What is everyone's daily symptoms pattern if any? I usually know how most of my day will be when I wake up. Most days mornings are the worst when I feel malaise and depending on how strong it is, and what I have to do, I get better in the evenings. Evenings are usually much better and almost normal. It drives me crazy sometimes knowing how well I feel getting ready to go to bed and expecting to feel crappy once I wake up. Anyone with similar patterns?
Feeling bad in the morning, well at night. - LUPUS UK
Feeling bad in the morning, well at night.
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Tanitani
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Hi Tanitani I feel exactly the same as you in the mornings. Every morning is the same with variable degrees of pain ,fatigue etc. I can generally know how the day will be. Sometimes I think that I will stay in bed for longer but when I get up it's just as bad Sometimes worse. I have an appointment with the rheumatologist tomorrow so hopefully will get some answers. Take care
Wishing you so much luck 🍀 for tomorrow .. mad really shouldn’t need luck but we all know what it’s like 🙄xxx
Feel like death 💀in the morning to be honest but was waiting for someone else to comment first so I didn’t sound like 🎭 drama queen 👑! Healing hug xx
Tiggywoos you aren’t a drama queen and I feel the same too. Usually better in the evening although it depends a bit on how bad it was furst thing. I can feel it from 3-4am when pain often wakes me up.
Honestly that’s so spooky as I got up and went down stairs at 3am last night horrible pain under left rib . Had a little snack and hot drink then felt bit better . ❤️X
I agree Tiggwoos you are not being a drama queen I am quite often downstairs at 3-4am in pain making tea . Also feel terrible in mornings and feel better as days go on. It feels like walking through treacle in morning then by evening its runny honey , it’s weird , been like it for years. Peppered with really lousy day s and the occasional really good day ☀️😊❤️ Fingers crossed today’s gonna be good 😍 Take care M x
I could have written this ❤️
ShannonBI am sorry to hear that . Before i was diagnosed i thought it was just me, that i was just tired and i pushed myself way too hard. Then it just came back to bite me big time. I also found this support group and realised others had the same problem, doctors dont tell you any of that or really empathise like people on here do.
Now i allow myself two hours to pull myself round in the morning, i avoid early morning appointments or meet ups and I am kinder to myself.
Be kind to youself , we all need to be. Especially how life has been over the last 18 monthes . Take care M x
You’re so kind ☺️.. you take care 🐥❤️X
I'm worst first thing and can also gauge the day by it.
Other strange things:
-Half way through the night I often start to feel bad. If I get up it helps, and maybe the next day is better also if I get up. I often get up for two hours 2am - 4am - maybe eat something and do some tidying up etc.
- Sometimes the nights I can't sleep mean I'm feel less strange the next day. If I sleep well I can feel terrible when I get up.
I've got a feeling that more antibody is released when I'm asleep...my glands come up at night more than during the day.
I can relate to this. When i travel and jet lagged, im feeling great, if i did t sleep properly.
I mentioned this to the rheumatologist as walked out my first appt two weeks ago...that I actually feel better sometimes when I don't sleep He seemed interested. I guess they know why this is. It is difficult to track down research on things like this. I wonder if any studies have been done.
Yes ! I feel worse after a good sleep. Not that it happens often. I often forget my suppertime meds and take them at bedtime , so I blame them. It's not pain just feeling bleugh !
I would agree and can relate. I quite often spend time tidying up at night when i cannot sleep. My time is 3 til 5am . I drink tea, take painkillers , tidy the kitchen, put the washing machine on, do online food shopping and write lists , drink more tea, read then go back to bed. My family dont really understand it !Sometimes i settle better so i totally get what you are saying. M x
Hi Maddy, for me I often get up - 3-5 am too, often I do loads of washing then...often have tea too.
I've put out another post to gather more info from folk as really interested to understand what happens in the body - before, during and after this:
Exactly. On point I sleep early then wake around 3 to 6 am I either just stay up or wake around 9 am or 11am and strangely I do feel better with out sleep I sometimes feel like like I am light headed.
Wonder if it has anything to do with cortisol levels dropping as I think they do early hours ?
Think the answer is around here. I wonder where to find out this endocrine stuff - is there a good web resource?
I think from something a GP may have said that insulin also goes up, and sugar down.
I think it is the most dangerous time of the night, metabolism wise, and people who pass away in their sleep, often pass away around this time ...
I guess the body is alert to this and we wake up and sort things out..whatever fixes we know work.
My potassium goes down and sometimes I need Sando K.
I've a diabetic friend who eats a banana every night.
Hi Tiggywoos,
Strangely enough, I have been referred to Endocrinology for a Synthacen test as I have developed similar traits since reducing prednisolone…my early cortisol level was 186 and deemed low - could be a problem with the adrenal glands.
This is not to say this applies to everyone of course - just that your comment struck a chord.
That is interesting thank you . Do you mind me asking how you tapered down ? I’m down to 5mg and Dr said just stop but I definitely can’t do that so was thinking go down by 1mg a week x
Hi Tiiggywoos,
For me, the advice was to reduce by 1mg per month! This was to give my adrenals chance to adjust as I was feeling rotten trying to reduce by 1mg per week. I’m not so sure just ‘stopping’ at 5mg Is a good idea. I know that is perhaps because it is a lower end dose and our adrenal glands naturally produce between 5-7 mg of cortisol. However, I do recall the pharmacist telling me that ‘taking steroids over a period of time makes our adrenal glands lazy’ so they obviously need time to readjust . I actually felt best able to cope on 5mg. Down to 2mg all many symptoms returned. Back to 3mg until the Endo’ appointment. Just about holding together. The rheumatologist said not to reduce any further until then as it could be problematic.
Maybe some advice from your rheumatologist? My GP practice Pharmacist was more helpful than my GP too!
Best wishes
Sue 💐
.
Hi Tiggy 🤗Blooming doctors!! Honestly!! 🤬
As I understand it..stopping pred suddenly can cause adrenal crisis..depending on how long you've been taking them..and adrenal crisis can be life threatening which is why we have to carry steroid cards.
I'm currently on 5.5mgs n I reduce by 0.5mgs when I feel ready basically. I've been on pred continuously since Dec 2018 and I feel awful after dropping just that small amount..I've now decided to stay at this level until I get my methotrexate increased.
I'm sorry I don't know your full story but I posted on here a few days ago n someone told me that her rheumy nurse says that the lower u go on Pred the more difficult it is. It must be done VERY slowly!! In another reply from JMiller..she said that some people stay on 5mgs for life.
Just thought I'd comment coz I'm worried that 1mg per week will cause u problems n I wanted to make u aware of potential hazards.
Take care 🌈😽😽xx
Absolutely, Krazykat26!
This is why Steroids are not to be messed with lightly! You would think by now most GP’s know enough about the effects they can have on the body - both good and bad (sudden withdrawal especially) And yes, my not so helpful GP said ‘you may not ever be able come off them completely’ Joyous!🤕
Hello my lovely ☺️.. I’m so sorry I didn’t reply to this I couldn’t find it 😂🙈! Yes totally ridiculous going from 5mg to 0mg ! I’ve slowly gone down to 2mg but it’s tough .
Basically I’ve been waiting for nhs rheumatologist appointment and I’ve got one in October. He wanted me to be off the steroids so he can run blood tests . Cardiff man diagnosed scleroderma/UCTD but no positive ana so southmead re doing tests .
I love ❤️ this forum so much and you are all so lovely ☺️.. it’s my safe place .
Big hugs 🤗 and hope you have a nice day xxxxx
Good morning Tiggy 🤗Very well done for getting to 2mgs 🙌!! I see..so it's all part of the plan to get more accurate blood test readings.
October's not too far off now so I hope all goes well at your rheumy appt 🤞u get a clearer picture and a way forward with treatment.
I'm so glad you're speaking to me again!! 😉😹
Take care 🤗🌈😽😽xx
Thank you angel 👼. I’m not sure I’ll make it to October 😂. Everything seems so heightened . Hubby was eating hoola hoops and it sounded so loud I wanted to put ear plugs in 🤣🤣. Can’t type what else I wanted to do ! Did you manage to get some sleep 😴 without pills ? X
I get that too.. hypersensitivity to absolutely everything! My ears are really doing weird things at the moment..I have periods where I can here everything super LOUD n then suddenly my ears block n I go partially deaf!! It's not always equal either so one ear might be less 'blocked' than the other one! 😹I can only imagine what else you wanted to do to your hula hoop chomping hubby!!
I had a good night's sleep thank you..I did have enough pills for last night so I haven't gone without 😉🌈😽😽xx
Gosh yes the ear 👂 thing is rather odd … quite often it’s like someone keeps switching the tele 📺 up but they haven’t 😂. Don’t even get me started on teeth 🦷 scrapping in fork 🍴. I make my excuses and leave the room !!!!!So glad you slept ok 🧚♂️xxxx
😹😹omg I'm the same with the heavy handling of cutlery too!! I don't leave the room though..usually a hard stare is enough!! 🤪🌈😽😽Xx
😂😂🍴brilliant !!! Love it 😍. Sniffing is challenging too 🙈😂xx
Gosh yes can totally relate to that ! X
Have you ever had a sleep study? If not you might want to consider it. You can do it at home sometimes now. Apnea should be ruled out.
I did a sleep study before and got the cpap machine but Im convinced I dont have a sleep apnea and the doctor hardly looked at the study (i didny sleep during the study) and just wanted to sell me the machine. The sales person had the office right there. When I did use the cpap i didnt see any improvements to how I feel when i get up
I defo thought about sleep apnea but when I mentioned it to consultant he said I was too slim and don’t if I didn’t snore I wouldn’t have it 🤔x
Central apnea is different and weight and snoring are not necessary to have it. A diagnosis can be made just by looking at your printed out oxygen levels while resting. If they drop often apnea is happening even while in and out of sleep sans snoring.
Oh my goodness thank you Roarah. I bought an EMAY pulse oximetry to use over night and it does show I have lots of episodes where the oxygen drops below baseline . X
I always say I wake up like I’m waking up from an anaesthetic. I feel groggy, achey and it takes me ages to come round. I generally feel awful. This is why I never nap because it literally wipes me out and takes ages to recover from the nap if that makes sense. I walk like the tin man until the feeling is out of my system.
Interesting. I do feel like naps are good for me thou, it does make me a bit worse but as soon as i get up from the nap i feel better than before the nap. I try to walk on a treadmill to shake the malaise. Many times successful but about 30% of time i dont get any better
Going on a treadmill sounds like a good idea , will try that tomorrow for 10 minutesThank you M x
Treadmill sounds good. I don't have one but will try walking around more, going outside etc. Thanks
I discovered that simply walking doesnt do the trick. You need to do something to break the sweat. That happens to me from fast walking on a thredmill for 20 mins. I know its hard but i force myself with all my might and then i feel better
I've started pushing myself more the last couple days.
Went swimming in a pool with only a few people (all distancing).
First time in two years swam. It was glorious. Cost £15 for a week's membership.
Also doing lots of exercise at home.... it seems to be working...
maybe it is giving the body something else to focus on, reduce bad immune activity ...thanks
It feel to me as if the blood and lymph starts moving better from exercise and removes all the bad stuff otherwise stuck. But thats my feeling i have no proof.
Interesting i can relate to that groggy feeling, but if i have a crap night, i have to nap or i cannot function .But i set an alarm for 90 mins then force myself to get up. M x
Im getting up tomorrow very early. I will have only 6 h of sleep, so i hope i will get up in good condition. Im wondering if sleeping less for longer stretch would be helpful...
Poor you, good luck M x
Interesting, 8 years ago l gave up my job, one of the reasons was l felt awful every morning and would start to feel better late afternoon often feeling at my best in the evening. This was put down to stress by the GP although I didn't feel stressed. So l gave up my job. I have finally been diagnosed this May with Lupus after a major flare. Like others l often have the 2am to 4 am get up, l did last night. Usually wake up having sweated so that sheets are wet and joints hurting. I get up and have a cammonmile tea read for a while then go back to bed. At the moment I feel like I am surving rather than living. My 91 year old father can walk faster and further than I can. Next week l have my second Rheumatologist appointment, just hoping that there is more that can be done.
Sorry sounds like you are having a rough time, Please tell you rheumatologist how rough you are feeling there are other meds out there that may help. I dont where you live but if your hospital has a connective tissue nurse it may be worth asking for an appointment with her. I find mine so helpful Take care M x
Thank you, I just find this a rollercoaster I think I am making progress then go backwards. My persoality is very active and 'doing things' in March I was training for a long distance walking event and now I can just manage to walk around the supermarket and have continous knee pain and swelling. Anyway keep trying to be positive but after so many months it is getting harder. thank goodness for this forum
It can be difficult if you are usually active to suddenly find you are not. Painful knees are a real hindrance , i do think you need another opinion maybe another gp , even just for the knee pain? Maybe short walks but a couple of times a day ?M x
I have a Rheumatology appointment next week, so I am hoping for some advice then. I am on Hydroxychloroquine 400mg, and currently on 6mg of prednisolone. I was originally on 15 mg of prednisolone and making progress but I have been tapering it down as directed and since I dropped below 8 it has been all downhill. Thanks for your concern, friends and family are kind but they just don't get it.
Doctors prefer you to be on as low dose as possible. But this low dose is different for everyone. If yoj cant function with 6mg you need to tell them and they would increase prednisone to the minimum where you are feeling functional. Also you will pro ably start on immunosupressants that will allow you after 5,6 months to try lowering slowly prednisone so you figure out your minimum.
All the best for your Rheumy appt Cowsaresweet. 🌼🐄🌼🙏🙂
Out of interest anyone who is on hydroxychloroquine what time of day do you take it? I take mine in the morning and I wonder if it would make any difference moving to taking it before bed?
I take mine twice one day and once the next so i take it morning and evening but always after food. Without food i feel nauseous and blame the hydroxy. Hope that helps M x
I take twice a day. Also w food.
Hi, I can completely relate to this often I wake feeling nauseous too and an urgency to open my bowels. I think it might be my IBS but would love to hear if anyone has any remedy for morning nausea.
HiI am not sure if you can eat them but I find anything with ginger sometimes settles me, so ginger biscuits with weak tea , in bed then let it settle before properly getting up .take care M x
Thank you. I will definiately try the ginger biscuit and weak tea. Take care x
Same here. No energy in the morning, then by eight or nine at night, wide awake, so I do my housework at night. My energy of only lasts for an hour or a little more, then I'm exhausted again. Put some Voltaren on the sore spots and go to bed.
Hi Tanitani
I've put another post to find out times of clinic appointments, if afternoon not so much is seen first hand by rheumy. If they saw folk first thing then more would picked up, without hospital stay..
Yes! Mornings are awful I have a though time getting up with pain everywhere, my joints, my torso with rib pain I can feel the rib muscles tightening, my chest area especially my left side and my under arm. I wake tired. I get up to eat, coffee and eventually I start hurting more and get to bed as my back with my spinal lesion burning 🥵 ugh! A daily occurrence 24/7 I take my daily nap and wake maybe around 2-4 pm. I rest, stretch immediately than during slot of water and pain is bearable. I am able to get up again and go into main room to eat or munch while watching tv, reading, researching genealogy or other stuff. There are days where I force myself to go to appointments and get out of house. Come home to rest. I am constantly in my bed. Tired of it, tired of pain. Prayers for all that goes through this depressing scenario.
I feel the same but different degrees of pain through the day. So much pain as I get up i the morning and the pain does not go away until i have a hot bath. The body gets used to the moves after about 10 am and strong shot of coffee and pain eases, and at night it is a bit better but I feel tired and the pain is still there. I got worse in the last 6 months.
Hi Tanitani, for me it depends which symptoms you are talking about. I’m tired in the mornings, regardless of how much or little sleep I’ve had, but it’s certainly worse if I lose even as little as 30min sleep. Sometimes my energy picks up during the day (which is weird coz I’m a morning person) but then I often crash hard in the afternoon. By evenings my energy is falling off a cliff. My arthritis and pain levels are generally worse as the day goes on, but my TMJ pain is by far worse in the mornings (after I’ve spent all night clenching my teeth). I can hardly eat some mornings coz the pain and jaw dislocation is so bad.
Thanks for response. I didnt know tmj pain could be so bad. Im assuming you did a lot of things to treat it? I had good success with massages inside the mouth, the type rolfers do. But the best was the night guard, somehow it also relaxed my jaw even thou it was only supposed to prevent teeth from getting grinded down.
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