Just thought i would get a consensus on this to regards aches.

[minka]

How many people on here find that they start to ache more and go to bed.

mine appears to be 9pm for some reason kept thinking it was in my mind but others seem to have this the same when i do a search somthing to do with the body being more hydrated and disc spaces more hydrated through day. Then narrowing off towards the end of the day answers would be grate about what time this happens to you

[EOLHPC]

Good question👍👍👍👍. Am looking forward to following your thread, minka

That theory makes sense to me. And I've run into that disc spaces/hydration theory too. By the time I go to bed, am usually generally unwell & sore anyway. Thanks to my lupus meds, am usually in less pain when I rise in the morning, but at 62 am increasingly prone to oseoarthritic pain in my spine (spondylosis) which can be flaring on rising, but tends damp down somewhat within a couple of hours. I have all sorts of other pain thanks to EDS though....which ambushes me in all sorts of odd ways & at all sorts of odd times 😝

🍀🍀🍀🍀 coco

[minka in reply to EOLHPC]

SO WHAT SORT OF TIME WOULD U SAY THE WORST IS WE ARE ALL IN ACHES BUT WHAT TIME THE WITCHING HR I CALL IT HAPPEN

[EOLHPC in reply to minka]

This is complicated for me, because I lifestyle manage my pain by lying down flat with a cushion under my knees every afternoon for up to 3 hours...have done this for decades now due to both my infant onset lupus symptoms & my chronic spine condition. Maybe 20ish years ago I got to the point where the pain was so bad by 2-3pm that I had to spend most of the afternoon lying down in order to be able to stand up, sit down etc in the evening.

Now my lupus meds are helping so much, I can put this horizontal thing off till 5pm. But no way could I last until 9pm. However, after a minimum of 1 1/2 hours (but usually more like 2-3 hours) horizontally, I can mostly stay up until 10pm before pain & fatigue send me back to horizontal

On the other hand the CPRS in my right forefoot can hit me at any time of day...& mean I must not bear any weight on that foot at all

Hope that makes some sort of sense 😏🍀

[littleeffie]

Its a difficult one with multiple conditions.

I have to wake 😮at 6.00 am to take strong morning meds so can function by 7.00 with stiffness wearing off about 8.30 am leaving me in a physical and legal state to drive.

Hit a brick wall about 4.pm😡 due to fatigue so rest and get up at 5.00 pm .

Then crash😣 into bed about 9.00 pm asleep by 10😴I then wake up repeatedly through night .

If I lie in it makes things worse and if stay up later it ruins my next few days so have had to learn the above routine to have some quality of life.

Same as Coco having Eds and Crps pain wise any time is difficult.

Interesting to see what others have to say so will follow post.

[EOLHPC in reply to littleeffie]

So interesting! 😂😂😂😂Me too: must get up by 6:30 am for similar reasons...takes me min 3 hours before safe to drive anywhere (simply waking body & mind up + doing multisystem treatments + taking meds etc) or even actually TALK sensibly to anyone 😉

[KRutherford]

An interesting thought to pursue as I have also wondered what other lupies pain patterns were. I start out slow in the am with joint stiffness and aching for usually a couple of hours, as well as slowish (dull) mentally.. The pain and edema in my hands, feet, and knee increase after noon and usually continue to increase in severity for hours áfterwards. It improves with rest at night. That pattern is very consistent until I have a flare- at that point the pain and inflammation become very intense 24/7 with very little relief. That's usually the point I am forced to add in prednisone to my regimen. A flare for me can be 4-5 days or several weeks.

[minka in reply to KRutherford]

make sure you are taking those adcal d3 tablets with the predistonem it is most imortant to your bone structure IF YOU ARE NOT TAKING ANY OF THESE TABLETS LIKE 2 A DAY THIS COULD LEAD TO BONE REPLACMENT BEING LOST AND WILL CAUSE YOU LOTS OF PROBLEMS .

THE OTHER THING TO BE CONSERNED ABOUT WHEN TAKING THESE TABLET IS LIGAMENT ATTACHMENT POINTS ESPECIALY AT THE KNEES AND ANKLE JOINTS. ANY SORNESS THIS COULD BE THE CULPRIT.

[misty14]

Hi Minka

An interesting question you've raised about aches and time of day. This is what I've noticed happens but treatment has helped . After 1 pm inflammation can start and really kick in after 6 pm hence the need to go to bed early like your other replies. I can flush and feel hot at this time too specially if flaring!. Then can wake early am due to inflammation and be very hot and in pain , better once breakfast pills have been taken and have kicked in. This could be dubbed inflammation time , a new clock we have to adhere to to live any kind of life!. Hope you improve. X

[minka]

thanks for all who took part in this we cound have done with others but at least a few have responded

Its an interesting topic and one that varies but it would seem most of us on med can get buy but towards the end of a day we are bushed. I will do something else next for a consensus.