Pain and sleep

[Coffeetime]

Here I am again, thanks to a recent flare sleep is something that is hard to control (again). Back on the pain killers 8 a day (8 too many for my liking) but definitely zoned out so,maybe that could explain why I’m weeding the garden at this time either that or Netflix needs to update its films. Any good ideas to put me asleep would be greatly appreciative.

[puffyface]

Poor you...it's so boring! What type of pain keeps you awake? Mine is my legs. It's like aching/throbbing growing pains and my hips hurt at night. Not the normal place to have hips hurt...on the outside of my legs towards the front. It's agony and comes in phases...I think it's muscular or nerves...anyone else get this? I've got a lupus/Sjorgrens overlap.

What pain killers do you take. I'm sure I'm taking too many. X

[Hidden in reply to puffyface]

I have this pain too that you describe in legs but also in arms. I’m turning into an evil cauldron mix of Hubble bubble with all pain and other meds in my overnight mix. But I only sprinkle one at a time and then wait for the cauldron stir to work.

I do also have fractured ribs just now as well as a painful lower back. So I lie and compose nonsense poems between patches of fitful sleep. Seems to work just now but then one of the cauldron mix components is Diazepam!

I have Sjögren’s with some small vessel Vasculitis and Hashimoto’s to blame.

[Supul in reply to Hidden]

Hi TT

Here I am again. And, as I told you recently, I think my symptoms are increasing despite my brain trying to insist I do not have sjogrens ?lupus.

Too many members here discuss symptoms I suffer so I must accept that not all my symptoms are related to hashimotos. This, you tried to tell me some time ago.

I do catch up, eventually.

You once said, labels are not so important and I agree. I've tried very hard to put all my symptoms in the hypothyroidism box.

My fear of further drug allergies and intolerances make me steer away from sjogrens ?lupus, because I know many patients require prescription drugs. I tried hydroxychloriquine but wbc and neutrophils went down, antibiotics whole duration I was on them. I felt very unwell so stopped them.

I have self talk. Saying I must put up n shut up. Or take meds offered. I guess time and further suffering will dictate if/when I agree to meds from rheumatologist.

Meanwhile, thank you for sharing your own experience and knowledge. It really helps.

I'm sorry about your on going struggle with painful ribs and wish you well asap.

I did find the best med for me, was 2mg diazepam at night. Yes, a measly 2mg, that's how sensitive I am to meds, (it helped my muscles relax when I had higher dose for prolapse discs, so I requested regular 2mg nightly), however, due to some people becoming addicted to diazepam I'm not alloweded it!

This is the farce of the NHS. What a stupid decision. My endocrinologist and my rheumatologist have written to my GP, its written in my notes, that I do not like taking prescription meds due to previous allergic and intolerant responses. That I would rather use natural remedies. Thus, if I request a prescription med it is with good reason. I tried telling GP myself.

It's no good me telling GP I can tolerate 2mg diazepam for relaxing muscles, definitely helping back (I'm prone to prolapse discs), after all, Dr knows best!!!

Get well soon TT. and keep writing those poems..

[Supul in reply to puffyface]

Hi puffyface

Thank you for sharing this. I'm sorry about your pain.

I can definitely relate to it. It's gruelling isn't it?

I describe it as like labour pains because it builds to such intensity. Being in my leg is so confusing though.

One minute I'm fast asleep, then I wake with deep throbbing that as you say, feels like deep bone pain or deep muscle pain. Hips hurt when I try to adjust my sleep position and lower back hurts too. My arm Hurst too, same pain.

I've thought, is this sciatica, which I had first time 4 years ago, when my real personal experience, and understanding of ill health and pain, showed itself to me. However, the pain is different, I think. I'm so debilitated when it occurs, it takes my breath away ...

Please read my full reply to coffeetime for further info.

What meds do you take? How long have you suffered this? What do your care providers say about it?

I know this may sound mercenary, (and definitely not meant that way), but reading your post has helped me this morning, because I know I'm not the only one suffering this. What you describe is how my symptoms are right now.

It would really help me, if my care-givers would explain to me what symptoms to expect, what diagnosis causes what, and what to do about symptoms. I find, though, that they discuss blood results, current medication, write down current symptoms, and stilI leave me floundering on my own..

Thank you for sharing.

[puffyface in reply to Supul]

As you say, it's good to know that we aren't going mad on top of it all as well!! Also have hashi's, sjorgrens/lupus overlap....and an endo, a rheumy and a RUBBISH GP. I take t3 and hydroxychloroquinine...but am now on a clinical trial for sjorgrens with belimibab and rituximad. Only just started...so if I'm not the placebo...maybe something will help. At the moment I'm using co-codamol and naproxen and sleeping with zopilcone!! A great mix...can't imagine how my liver is coping as I do drink wine...and it numbs the pain.

I spoke to my rheumy about my hip pain last week. She said it's good because it's on the outside/frontish part of my hip and therefore not the joint. She said that she thought it was probably bursitis from walking dogs etc. From what I've read, I honestly think its a sjorgrens muscle thing, and because leg, foot and hip thing together, I can believe that my few dog wanders has caused it. I'm seeing her in a couple of weeks, will ask again specifically and let you both know.

x

[Supul in reply to puffyface]

Oh that will be interesting to see if on trial meds, its worked! Please do keep us posted.

If I could drink alcohol, I would! I'm sure it would be easier on the body than some prescription meds. It's definitely recommended for heart health isn't it?

I would love a dog too. Every time I get close to buying a puppy, I think, who is going to walk it, on my really awful flare up days?

Still, its good to have goals.

And great to hear how others manage with the issues brought about by AI.

Take care.

[Coffeetime in reply to puffyface]

My pain decides to reside in my legs and loves the bendy part especially. My dear doctor has had me taking tramadol and is now thinking a morphine patch maybe the answer. So if my next post is jumbled I’ve been upgraded to the patch. Hope you have better luck. X

[puffyface in reply to Coffeetime]

Keep us informed about the morphine patch. I might quite like a whole body patch some days to wrap up in! x

[Supul]

Hi coffee time

I know how you feel regarding pain especially during the night. It's so debilitating isn't it?

Reading your name title, I did wonder if coffee may be a contributing factor for your lack of sleep too? May be just coincidental and that you aren't 'wired' on coffee also.

Some years ago, I worked for MAS, (Medical Advisory Service), if you contact them, they can send you information on improving sleep patterns.

There are many books on sleep hygiene that are available. However, having said that, I personally believe insomnia, and lack of sleep due to hideous pain, are different. Using sleep hygiene techniques does not stop me waking with awful pain; so bad, I have to take pain relief (cocodamol 8/500 - allergic and intolerant to others, diazepam helped with prolapse discs but GP won't prescribe regular), and it takes a good while to settle back to sleep. I walk a bit and read a short story as stressing over not sleeping doesn't help.

I agree with you regarding too many pain relief meds. I really struggle with not wanting to take meds and battle with being in pain or taking them. When I take them, it is definitely because I can't cope with pain at the time. This is what's happening now.

I try to walk everyday. I try to keep moving. Keeping on top of chores. Eat a good diet.... practice mindfulness, despite my best efforts, I am suffering awful pain in my leg, arm, lower and upper spine, including neck.

I am diagnosed hashimotos, sjogrens syndrome, ?lupus, ctd, lesions on liver (I am intolerant to alcohol, so not alcohol related), degenerative spinal issues..

Currently, I am under the care of an endocrinologist, a rheumatologist, and one next to useless GP, who either has no understanding of AI, and definitely doesn't want to spend money on referrals.

I gain support, and better understanding of the conditions, here on HU.

I did visit a chiropractor, who made my musculoskeletal issues worse, by hammering my spine! I know. Though, I've been researching, and feel ready to book with another chiropractor and/or get some massage appointments.

Thinking of you today, and hope you soon get some sleep.

[Coffeetime in reply to Supul]

Thanks Supul, as my nickname suggests I love coffee but it is now only a treat for me and only before 5pm. I have now definitely decided that sleep will come and visit me on its own volition and tells me to like it or lump it. Hope you have more luck with your pain.

[Supul in reply to Coffeetime]

I know what you mean.

I have just 2 caffeine drinks in 24 hrs.

I also try not to sweat over lack of sleep.

However, pain is another issue, isn't it?

At least your garden looks nice? Lol

Have a good day. And pleasant dreams when you do drop off!

[Coffeetime]

I LOVE your attitude to this lovely personal devil and would be very willing to help you mix our painkillers in a cauldron. Some of your poems must be gibberish when mixing diazepam. I hope that your ribs heal soon. X

[Lupiknits]

Do you take amitryptiline? I know some, have, with success, because it seems to help and definitely makes you sleepy.

I'm on two BuTrans patches, a 20 and a 5. This was done ( working up very gradually because it doesn't suit all) because pain was breaking through at night, especially in my hips and lower back. The patches last 24/7 for a week before they need changing.

I also sleep on two memory foam toppers and two duvets which helps.

I do hope you get some help. X

[Supul in reply to Lupiknits]

Lupiknits

Another post with great advice. I'm thinking of getting a topper. And did a sort of trial laying on top of pillows and quilt one night!

I tried amitriptyline and suffered hallucinations! Never again. Though, I did sleep a bit, obviously worked on that part of brain. Lol.

I just feel relieved this morning, and afternoon, reading that I'm not alone in this awful night pain nightmare!

Thank you everyone, for sharing.

[Lupiknits in reply to Supul]

Not alone at all! We share so many similar problems and try to help each other here.

There was a point when I thought I'd need a ladder to get into bed and scraping my nose on the ceiling would be a possibility.

[Supul]

That made me laugh. What a sight!

I've had a few nights where I became reluctant to go to bed, because I didn't want to wake up in pain a couple of hours later!

I mastered that recognising that's how poor sleep habits begin! Now, I will go to bed, wake in pain (hopefully not!), and know I'm not alone in this..

[Coffeetime]

To supul and lupiknits

It’s good to know I’m not the only one who will try to see a funny side about the dreaded dilemma called lupus X