First post on here and have been meaning to query as I feel lost in being able to fully explain how I feel to loved ones about the aches and strains that I’m beginning to get again.
I was diagnosed with RA last year in Feb and it was quite a flare! I was put on MTX until my liver enzymes spiked and was changed to Sulfasalazine. Around July/August I’d considered myself in remission and had been up until my moving house this March.
I think the stress of the move and now unemployed has placed me back into flare ups and it has put a downer on things. My biggest problem at present is the fatigue.
I had a routine last year with exercise and it did me well but that was when I was in remission. Now that I’m flaring again, I’m finding it hard to have that motivation and energy for exercise.
I now live in an apartment on the top floor and when I take the bins out, I use the flight of stairs (5). To me, I do consider this exercise and I consider this something of a victory in my current state. I do get anxious from time to time about walks as I’m still new to the area but I will every now and then walk around the block or pop to the corner shop.
I was asked today by my partner if I’d recently exercised outside to which I responded with ‘I did take the bins out etc’ and they said ‘no, have you done a 30 min walk?’. As they know that’s not something I’ve readily done on my own, their question was to bring up that I’m a ‘hermit’ and walking around the block and to the shops is ‘not’ exercise as anyone can do that’. This hurt me somewhat as I found it hard to put my point across that walking to the shops and back is exercise to me, at least.
I’m seeking others within the RA community to share any thoughts on this. Have I got this all wrong? Am I doing this all wrong? Some days it’s a struggle but I find it hard to articulate how I feel with others, especially my partner, on what it means for me.
Not every day is the same and some days I have no energy at all. I know my partner is coming from a good place but for days like today it’s a struggle and frustration on both our parts to understand that I can’t always do 30 min walks straight off the bat.
I appreciate anyone who takes the time to read this and reply as this was quite a lengthy read. Thank you all.
Stay safe. Stay happy ❤️
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FloralsandTrinkets
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Aw sweetie there is no such thing as doing it wrong. Fatigue is a nasty thing so hard to explain. I describe it as lead in my veins and a brick in my head. There’s a great book ‘Fatigue matters’ free from NRAS. Useful for family as well as you. If fatigue persists worth a chat with your rheumy nurse. Hope you feel Better soon. You could search ‘fatigue’ on this board to read others’ experiences. You are not alone and we understand.
Hi and welcome.
FATIGUE!!! Has been and is still my worst symptom. Unless you suffer with fatigue then you don’t understand it.Fatigue is a sign of uncontrolled disease. Have you contacted your team ? This disease changes consistently. They maybe able to help.
Extreme fatigue is all consuming. There are days I can barely lift my head off the pillow . I can’t think /concentrate/ hold a conversation never mind take out the bins . I was a very fit exercise junkie now if I can manage it I walk the dog . Pushing myself physically during a flare causes repercussions as well as injury. I’ve been told rather than doing 30mins walking in one go do 3 x 10 mins . I wish I could do more but I can’t . Gentle stretching during a flare is advised. Swimming can help . Your not on your own so many of us do suffer fatigue . I’ve been with my husband for 38 years and when I first became unwell he said this isn’t you your not a lazy person and now when I’m bad he makes sure I take it easy as unfortunately I still tend to push myself. I’m lucky he pretty Much gets it .x
Try looking up the spoons theory, it really explains fatigue well to others that don’t understand. Fatigue is a nightmare and if you’ve never experienced it then it is difficult to understand.
I would definitely contact your rheumatology team as it does sound like you are having a flare and maybe your medication needs tweaking again. Good luck x
You could suggest he puts some leg weights on and some arm weights , maybe a full backpack and some stones in his shoes and then see how far he wants to walk like that !
Fatigue and pain is a heavy heavy load to carry , short or far x
Hi F&T, firstly welcome to you. As wisely said already there is isn’t a rule book for how you should exercise and what’s right for you isn’t for others, etc. I can’t do my usual exercise due to shielding so I have had to try adapt. You’ve just recently moved home and that’s a very tiring event indeed. I also agree that fatigue can be a big sign of uncontrolled exhaustion. I’ve said this recently and before that in my mad ol days of RA inflammation and before my meds worked to capacity, my doc used to tell me I had got “unprovoked exhaustion” and that meant I was tired out doing nothing really. If you sleep badly too this adds to the constant fatigue. Then it’s possible some meds like painkillers make you tired too.
Yes, some people even close to us can have a problem understanding RA fatigue. If they realise RA affects the whole body and is systemic so made you feel exhausted it may make more sense. Would your partner read an online article/leaflet on how RA affects you? (I think NRAS has something on this for friends and family etc.) I was always advised by my then rheumy to have a more restful day of doing much less after an eventful one going out, etc. I try do this if I can even now. Well I did as I don’t really go anywhere at the mo. Often a partner of family/friend trying to help sometimes comes over as overbearing, when they really want to encourage you (but it could feel like we’re being given a task/orders!) They so often feel sad and a bit helpless too, for your loss of mobility and agility, but I hope soon you’ll be able to do more of what you’d like to once meds are working to full capacity and freed your joints up. 💗
As J1707 says fatigue can be a symptom of uncontrolled disease. So rather than just a sign that you are having a flare it could mean that you need to have your medicines reviewed. Especially if this has been going on since March! Talk to your medical team.
I always suggest that you don’t put up with debilitating symptoms until the doctor tells you that you have tried all the options available.
But also be kind to yourself, and just do what you feel able to.
Hi and welcome to the forum. We are all different and experience our RD in different ways. You have to do what your body allows. It is good to exercise but your body will soon let you know when you have done too much. The fatigue is very often the worst part of RD because it affects every aspect of our lives. Just rest when you can. It is difficult to explain to someone who doesn't have the disease, that it isn't like osteo arthritis. You will find some of us call it rheumatoid disease because arthritis is only one symptom. RD carries so many other problems. I don't blame people who don't understand. I didn't know the difference myself until I got it. I think raising awareness is the best thing we can do to help others understand. I hope you are feeling better soon.
I am gradually coming out of a period of great fatigue. During this period I just had to be kind to myself and just do what I could without making the fatigue worse. I exercised for short periods when I felt I could muster the energy, and then REST. No pressure to do more. Anybody who hasn't been through fatigue can keep their well meant advice, thank you. As Musiclover said, have a look at NRAS on how to best deal with fatigue, but adapt any advice to suit you.
I would also get in touch with the Rheumatology team and ask for an urgent review. This has been going on for too long. All the best.
If you do housework, then that's exercise, if it raises your heart rate. We had a Rheum Zoom on Cardiovascular health last week and knowing how hard it is for people with RA to exercise Prof Kitas asked the question do you do housework or gardening. Obviously if people are able to do more then that is great but as long as you do something to raise the heart rate. I downloaded the Active 10 app from the app store last year, the thinking is that the 10,000 steps thing is rubbish (invented by a Japanese Manufacturer it was the name they gave the pedometer they made back in the 50's!) What this programme was saying was better to do 3 (if you can) brisk walks a day, the Active10 will monitor if the speed you are walking at is brisk enough so you can gauge your speed. Not always possible I know but I find it quite good and it tells you how far you have walked total (if you keep your phone on you, even walking around the flat you will be surprised how far you walk in a day). You can set yourself a goal, mine is one active10 a day (being at a desk all day its hard to do more, and the dog walks and sniffs so slowly in the mornings!). We also did an exercise and RA Rheum Zoom back in May. We are just recruiting a volunteer video editor and then will hope to have those Rheum Zooms available to watch back on our Youtube channel. Keep doing what you are doing but try to set yourself some mini goals.
Other people making comments like this tend to make me explode!They have absolutely no concept of how difficult it is to battle through the fatigue to do the shopping or put out the rubbish.
Anything that you achieve, even wandering around slowly with a duster, preparing a meal (sometimes even eating it), is exercise when you have fatigue.
The information on the website: nras.org.uk/product/fatigue-matters/
should be compulsory ready for partners, relatives and others in your social group.
I’m so impressed that you manage to walk around the block or go to the shops and take the bins out with chronic fatigue. Try not to beat yourself up you are amazing 🤩. Education for your partner and others who don’t have or know about this disease is the way to go and as others have said perhaps a chat with your rheumy team is in order and a review is needed sooner rather than later because my experience is that it’s unlikely to improve if your RA isn’t controlled. We all get how you are feeling so keep posting and no doubt everyone will be helpful with advice and no pressure to do more and definitely no-one will ever tell you you aren’t doing enough. Be kind to yourself. You are amazing !!!
I am so exhausted just now that I can barely do anything. If I try to read or watch TV I just fall asleep & yet I am not sleeping well at night. Every little thing feels as if I am climbing a mountain. I even fall asleep over the computer or when I am sitting on the loo. I have been off methotrexate since February for various reasons & last week I rang the rheumatology nurse to ask if I should go back on them now but that obviously I don’t want to be on them if I don’t need them and my pain is still the same as when I was on them. She said to leave them off. I didn’t connect the exhaustion with a flare so I didn’t mention it to her. About 17 years ago I was like this & could hardly get out of bed & my GP at the time said he thought but was M.E but now I am wondering if it never was that but has been RA all along. It is so hard to know just what is what.
in reply to
I’m like you fatigue off the scale at the moment and joints stiff . I’m blaming the weather it’s all over the place . I have work men doing my bathroom poor blokes are going thirsty as I keep dropping off x
Hi, how do you explain fatigue when it varies with each person and I believe is affected by what else is happening in their lives. Send of for the booklet as suggested and see if your nurse can help. My nurse suggested drinking Guinness which I can take in small quantities mixed with fruit juice. A daily spoonful of marmite was also suggested. Perhaps some Vitamin B tablets from Holland and Barrett would help. Exercise that comes in different forms and you will have good and bad days. I have a portable exercise bike I try to use daily, I'm struggling with mobility at the moment but it is getting better and when sitting down which I do too much move my feet around and do 'kicks'. I also do the leg kicks before getting into bed and before dressing in the morning. Any exercise has got to help. I'm happy you have family support. 🐈😸
Oh flora, I’m so sorry to read your post, your achieving so much up & down 5 floors with the bins, yes it is an achievement & it’s movement all the same & popping to the corner shop is quite sufficient for you at the moment. I think exercise is beneficial but there are times you just need to do nothing, rest is very important too, your in a mass flare & until you can get it under control, life is going to be challenging for you & yes for those around you. It’s hard for them to ever understand how we are physically & emotionally affected, especially when we’ve been fit & active people.. once you finally get on the meds that work for you, life will normalize.. I have had a really bad few years & now thankfully my RA is settling down & the last couple of days I’ve been going through my home room by room spring cleaning something I couldn’t of done to that extent till now, although I hated it at the time I turned a blind eye & excepted that was how it was for that time... the most I could do was cook-our meals, washing, ironing etc & the basic cleaning so to get down & properly clean cupboards, skirtings, windows etc & now to sit in a fresh clean house is so rewarding, but I haven’t done it over night it’s all taken time a bite size here & there... you will get well, it’s extremely frustrating for you at the moment & also for our love one... your doing fab, only do what you feel you can do for now, it’s hard to believe when your in all that pain & fatigue but life will pick up in time...
I am high fatigue and I have to do bursts of activity in 10-15mins spurts which has also shown to be better with fatigue than trying to overdo it by a 30min walk or a gym session.So like you doing the bins or housework is now my activity compared to being n my feet at work for most of the day for 9hrs a day. The change is u nreal and hard to recognise yourself some days (ok she lied most days).
Family friends anyone you connect with will not get fatigue it is NOT just being tired it is walking in treacle with a body on your back and its raining hard and wnd at 80mph.
Check NRAS webpage they have lots of links to advice for loved ones too.
Dont beat yourself up and be kind to yourself and check with your rheumy team if there is anything else you can do to improve your quality of life.
I've nothing else useful to add to all the comments, I just wanted to say, yes ! Fatigue is so difficult to explain to someone who doesn't have it. It has been my worst symptom, now more manageable with the medication that I am now on. I don't try to fight it as I've learned that I cannot win, I just go with the flow, and do what I can.
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