Hi my name is biggsy and have had RA for 24 years now... - NRAS

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Hi my name is biggsy and have had RA for 24 years now and feel it is getting worse and nobody really understands except for other suffers

biggsy profile image
12 Replies

Each day seems to bring different problems because it is 4am you can guess it is sleeping tonight went to bed at 11.30 then take my cocktail of drugs including painkillers and anti inflame decided not to take a sleeper which I now regret and will be very fatiqued all day how does anyone else solve the sleep problem Ron xxx

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biggsy
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12 Replies
Gorkypark profile image
Gorkypark

Not many people do understand RA! It bugs me big-time and I get so frustrated explaining to people that RA is a incurable Auto-immune disease, controlled only by powerful drugs. My wish would be for RA to be re-named! I get sick and tired of it being bundled up with Osteoarthritis and the usual uneducated comments "We all get Arthritis as we get older" This disease struck me down 15years ago when very fit and active. Overnight! Sleeping? Well get a decent nights sleep, usually out of exhaustion and for serious morning stiffness! Which can take a couple of hours to get fairly mobile. Can't win can we? Take Care Biggsy.

denvajade profile image
denvajade

Hi there, sleeping tablet for me. take care

hatshepsut profile image
hatshepsut

Hi biggsy

I do sympathise. I take anti inflam etc in the morning, at night I take amitriptyline to relax my joints and muscles, and zopiclone to sleep. Still eake up, but easier to go back to sleep. Hope today gets better!!!

johng profile image
johng

I've got RA & it seems to affect nearly every part of me!! Joints ,teeth, breathing. The day that I take MXT I feel quite sick. I think that I am improving slowly but as I am 80 I do not have too long.

julie_warwick profile image
julie_warwick

been awake on and off since 2am so sympathise ! agree with gorkypark , people just think I must just have a bit of a twinge in the joints and have no idea about the rest of it..

zannie profile image
zannie

Hi there, How well I know the feeling of sleepless nights. I take a pain killer, rub Ibruprofen gel on my numb left hand,

then take a book to read till I fall asleep. That gives me about four hours of peace. I do sympathise with you Ron. We can but try. Wish you all the best. XX

Really feel for you its same for me if you can't get a decent nights sleep the RA is even more diffiult to cope with along with the exhaustion . Every day I have a lay down in the afternoon for Hr or two sometimes sleep other Times not. People just don't understand what RA is really Like to live with . If you say its autoimmune disorder that attacks your joints muscles tendons etc people say poor you but RA is just oh I think I've got that .. well I wouldn't wish it on anybody I only poor my heart out too all you fellow sufferers now because you all understand its not just me being a moaning hypocondriac . Hope you get spme

some decent sleep tonight my Love gentle hug being sent your way

I find that doing some gentle exercise helps me sleep better. No matter how I'm feeling my little dog gives me the doe eyes until I walk him and even when feeling really crappy I must admit it lifts my spirits. I also find swimming a great help and my ultimate indulgence is a steam or Jacuzzi at the gym. After that lot I'm usually exhausted and sleep like a baby. On that note I ask myself why I've not bothered going to the gym for over a fortnight? Giving myself a much needed kick up the backside now. I hope you find what works for you as sleepless nights and tired days are a horrible vicious circle.

Take care Biggsy

Paula x

Susiej38 profile image
Susiej38

Hello Biggsy. I am RA sufferer for past 6 months. One of the worst problems I had the first month or two was that I could not sleep but 2-3 hours at night. I am now taking .5 Clonazepam, 10mg of Amitripilyine , and not always but usually 1 Tylenol with codeine 300-30 before bed at night. I most always sleep 7 hours. You might try asking your doctor about these medications. They have certainly helped me.

nevadawoods profile image
nevadawoods

Hello Biggsy. I can so sympathize with no one understanding. As Gorkypark said, people just think it's the usual aches and pains that come with age. If I am having a particularly hard time sleeping, I take a Benadryl and a 600 Ibuprofen. I alternate that with a xanax on some nights. It really does help me sleep, but I rarely sleep more than 4 hours straight but usually can fall back asleep. I find that doing water aerobics twice a week really helps my joints. My doctor said that is the best low impact exercise for people with our disease.

It is a hard disease to explain to people and I agree the name can be misleading for some of us. I met a friend today who has had it for about 30 years. She started with a severe type of Vasculitis and then RA and since has had it rediagnosed as Lupus, Crohn's and Mixed Connective Tissue Disease. Now her consultant says it is actually RA but with lots of add-on autoimmunities including PsA. She was explaining to me that she hardly thinks of the arthritis with her presentation as it has affected her eyes and organs more than her joints - it's the fatigue that is the worst thing for her - almost like narcolepsy. She says people just think she's loopy and many don't understand at all so she's given up trying to explain. She also has Osteoporosis after years on steroids. She says she sleeps every afternoon although she has her elderly father to care for so she just ties in with his patterns where possible.

I find Amitriptyline is very good at soothing the neuralgia-like pain and parasthesia I suffer at night - and I take the odd Zopiclone but I did have five months of severe insomnia recently - so sleep deprivation is the worst thing for me and I rarely sleep for more than four hours at a stretch without a Zopiclone. They are very addictive and prescription only so I'm rationed by my GP but I use them carefully if I have a particularly important or busy day ahead. x

MarshaM profile image
MarshaM

I have had RA for 7 months and have started using melatonin to sleep. I take one around 8 or 9 at night and start getting sleepy about 1030 or 11 and I sleep solid until about 7. I know melatonin doesn't work for everyone but I feel rested w no groggy feeling in the morn. And no side affects that I know of.

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