Fatigue: Although i am classed as in remision i always... - NRAS

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Fatigue

emma88 profile image

Although i am classed as in remision i always struggle with fatigue and have struggled with it alot the past few weeks, iv'e read that a 20 min nap can help but then iv'e also read doing that can make it worse i work in retail which aint the best ( will be talking to my manager tomorrow and hope she will help me out with shorter shifts) and was just wondering if anyone knows if a nap does help or does it make it worse and if theres anyhing you can do to help the fatigue

39 Replies

Hi. I understand as im also considered to be in remission. I can no longer work and I will have 10 to 20 min naps averaging between 2 and 4 times a week. I need them then dont. My rheumy says thats fine and very normal. I get so very tired but now on pred daily so still tired but not as bad. Is strange to be told in remission but still so tired. I wonder if the remission discounts tiredness .

All the best and hope you find your way of best to manage.

emma88 profile image
emma88 in reply to Ruth12345

Thats great thank you, i need to talk to my boss tomoz to try and get early shifts over xmas to fit in a nap in the afternoon to see it helps but i read online that you shouldnt nap but others said you can and didnt want to see my boss tomoz for her to then google it or something and say im lying im struggling with energy at the mo and dont want to feel rubbish over xmas but i feel like sometimes people think your just being lazy when you try and explain it to them, but if your rhuemy has said its ok ill take that over what google is saying haha im not sure wheb i next see my consultant to ask thats why im asking on here.

Ruth12345 profile image
Ruth12345 in reply to emma88

This is just my experience I dont have medical knowledge. I reckon its just what suits the individual as we all read on here that we all feel and react differently with some commonality. If you can, I suggest you talk to your gp or rheumy nurse or rheumy if you want / need evidence for your work. Hopefully someone else will have more knowledge to help you than my experience, on here. Its no fun being so tired, I feel for you. Let us know how you get on.

Ruth12345 profile image
Ruth12345 in reply to Ruth12345

Yes its very good. I have all their books.

helenlw7 profile image
helenlw7 in reply to emma88

I ordered a free book from the NRAS that explains fatigue quite well.

Luci22 profile image
Luci22 in reply to helenlw7

Can you share a link where you got the book?

helenlw7 profile image
helenlw7 in reply to Luci22

If you search for NRAS.org.uk/pub locations there are quite few booklets that you can either download or order.

in reply to Ruth12345

I think remission is based on the DAS score and fatigue is very debilitating but hard to assess/quantify. For my OH the worst part of all this.

Ruth12345 profile image
Ruth12345 in reply to

I tend to agree

I nap somedays and it doesn't seem to make a lot of difference to my night time sleeping , but does help when I'm really fatigued. I get a new lease of life for the remainder of the day.

I don't think there is a right or wrong just whatever suits you. But generally follow what your body tells you.

Have you googled the spoon theory, I find it an excellent way to describe to somebody without RA ( or other chronic disease) a little insight into our day! You can then follow on with how you think they could support you at work ( more frequent breaks, being able to sit rather than stand, no heavy lifting..... you say what you need). Also, you can try to help yourself a little and pace yourself ( however that can be incorporated into your day). Maybe try to take things easier at home before you get to work to try to “ save a few spoons for work”??? Best of luck.

janny55 profile image
janny55 in reply to Deniseelk

Hi Deniseelk

I have just read the spoon theory, it’s amazing and so true 🤗x

Ruth12345 profile image
Ruth12345 in reply to Deniseelk

I read it to my husband about a year ago and generally use it as base line for living. That is where my naps come in to regain spoons. It was on here I found about it, for which I am gratefull.

I am the same so tired pain comes and go s no pattern I have rested for 3 weeks as just had operation and still no better some days I think is this it .Is this how my life is now their s nothing I can do to change it diet exercise etc but it is always their so I no it’s hard but as everyone tells me be positive it is hard for me good luck take care 🤗

Ruth12345 profile image
Ruth12345 in reply to Elswick

I find being less mobile either makes no difference or I hurt more. By mobile I mean moving. I cant walk far and need a stick when I go out. I told my rheumy that doing somethings doesnt make my joints hurt more so I might as well do it, but it does make me even more tired and he said many people with RD feel that way. Elswick, really I understand and things will change. I am learning to live with this. Its a life long process that we didnt ask for. Yes it is really hard but we can all do this and learn from the medics and each other. ☺

Elswick profile image
Elswick in reply to Ruth12345

Thanks Ruth it’s nice to hear comments like that and we’re not on our own take care x

At one point my consultant said I was in remission. I still could hardly do anything, my wrists swelled like mad and still in same pain.next time he saw me said it was chronic RA. Sometimes I can't help but nap but other times I cram in what I can do so do as your body tells you I say

I also have severe fatigue. When I’m having a bad pain day, the fatigue is worse. I have to use my energy so wisely because sometimes the simplest daily tasks like taking a shower or cooking can wipe me out. Napping does help.

I sometimes have a 20 min power nap at about 2 but when I feel like you describe I buy Floradix from Boots . It’s a herbal tonic and I feel full of energy on it. It’s a 10 day course.

I suffer also from fatigue and when I feel tired more like exhausted I have a nap , my eye lids drop I cannot help it . I cannot see that a 10 minutes nap can be hurtful , just listen to your body Emma . This is my thoughts Good luck

Pre RA my OH was frequently caught napping after exercise etc. Now he rarely does, as for him the fatigue feels totally different and he just has to go to bed really early and sleep. Different for everybody. I hope you find what works for you.

Im not to sure if this is how i reply as a message for you all but ill try haha. Thank you all for you tips and advice i spoke with my manager today to see if i could do early finishes as i work in retail and we dont finish till 7 so its way too late to nap then, i said i wanted to try a quick power nap after work to see if i get a bit of energy back as when i get home im bed bound and can never to anything with friends i said i wanted to try it in the afternoon when it wasnt too late so then if it did work i could still do things and i said it would only be for over xmas when retail is at its busiest, i dont want to be bed bound all over xmas and not being able to enjoy it, she basically said she cant give me all earlys it isnt fair and were short staffed could i not just nap before work, i said i dont know if i would benfit from that as i would be waking up in the morning to have a nap withing a couple of hours from waking up and not doing alot to then going to work, my fatigue gets worse when iv done a task such as work not when iv sat around doing nothing ( i get it wheb not doing much but its nowhere near as bad as when doing tasks) so i dont think ill be able to try napping anytime soon. Thank you all for your help tho

Elswick profile image
Elswick in reply to emma88

Remind your company duty of care they should be helping you over this .i work in retail and my company have been great I am on lighter duty and gone shorter hours good luck hugs

emma88 profile image
emma88 in reply to Elswick

Sometimes they can be ok like they ask if im ok lifting certain things but then other times i feel like when i ask for help it's like they think im making it up like when i asked about having early finishes just for december when retail gets very busy it was like i was a huge pain to her i never ask for anything for my RA other than to change a shift once every 6 months for hospital appointments i do way more for then than what i should and just feel sometimes they dont take it seriously. Thank you :)

I get up super early and nap most afternoons for 1-2 hours. Just can’t keep my eyes open!

Try matcha tea.

I think remission can be misenterpreted as 'cured'

My blood tests tell the professionals I'm in remission because every six months they squeeze my fingers and hands and listen to me saying ' I'm not so bad'

CRP is kept very low due to Benepali and Hydroxy but none of these descriptions and test results cover the morning/any time stiffness and bone aching pain.

I burned my hand today with hot oil while I was cooking dinner and God it seared and blistered but it didn't even come close to the invisible pain of RA.

In relation to tiredness I just feel an all consuming lethargy! It's a lack of interest in anything , a world weariness, a sense of all encompassing cynicism.

So even though I work 17 hour plus days and Im in so called remission I'm still suffering every day and that's without the side effects of allergies to the RA drugs.

Grateful to be working and grateful for holding deformity at bay but I still believe Emma if you need an afternoon ten minutes rest to get you through then you ABSOLUTELY deserve it and need it and your employers should actually be falling over themselves to facilitate you as a person with a disability in the workplace.

Mx

emma88 profile image
emma88 in reply to Mandalou

Im the same when my fatigue kicks in bad which tends to be after work as im on my feet for a long time i feel energy less i have no interest anymore in doing things i always have to make up excuses and i dont want to be like over xmas i want to be able to enjoy what i can and not be bed bound the whole time thats why i asked my manager for early finishes just for december so it gives me time to try taking a quick nap to see if it helps and if it does it then gives me time to still have time in the day to see friends and family and try and get my social life back, my manager basically said she cant give me all early finishes which i dont get why as she gave me all earlys over six weeks holidays as i had plans, i always just feel when ever i mention anything to do with my RA they just shrug it off like im lying about it and i never ask for help with it ever this is only the second time i have asked in years. Im not whether to see if my doctor can give me a note to back me up

I often have a nap during the day, fortunately I am retired so I can please myself if I feel fatigued. I have always been in the opinion that a good sleep, even if only 1/2 hour can do you good. After all nature’s way of giving you a break and letting your body have a break from the stress of pain.

emma88 profile image
emma88 in reply to pip12

Yeah thats what i wanted to try for the month or so to see it it helps get my energy back, its more when iv been at work as were short staffed and everything is getting put on me so the fatigue is worse than usual i want to try and pace myself more but with my work its hard i always feel im a burden when i ask then flr help once in a blue moon. Thanks you :)

Hi there everyone. I have just been reading through all the comments on this post about Chronic fatigue syndrome.

I was diagnosed with Rheumatoid in 2011 and have had a problem with the fatigue from the start.

I'm not sure if I have much to add to all the comments so far, but a long time ago the clinical nurse at clinic told me that the fatigue happens when the condition is active and joints are being attacked by the immune system. I have not heard anyone mention this here, but it makes sense to me.

If we become unwell with a common ailment like a cold or flu, we usually feel out of salts, generally unwell and tired. This is usually because our immune systems are trying to fight off a virus. As sufferers of rheumatoid or many other forms of immune disorder, it is our immune system which is at fault and attacking our normally healthy bodies. So, we feel unwell and fatigued !!

So, it seems that there is nothing much we can do about it but manage it the best way we can. For me, it means pacing, doing a bit physically and testing a bit. It means organising my chores carefully.

But that's OK for the likes of me, because I am retired. But until a year ago I was a full time carer and it was more difficult to pace myself. So, it's an individual lifestyle situation. I used to work in retail emma, and I can't think of a worse occupation for someone with our condition.

You have tried to reason with your boss and he's having none of it !! So, maybe (a big maybe, I know) you could have a think about finding work that would suit you better. A big ask, but worth thinking about. Perhaps split your day up so that you get a text in between. Just a suggestion.

I wish you well, and hope your situation can we resolved.

Lots of hugs coming your way from me. Xxx

emma88 profile image
emma88 in reply to petalnumber2

Sorry for the late reply yeah i have been trying to get a new job for a long time now but no luck i cant get an interview i keep getting declined i wont give up but as of yet iv had no interviews what so ever never mind the job haha i agree retial is the worst with RA thats why ive been trying so hard to get out, my managers sort of helped me now but still not 100% what i asked alot of my shifts for xmas are still awkward finishes so wont have dinner till very late in the afternoon and will be too late on the day to try a quick nap i would have loved to be out for xmas as thats the worst time in retail for someone with RA but had no luck. Thank you for your message x

petalnumber2 profile image
petalnumber2 in reply to emma88

Ahh, I’m so sorry to hear about your struggles. I used to work in retail myself in Oxford Street, when I was much younger, so I know what a rat race it can be. It’s the survival of the fittest !!

I am thankful that I had turned 60 years old when I was diagnosed. It must be a nightmare for younger working people, like yourself. Something has got to give, for you and I hope it will be sooner rather than later. My heart goes out to you. Take care xxx

Sorry about 2 silly mistakes, rest not test and not text either. Ha ha

Have actually done quite a lot of research on fatigue in AI. In Ra 70-80% have fatigue. This is seen as a result of the underlying metabolic condition where the so called oxidative stress is very high in RA and it effects the mitochondrial energy production in our cells, which is dyfunctional in RA. Many of the meds we take for RA do in fact increase the oxidative stress even though relief with pain and eventual speed of disease progression is decreased.So from this view point the fatigue has to do with the underlying metabolic dysfunctions that are part of RA and for which so far there is no cure.

Hi Simba,

I feel sure that most of us are happier with more knowledge and understanding of what makes us tick. I certainly deal with the likes of fatigue better knowing the science behind it’s cause. Thank you xx

For me it has been easier to cope with my RA when I know more what is happening in my body. It also gives me a better chance to find ways to help myself feel better.😊

Chronic Fatigiue is normal during a flare, and is casued by the same mechanism that makes you tired and achey when you have flu (ie your immune system).

What made a huge difference for me, and still does, even though I am on a Biologic (Cosentyx) is a low lecting, low histamine diet.

I didn't know I had chronic fatigue until I tried thsi and literally woke up within 2 days. When I fall off the diet, the aches and tiredness and fuzzy head all return next day, lasts for up to 3 days

I could sleep all day and it wouldn’t help . It’s different for everyone give it ago and see, you have nothing to lose.

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