Surgery, radio, sleep, and restless legs

Kahm

This is a long shot, but just in case...

I had a mastectomy and reconstruction in mid-December, and I'm almost halfway through radiation treatment.

I've always had restless legs, and there's something about major surgeries that seems to make it flare up badly. I had an abdominal hernia/muscle separation repaired at the end of 2020, and the restless legs were terrible afterwards!

Anyway, I'm really struggling with sleep at the moment. I'm exhausted, but as soon as I start to feel ‘sleepy’ my legs start to twitch (mostly the left, because, hey, sure, why not?)

Last night I think I finally managed to drop off after midnight, but was up from 2-4 am intermittently pacing, doing yoga, stretching, massaging, swearing, and trying to sleep.

Then I was up again at 6 doing the same thing. I got maybe 5 hours of broken sleep. And it's been like this for WEEKS. It's like newborn days, only quieter.

I'm doing all the things that have worked before: strengthening the muscles that are twitching, stretching what's tight, nerve glides, settling the parasympathetic nervous system before bed, massage, magnesium supplements, reducing overwhelm during the day. This is a crazy complex syndrome, and has many contributing factors. It's intensely frustrating.

But I guess that's really only part of the picture, because I'm also still sore from the mastectomy. And the radiation is starting to get uncomfortable. And I want it OVER, but I'm also dreading the end because then I just get to wait and hope that treatment worked. All of that is playing merry hell with my sleep too, or at least with my stress levels.

Anyway, my questions for you lovely folks are:
1) Are extremely restless legs something that others have noticed, or am I a shiny snowflake?
2) Any tips beyond that for sleep?
3) Any tips for managing discomfort during radiation? I've got mepitel and moogoo, I'm hiding from the sun like a troll/vampire hybrid, and I'm drinking ALLLLL the water. I still suspect I'm about to develop the worst case of sunburn I've ever had. Owie.
4) Can you ever lie on your front again after implant reconstruction? I'm generally a tummy sleeper, and I'm missing being able to snuggle up in bed like I normally would.

Ta muchly ❤️

Blossom1961

Hi @Kahm I wish I had an easy answer but I don't. What works for one person does nothing for another. Vitamin B for some reason helps some people. Osteopaths are great. Manual lymph drainage massage is worth a try. Mersyndol night strength if your dr will prescribe it (this worked for me but the Dr says it doesn't). Restavit is available over the counter if you want to try just the calmative part of mersyndol AND it helps you sleep. I can't answer qn 3 & 4 sorry. Hopefully you get it under control. I had SEVERE leg cramps during chemo and the dr was perplexed. I went against all the rules and had ibuprofen. Sometimes you just gotta. I wonder if cannibis would help you? 

arpie

Hi @Kahm - sorry to read that you are having a tough time of it just now ......

re your mastectomy pain - can you talk to your Breast Care Nurse? Do you still have some pain meds that you can take?  You are still 'in recovery' from the surgery & everyone heals at a different rate .... is it sore with a particular arm movement?  Only at night? Maybe try & work out a pattern?  Then take the meds BEFORE the pain sets in .....

I had some severe 'stabbing' pains in my breast during my Rads .... like electric shocks - they would wake me up!  Nothing much I could do about them tho, as they were intermittent.  

1) Are extremely restless legs something that others have noticed, or am I a shiny snowflake?
Definitely not alone ..... it is so weird. My legs are still fairly restless now & then & hubby's almost all the time!!  Sometimes I think it may be because I am too hot & I kick the bedding off .... Someone else mentioned it the other day & Magnesium tablets were mentioned ..... definitely worth giving them a go. 


2) Any tips beyond that for sleep?
Sleep is one of the first things 'to go' after diagnosis - initially (I think) due to an overactive brain going over the information overload ..... then post surgery & treatment & AI side effects ...... I usually read for a bit before I turn off the light, just to slow my brain down (nothing too heavy .... magazines are good.)  I also got a script for Temase (designed to allow you to sleep for about 4 hrs) from the GP & use them sparingly .... if still wide awake at 1am, I will take one. The ones in the bottle actually dissolve on your tongue & I take water with them as well - the ones in the packet don't dissolve (I have found.)  If I've had a rough few nights, sometimes I take a half a one when I am going to bed, & it is just enough to help me 'fall asleep' and often will then sleep thru, or at least get 'some' quality sleep.  Good luck.


3) Any tips for managing discomfort during radiation? I've got mepitel and moogoo, I'm hiding from the sun like a troll/vampire hybrid, and I'm drinking ALLLLL the water. I still suspect I'm about to develop the worst case of sunburn I've ever had. Owie.
Definitely raise any issues with your Rads Nurse BEFORE it becomes a problem ..... they may have some more creams/ointments that may suit you better than the Moogoo (good tho it is!)  Make sure you put the lotions on every couple of hours AFTER your rads (not before) .... and that 'warmth' that you feel - will continue for up to a month afterwards (sometimes more) so very important to continue with the lotions/creams afterwards, too.


4) Can you ever lie on your front again after implant reconstruction? I'm generally a tummy sleeper, and I'm missing being able to snuggle up in bed like I normally would.
Sorry - can't help you there - hopefully someone else will have some good tips xx

take care & I hope you get some sleep relief soon xx. All the best for your remaining rads

Julez1958

Hi there
regarding sleep , these work for me
1. I don’t have any electronic devices in my bedroom - my iPhone is on the kitchen bench charging over night .
My 26 year old niece can’t believe this!
2.I limit alcohol to a couple of glasses two times a week.
3.I generally do at least 30 minutes of brisk walking ( including stairs and hills) every day and at least 2 days a week  much more .
4.I eat dinner at least 3 preferably 4 hours before bed .
5.And  this is the hardest if you have been diagnosed with breast cancer 
- try and clear your mind of thoughts before laying down on the pillow.
I did a meditation course years ago and stopped doing it when I gave up full time work but I took it up again when I was diagnosed as I found my mind was “ racing” when my head hit the pillow ( well 24/7 really!) and I found it helped . 

6. No coffee after 12 noon.



Take care
🌺

Kahm

Thanks all,
It's so good to know it's not just me!
Last night I felt the restless legs kicking off and I went “stuff it” and took one of the temazepams my GP prescribed back in August when I was waiting for my biopsy results.

I slept straight through, and for the first time in weeks, I woke up without stiff/sore joints.

Which tells me that the restless legs might be partly biomechanical/neurological, but that it’s mostly emotional.
If it were purely biomechanical, I'd have woken up sore, even if I got some sleep.

So I will put more energy into taking care of myself (and my stress levels!) throughout the day. Also sleep hygiene. Sigh - I’m really bad about my phone.

I do know how to meditate (actually doing it is another matter - oops), I'm already a non-drinker (I quit when I realised I have ADHD; they're a bad combo), and I do love my exercise.

On that note, I have the house to myself for a moment, so I'm going to go take my magnesium and then meditate for 20 minutes.

Ta muchly 😊

StrongCoffee

You haven't mentioned if you've started any hormone blockers (depending on your cancer type, you may not).

I'd read to take my tamoxifen at night so started taking it then at first, but it caused dreadful insomnia. So I switched to first thing in the morning and take a B12 to counter the fact that it makes me feel quite agitated from 9-11am.

Kahm

Oh, no. Not yet. 
I mean, I'm having the monthly injection that puts my ovaries to sleep (I'm 40, so periods were still a thing).
But apparently the other hormone blockers don't react so well to radiation treatment, so they come afterwards.