posted
My daughter and I are botth unwell. I have beeen sick since I was 19 and I'm 39 now. I've had every diagnsis from CFIDS to Fibro to Lyme. I have been a regular patient of one of the top LLMD's in the States on the Eastern End of Long Island since I was 13 years old and he was just starting out as a family physician. I've never had a positive Lyme test though I did have a bone marrow biopsy at one of my lowest points which showed the Lyme Spirochete in my marrow. Depending on what doc I show this PCR test to I still get the "We don't know what that means" or "Definitely Lyme". My daughter and I both suffer from NMH and POTS.
My question is this: We both seem to feel like death warmed over in the mornings and after naps. But come night time we feel relatively good (depending on how bad of a flare we are in at the time). Anyway, night time we both feel so much better that we tend to stay up late and even feel unable to fall asleep until the middle of the night or early morning sometimes. So we walk around all day like zombies and come alive at night.... wait, we're starting to sound like vampires!!!!
I've read that with CFIDS your inner clock can be messed up or reversed but is this true with Lyme? Anyone else feel this way?
-------------------- ~Kristina~ Posts: 173 | From Long Island ~ New York | Registered: Mar 2003
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posted
Me too. Horrible in the morning.....stiff, sore etc.....I start feeling better in the afternoon but I never feel really good.
Posts: 340 | From Ohio | Registered: Oct 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi Christina,
I had CFIDS from 1984 - 1995, then got bitten by the tick in 2003 and have had Lyme and coinfections since then. My CFIDS and Lyme symptoms have been totally different from one another, although I know many people with CFIDS actually have Lyme.
That being said, when I had CFIDS, I had the same issue with being worse in the morning and getting better at night. This was unlike me because I've always been a morning person.
A couple of alternative medicine and acupuncture practitioners told me it was because the liver is detoxing all night during sleep, and you wake up with a big toxic load. I have no idea if that's true.
Interesting, my elderly father was bitten and got Lyme this summer. He is showing the same phenomena of being much worse in the morning and much better at night.
For me, with Lyme, I am not having that pattern. I feel like crud pretty consistently and have a hard time sleeping. The only difference is now I'm on a medication that makes me extra drowsy in the morning, but I know that's a medication-induced situation, not the Lyme.
I wish I had the answer. I don't, but it's obviously something that several people experience.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Ever since I've been sick (1990), I've been the same and know other Lymies (some formerly with CFS diagnosis) who are also the same - dare I say that *most* of us have this problem, and many also have POTS and NMH.
I think there are several reasons, can only think of two right now though:
Lyme messes up the CNS which controls everything, including sleep/body clock rhythms and hormones, and also the fact that the spirochetes may be more active at a particular time of day and less active in evenings.
I know a couple of Lymies who are doing pretty good with the NMH / POTS from taking, I think it is Flourinef, which raises or regulates blood pressure.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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