I know this is odd, but I have noticed a strange trend in myself. On nights when I get little to no sleep the next morning I seem to have less pain and a little more energy. It seems to be contradictory but it has happened so often I thought I would see if anyone else with Lupus experienced this same odd behavior! I guess it could just be adrenaline and my docs do not have an answer. Has anyone else noticed this lack of sleep upside?
I have had many mornings like that. I agree with you that I always think it is an adrenaline rush because I do get tired in the late afternoon.
Thanks. This is an example of why I love this site. Some symptoms (like feeling better after no sleep) are embarrassing to discuss with docs because I feel like I just sound crazy!
Hi jammingirl,
I go to bed about midnight and wake at 6 or 7am with spasm pains and never feel no different but a friend on here goes to bed early wakes early and as told me her fatigue is alot better where the pains concerned...it's weird how it affects we all so differently.
Terri :)
Dear Tez ... the last two days have been very scary. First could not sleep at all Sunday night due to extreme pain, first in joints and shooting muscle pains everywhere; almost like funny bone pain if that makes sense, spasms; got up and got on the computer, worked a little; laid down around 2:00 p.m. Monday - could not work anymore - (took meds to sleep), woke up around 9:00 p.m., with same severe muscle pain and joint pain (more than I have felt in a long time - debilitating completely. Could this be the Lupus part? I have been diagnosed with PsA, but they are still hoping for a positive ANA to say I have Lupus. I remember having a lot of the muscle pain years ago when this started (hurt to touch my skin, as well). I do not have Fibromyalia. Could this be related to Lupus or ?? Anything you have heard of before? I remember this type of pain very well now, when things first started .... so maybe it is coming back in addition to the daily back and joint pain everywhere. Thank you, Tez!
Tez_20 said:
Hi jammingirl,
I go to bed about midnight and wake at 6 or 7am with spasm pains and never feel no different but a friend on here goes to bed early wakes early and as told me her fatigue is alot better where the pains concerned...it's weird how it affects we all so differently.
Terri :)
The longer i sleep, the more pain and fatigue i have. If i sleep late, i don’t do well for the day. Over years, docs have said it’s because the body has more time to stiffen, thus taking longer to get “oiled” for the day. I, personally, think of it like the tin man in the Wizard of Oz.
I thought I was the only one that experienced this. This happens to me ALL the time. I have no explanation for it. But I do seem to have better mornings on the sleepless nights.
yes this happens to me aswell if i get alot of sleep it takes me so much longer to come out of the grogginess and then i normally end up napping during the day but if i get 7 hours or under i seem to be perkier and am able to get through the day without napping... ive noticed i get up early at around 5 and feel ok but think its too early and go back to sleep till around 9 and then feel groggy... weird
thanks so much for the comments,I thought if I put this out there someone would relate! Most of the time I do get up at the same time every day. I do better in the morning. Evenings and afternoons are the worst. By 7pm I am done and often in bed and can even be asleep by 8:30 or 9. My friends think this is ridiculous but I seem to lose all energy and it is useless for me to try to stay up and do more. Even on elevated prednisone, the “upness” wears off so much more quickly than it used to. I often wonder if my body no longer produces cortisol. I have been on steroids for 25 or more years now.
Hi, I also have this problem ! But we finally able to sleep I sleep for a long time, which by then my body tells me, You better not get out this bed for nothing ,“only to eat, use the bathroom and back in bed”! Ha!Ha! By that time I am totally lazy and I don’t want to move at all… I think we all at some point go through this stage/moment, I don’t think no med will help with this , my doctors have given meds for sleep ,yes they work for a moment and when your body adjust to them ," It is like okay Why are you taking those meds -they don’t work anymore?" so now I just go with the flow, pass out whenever , or sometimes I just lay in the bed until I fall asleep!!! Hope that this don’t last long for you…Beverly L.
Have you ever had a sleep study done? Is it possible you have Sleep Apnea (where you stop breathing for multiple periods a night, allowing your blood oxygen levels to go quite low)? I had it, and it can make you feel pretty lousy - you wake up feeling more tired than when you went to bed, and you can often wake up with a terrible headache (from the oxygen deprivation.) Do you snore a lot - if so, it’s not unlikely - many people who snore a lot have OSA (Obstructive Sleep Apnea) and don’t even realize it. If you think it’s a possibility, you should definitely mention it to your doctor. It IS very treatable, and untreated, it can be quite dangerous, and is especially hard on the heart, which is the last thing we folks with lupus need. (Mine went away when I lost over 120 lbs - being very overweight is quite often a contributing factor, and apparently was the main factor with mine.)
One other thought, have you been tested for fibromyalgia (it’s not uncommon to have both fibro and lupus) - one of the main characteristics of fibro is poor quality, non-restful sleep, and disturbances in sleep patterns. Typically they prescribe one of the SSRI antidepressants like Tramadol to see if it will help. For me it didn’t help at all, neither did any of the things like Lunesta or Ambien. The only thing that works for me is a small dose of clonazepam (and my dr. also recommended melatonin, which seems to help.) But some drs are hesitant to prescribe the clonazepam because it’s in the Valium family, and therefore the potential for abuse and addiction. Fortunately after 15 years, my dr. knows I am not the addictive type - it would have manifested long ago, if I was, with all the meds I’ve had to take over the years!
Good luck - I’ve had other sleep problems in addition to the OSA for over 14 years, and I totally sympathize. Btw don’t underestimate what damage those nights with little or no sleep can do, even if you seem to feel bettter after them. Your body NEEDS the sleep time to repair and restore and heal - even more so when you have an autoimmune condition to deal with.
Hello Tootles,
This lot your throwing at me is sending your body clock all over the show and waring you out and if your lacking sleep take a sleeping tablet mate because some morning's i'm that drained i take a valium to re-knock me out as i need the sleep.
I'm not a doctor to diagnose as you know but suffer enough and here's the symptoms you have with PsA
- A very noticeable swollen finger or toe.
- Swollen and tender joints.
- Stiffness when you wake up or sit for hours; stiffness fades as you move.
- Nails that are pitted.
- Nail separating from nail bed.
- Lower back pain.
- Heel pain.
- Swelling on the back of your leg above your heel.
These symptoms usually follow after having psoriasis of the skin which i also suffer from.
Otherwise your symptoms do sound identical to Lupus because the pain throughout the body really sets into the bones and it's pain you can't describe and the muscle pain well that's indiscribeable...read this link on pain and muscle issues with Lupus and touching the skin if you have Lupus even lightly does hurt, my hubby as only touched my arms and i've told him to leave me alone, it sounds soft but you feel like someone as hit you.
http://www.lupusny.org/about-lupus/fight-lupus-body-and-mind/easing-joint-and-muscle-pain
When your getting all these symptoms like this a flare is arising and sometimes if the Lupus is very active it can make your body like this all the time...which mine is now with all the overlapping i have but here's a list for Lupus flare ups.
Be aware of one or more of these symptoms:
- Persistent fatigue out of proportion with what you would usually expect
- Persistent weakness
- Aching all over
- Fever, which may be slight to high (you can check your temperature yourself)
- Persistent loss of appetite
- Involuntary weight loss
- Increasing hair loss
- Recurring nose bleeds
- Sore on the roof of the mouth, which burns with spicy foods
- Unexplained skin rash anywhere on the body
- Hives
- Sores on the skin
- Painful joint(s)
- Swollen joint(s)
- Stiffness of the joints when waking up in the morning
- Chest pain which increases with breathing
- Shortness of breath
- Coughing up blood
- Persistent unusual headache
- Nausea or vomiting
- Recurring or persistent abdominal pain
- Persistent, increasing swelling of the feet and legs
- Puffy eyelids
- Blood in the urine
I hope this info as helped mate and you do sound Lupus related, if your ANA comes in negative, Lupus does fluctuate the blood and can cause false readings, so tests need re-doing all the time every 6-9mths and please read the link i've added plus when you can read "Overview of Lupus" at the top of the page.
All my love Terri xxx
Tootles said:
Dear Tez ... the last two days have been very scary. First could not sleep at all Sunday night due to extreme pain, first in joints and shooting muscle pains everywhere; almost like funny bone pain if that makes sense, spasms; got up and got on the computer, worked a little; laid down around 2:00 p.m. Monday - could not work anymore - (took meds to sleep), woke up around 9:00 p.m., with same severe muscle pain and joint pain (more than I have felt in a long time - debilitating completely. Could this be the Lupus part? I have been diagnosed with PsA, but they are still hoping for a positive ANA to say I have Lupus. I remember having a lot of the muscle pain years ago when this started (hurt to touch my skin, as well). I do not have Fibromyalia. Could this be related to Lupus or ?? Anything you have heard of before? I remember this type of pain very well now, when things first started .... so maybe it is coming back in addition to the daily back and joint pain everywhere. Thank you, Tez!
Tez_20 said:Hi jammingirl,
I go to bed about midnight and wake at 6 or 7am with spasm pains and never feel no different but a friend on here goes to bed early wakes early and as told me her fatigue is alot better where the pains concerned...it's weird how it affects we all so differently.
Terri :)