Long nights

[Eiram50]

Another long night where sleep evades me! Is this another (unspoken) side effect of the methotrexate- do think it's been worse since starting it?!

[allanah]

Hi yep still awake here too but flaring at the moment so just had a steroid jab which keeps me awake . I can't remember if I was the same on Mtx but they are long and annoying as you get so tired but just can't settle!

Ow well lets count sheep 🐑 🐑 🐑 🐑!

[Eiram50 in reply to allanah]

It's hard going isn't it? I get to seeing maybe 5 am and think I'm now too scared to sleep incase I sleep in for kids going to school - it's never happened but that's always my fear so it means most nights I get, in total, about an hour and a half!

Think I'd need to be hit by a sheep, not counting them !!

Marie

[Leonwp]

It is a difficult one to shift that is for sure, im trying cherry juice now, no luck yet but only second night.

[bradfordjoanna]

Hi Since starting this game my sleep has become dreadful. 2 hours at a time, then wide awake for ages then drift off for an hour or two. All v frustrating Not sure why or if it has become a habit??

To begin with painful hands would wake me then I wondered if afternoon naps cos of the tiredness were the reason. Now I am a lot better so maybe the 20mg Mtx??

Send the flock please 🐑🐑🐑

[Eiram50 in reply to bradfordjoanna]

I agree Bradfordjoanna

Since being diagnosed, my sleep too has been pitiful, at best.

I'm not sure what woke me but when awake, was aware I was in pain.

However, is felt this had settled a bit and whilst continuing to wake through the night , i was at least getting maybe two hours at a time.

The only thing that appears to have changed for me, is like you, I'm now taking the 20mg MTX. Maybe conincidental, I don't know.

All I know for certain is I increasingly feel like the walking dead - deep joy!

Marie

[popsmith1874]

Hi I think it's just another side effect off having this disease and I think you've just got to take a sleep when you can but it's so annoying climbing into bed and then you can't sleep so you have to get up again xxx

[Eiram50 in reply to popsmith1874]

You're so right popsmith

However, I find I can call asleep at the drop of a hat - it's staying asleep that is problematic for me! 😒😒

[popsmith1874]

Yes you've hit the nail on the button xxx

[cathie]

I struggle with sleep. I think that it helps to have a regular bed time and not to need to worry about being awake. Since I retired I've not worried about that so much. I find that listening to the radio on my ipod helps, just low voices murmuring n my ear s comfortng. Sorry cant wrte any more as somethng odd s happenng wth keyoard

[Eiram50 in reply to cathie]

Thanks Cathy.

I do have a good routine as go to bed at the same time as the girls on a school night (9pm) and regardless of when I sleep, I'm always up at 6am. I do worry about falling asleep at 5 and not hearing the alArm at 6- for school and work .

Rick n roll lifestyle!!

You just feel that the days meld into one sometimes? It can all just seem such a slog !

Now I'm just moaning.........

[cathie in reply to Eiram50]

days melding is so true at this time of year. Happily the days are getting longer - honest!! its a long time since I got up at 6, there are positive aspects of that. Recently my partner went for a long walk and left at 9am. I sat over my coffee and watched the sun coming up over the mountain (we were in the Highlands). I think sunrise is at 4 midsummer

[Phoo2]

I emphathise! Sleep was elusive for me on steroids too. Can your doctor prescribe something? Zopliclone was brill for me. I also went to chemist and stocked up on sominex and nytol both herbal and non herbal types. High dose valerian also helped me. Can the doc prescribe something for pain like amtricyclne?? I have been taking for a week and it appears to be helping..........

[Eiram50 in reply to Phoo2]

Hi phoo2

Fortunately, I'm currently not on steroids ( they've never worked for me!) but on biologics and methotrexate. I also take tramadol, paracetamol, arcoxia, folic acid and omeprazole. Like I say , getting to sleep is easy, it's the staying asleep that eludes.

I'm going to buy some ylang ylang today and use it in burner tonight and see if this helps- can't bear the thought of taking any more meds!

Thank you for your response and advise.

Marie

[Carol41]

Hi Eiram I feel dozy all day and nod off when I sit to watch TV but when I go to bed at night I cannot sleep. I cannot get comfortable and need to go to the toilet so have to wake up my husband to help me. It's a vicious circle. I usually give up trying to sleep and read eventually dozing off in the early hours then not waking until very late morning. Sorry I'm no help to you but do understand what you are going through. Wishing you well Carol xxx

[Eiram50 in reply to Carol41]

That's exactly what happens and what I fear-

The sleeping in! So what happens is I then simply don't sleep.

It's funny but before going on meds, well becoming poorly, I never wokenfor the toilet in the night but since diagnosis and meds I genuinely need to go 4/5 times a night!!!

Thank you Carol

Marie

[sheels6726]

There is no mention of insomnia on the side effects leaflet, or on Google but I hardly sleep at night then feel tired when its time to get up. I empathise with you and know what its like. I get fed up reading, watching television etc... no answer Im afraid, I am retired so do not worry if I do sleep in but feel sorry for people who work, have children etc....

[Eiram50 in reply to sheels6726]

Thank you Sheels

I know, I've read the leaflets in the hope of some explanation. I think , As others have suggested,it may just be part and parcel of the condition - probably exacerbated by the many meds?

Ouch well, as tired as I am, it's not the worst that can happen so Onwards and upwards, eh?!

Marie

[Rednoseday_01]

Yes I think I'm worse since starting drug and toss and turn most of the night then when the alarm goes off I'm shattered ! 😯😯😯😯

[Eiram50 in reply to Rednoseday_01]

It's a bit relentless isn't it? This constant drain on ones being!

I guess some things, we have to accept

With this disease but it's hard because I know exercise use is really important so today for instance, I was dancing (throwing) myself around to fleetwood mac thinking exercise is good , exercise equals tired body, tired body equals sleep . NO - all it equalled was pain!!!

Can't win

[Carol41 in reply to Eiram50]

Gentle exercise my dear, everything in moderation or suffer the inevitable consequences. Look after yourself Carol xxx

[Eiram50 in reply to Carol41]

Totally agree; lesson learned.

Marie

[Rednoseday_01]

Haha your so right the reumy says gentle exercise but the next day your stiff as a bored with pain I walk my dog for a hour and oh boy I have to get them frozen peas out on me sore lumpy feet !

[Eiram50]

Here we go again !! In bed now and hoping, just really hoping that after my complete work out (not!!) to fleetwood mac this afternoon the body will know it is tired and will allow me some sleep.

If not - expect me to be rabbiting on in the wee hours. Apologies up front.

[Jeanslmn]

I quite agree its 4:25 am I'm still awake I started methotrexate three weeks ago today I've slept fitfully for years but last three weeks more so awake much longer each time yet I know I'm tired ,il be falling asleep on/off all dureing day time today most unsettling