richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Is it odd that I have had little to no fatigue since getting sick? I had some early on but went away....
Am I alone?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
You are with me. I have had bad fatigue since falling ill.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
The fatigue is my worst symptom for me. Its a profound, never ending horribly debilitating fatigue. I can't stand for very long or I feel like dieing from the fatigue.
I can't stay awake in classes, and certainly can't hold a job because its so bad. I cant enjoy really anything because my fatigue is so bad, it just feels like another form of chronic pain. I started Babesia treatment and am helping that in 4 months, all y new uninfected red blood cells will help, but I have little hope.
The fatigue drives me to stay in bed to try to sleep all day, but I have the worst insomnia ever as well, so I get less than 3 hours of sleep a day if I didn't have 6 or 7 sleeping pills.I wish the fatigue would go away, I just can't live like this.
Sleep doesn't help. I feel drained of energy particularly if I need an active mind, such as taking notes, listening to a lecture, answering phone calls, ect.
Nothing seems to make this fatigue more bearable except blocking out all light and closing my eyes. But then my insomnia becomes unbearable. How do I make my life more bearable?
I've tried Ritalin but that makes my anxiety and mania go through the roof, makes me mentally insane, I've got enough psychological problems to worry about.
Told my psychiatrist I wanted to try Provigil, he said "That's a narcolepsy drug, that's ridiculous"
So I stopped seeing psyciatrists. Nobody seems to understand chronic fatigue, and currently there seems to be little hope for me if Babesia treatment and Lyme cyst busting doesn't help.
What the heck am I supposed to do. I just have a chronic feeling that I want to pass out. But its not a feeling of light-headedness or fainting, I'm just unbelievably damn tired.
I wish the fatigue will go way, I just can't live with this anymore
Posts: 121 | From Silver Spring, Maryland | Registered: Oct 2009
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I think I know of a doc in your area that might prescribe Provigil for you. I'll PM you.
Posts: 345 | From East Coast | Registered: Apr 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I was terrible with fatigue last summer when I first got sick--just laid around all the time, could hardly function.
I still have fatigue, but it's not crippling.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
I get horrible fatigue, but it comes and goes like everything else. Right now it's very bad. It's more like body fatigue than sleepy fatigue. My body feels extremely weak and heavy. So exausted. Even when I'm laying in bed I feel like it takes too much energy to just lay there. Sounds weird, but I can't explain it any other way. It's like everything takes SO much effort even doing nothing. Definatley not fun. I hope it passes soon.
I also did not have fatigue as a major symptom-in fact, I really only had it after my neuro symptoms got bad...aftrerward, I would feel very tired....but that was just a handful of times. Weird, as fatigue seems to be a major symptom for most.
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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posted
I have horrible fatigue. I just feel so exhausted all the time. It is like something has sucked the life out of me. It takes all my effort and then some to force myself to get up and do things when I need to do them.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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posted
SoSublyme, I would reply to your message in a PM but your mailbox is full, nobody can PM you.
You should clean it out.
Here is my response to your PM:
Thanks but honestly I don't feel comfortable going to psychiatrists, after a life of misdiagnosis, misunderstanding, and ignorance, the idea just brings me to much pain that you can't possibly imagine.
I'll see what my LLMD thinks first. He prescribes all my psych meds. I haven't asked him for Provigil because we've been so busy treating my Lyme ect.
Posts: 121 | From Silver Spring, Maryland | Registered: Oct 2009
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posted
obviously the topic of fatigue drew a crowd, myself included. even tho you were noting the lack thereof for you. yay! something for you to feel gratitude.
i, on the other hand, have what i call crying fatigue. all i want to do is lay down and cry.
Posts: 830 | From Colorado | Registered: Mar 2005
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posted
Fatigue has always been my worst symptom. I get so tired sometimes that I literally feel sick. I don't get that too often now but I lived with it pretty much constantly for years.
Posts: 495 | From KY USA | Registered: Dec 2004
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I originally felt that way as well. I was still able to be active, and I didn't think I was fatigued enough for Lyme disease.
There's different forms of fatigue. There's the not being able to stay awake fatigue, needing ridiculous amounts of sleep fatigue, and then the not being able to do anything fatigue.
I just thought that being tired and wanting to sleep all the time was "normal". It was mild enough I could mostly ignore it- but I did spend my holidays/weekends sleeping 16+ hours a day.
About two months into treatment, the fatigue that everyone talks about hit me.
So yes, I believe it is possible to have Lyme disease without horrible fatigue.
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
OK, I thought it was weird I have about no fatigue...but I notice muscle fatigue.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I don't know what type of fatigue I have, but the most common is a feeling like my legs have lead anchors attached and a never-ending yawning feeling. Getting deep full breaths is hard at times. My legs literally feel like rubber.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
My experience is similar to Nicole_Denise, and I agree with her assessment of the different levels of fatigue.
For a long time, I didn't have a problem with fatigue but when it hit, it became my most disabling symptom.
Treatment seems to have finally knocked it down, but I still "wipe out" much earlier than a healthy person and take longer to recover/rest up from a big activity.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Fatigue has been a major issue for me. I feel exhausted all the time now.
You are truly blessed that fatigue is not a problem for you!
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Fatigue like I was hit by a freight train. It has been such a debilatating symptom for me. Very hard to describe what it really feels like. I use to call it the "death fatigue", because it felt so bad I thought I would die.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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bettyg
Unregistered
posted
you betcha! that's why i have the wierdest hours; like a baby again!
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
maybe I don't have Lyme then?!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Hey, just wanted to say that I used to have bone crushing fatigue too. Could hardly get out of bed for months.
Now, I'm walking about 10 miles a week and working out 45 minutes a day 5 days a week.
For me it turned out to be extensive pituitary gland damage.
I went to an endocrinologist who tested me with a stim test and MRI and based on the results started me on HGH injections.
A little over a year later and I'm doing much, much better.
Pituitary damage can be caused from infection.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6138 | From Columbus, GA | Registered: Jul 2004
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Many find it odd I don't have fatigue....but I DO notice some muscle fatigue and had some fatigue when this started.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
Fatigue, the I need to sleep for a long time type has been my biggest symptom!
It has improved with treatment but comes back to bite me very now and then.
Posts: 88 | From DC Metro area | Registered: Sep 2009
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Richedie, I don't know that lack of fatigue means you don't have Lyme...plenty here seem to go for long walks, exercise etc.
It's also possible that length of illness affects fatigue levels. I have developed new symptoms at different stages of ilness, so it's not a static thing.
Most of us have a soup of different pathogens, viruses as well as bacteria and who knows which causes which symptoms for sure?
Deep fatigue [not always sleepiness, but deep bodily exhaustion]has certainly been a big factor for me since the early 90s: very heavy achy limbs and joints, problems sustaining raising arms, weakness and mental exhaustion.
Posts: 1647 | From UK | Registered: Nov 2008
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posted
As I posted earlier, I do not have fatigue, but I definitely have Lyme per positive titers drawn 3 weeks after the start of my illness, and confirmed per CDC "standards" by Western Blot.
Richedie, is it possible that we have a common history prior to our illness? I was physically very well and a runner prior to getting ill....could that be a reason for lacking fatigue? Or-we could have a different strain of the spirochete?
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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posted
What is fatigue can someone explain me how much it affects you?
I am not sure if i have it or not. I dont think so. I get up at 5am go to work come home in the evening and when i get home i just dont have motivation to do much. Not that my body aches just within me i can care less.
I dont have fatigue as well.
-------------------- May God Bless you, answer your prayers, relieve you of your pain and make you stronger than what you are today. Ameen. Posts: 341 | From Columbia, MD | Registered: Jan 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Sonee, I don't categorize someone who can get up at 5 AM and work a full day fatigued. I think we're talking something different. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by Sick Tick: As I posted earlier, I do not have fatigue, but I definitely have Lyme per positive titers drawn 3 weeks after the start of my illness, and confirmed per CDC "standards" by Western Blot.
Richedie, is it possible that we have a common history prior to our illness? I was physically very well and a runner prior to getting ill....could that be a reason for lacking fatigue? Or-we could have a different strain of the spirochete?
My doctor and a nutritionist said the same thing that prior condition can play into it. But, you see active teens all the time with Lyme and they can't get out of bed.
I have always been active, running, walking, hiking, snowboarding, bodybuilding.....
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
Fatigue is my major symptom but I'm still able to lead a pretty normal life. I have a full time job but I work mostly from home.
If I had to get up and go somewhere 8 hrs a day I'm pretty sure I couldn't do it.
As many have said here there are different types of fatigue.
Mine is not so much sleepiness as just a feeling of dead weight, weakness, muscle pain, inability to be active or even think.
The worst part for me is I never seem to get a good night sleep and I generally am in bed 10-11 hrs per night. You would think that would be enought rest!!!
Also after any big event, stressful situation, busy day etc I have to sleep/rest a lot more than a healthy person. I get what I call Extreme dibilitating EXHAUSTION. Sometimes it is so bad I feel nauseous unless I sleep for many hours
Funny thing about the sleep...I had an endoscopy a few weeks ago and the stuff they gave me to put me out was great
I woke up feeling the best I had felt in a yr(LOL yes after an endoscopy & colonoscopy!). I then went home and REALLY slept again for about 3 hours. It did wonders for me....wish I could sleep like that all the time.
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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