Have been diagnosed with RA for eleven years, all goo... - NRAS

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Have been diagnosed with RA for eleven years, all good on MTX but have had sleep problems since being diagnosed.

bevlin profile image
13 Replies

my doctor prescribed Amptripilene which worked for a while but my body seems to have got used to it so now dosent help at all. Is insomnia a siade effect of RA or RA drugs? oes anybody else suffer with it? If so, can you recommend anything that will help but won't make me drowsy the next day as I still work full time. thank you!

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bevlin
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13 Replies

Hi Bevlin,

I was diagnosed with RA nearly two years ago, but I have had insomnia for nearly 12 years. It took me a long time to get help from my GP for for this problem. I have been on Zopiclone for a number of years which seems to be the only one that works.

I have tried a couple of anti deppressents, but they made things worse, causing restless legs. I am on Amitriptyline, which is supposed to help with pain and insomnia. But if I don't get sleep I get headaches.

I have also tried herbal tablets in the past, and they are pointless for me, might work for other people.

If I was you, I would see your GP. But you would need to keep seeing him/her to let them know how much it is affecting you. Hope this helps. Shaznay x

bevlin profile image
bevlin

thanks Shaznay, I've made an appointment for next Thurs, I have been to surgery about it before but got fobbed off. I'm not exaggerating when I say I only get two to three hours sleep a night. herbal remedies don't work for me either, my mum who also has RA is on zooid one and it works for her, can't understand why they haven't given it to me.Do you take it continually or only when you really need it?

in reply to bevlin

It took me a long time to be allowed to have zopiclone. It is known to be addictive, but that all depends on the person who is taking it.

I take it when I need it, but my GP is trying to wean me off them, so I only take half at the moment.

I know exatcly how you feel about not sleeping, I am also on MTX and Hydroxychloriquine. My RA has calmed down, so I know it's not the drugs that have an affect with my sleeping.

bevlin profile image
bevlin

Sorry iPad has a mind of it's own......my mum is on Zopiclone!

cathie profile image
cathie

Hello, I've had RA since 1999 and have had problems with sleeping. I've tried to avoid pills. I find that changes to routine before sleeping helps. I try not to sleep before I'm ready. Sometimes that may involve reading for quite a while. Bedroom is not bright, I try not to do anythiing too stimulating before sleeping. If I cant sleep I lie with a radio on very softly - spoken word helps most - through an ear plug. Its on a sleep timer - the best setting is 30 mins. I try hard not to sleep during the day as I think that makes it more difficult the next day.

I've only had pills once, after my mother died, and I was very wary of them.

I hope you can find a solution. I think that worrying that you cant sleep is the worst isnt it.

Josie2 profile image
Josie2

Youve hit the nail on the head there for me Cathie.

With my shoulders flaring badly ive convinced myself i wont sleep before i even get to bed.

I got amitriptyline from doctors but have yet to use them. Im hoping once i either get over these shoulders flare (thats hindering my sleep) or when i get back to work next week i'll be that shattered i'll fall into bed.

Apart from my hydroxy i only take cod liver oil, black cohosh, vitimin d and starflower capsules so i really dont want to add anything else. I already feel like a junkie lol.

Jo

Xxxx

bevlin profile image
bevlin

I've bought a black out blind, changed pillows and bedding, changed mattress, my husband now sleeps in the spare room as I was keeping him awake with my restlessness, I read before trying to sleep and try to keep in a set routine....sometimes I go off to sleep straight away only to wake up two hours later and stay awake for the rest of the night(!) or worse case scenario I just can't get to sleep and toss and turn all night long! I childmind from 7.30 to 6 every day so you would think I would have no trouble sleeping as I'm always shattered, it's catch 22 as well, I get pain when I'm tired.....oh well, here's hoping the doctor has some suggestions on Thursday!

Like you I have tried everything. I wish I had a spare room, to escape to instead of the sofa.

My partner snores, but I had this problem long before I met him. And again like you I have worked and thought that would solve it, but no!

I have also had an op on my neck a month ago, which means more pain, less sleep.

Like I said before, tell your GP everything that you have tried, and if need be, a few tears. Lack of sleep affects everyone.

Good luck for next thursday. :-)

robert45 profile image
robert45

Thanks for putting this question and answer up i thought it was just me i am so tried i work from 6.45 in the morning till 5.30 pm in a physical job ive tried new bed pillows blackout blinds all i want is a decent nights sleep im on mtx and etanercept etc it must be a side effect of RA

bevlin profile image
bevlin

Thanks guys, I am sure it must be something to do with the MEDS we are on, I know people need less sleep as they get older but two hours a night is ridiculous! even on a good night when I've had four to five hours sleep it isn't quality sleep....it's tossing and turning, waking continuously during that time....I have eye bags that would give Michael Aspel a run for his money! I set my alarm for 6am and have never heard it go off as am always awake from 5.......Zzzzzzzzzzzzz

to make matters worse my husband is asleep as soon as his head hits the pillow!

Josie2 profile image
Josie2

Oh yes my hubby snores loudly as well!

Have you tried a v shaped pillow? It has helped me a bit with my sleep.

SarahKate-NRAS profile image
SarahKate-NRAS

Hi Bevlin

I imagine you have probably tried many of these but we have a 'guide to a good night's sleep' hints and tips sheet which may be of interest: nras.org.uk/includes/docume...

I hope the GP is able to make some suggestions on Thursday.

Kind regards

Sarah Kate

NRAS

Desdmona profile image
Desdmona

I take 80mg of Cymbalta and 20mg Flexaryl. Cymbalta helps with Fibro symptoms and addresses long term depression. It's lovely side effect? It makes you sleepy. Add in a low level of benzo and am out like a light. I don't have morning fog. I don't roll around as much in pain and I have no weird leg kicking.

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