posted
Hey, In the beginning I always felt horrible, but the worst in the afternoon, and sooooo tired come like 2:00pm, had to sleep/nap...
Now after a year of treatment my joints (feet mostly) hurt in the morning, but the pain works itself right out by the time I get to work... I feel really good throughout day
Cognitivley and moodwise I still go downhill throughout the day...wondering still why my husband even attempts to talk to me by 5:00 pm...Jill
Posts: 83 | From Northern Illinois | Registered: Feb 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
The only pattern I've seen is that my myoclonus (uncontrolled movement) gets worse as the day goes on. It usually doesn't hit until night. Mine is pretty mild.
Basically, I hurt when I stop. As long as I'm busy with work or school, the symptoms are usually less. But that's when I'm not in a major flare. Then symptoms are constant.
I don't have cognitive symptoms.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
well, I wake up tired and in pain.....
If I have enough energy to do anything... I do them and both symptoms get worse....
Once I reach a certain level of fatigue.....
my brain stops functioning well....
I switch words in sentences.... can't rember what room I was going to or for what....
lyme brain basically.
I have other symptoms to that come and go but these are the ones that make my life more difficult to function with.
I am alot better now than a couple years ago....
I was on stronger pain medicine and in sooooooooooooo much more pain .....
And I was sleeping 18 hours or so a day instead of the 12 or so I do now....
posted
For the first time in months I think I might be getting slowly better. That's because I took a 2.5 day break from abx and woke up with energy and very little pain.
Before that, see my entries on why am I sicker in the morning.
That's December, Jan, Feb, March with terrible nausea and pain and fatigue. Worse for me from wake up until mid afternoon. I had to take narcotics and antinausea drugs.
I started abx again this morning and can already feel that I am more tired. But at least now I have a little hope that this horrible treatment may be working.
Dam those toxins and dam those bugs. They have caused a lot of suffering in all of us, haven't they?
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
From the start, my symptoms have been worse in the afternoon than in the morning (as an example, it just took me three tries to get that last sentence typed correctly ).
Since starting treatment for Bart, a lot of the neuro is exacerbated late in the day -- numbness, tight bands, cognitive difficulty, mood swings and dizziness.
Mornings are pretty good for me. I use the detox foot pads most nights, and I think that's part of the reason I feel so renewed.
Most of my socializing now is either breakfast, brunch or lunch...
Andie
[ 22. March 2006, 10:53 PM: Message edited by: Andie333 ]
Posts: 2549 | From never never land | Registered: May 2005
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posted
I wake up with pain and stiffness in my left arm, left leg and both knees and my neck. It helps if I get up and get moving. I usually take morning coffee on the patio if the weather permits. [I'm in N.C.] My right knee is so degraded that I need a knee replacement [I'm 46] I had the meniscus removed in 1998 due to lyme arthritis. So it pains me all the time. I have a constant humming in my entire body that never goes away. Almost like an low-voltage electric current coarsing through my body. Numbness in lower extremities is all the time. Eye pain, vertigo and migraines. My back always feels 'weak' and 'tired'. Usually by about 1:00-1:30PM I am ready for a nap...even if I do not actually sleep I have to lay down. I try to be back up by 4:00 when my daughter gets home from school.[she's 15] I try to muster enough energy to get dinner on the table by 6:00 [I have to pay attention to meal times as I am also diabetic] I do not sleep well at night even tho I take a high dose of Elavil [125 mg at bedtime] I am up and down all night long, sometimes sleeping in the living room so I do not wake up my hubby who has to get up for work each morning... and then another crappy day begins. And to think I am in my happy place as I write this...;-)
Sharon >^..^<
-------------------- LD 1995 [dx'd 1997] Never had antibiotic treatment Stage 3 skin cancer ['04] Diabetes2 ['05] Name an LD symptom, I've probably had it or have it still. >^..^< Posts: 20 | From Author, homemaker | Registered: Mar 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
it used to be mornings were good until i ate lunch then went downhill.
Now im best late at nite and when i say late i mean past 12 midnight....it seems some nites like i dont have lyme....its so strange.
During the day now, im thirsty, tired, eyes are wacky...typing is tough, mix letters...and i just feel drugged. Slight headache i dont know if its the lyme or the meds.
today i slept until 1230.
everyday its something different.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
I usually wake up feeling okay, but not rested. Some days nauseous, some days with migraine.
On a good day, I can usually read the paper, eat some breakfast, even take a shower and get dressed.
Then I crash mid morning - fatigue, clumsy, cognitive dive, can't find words, can't type well. Not with it enough to do insurance paperwork or make phone calls.
If I don't lie down right away (I often fight the need to nap like a 4-year-old), I get worse very quickly. After lunch, my body forces me to lay on the couch, sometimes for a 4-6 hour nap.
If I do lie down for an hour or two in the morning, I can revive somewhat. But I usually can manage only one activity or outing after lunch, like cleaning the lunch dishes, running an errand to the pharmacy, or doing a little writing or laundry.
By evening no matter what I've done during the day, I am usually worthless. Many times I am too out of it to even read. Occasionally I can't even follow a TV show or movie. I'll try to do art, writing, knitting, or spinning, but I make too many mistakes and often need to re-do the entire project later on.
On bad days, I can't get it together for a shower or any chores or activities or errands. This can be caused by migraines, nausea, joint pain (especially in my fingers lately - moving them can make me scream in agony, like there's broken glass inside the joints), flu-like symptoms, having trouble breathing, heart pounding wildly, dizziness, etc.
Sometimes I can't walk because my right knee suddenly gives out, or my left hip and leg (or other body parts) ache like I've been beaten with a baseball bat the day before. Occasionally I experience so much fatigue that it is impossible to move my body at all.
These occasional symptoms make me grateful I don't have them all the time. I know some people do.
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I wake and get more tired as the day goes on.
Sometimes I have a second wind and a small window between 1-3pm
Between 3-5 tired.
Usually tired untill dinner. Briefly feel better after I eat,like 1/2 hour then I am good for nothing.
Of course if I am herxing or wake up having a bad joint/muscle ,fatiuge or brain fog day-- the whole day is shot to heck and just hope tommorow is better.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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JimBoB
Unregistered
posted
I have been on herbs now for 4 months.
At first I felt pretty good most of the time. After being on herbs for about ten days or less. THis lasted for about a month.
THEN I went on abx, and started feeling BAD most of the time. I could hardly wait for a day to end. Usually worst at night. Better in the morning, especially after breakfast.
NOW a month after NO abx, but plenty of herbs, I am feeling great. Almost like I do not even have Lyme. Go figure.
NO brain fog. GOOD vision. No Lyme arthritis. Just a little stiffness occasionally in the back of my neck, but not bad.
posted
I wake up feeling unrefreshed with blurry vision and pains in most parts of my body. My brain seems to function a bit better in the mornings, no idea why. As the day goes on I feel more tired and get a loads of different symptoms, sometimes tinnitus, heart palpitations, blurry vision, vertigo, confusion, difficulty thinking, etc... By evening my brain almosts stop functioning and I need to be in a quiet room with no one else speaking because I can't concentrate and I hate the noise.
WOAH - just had a very bad palpitation while writing... jeez! panic, oh yeah, I also get severe anxiety and panic attacks when something like this happeneds. GRR Posts: 263 | From UK | Registered: Mar 2006
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BostonLyme2005
Unregistered
posted
FATIGUE!
FATIGUE!
FATIGUE!
Other symptoms, hah...The others are nothing compared to the one I posted!
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JimBoB
Unregistered
posted
ChriB:
What helped me, along with other herbs, was Cat's Claw, Devils Claw, Sarsaparilla, Stephania Root.
Lay off the abx for a few days and try this for at least a couple of weeks instead, and see IF the blurry vision doesn't totally go away in a while. Mine sure did.
Add Andrographis and Resveratrol in there also, to kill the spirochetes.
I am actualy taking Samento with Burbur already, I'm not on antibiotics. I was a little concerned about being on long term antibiotics, so I decided to give Samento a try. I have been on it for over 3 weeks now and I had a severe herx at the beginning. My fatiuge and neuro problems have got worse - but I know this is probably the die off. It's been very slow, I'm only on 4 drops a day at the moment because I feel so tired and weak the whole time.
Posts: 263 | From UK | Registered: Mar 2006
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This is a great way to share information. I'm just learning about this disease, but I believe I've had it for 28 years.
My symptoms seem to get worse as the day goes on. I sometimes have a little residual joint pain and stiffness in the morning when I first get up, but by 9:00AM or so I can't believe I ever hurt the day before. Then about 2PM I start to go downhill. The joints begin to ache and could be excruciatingly painful by 5 or 6. There were many days when I'd leave work that I really wondered how in the world I was going to make it to my car. Even on days when I didn't hurt so bad, I'd usually stiffen up considerably on the half-hour ride home.
Since retiring, the joint pain has improved considerably. I believe it's due to resting more and no longer being under so much stress. Unfortunately, I've developed a blood disorder (MGUS), double vision, and a whole array of other neurological problems.
I believe I contracted Lyme disease while camping in Minnesota back in 1978. I had the distinctive rash followed by the flu. Woke up one morning and my hair was coming out in clumps. Then the trouble started: Abdominal pain, irregular heart beat, arthritis. I remember thinking that I really hadn't felt "really GOOD" in a long, long time.
The doctors weren't aware of Lyme Disease at that time (at least the ones in my area weren't). I started to ignore the symptoms as much as possible as they would come and go. Finally the joints became so swollen and inflamed that I could barely walk. My husband made me go to the doctor. I felt stupid going in there because my knees felt pretty good the next day. The doctor ran some tests and discovered that my FANA was 1:1280. Apparently, this indicated Lupus. That was 18 years ago. And I have been seeing a Rheumatologist ever since. He STILL doesn't know exactly what to label me with, but I take plaquenil and Ketoprofen for imflammation.
I've told the doctors about the rash and my other symptoms. They have tested me with the Elisa roughly 5 times and it's always negative. I had blood cultures about 15 years ago because of the extreme fatigue. Nothing showed up. I got frustrated and figured I'd better quit complaining before they really thought I was some kind of hypochondriac!
I recently heard there were new tests out for Lyme Disease that were more accurate so I've started to pursue this again. I really believe this disease will kill me if I don't get it diagnosed and treated. My liver enzymes are elevated and I get very painful bouts of abdominal pain. Since doing online research, I've also found many other symptoms that I've had over the years that I never knew related to LD.
I feel fortunate that I have been able to live as normal a life as I have all these years. I'm on a quest to get this diagnosed and treated ASAP. I've lost too many years to this monster.
DLD
Posts: 13 | From SW Florida | Registered: Jun 2006
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
In the AM, I feel like rugged arse. My joints are stiff, particularly my neck. I feel foggy and out of it. From 9 am to 12 pm, I feel OK. Depending on when in the month it is, I even ( dare I say) feel normal. In the afternoon from 12 to 4, I FEEL LIKE DYING. From about 5 to 9, Im ok..
and then all heck breaks loose again. ( And somedays, I don't feel anything at all)
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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geniveve
Unregistered
posted
got bit in jun 05, immediately started having severe tinnitis, stiff neck and joint pain. i knew it was lyme but could not get a doc to agree. did not start treatment until december.
mornings are a witch. i wake up so stiff and sore i can barely move. take 10 elavil at night and doc may up it. am not on any pain meds.
my worst symptoms are my head tho. bad headaches, i got from normal to totally po'd in seconds, neck is soooo stiff and sore, lower back is just shot.
by noon i'm feeling better and make it to 5 or 6 but now am needing a nap about 2-3.
i don't know where this is going but am scared out of my mind.
guess i'm lucky, no kids, and no real money problems, spend most of my time alone so no stress....just worrying what's coming and if i can handle it.
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posted
When I wake up in the morning my head feels pressurized. This feeling decreases slowly once I get up. Otherwise, my symptoms are pretty steady, unless I have to have a lot of interaction with other people or have a lot of activity, and then I feel worse.
Posts: 449 | From Vermont | Registered: Nov 2004
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