Do you tend to feel worse at a particular time of day?

[SaveMe]

My symptoms tend to exacerbate more so at night time, although other times it is completely random when I get "flare-ups".

 

[WendyM]

I have 2 "good periods". First thing in the morning for 15 minutes to an hour, and then gradually start improvingaround 5pm ... so that my best time is 7-10pm.

 

[SaveMe]

Interesting, I guess im the exact opposite from you. Do you also have FM?

 

[August59]

My worst period is from about 10:00am till 3:00pm and usually at my best from 7:00pm until 11:00pm. I currently am having a big problem with getting a good nights rest and trying to keep to what used to be my normal daily schedule.

Hormones are really out of balance right now!

 

[meadowlark]

I can't say one period is worse than the other, but I almost always have fever and chills while sleeping. They usually lessen when I'm awake.

On the other hand, a migraine starts within two or three minutes of waking up, and lasts all day. It disappears when I sleep.

A list of other symptoms are completely random, but I've always found the way the night and day are reserved for fever and migraine respectively to be bizarre.

 

[TinyT]

I always feel worst in the am & for the first few hours after getting up. I'm rarely up before midday. I usually spend the afternoon on the couch and drinking lots of water & rehydration mix to manage my POTS. I find I also feel the best at nighttime ~ 7-11pm

 

[SpecialK82]

I'm also best in the evenings. Sometimes it's difficult to make myself go to bed when I should because I finally feel a little relief.

 

[TinyT]

I agree specialK82! I never feel like going to bed either because I want more time feeling 'ok'

 

[Lee Ann]

I usually get 3 hours out my morning...On a really good day I can make it pass lunch.... Then I'm usually worthless till around 4 pm sometimes 3 if I'm lucky.... evenings are usually my best time. In the beginning I was in the bed most of the day so I have made some improvement.

 

[Marg]

I always feel best at night starting about 7:00 and even better starting about 10:00. Sometimes about 11:00 I feel perfectly fine.

 

[Mark]

I'm useless for the first 5 or 6 hours after I wake up (which these days could be ANY time frankly!), getting gradually better later during the day, and generally feeling fine by bedtime, so that I too tend to stay up late just to get a few hours of productivity into my day. If I try to get to sleep at a 'normal' time, it doesn't help, because even if I'm not itching I generally can't sleep unless I'm properly tired. So nowadays I tend to just sleep whenever I'm tired and keep on working whenever I can.

So far, everybody seems to have the opposite pattern to SaveMe! IMO, the probable explanation is: we can't sleep properly, and in some respect sleep is actually exhausting for our bodies. There's the phrase "it's like your body is running a marathon every night while you're asleep", which seems to fit - something to do with cortisol and cytokines failing to switch off their activity, I think (?)

SaveMe, I think I've mentioned this to you before, but my guess for your pattern is that it might suggest some sort of chemical sensitivity, or some other kind of sensitivity. Such things can take years to track down, I'm afraid, but they make a big difference once you've figured out how it works. Although the flare-ups may seem random, I would tend to suspect they aren't, really. I suggest: try to identify where you are, what you are doing, where you are sitting/lying etc, at the time when things start to go wrong during the evening. If it's always happening when you're in bed, then the bed itself is an obvious candidate. I haven't been able to sleep in a bed for a few years now - I sleep on a leather sofa, which is very far from ideal still, but a massive improvement from when I was still trying to sleep in beds and going through one mattress after another, one set of bedding after another, and just getting worse. Whenever I try (or am obliged) to try sleeping in a bed again, it's straight back to the old nightmarish situation: probably one of my biggest ambitions for my life would be to be able to sleep in a bed again one day!

 

[soxfan]

My worse time is after 3pm. I am totally useless from then on...sometimes it happens earlier. I haven't been able to do anything at night in over 5 years. Resting in the afternoons actually makes me feel worse even though I never fall asleep. In fact I don't feel sleepy just physically drained..so going out to dinner etc. is out of the question for me.
My sleep is terrible just about every night but I am working on that.

 

[liquid sky]

I can't get out of bed much before noon or 1 PM usually. Still pretty much useless until 3 or 4pm. Best time is evening till midnight. I too often don't want to go to bed. I know I'll wake up really sick again.

This drives my family crazy. They think I just "like to sleep in". I gave up trying to explain it.

 

[Mij]

Best time for me is 7pm-11pm. This is when I do my exercise when I'm feeling well enough.

In the mornings I can't walk 2-3 blocks without feeling a bit out of breath or as though my legs don't want to take me- they feel stiff like with no blood circulating in them. I nap in the late morning or early afternoon and as the day goes on I start to feel more energy with rests inbetween of course.

 

[Molly]

I feel horrible all day, and the "flare-ups" correlate with time to take meds, or drink water, but mostly "head down-feet up". Strangely, after 8:30 p.m. I feel great with minor flares and can go all night. The insomnia just encourages this till about 3 a.m.!

 

[ukxmrv]

Does anyone else find that their good/bad times coincide with cortisol levels? Mine seem to mirror them (saliva and blood tests).

 

[SaveMe]

the bar graph looks like those Verizon bars

 

[dannybex]

I'm useless for the first 5 or 6 hours after I wake up (which these days could be ANY time frankly!), getting gradually better later during the day, and generally feeling fine by bedtime, so that I too tend to stay up late just to get a few hours of productivity into my day. If I try to get to sleep at a 'normal' time, it doesn't help, because even if I'm not itching I generally can't sleep unless I'm properly tired. So nowadays I tend to just sleep whenever I'm tired and keep on working whenever I can.

So far, everybody seems to have the opposite pattern to SaveMe! IMO, the probable explanation is: we can't sleep properly, and in some respect sleep is actually exhausting for our bodies. There's the phrase "it's like your body is running a marathon every night while you're asleep", which seems to fit - something to do with cortisol and cytokines failing to switch off their activity, I think (?)

I agree Mark, plus I've read in several places that the overwhelmed liver does it's cleanup work during the night (?), and if our body clocks are skewed -- and we're eating late, etc -- then that detox is hampered (?). Plus there's the whole screwed up cortisol pattern as well.

Anyway, my pattern fits yours exactly, and is getting worse.

Bumping this old poll for more results and feedback.

Klunk.

 

[John Mac]

I am at my worst when I wake in the morning. I get progressively better as the day goes on until the late evening when I feel fairly normal. The only ups and downs during the day is after I eat a meal I feel very tired and it's only after the meal is digested does the improvement continue. After my evening meal has been digested I feel fairly well.

This was the case when I was still working full time when I would feel less tired at the end of the a days work than at the start of the day. Telling other people this was the only time that I ever got a response that was other than "yes I get tired at times as well".

 

[*GG*]

I am at my worst when I wake in the morning. I get progressively better as the day goes on until the late evening when I feel fairly normal. The only ups and downs during the day is after I eat a meal I feel very tired and it's only after the meal is digested does the improvement continue. After my evening meal has been digested I feel fairly well.

This is me as well.

GG