was anemic!
I was prescribed provigil as well. I would never have made it to all the dr appointments with out it!
I still sleep away most of my weekends and struggle through every day of work.
From what I am told, it can be one of the last symptoms to go. And, that for some it never goes all the way. (but for some it does! )
I try not to beat myself up about it any more. It only made me depressed.
I am thankful for the days that are okay and for the days I am not so exhausted (and there are those days)
I TRY to take it one day at a time... that is all we really have.
Posts: 240 | From MA | Registered: Nov 2006
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quote: Still is. Sometimes, just pulling the blanket over your head and letting it be, is the answer. . . .
You will be well again and so will I. For now, don't stress..give yourself a break.
Sounds like a plan to me.
I've been stuck for several weeks right now in this fatigue thing. I have the fibro diagnosis, not lyme, yet, and the biggest thing I've learned is to just let things go and take care of me for a bit. I'm also blessed with my mom who lives in our home. Fortunately, it's been working out that we don't go down at the same time. She has an MS diagnosis that I question right along with my fibro one.
I've been just relaxing as much as I can during the day. I love to crochet. I received all three seasons of the original Star Trek series as a gift recently. So I sit down with my basket of yarn and enjoy the continuing voyages of the starship Enterprise. In the past three weeks I've completed one baby afghan and a new full size one to go with our new living room furniture.
I may not be working 60+ hours a week anymore along with softball, volleyball, boy scouts, girl scouts, church boards, etc., etc., etc., but I am feeling a sense of accomplishment in getting these projects done. I hadn't had time to do this hobby in YEARS.
And remember as best I can that even without the treatment I most assuredly need, I've been living through these cycles for years. It will get better, it will mostly go away for awhile and it seems to do that quicker if I just stop driving myself to try and do things at the level I did before getting ill.
Take care and God bless, Moosie
-------------------- Trying to figure it all out. Posts: 38 | From Spanaway, WA | Registered: Sep 2006
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Hope you feel up to checking your replies! I know where you are coming from. My daughter has experienced the extreme fatigue you describe. We are new to this, but wanted to share the things that seemed to help her the most came from our first llmd visit. He started her on B12 shots, diflucan for yeast, acidophilus, supplements, and modified her diet.
Since you didn't mention these I wanted to make sure you were taking advantage of some things that helped my daughter's fatigue.
I also think that the stress we put on ourselves can be subconscious. Just letting go of everything and concentrating on getting better is important.
Hope you are starting to feel better!
MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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Cobweb
Unregistered
posted
Lioness-what is your experience with provigil-it has been prescribed for me-but I am scared to take it-does it work right away? Now I just go back to bed. Anybody else take provigil?
It takes a few hours to get in your system all the way. I used to set my alarm an hour before I needed to get up so I could take it.
Some days I would have to take a higher dose.
I wouldn't suggest taking it too late in the morning b/c it could keep you up. Maybe start at a half dose and increase as needed (some of the tablets can be broken in half).
My father took it (takes as needed now) and it seemed to wake him up (or keep him up) more than it did me.
Also, two things to watch for: increase in headaches and mood changes
I have taken it off and on for the last year and a half (a good nine months straight).
I try not to take it every day any more, but when I needed to, I did. And if I REALLY need it now, I take it.
Posts: 240 | From MA | Registered: Nov 2006
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I suffered extreme fatigue, just like you, in bed most days, unable to leave the house or do anything.
It is much better now, but still a problem. I found supplements help alot and I will list them below - speak to your doctor before starting them, as they might interfere with other medications, etc.
Magnesium (Lyme eats it and it is usually low, it is essential for making ATP (energy). CoQ10 (Again, very important, and it is an antioxidant, quite often it is low in Lyme patients) Acetyl L-Carnitine (Important for making ATP and very good for the mitochondria, the brain and the heart) Fish oils (Always good to take fish oils, good the brain, energy, etc.) Vitamins B-Complex is good and helps with energy D-Ribose is very good for making ATP, do a google search on it.
When I first started ABX my fatigue was extremely bad for a while, but did start getting better...
Hope this helps
Posts: 263 | From UK | Registered: Mar 2006
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Cobweb
Unregistered
posted
Thanks Lioness-I Just got up from my afternoon Siesta-I think I might try my first half dose tomorrow AM-maybe I will put it by my bedside and take it when I first wake up.
Mood Swings??? I don't know if mine could get any more extreme. As long as you don't get that sizzling fried brain feeling.
quote:Originally posted by ChrisBtheLymie: Hi Grace,
I suffered extreme fatigue, just like you, in bed most days, unable to leave the house or do anything.
It is much better now, but still a problem. I found supplements help alot and I will list them below - speak to your doctor before starting them, as they might interfere with other medications, etc.
Magnesium (Lyme eats it and it is usually low, it is essential for making ATP (energy). CoQ10 (Again, very important, and it is an antioxidant, quite often it is low in Lyme patients) Acetyl L-Carnitine (Important for making ATP and very good for the mitochondria, the brain and the heart) Fish oils (Always good to take fish oils, good the brain, energy, etc.) Vitamins B-Complex is good and helps with energy D-Ribose is very good for making ATP, do a google search on it.
When I first started ABX my fatigue was extremely bad for a while, but did start getting better...
Hope this helps
I have to agree. I was having the IV magnesium and other vitamins & minerals last year. I take them orally now. My LLMD was monitoring them.
They are very important.
Posts: 240 | From MA | Registered: Nov 2006
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posted
My first 6 months of Lyme I had extreme fatigue. Sometimes I didn't have enough energy to sit up. I could barely lift my arms. Slowly it started to get better.
Now after 29 months of antibiotics I am perhaps 90% of my old self. Sometimes I actually feel better than ever.
Keeping a daily symptom log helped me to track my progress.
posted
I am struggling like you , but refuse to stay in bed constantly , so I pulse the antibiotics every other day and take enough to have a constant herx , but not so much that I am a vegetable. Before I did this , I was a VEGETABLE . You can only be in this state so long before you start losing your marbles.
Many protocols do pulse ABX , and I believe in it , because the body needs time to excrete the toxins . I am a firm beleiver that going too fast with ABX is a mistake. You can read about this at "The Road Back " site for ABX protocols.
Also , one thing that has helped me LOTS is a detox product called Fiber Fusion by Enzymatic Therapy . It absorbs toxins in the bowel. I take three capsules daily with a big glass of water . Sometimes I also take activated charcoal ( NOT WITH MEDS OR supplements but two hours away - usually right before I go to sleep) . Charcoal also removes toxins in the bowel.
I do not believe that bombarding the immune system with toxin overload will get me well any faster. And I can not stand to stay in bed constantly , so pulsing the ABX , is a good idea. I know a doc who has mycplasma illness ( similar to lyme ) and she pulses the ABX herself and with her patients .
posted
I am struggling like you , but refuse to stay in bed constantly , so I pulse the antibiotics every other day and take enough to have a constant herx , but not so much that I am a vegetable. Before I did this , I was a VEGETABLE . You can only be in this state so long before you start losing your marbles.
Many protocols do pulse ABX , and I believe in it , because the body needs time to excrete the toxins . I am a firm beleiver that going too fast with ABX is a mistake. You can read about this at "The Road Back " site for ABX protocols.
Also , one thing that has helped me LOTS is a detox product called Fiber Fusion by Enzymatic Therapy . It absorbs toxins in the bowel. I take three capsules daily with a big glass of water . Sometimes I also take activated charcoal ( NOT WITH MEDS OR supplements but two hours away - usually right before I go to sleep) . Charcoal also removes toxins in the bowel.
I do not believe that bombarding the immune system with toxin overload will get me well any faster. And I can not stand to stay in bed constantly , so pulsing the ABX , is a good idea. I know a doc who has mycplasma illness ( similar to lyme ) and she pulses the ABX herself and with her patients .
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