Anyone else having a bad night?: Can’t sleep. My... - LUPUS UK


29,886 members26,456 posts

Anyone else having a bad night?

lisa___s profile image
10 Replies

Can’t sleep. My legs are killing me!! Burning aching thighs. Pain deep in what feels like my bones. My legs feel heavy but like they’re wasting away like I’ll wake up in the morning and not be able to use them. I’ve got tingling like pins and needles down to my feet.

My brains is doing over time.... what’s happening to my body, I just want a break.

This week has been tough. I just want to sleep.

I’ve been awake since 6am.

I think it’s the actual realisation, this is my life now. This is happening. I have something that can’t be fixed, just hopefully managed (used in loose terms.) I have to get used to this now and accept it. Find ways to manage it.

I’m going to get good days and I’m going to get bad. But I’m at the beginning of this new chapter in life and I’m struggling to adjust and I guess that’s ok.

I’m just going to cry if I need to cry. Have sleepless nights and just be tired the next day, it’s not the end of the world. But it is bloody exhausting!!! But I will deal with it and carry on.

Sorry to vent.

10 Replies
Ianrussell69 profile image

I’ve had a good run really but the last 2weeks I’ve known it was coming awful weekend been getting up at 4am night swets shoulders and neck sore and migraine on and off for over 2weeks.hope you recover quickly try a warm bath this really eases my muscles and knees

Mellisa1066 profile image

Hi Lisa_s

I’ve not been asleep yet so I know how you feel. It’s like I’m awake 3nights on the trot then sleep all night through sheer exhaustion by the 4th night.

I’m either up vomiting or pains from my organ issues from my lupus. Or I do sleep and then can’t move as I’ve seized up with my arthritis from not moving but I’ve never slept longer than 4hrs on my good night. It does get to you emotionally at times. So I’m with you on that one. I’m on everything that they can give me and have a wonderful consultant but some days you can’t help but loose the smile and burst into tears.

I find it hard as I don’t socialise much and don’t want to put my health problems and worries on my husband and daughters or my mother . So I keep my fake smile on for them and just keep my chin up. Today is not a good day unfortunately and I’m feeling quite like you. We are all here to listen to each other that’s what is great about this forum, it has def made me feel like I’m less alone in my pain.

Hope you get some good help and support for your pain and make sure you see your Dr or Consultant about those legs pains if it’s new. It’s very important with lupus. I have the same and it’s my vascular system as it’s damaged all over my body but it can be more damaging so just call your Rhematoid helpline or Dr even.

Even just to tell them how your feeling , sometimes we need a little help as depression can come easy with lupus and other long term diseases. Doesn’t mean we are not strong 💪🏻!


lisa___s profile image
lisa___s in reply to Mellisa1066

I’ve just called the doctors for an appointment this afternoon but we’re snowed in so not sure if the doctor will make it. Fingers crossed x

Sounds like your having a tough time. I know what your saying about not wanting to bother you family so you keep it all in. I found that caused more problems, so I’m trying to just talk to mine at the real tough times and he’s wonderful and very reassuring. He’d rather me talk then bottle it up xx

Mellisa1066 profile image
Mellisa1066 in reply to lisa___s


Glad you have your appointment hopefully you get to see the Dr and get some reasurrance or redirected to the right Consultant for your problem.

Let us know how you get on , good luck 🍀


MsAndyIvy profile image

Sounds exactly like me last night!

Cue chorus of ‘We’re All In This Together’ from High School Musical. 🎊🎶🎵🎶🎵

Lack of sleep making me dafter than normal.

Mellisa1066 profile image
Mellisa1066 in reply to MsAndyIvy

Not watched high school musical but the song is definitely appropriate for us all on this forum 😂

Cas70 profile image

Ditto with the long nights and burning body! I use Dermacool on my lower legs when they burn or if my muscle and joints are hurting I put Olbas Oil on them - it really helps ! Only those who have this awful illness know how uncomfortable it is and how unrelenting ! You are not alone x

ava97 profile image

same here lisa...😖😖.I also feel this horroble knee alwz hurts me.back pain kills me evrytime whenever I feeling in the body and dry feeling in mouth and all over the body.sometimes I one see no one ever knoww how I feel.I cant explain them even if I want to cause many people didn't understand how I feel from inside.sometimes I feel reslly alone that moment is makes me hopelesss.I know there will be one day I will overcome this but I don't know if I will ne able to live like others..😭😂 but hope for the best..its really good to vent out youur will relieved from your anger.

lisa___s profile image
lisa___s in reply to ava97

Yes it’s hard having an invisible illness and being expected to carry on as normal. I’ve tried telling work but they look at me as if I’m exaggerating or making it up. I’m just having to rest as much as possible when I’m home without trying to affect family life, cause I don’t want them to suffer or miss out on things because of me.

ava97 profile image
ava97 in reply to lisa___s

yes..I also don't them to suffer for I remain silent.try to cope with this illness

You may also like...