Does anybody have advice on how to deal with restless legs brought on by AI’s? I was on letrozole for 3 months and 2 weeks ago changed to exemestane. I had insomnia almost immediately with letrozole and the restless legs have gradually got worse until now if I manage to drop off with the insomnia, the restless legs wake me up again. My GP has prescribed gabapentin which helped for 4 days then stopped working so she’s increased the dose to 500mgs a day. It’s making me feel really dopey and switched off but apparently it’s still only a low dose. I take magnesium supplements and had my iron levels checked which were ok - I’m at my wits end and feel like stopping the AI’s just to get some sleep and feel ‘normal’ again. Any suggestions gladly received!!
I really struggled with restless legs and sleepless nights but since taking Magnesium tablets I noticed a massive improvement. In fact, when I ran out of the tablets, the symptoms came back.
I used Nutrition Geeks and also Together Health (Holland & Barrett)
I always clear it with my oncologist team incase there is any affect on my medication - I’m on Exemestane.
Good luck!
Hi, how are you doing?
I bet you dread bedtime, I know I did when I struggled with restless legs syndrome. I tried a few things but the one thing that helped me was Amitriptyline, if you haven’t heard of it, it’s an antidepressant and relaxes your muscles, I was put on it to help with pain at night and it actually helped with restless legs, I was so relieved that I could sleep better and it helped me deal with the day ahead.
Maybe you could speak to your doctor about it. I was told Pregabalin might help too.
I wish you well.
Sue
I really feel For you. I also suffer with restless legs. I take magnesium and a muscle relaxer. This seems to help - I still get it but not as often as before.
I hope you find something that helps
I’m on Exemestane too - after coming off Letrozole. I find I get restless legs when I am tired or I havn’t drunk enough water. So I put my legs up on the sofa or go to bed or I drink a pint of water.
I’ve been on Amitriptyline for years for my rheumatoid arthritis but I stopped as I read it can make restless legs worse - interesting that it helps you but it did t do anything for me
I take magnesium and the GP has put me on Gabapentin but one of the effects is swollen hands and I don’t want to end up with lymphoedema in my arm after having an ANC so I’m trying to wean myself off it. I’ll have to go back to the GP but am interested to known what the muscle relaxant you take is called. x
I also notice that I am
Likely to get restless in the night if I haven’t had enough water during the day. Maybe try increasing water intake.
Medication is Pramipexol. It’s one of the medications for Parkinson’s. I haven’t experienced any side effects
Restless legs - lots of people don’t know it but if you have it, it’s really annoying
That is interesting 
. I also take it with Pregabalin but if I don’t take Amitriptyline for the night then restless legs comes back.
As already mentioned though, I have also been told to drink plenty of water, which may help.
It is a very annoying nuisance, can’t say it’s painful, just annoying and stops you sleeping.
I really hope you find the right treatment for you. What works for one doesn’t always work for another.
Same here, I have been on Amitriptyline for over 20 years now, I sometimes have a break but I always get restless legs when I have a break.
I guess we are all different and it might depend on other medications we are on.
I know exactly how you feel, I have been on letrozole for nearly 2 years and for the last several months have had RSL constantly, I have tried many things but to no avail. I recently read that if you rotate your ankles off and on through the day and just before you go to bed it helps. I know this mgiht sound odd but I have been doing this for the past few days and believe it or not it worked for me. I have had no problem getting to sleep recently and the restless leg seems to have stopped, not sure how long this will last but for now it’s great to be able to sleep at last. Anything is worth a try as it’s bad enough coping with all the other side effects without not being able to sleep. Hope you can get some sleep soon
I’ve just switched to extamestane after anastrozole and letrozole . Really bad restless legs and insomnia too. However I find joint pain is a little less on this drug .
I’ve also tried Anastrozole as well but joints were so stiff , I felt I’d aged twenty years .
The thought of long term use !!!
I’m struggling to work with cognitive / memory side effects on all three I’ve tried . Does anyone suffer from these issues which impact daily functioning, I’m even considering early retirement.
I found the joint pain less on exemestane than letrozole but the restless legs and insomnia worse. I was hardly getting any sleep so the GP put me on Gabapentin for the restless legs but I think it’s made the insomnia worse, arrgghh!! I’m weaning myself off Gabapentin and having a 2 week break before I start anastrazole so we’ll see but I’m sure the joint pain will come back. It’s really hard to stay motivated about taking these drugs when the side effects are so awful - feel like giving up and letting nature take its course!!
I’ll try rotating my ankles and 
it helps! Thank for the tip, x
I know what you mean about wrestling with the decision to stay on meds or let nature take it’s course 
I struggle with awful fatigue, upset stomach & anxiety/depression. How I’d love to stop meds & feel “normal” again but I’m too scared as I have stage 4 mets.
I take Letrozole, Ribociclib & Denosumab Injections
Love to everybody XX
Hi all, in case it helps there is a newish drug called daridorexant. It is a non addictive sleeping tablet for insomnia. Your GP can’t prescribe it but a specialist can. It might depend what other meds your on as to whether it would be suitable for you but it might be worth asking the oncologist or to be referred to a specialist for it if it helps. It worked a treat for me, thankfully. Hope it helps
Just been to my GP today and she prescribed the new non addictive sleeping pill daridorexant for me to try in the hope it will sort out the restless legs/insomnia. Gabapentin which they prescribed as a first line treatment for restless legs, made it even worse and I read that swollen hands is a common side effect with Gabapentin - any sort of oedema in my arm is something I really don’t want to risk after having an ANC!! It’ll be interesting to see if it helps with the restless legs and insomnia. x
Have you checked your calcium density?
Do you mean a dexa scan?
Hi jeh1 yes I am experiencing restless leg at the moment.Also in my arms. I was at the clinic yesterday and they told me its down to a tablet Im taking so there going to reduce the dose. I know what your dealing with saying you cant sleep at night. When your doctor changes your medication it should ease up. Wishing you all the best.