Not enough energy to move

[Gottarelax]

I'm having a new symptom and I'm not sure whether it's lack of sleep due to RA or a feature of RA (or something else). Yesterday evening after doing a little more than usual I just had to really battle willpower to move. I knew that there was not a physical block but it was like my brain decided I was a statue. I eventually, very slowly moved myself, stood up and was my 'normal' self although generally a bit slower. I thought I'd be back to normal after a night's sleep. Well I was in a lot of pain last night so sleep was broken and I feel similar today. Just like my arms and legs weigh much more than normal. Is this normal for RA or am I just odd?

[Hidden]

Yep get this regular in fact have it today .FATIGUE!! It’s a sign of active disease especially as you have pain. If it continues contact your clinic. It’s horrible you feel like your in a bubble and everything is happening outside. X

[jbzm in reply to Hidden]

Brilliant description! I have tried to describe it in the past as feeling like I'm up in the top corner of the room (ceiling), looking down on everything - I know what is going on around me but just don't seem to be 'part' of it. One step removed from reality . . .

[KittyJ]

I get like this if I overdo things ( I never learn) it can take me a few days to recover but if you don’t then I’d contact your rheumy team to let them know.

[Madmusiclover]

Far from odd. Welcome to the fatigue club. Have a look at NRAS publication ‘Fatigue Matters’. Downloadable from website or order hard copy.

[Neonkittie17]

I felt like I was dragging my legs round when my vitamin D was rock bottom. Hope you feel improved soon. 💗

[AgedCrone]

Sadly that seems typical of RA inflammation fatigue….even suffered when you are on prescribed medication.Can you speak to your medics to see if they can hurry up getting you on some sort of medication other than Prednisolone?

Hope you feel a bit more energetic soon…if you can, just go with the flow & don’t worry that you are being lazy…You aren’t….I find the more you don’t try to fight it…the sooner you perk up.

[MadBunny]

As others have said - fatigue. I'm crashed out on my bed at the moment. I went shopping earlier ( only for a short time ) and I can hardly move now. Both my legs feel like lead and I keep falling asleep. I'm on medication and usually I'm fine but have been like this for the last week or so. Hopefully it's just a blip.

[Gottarelax]

Thank you all for your responses. It looks like I'm fully initiated into the club now 🤣. I learned fairly early that I needed to take things easy but I had been feeling more and more lazy and so started to 'pull myself together' and just get on. It's certainly backfired! I am still awaiting an MRI scan which will be after the bank holiday now and then I'll need a private consultation (which is actually pointless) and then an NHS consultation before I can get DMARDs. I do have some prednisolone which I can take immediately I've had the scan but hoping that I don't scupper the diagnosis by taking them before they are fully decided on what's going on.

[kennethb in reply to Gottarelax]

As has already been mentioned, try taking Vit D, Available on E-Bay at reasonable prices. Take about 1000 -2000 units per day.

[Gottarelax in reply to kennethb]

Pretty sure I have some vit D spray. I’ll dig it out!

[Hidden]

I am like that nearly all the time. I feel as if all my energy has drained down and out of my feet. My arms feel like concrete weights. I am so exhausted and yet I can' t sleep at night. I lay awake for so long that in the end I get up and do a bit of crafting. Then the following day I can't stay awake. I just can't seem to get to sleep at night and stay awake in the day. Perhaps in my case it is old age!

[Gottarelax in reply to Hidden]

It doesn’t help that I am not sleeping well due to not being able to get comfortable at night. Reading the NRAS guide to fatigue, they recommend magnesium as a cream to help getting to sleep so I’ve ordered some to try out.

[Madmusiclover in reply to Gottarelax]

Have you got a decent soft mattress topper? I have two 😉

[Sheila_G]

You are not odd. RA has a way of throwing new symptoms and problems when you least expect it. I would call your rheumatology clinic and ask to speak to the specialist nurse who will advise and put your mind at rest. Good luck

[Tourk]

That was me a few months ago, couldn't move my left hand, all my joints hurts was to much effort to lift my head off the pillow. Without getting into why so many people are struggling with exhaustion, their are very effective things we can do to not only gained more energy but improve our health and tackle ra

Stat by covering the basics, vitamin D helps with the lack of energy, Magnesium and zinc. My eyesight was getting g patchy so I started taking vitamin A. So far so good..

The biggest thing that helps is "creatine monohydrate ", incredibly stuff it's sold as a boost to body builders. I get the NHS Patient access newsletter where they where talking about the benifits of taking it to improve RA, and energy levels.

Since I've been taking it I'm able to do basic exercise every day, got the use back in my hand and have very little pain from the RA. More than anything it's cleared my mind I still get tired but its after ( for me) an active day.

I've got a spinal injury, nothing is going to improve that. But taking creatine monohydrate I feel so much better in myself. Even my trigger thumb is better.

As always do your own research, if in dought talk to your doctor..

It really has made a huge difference to me, I this helps

[Hidden in reply to Tourk]

I bought some ‘fuel’ breakfast drinks the other week, I was bouncing!

[Tourk in reply to Hidden]

Lol sounds good.I've looked at many different pick me ups over the years , a lot of them have high doses of caffeine. I like my caffeine in liquid form and have had to limit myself to 4 cups a day.

Energy drinks are OK for the occasional hit, but the side effects if you do them to often are deadly. Because of the caffeine they are terribly addictive as well.

The beauty about things like creatine monohydrate is its like eating really well, it aids your body instead of forcing it.

For me taking half the recommended dose suits me best, it's important to drink plenty of water as well.

[Gottarelax in reply to Tourk]

I’ve ordered some créatine monohydrate so hoping it helps me too. Caffeine is out for me as I get severe leg and foot cramps with even one cuppa.

[Tourk in reply to Gottarelax]

Let me know how you get on with it. Always read the instructions different brands have different advice though they all say don't exceed the recommended dose and drink plenty of water. I started by take a 3rd of the recommended dose until I found the amount that seams to suit me best.I gave just over two days worth to my solicitor/ friend he's got MS, diabetes and been diagnosed with RA. He was complaining about pain in his hands and stiff fingers. The second day he asked me to order him some. His MS is rather advanced he's still workings but struggles to drag himself around. What creatine has done for him is impressive but limited. His ra is gone and he's so much more positive in himself. Its a shame it can't do anything about his ms. I've noticed his thinking is clearer, he said its as if he can see through a fog.

Before when home he just sat on the sofa watched TV. Now he's in the garden in his powered wheelchair.

Eating healthily and drinking pleanty of water all helps but that in its self takes a lot of energy, we've got to want to. Half the battle with any disability is keeping our minds healthy. Trying to stay positive. I've found taking creatine helps

I'm in so much pain I don't get hungry only feel drawn / ill when I've forgotten to eat.

[Hidden in reply to Tourk]

‘Fuel’ is like a yoghurt drink.

[Tourk in reply to Hidden]

I was reading about how our food isn't as good as it used to be, everybody knows how poor meat is compared to 30 years ago but apparently vegetables are the same. We can't eat pato skins anymore because they are so contaminated we can't even compost them. Belezve me we tried after six months they still hadn't rotted. No wonder so many people are getting things like cancer. But what surprised me in this report is they claimed that to get the same nourishment we got from one Orange back in the fifties we would have to eat 6 oranges today.I can't see how this claime is true but just because I don't understand something doesn't mean it's not true.

From what we've seen from the last couple of years even the wildest conspiracy theories have turned out to be true.

Simple answer Seems to be don't rely on food to provide all you protein and vitamins.

And above all don't eat farmed salmon lol

[Gottarelax in reply to Tourk]

I was thinking the other day about foods and their impact on our health. I eat Keto (I did for years before I got RA) but started comfort eating when things got really painful. I'm trying to go back on it now so that I'm not eating processed food again but it's hard to make those choices when you're tired and in pain. Since starting this thread however, I've been taking vit B complex, vit D/K and creatine monohydrate. I don't know if it's coincidence but I have a little more energy. I'm also using a magnesium cream that is supposed to aid sleep and restless legs.

Are you in UK? here I think that the regulations surrounding our food quality are being thrown out in new trade deals so we'll probably have to start paying a premium for food that is at the standard that we are used to now.

[Tourk in reply to Gottarelax]

Unfortunately I am in the UK, food standards have been dropping for years. Saying that they are better than on the continent. It's as if poor quality expensive food is wanted.....

My wife has started drawing vegetables and she got a few chickens they make great pets. I'm not a great animal lover but I do like them, they all characters very intelligent as well.

We live in unusual times ( to put it politely). We have to look out for each other

I've found creatine very effective reducing swelling and pain in my fingers trigger thumb is a lot better as well.

[Hidden in reply to Gottarelax]

All the EU regs have gone now… we are doomed 😱

[Sebastian247]

I'm sorry to hear you are feeling so exhausted. Like others have said it is a feature of RA.

My RA seems to be getting better since I've been put on a higher dose of methotrexate.

But two days after the weekly dose I have a day of extreme fatigue. It's as you describe, there's no physical problem but a severe lack of energy and it takes huge will power to do anything remotely physical.

At least this is usually confined to one day which is better than the constant fatigue when RA is active.

Hopefully with treatment things will improve for you. Keep faith things can get better.

Best wishes.

Seb.

[Hidden]

This is pretty standard. You will have done ‘too much’. Have a rest day and I am sure you’ll resume your ‘normal’. Pace and rest is the way to go xx

[jadean8743]

I call these days my "unplugged" days. It's like someone disconnected my electricity supply. Rest is the cure.

[Deeb1764]

I know this might sound mad but I go thro periods of this a lot with fatigue so on the bad bad days at the start I set a timer and every 30mins it made me go right get up and move for 5mins. This did help and it also stopped me from being on a sofa for a whole day as its easy to fall in the trap of not moving.This past week my fatigue a shocker but I move every 30mins no matter what. Our bodies need movement.

[Gottarelax in reply to Deeb1764]

I do move often as otherwise it becomes difficult to stand at all. Sometimes that takes a lot of effort though and on really bad days I find an hour or so bed rest helps a lot.

[Deeb1764 in reply to Gottarelax]

Yes it is finding the balance I have to do sofa move sofa move. Some days I would be happy not to move at all. My hubby came home one day I had passed out with fatigue on the sofa with the hoover still running!

[Gottarelax in reply to Deeb1764]

Oh no, I can well imagine that this could happen though!

[Chockyuk]

Fatigue is awful, when I mention it to friends, they say oh yes I feel tired too 😂But fatigue is more than just tired 😓

I had to change my working week from 5 days to 4, and even though that’s better, I’m still exhausted. It’s like you want to get up, but your body just can’t respond. I’ve lost count of how many times I’ve been prostrate on the sofa, when my son is home I feel embarrassed him seeing me like that.

[Gottarelax in reply to Chockyuk]

I'm sitting here at my computer and I have the energy to look at sites like this and respond but I'm just finding it really difficult to work. It's like it's all too much to contemplate when I feel like this. Really strange as I used to be really engaged with my job. I feel like a fraud, surely if I can type here I can sit and do my work! So I kick myself into gear but in order to do my hours (and I'm honest about that) I am spending much more time at the computer than I want to be....meaning it's a vicious cycle and I'm not quality relaxing during the day.

[Hidden]

Hello you might want to order or download our publication Fatigue Matters nras.org.uk/product/fatigue... or take a look at our Rheum Zoom on our YouTube channel youtu.be/iwoSWOYGGuU(Not working as expected?)

[Gottarelax in reply to Hidden]

Thanks Tracy, I did read the publication and have taken some advice. I'm feeling a little better to day. I shall watch the video now,

[Angels54]

Yes I’m the same , haven’t been like this for a long time, my legs are heavy, shoulders , feet bad can hardly walk, rang 111 as my knee swelled 3 times it’s size , had bloods done which shows infection, took my biological a few days ago became worse must be due to infection, now on antibiotics.

[Gottarelax in reply to Angels54]

That sounds very painful. I hope the antibiotics do their job and you get your normal self back soon!

[Mmrr]

I've not much to add to what folks have already said, other than no point in trying to overcome fatigue, best just give in and go with the flow... it passes sooner. I have my Fitbit set to remind me to move every hour as it is easy to let many hours pass without movement.