Hi I’m new here and am seeing the rheumatologist this week for the first time . I’m affected in my hands ,wrists ,elbows, shoulders and knees.
The eternal tiredness is affecting me greatly and I can not stay in bed for more than 5 hours or I seize up and am in immense pain for hours. Does anyone else have this problem? I’m so tired ☹️
Many thanks
my sleep is horrendous. Used to be an 8hr girl but that has gone. It was my GP who did a sleep test on me (paper quiz) and because of this sent to sleep clinic now on CPAP.
Has it improved my sleep? Not really but it has improved sleep apnea. Consultation I was told it might not help Me due to fibro and RA and COPD.
Jury out as still on trial.
Talk to your GP , try sleep apps (I did a few and for a while helped) get a routine going.
One thing I would do was get up Move around have a cuppa then back to bed. I would go to sleep again but it helped stiffness.
Good luck 🥰
We have all been where you are now…..Until you have seen your rheumatologist & been prescribed what s/he decides will help you…,sleep will probably be a bit sketchy.
So do listen to your rheumy team, take the meds & hope you are one of the lucky ones who react well early on.
As you will see from the posts here……there is a light at the end of the tunnel, but we are all different …some hit the jackpot straight away…let’s hope you are one of them.
Good luck…hope you can write in a month or two saying your sleep has improved.
I ont always sleep well
,but if I can’t I will get up and have a hot drink.the moving around helps the stiffness an.d pain in my legs.Sometimes I think the stiffness wakes me up.
The Fatigue is really hard to deal with.
You need to pace your self,the spoons theory.Its about conserving energy
Build breaks in your routine.
I still fnf it hard to stop doing a task. I’m doing when the fatique hits.
I hope your rheumatologist appointment goes well.
I have terrible sleep issues, mostly caused by my shoulders and hips. I usually have 5-6 hours of sleep a night, but I listen to audiobooks on my phone and they help me drop off back to sleep.
Hi speak to rumatologist about all this And your
Gp
If it's been long term
Good pain relief from gp
Will help you
And a
Good
Sleep med
May solve the sleep issues for you
As sleep important as lack or disturbed sleep has a big impact on you pain and tiredness and more
I'd speak to gp about this to consider
Meds
Referals to pain courses and wellbeing courses may help as well and tips and tools on these course to reduce the pain ,sleep and fatuige issues etc
oh yeah the fatigue is my worst symptom and never found an answer.. sorry .
Have you asked for a steroid injection for me they are the holy grail when multiple joints are involved and the stiffness takes hold
It was horrific before diagnosis and meds, most nights i'd be up in the night in tears and pacing the house 😞 Things I found that helped a bit were pillows under my knees, hot water bottles for some joints, ice packs for others and deep freeze gel too. Hope you get sorted and on some suitable meds soon 🥰
Yes in the early days this is typical, feel for you, but treatment will assist you. Have you had any pain relief offered yet? As others have said if I'm really bad I get up make a hot drink go back to bed drink it , sometimes taking paracetamol to ease the pain.
Treatment is a roller coaster as your body adjusts, even finding which works for you? Mean time write down all your concerns and go through them with your RA team , consultant diagnoses and prescribes, specialist nurse goes through your care plan. Tell them everything they will find solutions or know where to direct you.
Your GP will be brought into your care too.
All the best.
like you … when RA hit (5 ish years ago) it was in all those joints and my ankles and jaw. Trying to find a position I could comfortably maintain in order to sleep for any longer than half an hour was impossible .
The right combination of meds will make a huge difference and hopefully improve your quality of sleep as it did mine. Meanwhile try a soft pillow under your knees if you’re a back sleeper or if you’re a side sleeper maybe slightly higher pillows to take some pressure off your shoulders … or between your knees? Good luck on your journey 🤞🤞
You have my sympathy, struggling with sleep is awful, there is a reason why it is used as a form of torture! When I was at the stage you require my GP put me on a small dose of amitriptyline for pain relief, which has a welcome side effect of helping with sleep also. Perhaps you could see if your GP could recommend something for you? Also, I’m not sure if your day allows it, but I find a half hour nap after lunch helps a lot in terms of getting through the afternoon when I feel how you describe, without effecting my ability to fall asleep at night too much.
I know how you feel unfortunately. I can’t sit for more than half an hour without needing to get up and walk about which isn’t easy. As others have said once you’re stabilised on medication hopefully it will improve. The only thing I’ve found useful to take the pressure off my joints is a v shaped pillow as it can be used to help your shoulder pain and also is very helpful for your knees and hips. I hope your first appointment goes well, take some questions with you and don’t sugar coat how you’re feeling as in the long run it won’t be helpful. Have a look at NRAS they’re brilliant for all kinds of useful information about every drug treatment how to manage fatigue, sleep problems and anything else you can think of. Knowing about your RA will help you along the way.
Hello and welcome. It may be fatigue that's playing a role as well as the lack of your 7 hours of sleep. Once you have medication that controls the RA hopefully you'll also feel less tired. I have my fingers crossed for you.
Most RA people feel like this before starting treatment which will help it all but the tiredness is common to us l hope the Consutant starts you on some meds when you are seen good luck
I remember this so well. As well as using a V shaped pillow as Leics suggests, I used individual soft electric heat pads which have a timer and switch themselves off. They’re very light so don’t put pressure on the painful joints.
I actually used 3 of them at a time on shoulders, hands and knees both in bed and when I was resting on the sofa and they made a real difference to my pain, far more than paracetamol did.
I used one again recently while I was waiting for my recent hip replacement.
Hello and welcome. I'm so sorry you've had to join us here. However, there is a wealth of information born of experience which all here are happy to share to support you. Your GP should be able to prescribe medication to aid sleep and relieve pain but it's a good idea not to use those drugs just before your consultation with the rheumatologist. They could mask symptoms and you need to show how you are feeling. Wishing you well.
Appointments, or lack of them!
Is there a Link between lack of sleep ( working nights ) and symptoms made worse??
Sleep
Lack of knowledge.
