Fatigue: These past few months since around April have... - NRAS

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Fatigue

TheBoys profile image
24 Replies

These past few months since around April have seen me have a serious of niggly painful flares- mainly on my right side. But the worst aspect is the fatigue.

I literally end up spending as much time laying down in bed as possible and can’t wait to get to bedtime. I get up at 7 every day but by 10, am trying to rest. Every afternoon I m now napping from 2/3 pm with a sleep. If I don’t get to bed, I feel like lead. I also have stopped reading or watching much TV as don’t have the energy or attention span. I literally have lost interest.

Anyone else have this level of fatigue.

Cheers

Paul

24 Replies
Lolabridge profile image
Lolabridge

Snap! I’m struggling with fatigue too and need a two hour sleep most afternoons in addition to my 8 hours a night. I’m spending a fair bit of time lying on the sofa too. Like you I’ve got niggly aches and pains. I’ve contacted my patient helpline and they are waiting for results of blood tests they organised. I have recently come of Prednisolone but I’m wondering whether the single pulse of Rixathon was not enough for me and I need the usual two.

Have you any ideas why you’re suffering?

TheBoys profile image
TheBoys in reply to Lolabridge

Hard to say it just crept up on me now it’s overwhelming. I literally no longer read, my arms get sore holding my iPad. It’s made me feel low and of course I m eating more - mainly sweets. I felt good last year now it’s like a reversal.

Lolabridge profile image
Lolabridge in reply to TheBoys

I hope your Rheumy team are investigating for you and come up with a solution soon. Let me know what they decide x

OH YES YES YES !! Life just passes by I don’t have the energy to be bored let alone hold a conversation . Unfortunately a sign your disease is active and meds not working . Add in your flares it’s best to contact your clinic.

Deeb1764 profile image
Deeb1764

Hi Paul yes my fatigue is now the worst part just wont go away and just hard to push thro. I am tryng not to sleep during the day lately so if I feel I might sleep I go and do an activity to keep me moving so I sleep better at night. Its still hit and miss but onlly on week 3 of this trial. I also have TV on for noise and reading a nightmare

TheBoys profile image
TheBoys

I ve got a tel appointment with my GP on Saturday so will have a chance to talk to him about meds . I ve had to get someone to cut my grass now as well as I can’t do it which is a pain as I loved planting and growing stuff .

medway-lady profile image
medway-lady

I'd suggest you discuss your meds with your RA team as its not normal and they may need tweaking or even changing. Fatigue is obviously part of RA but you're describing a sort of overwhelming fatigue which may not just be the RA. Have you had a thyroid function test or your B12 levels checked as well as kidney function? I think its definitely worth talking to your GP as well to get some blood tests done before assuming is it down to RA. A flare may be masking something else going on and it's best to be sure as it could be treatable and nothing to worry about.

TheBoys profile image
TheBoys

Many thanks that’s interesting- yep I now have an appointment with the GP to see what’s what.

Pippy25 profile image
Pippy25

Yes I am the same too, sometimes I can sleep anywhere between an hour to four in the afternoon. Some mornings I get up and I'm so groggy after an hour or so I'm having to lie down. It is frustrating me as this is not me and days are passing me by. Wonder what is going on?

sunnyweek profile image
sunnyweek in reply to Pippy25

Well, not really 'like' but can empathise, days just pass us by don't they. I hope you feel better soon and I hope your legs are much better xx

Pippy25 profile image
Pippy25 in reply to sunnyweek

Sorry just realised I've answered the other post you sent...see fatigue is setting in! Night night xx

sunnyweek profile image
sunnyweek in reply to Pippy25

Hope you slept well Pippy xx

sunnyweek profile image
sunnyweek

Definitely had high levels of fatigue enough to not be able to think straight, too much effort to make a phone call eg to pay a bill. Happened when I wasn't properly controlled which took about two years. Still get fatigue, it is part of RA. However, you should be checked to see if you are controlled enough. My recent blood test shows lower neutrophils which has given me a feeling of tiredness not the degree of a flare though. I hope your GP appointment helps you. In the meantime we have to go with it, but you will improve and get back to your planting and gardening, and will feel better. Good luck with your appointment.

Pippy25 profile image
Pippy25 in reply to sunnyweek

Thank you sunnyweek, I'm awaiting a scan on my heart at the moment so will see if this throws anything up. Can't get a face to face with a GP for love nor money at the moment. Still the good news is I have got a podietry appointment, first one in 16 months, my feet are a mess so fingers crossed they can make them more comfortable than they currently are. Take care too and sending you my best xx PS. I know you had a few 'prospective tenants' looking at your nesting box. Did any feathered friends settle in this time?

Madmusiclover profile image
Madmusiclover

Sadly yes. I either sleep or listen to the radio. I cry a fair bit too. It passes eventually and can last from a few days to a couple of months. Every task however small seems like a mountain to climb. You are not alone.

sylvi profile image
sylvi

I have constant fatique, i don't have the energy for anything. I have RA and Fibro, so a double dose of fatigue. Hugs. xxxx

helenlw7 profile image
helenlw7

I’m struggling with fatigue too! My biologic has stopped working after 10+ years and I’m waiting to start a new med. I had fatigue before the right cocktail of meds was sorted but I’d forgotten how bad the fatigue was! I’m napping on and off pretty much all day. I had steroid injections in my 2 most painful joints and my bum on Tuesday and take oral steroids every day but pretty much all my joints hurt.I hope you get sorted soon, the fatigue is awful and other people don’t understand it!

Chris_O profile image
Chris_O

Hi

When I was diagnosed with RA early on, I went through a lot of pain and fatigue, it was so bad at times I couldn’t get out of bed. Fortunately I have a loving wife and am retired so I didn’t have to go out to work and my wife was really understanding and helped me a lot.

I didn’t understand what happened to me, as before I had a very busy and energetic life. That was about 4 - 5 years ago, and since I’ve been on differing medications my life is nearly back to what is was before RA. One of the things that helped me was to try and set goals, even just tiny things, but to remember your current limitations. Life is never static, it’s always changing, so look forward to tomorrow because it going to be better than today.

ATSF profile image
ATSF

I have the same problem, but it continues all through the night. Seen own GP once since February 2020. They hide behind an iron fort manned by admin staff. My RA Consultant and the local RA Hospital are seeing nobody, but you wont be told this unless you know someone who works there. To even get a phone call you finish up with a Nurse that will let the consultants secretary know your latest flare up problems. Main Hospital referrals are now in some departments are now over 12 months overdue. The NHS seem to have closed down.

Pippy25 profile image
Pippy25 in reply to ATSF

I am so sorry and saddened to hear this ATSF and know that for some they can relate to this while others are getting appointments and services. Its all a hotchpotch isn't it. Take care and sending my best wishes to you.

ATSF profile image
ATSF in reply to Pippy25

Wow! I don’t believe it. Phoned Doctors this morning, the appointments person must have detected the state I was in and got a Doctor to phone me back, followed by I want to see you immediately. Managed to see one of the Doctors who have put me on an emergency supply of high dose Prednisone, let’s hope it will work. He is also writing to the Hospital to tell them I need very urgent help as he could tell the chronic amount of pain I was in, plus other side effects that he thinks is a reaction to the pain problems.

Pippy25 profile image
Pippy25 in reply to ATSF

Oh that is brilliant news, I hope that this is the beginning of you moving forward and that things start bit by bit to improve for you as it sounds like you've waited long enough.

springcross profile image
springcross

Hi Paul. Add me to the list as I've been getting fatigue really badly too (fortunately minus the flare just a few twinges)and mine is also since April after I had my second jab (I'm not saying the jab is responsible but it is weird)! I fall asleep most afternoons and can't seem to come round properly. I keep nodding off in the evenings watching TV and when I wake in the mornings, I feel like I haven't slept for days. My last bloods were OK so it's very strange.

Knip profile image
Knip

Paul, I know exactly what you mean about feeling 'leaden'. Every joint feels so heavy and everything is such an effort and 'weight' adds to the pain. Yours sounds extreme and as if it is every day. I find it bad enough when it lasts for ten days. I can only think that your medication is working for you and you may need something different. In your shoes I would be contacting my Rheumatology Department. I'm sorry I don't have any easy fixes but really hope you get some help soon.

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