Another long night : Since beginning methotrexate... - NRAS

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Another long night

Eiram50 profile image
28 Replies

Since beginning methotrexate ( 20mg) I find it increasingly difficult to get to sleep . I know I'm tired but when in bed find I'm tossing and turning and have "jumpy" legs. Has anyone else found this? Find myself becoming very frustrated. It's Xmas eve tomorrow and I've a thousand things to do and annoyed that I've come to bed early to ensure some energy for tomorrow - and still tossing and turning!!

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Eiram50 profile image
Eiram50
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28 Replies
Moomin8 profile image
Moomin8

Hi- I can understand that feeling - happened to me. I think it settled with time; I know that's no consolation. I did get my b12 checked, which was low. I took b12 replacement tablets and still do. I think with me it was a combination of early days with RA, mtx and being generally low. I paced the floor many a night...a bath before bed helped sometimes. Other than that, distraction such as listening to Radio 4- bores me to sleep lol 😆

Eiram50 profile image
Eiram50 in reply to Moomin8

Thanks moomin8

Usually I have no trouble getting to sleep, it's the staying asleep that's been difficult but Increasingly, this has changed and I toss and turn for hours! A bit bath sounds lovely but since having both hips replaced and both knees replaced sighing last 18 months, I can't get in or out a bath anymore - this disease can really rob you of the simple pleasures, can't it?!

Moomin8 profile image
Moomin8 in reply to Eiram50

Too true- x

Smurf808 profile image
Smurf808

I had this problem with sleeping too when I first started taking methotrexate a year ago but it settled down on its own. sometimes I still have the jumpy legs or as though they're restless. Hope if sorts itself out for you :)

Eiram50 profile image
Eiram50 in reply to Smurf808

Thanks smurf808

Entero profile image
Entero

I can sympathise Eiram50. In fact thanks for posting it as I hadn't made the connection with Methotrexate. I've always been a good sleeper and it's been a great pleasure in life (!) but since starting Methotrexate find I'm inexplicably 'awake' even though I'm really tired. I've put it down to pain and have been dosing up on cocodamol (and its definitely pain which has me out of bed at dawn) but your post makes more sense. Good luck 😉

Eiram50 profile image
Eiram50 in reply to Entero

Thanks Entero

I've managed three hours tonight and with 3 kids still at home and super excited for the big day tomorrow - well, it's going to take a lot of coffee to get through the day. My logic tells me that I'll be so tired by tonight, I'll sleep easily- experience tells me another long night ahead. I can see why this condition can lead to significant levels of anxiety and depression for some? Oh well, onwards and upwards. I know I'm in the good company of many resilient people here- even in the wee hours. Wishing you all a fantastic Christmas and a transforming new year!

Entero profile image
Entero

As its Christmas you could of course treat yourself to some Nytol. But then with littleies coming in at 5am.....

Merry Christmas to you too Eiram50.

Jollygoodglyn profile image
Jollygoodglyn

I wish I'd read this at 3:06 this morning when I first woke up. We could have discussed this in real time. Do many people on methotrexate drink alcohol as I've noticed a correlation between the two (liver regularly monitored).

Eiram50 profile image
Eiram50 in reply to Jollygoodglyn

When staring in methotrexate I was told by my consultant that it was best to avoid alcohol but if I needed/ wanted too then to have no more than 3 glasses within the period of a month?! As a rule, I have followed that advice ( too much for the liver to filter both) but as tomorrow is Xmas and I have people over for dinner, I'm moving methotrexate day to later

On in the week and allowing myself a couple ( I do mean couple) of glasses of wine with dinner.

stbernhard profile image
stbernhard

I hope you find a way to get a good night's sleep soon. Have you ever thought about meditation (I know that sounds airy fairy to some) or mindfulness. For me it was the only way to get back to sleep after the nightly pee break. Before I could be awake for hours thinking about nothing useful and getting frustrated. All the very best.

Eiram50 profile image
Eiram50 in reply to stbernhard

Thank you for that and yes, I am very familiar

With the practice of mindfulness ( use in my practice as a social worker) but the difficulty is whilst I can quiet my mind and be in the immediacy , I have no control over damn jumpy legs. They jump so much it actually hurts! At some point, sheer exhaustion will take over and I'll manage a few solid hours - bliss !

in reply to stbernhard

That and breathing can sometimes work too. Just not always able to force my mind to calm down - ha ha

stbernhard profile image
stbernhard in reply to

Just think of the person you love most giving you a lovely hug if you can't clear your mind. Works for me everytime.

in reply to stbernhard

Thanks stbernhard - I'll have to try that

bradfordjoanna profile image
bradfordjoanna

I have struggled to sleep properly since the RA game began but perhaps it is the Methotrexate ? I used to sleep well but now I often feel as though I have just skimmed the surface of sleep and I remain tired. I usually wake after a couple of hours and struggle to get back. And then if I do sleep I wake again after another two hours or so. I have tried meditation / avoiding naps in the day but still struggle with tiredness

But it is true that my hands and wrists hurt much less than they did so I guess the methotrexate has done that too

Not that this posthelps anyone else but it is good to say it - so it helps me!!

Have a good Christmas everyone.

Ladyinredxx profile image
Ladyinredxx

Welcome to the club been taking Methotrexate for several years still can't

sleep, only when I stop taking methotrexate, which I do when taking antibiotics. Hope U find an answer to your problem . My only solution for me is don't go to bed to early. Best wishes for a happy Christmas. M

Eiram50 profile image
Eiram50 in reply to Ladyinredxx

It's blinking difficult isn't it as I'm always so tired by about 9 and aware that I need to be up for six for work and getting kids to school so panick if not in bed at reasonable time - however, it does seem to be a wasted exercise! You too have a great Christmas

Yeah - The Restless Leg stuff is so annoying. I use either Voltaren Gel, or even just some lotion to try to help it. One thing to consider is that your cell phones, tablets, wireless handsets, etc. should all be out of the bedroom, and the wifi in your house should be off too. That will help some.

Not to add one more drug to your mix, but you might want to talk to your GP about getting some Lunesta or something - just don't get Ambien. I keep reading too many stories about people sleepwalking, sleep eating, sleep driving, etc. while they take that stuff.. In the mean time you can try something like Unisom if you are not reactive to it.... Or Tylenol PM...

Philip profile image
Philip

The best thing I find, that if I get restless legs I go strait to bed and stretch my legs as much I can and fall asleep pretty quick when I awake I usually feel better. Best of luck and have a Merry Christmas.

janmary profile image
janmary

I don't know if its the MX or not, but I don't sleep well now - just glad I'm no longer at work or on a school run. I find not doing anything involving WIFI, phones, computers etc near bedtime and banishing them from the bedroom helps a bit -getting up and wandering around the house helps as well - not lying in bed just getting frustrated. Radio4 is a blessing too.

Good luck

Eiram50 profile image
Eiram50

Thanks so much everyone- such a lovely helpful bunch. I will be trying each and everyone of your suggestions!

Maeve31 profile image
Maeve31

Hi, like you I had difficulty with the jumpy restless leg thing. My Rheumy suggested I try quinine to see if it helped & it did. He said he's found over the years that it often does the trick. So I take a small can of Schweppes tonic water once a week.

I'm still not a great sleeper compliments of RA / methotrexate, but at least I don't have the restless leg problem anymore.

Hope that helps & you get some half decent sleep

Eiram50 profile image
Eiram50 in reply to Maeve31

Thanks Maeve3another for me to try!

Chris_10 profile image
Chris_10

R

Eiram50 profile image
Eiram50 in reply to Chris_10

R?

Claudiaboscamp profile image
Claudiaboscamp

Yes my doctor added another drug, ropinirole generic name, for restless leg syndrome, makes you sleepy and relaxes your legs

Eiram50 profile image
Eiram50

That sounds just what I need!

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