Does anyone else feel that they are just about “keeping their head above water” with the awful fatique that comes with RA?
I try to keep active, dog walking , pottering around the house, do a voluntary shift every week for our local Hospice shop & then usually by Friday I literally “crash & burn” with tiredness, the pain in my hands, wrists, shoulders, knees & feet gets unbearable aftercoping with it for several days then I just crawl back under the duvet & hibernate for two days.
I am on Methotrexate 20mg weekly injections & sulphasalazine & feel that the meds are not holding the RA back. Also told my follate levels are low despite taking 6 folic acid tablets a week. I sometimes wonder how much longer do I have to put up with this crap? Sorry for the rant...
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Juliachoo
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I think many of us suffer this problem. I know that I did for several years before I was diagnosed with RA
Mine tiredness was put down to being a single parent after my wife was killed in an accident, they thought it was stress. Like hell it was as I had suffered tiredness for ages, previously they said it was low testosterone.
I am sure that doctors sometimes have selective hearing or just do not listen and that is being polite.
Now they dare not say it is anything else but RA as my blood tests revealed all and a lot of damage caused by RA
I have everything mapped out, changed countries and my lifestyle. I even retired more than twenty years before my time. Now I am just enjoying life and making each day count
Yes, me too, when I was working full time I used to get so tired. I was told 8 years ago that I hadn’t got RA.. funny how it was diagnosed 4 years later by my shoulder surgeon who ordered the anti cop blood test. I just feel I’m getting worse despite the MTX & SFx
Yes unfortunately all of us with this RA do feel like this, it's even worse, when you have to go out to work, feeling like crap, and your employer doesn't even understand what RA is!!
Anyway it's the weekend, so just try and relax and get plenty of sleep
Yes I agree, the tiredness when you work is awful, but I worked full time for 42 years & now when I should be reaping the benefits of retirement I’m too blinking tired to enjoy... I feel so sorry for everyone who has to work with this rotten disease..😘
It’s ok, I am still very much aware of working with this rotten disease although mine was undiagnosed until after I finished.. hugs albeit gentle ones xx💕
Yes I think it’s as if we just go round in circles.i work as a Carer and by the end of the day I feel as if I need a Carer.the wiped out feeling sometimes feels worse than the pain.your too tired to move hence you stiffen up more.i used to love getting stuck into my housework and now I never feel as if I get on top of it.
Fatigue is my big problem. MTX helped a bit when I was on it, but it seems it is one of the issues with RD. I don't work anymore, just could not manage, so it is easier to pace myself a bit, but I still crash and burn regularly. Sigh.
When I was first diagnosed with Rheumatoid in 2011, I was my husband's main carer. Ian had diabetes and was wheelchair bound due to leg ulcers and general lack of strength in his lower body. I was so worried about being able to continue looking after him. Life can be very challenging at times. The fatigue I was experiencing was my biggest challenge.
if you are of working age and you are trying to lead a normal life keeping a roof over your head and look after a family it must be 100 times worse to manage.
These days, since Ian passed away and I am living alone, the fatigue is taking different kind of toll on my life.
It has made me almost house bound with many a day of moving between armchair and bed. My painful feet yelling at me when a try to stand long enough to peel a few potatoes and make myself something to eat.
Sheer misery, but nothing compared to you younger people who have a job to hold down, a family who are dependent on you.
It certainly is a big problem with RA and I’m glad to be retired as I couldn’t visage having to work full time anymore,I’m also having a phase off waking up at stupid o’clock at the moment which will be down to the steroid injection I got the other day xx
You say that you don't think the meds are holding the RA back.....does this show in your blood tests or physically in your joints or is it just painful? As if so you should push for a meds review. I know my fatigue is 100 times worse when the disease isn't completely controlled.
These days my disease is well controlled, and as long as I pace myself then it's ok and I can live fairly normally. But the minute I get overtired I can feel the disease bubbling away....
I just wonder if you spread out what you do in 5 days over the full 7 day week then maybe it would level out a bit?
I stopped working as just couldnt on RD hit me like a brick wall. As others have said I really feel for and admire those who are working if the RD is causing issues. My children were adults so although emotionally and financially needed to get my head round not working its not like having children to look after. Im tired all the time. I wake up feeling like ive done a hard day at work, so I understand Juliachoo.
I think you need a meds review. Have the docs considered biologics? I’ve been on them since November and the fatigue has gone. I run a very busy company and am almost back to my usual 12 hour days. I’m fortunate in one way, that if I’m not great, I don’t have to work as I have a team, but can’t do that very often as I’m responsible for their mortgages and lifestyle (and mine!), so there’s no choice but to work and I love what I do anyway and it gives me a reason to get up.
I was just on sulfa and mtx and Pred for two years. Pred was the only thing keeping me going. Came off and back to square one, couldn’t function or barely walk, so given biologics. Was a life changer. I’d push for those as it could change everything for you.
That’s good news for you! I have pressed my Rheumatologist for biologics & received a flat “no” . According to him my bloods are fine, his stock answer, then he says I must have fibromyalgia which is his get out of jail card. I told him that the flares I have are not fibromyalgia & do not seem to coincide with my blood tests. He’s like an automaton, but there is no one else without travelling further afield which puts me off. I did get some good advice from the RN who advised me not to try & get through flares by myself, but to ring up & come straightaway for a blood test so that I can prove I am having them. I have now done this twice & also took photos but I havnt seen my cosultant since early Oct. not a good scenario & I had
knees so swollen 4 weeks ago that I could hardly walk, but we were going on holiday so I bought knee supports, got assistance at the airport & basically spent most of the holiday around the pool. Sorry for the long rant Im not in a good place at the moment xx
No I try to stay off prednisolone as know the harmful effects of long term use. I did have the triple booster steroid injection just before Christmas during a pretty nasty flare which worked like magic but now has worn off.. 😘
I am hoping this is going to be me soon, when I go on biologics in a few weeks time, you have given me hope, I seem to get a few weeks of feeling normal, to thinking its gone away, only to then come crashing down again
its a cruel condition
if you don't mind me asking what do you do in your company? that's a lot of hours to do
My business so rather goes with the territory. 6.30am meetings, evening networking etc....all add to the day! My biz coach says, the great thing about being self employed is you get to choose which 15 hours a day you work 😂🤣.
Biologics changed my life. I'm enjoying life again, I have a social life and the fatigue has gone. Still a bit achy, but nothing major.
Sounds wonderful, you have your life back! I too used to work extremely hard, being an area manager with a workforce of 150 plus, I couldn’t imagine doing that nowadays, which disappoints me very much as after 42years working my guts out I expected to travel the world & enjoy my retirement.. your messages are giving me the inspiration to tackle my RA team for a meds review.. thank you so much 😘
Hubby & I have just been discussing it.. when it comes down to not being able to get on a Plane is to the Algarve it’s getting unacceptable... thank you so much for your replies xx💕
Wow, we had an apartment in Salgados for 13 years! I know Guia very well! I wouldn’t buy in Portugal again though, it’s very corrupt, the Financas (tax office) owes us thousands & we will never get it back that’s why we decided enough is enough! Got sick of spending two days every holiday sorting their mistakes etc.. anyways, been to see my RN will update a new post xx
Cwendyn please please be very careful...there is a two stage taxation system..if you’re resident your IMI goes to local Financas & is the same as the Portuguese pay...however, if like us you are British & own a property & not resident your yearly IMI is set by Lisbon HQ & they LOAD it! Talking 3-6 times more! There is a market value & a commercial value on your property & they will stick a ridiculous value on it so they can justify it & charge more. You are also charged 12 months behind, when you buy you could fall foul of this & end up paying for last years & the year before if you buy before January the 1st.. its a real crock of the proverbial this is why we sold 2 years ago .. hope this helps, we long term rent now instead & it’s wonderful...xx
Wow! Thank you for telling me - I had no idea! Long term rental sounds like a plan. I was considering moving as a resident, but there's uncertainty around biologic meds and I can't risk everything going into reverse.
Just a quick question, did your CRP have to go over 20 to get put on biologics? Did you go privately to obtain them? I’m going to have to go out of area I think xxx
Its also the number of effected joints. I believe theyre intending to lower the threshold. I was slightly under. My consultant said, you have far too many years ahead of you, said your thumb hurts doesnt it? I nodded and he added it. We both knew that was a fib. Im very grateful to him.
Hi Sorry to butt in , but my CRP makers are always low, pos for RA factor and that's high, I am getting put on biologics because of the damage its doing to my joints
it shows in xrays and scans and you can see it but it doesn't show in bloods
Thank you mine has gone up the Max was 13 3 times before but all I get from my consultant is “bloods are fine medication is adequate” yadda yadda like a robot. That’s put my mind at rest a bit! X
Hi, just to say I took your advice & kept pushing for a change to my meds.. been told yesterday depending on tests being ok I’m going to go on biologics within next 6-8 weeks! I’ll let you know how it goes.. positive thoughts now xx😘
Hi all! This is my first time posting so please bare with... I was diagnosed with very aggressive RA four years ago, at the age of 55. I have other bone and joint issues which am sure clouded the issue for years. I have RA in hands, feet, knees, shoulders, jaw and wrists and have tried all normal meds but nothing would control it. Now on Baracitinib since last August and have felt a general improvement, although, I still get flair ups from time to time.
BUT - and it's a big BUT - nothing, and I mean nothing, I have taken has managed to deal with the fatigue side of things. My RA consultant has admitted to me that whilst all meds are designed to tackle the inflammation and pain side of the disease, none have so far proved to be a solution for fatigue (as it presents itself as part of the disease and not a by-product of dealing with the disease).
Also, we are all different and so it is important to remember that we will all be struck differently by the symptoms and aspects of the disease. What may be a wonder drug for one may turn out to be the equivalent of taking Smarties to another.
It is a real issue and for me the fatigue this horrible, horrible disease produces, is as disabling and debilitating as the pain.
You have my heartfelt sympathy darling! Sorry there is no real answer for you (I wish there was).
Take care. Pace yourself, don't fight the need for rest, take to your care team (and be firm if you feel fobbed off) and remember there are always loads of us out there willing to support each other.
Thank you for putting it so eloquently, yes the fatique is sometimes more debilitating than the pain as you can psyche yourself out of feeling the pain. Pity we can’t all teach our brain to override fatique xx💕
Hi juliachoo I to suffer from RA&OA I have had to knee replacements in three years it’s hard I also take methotrexate & sulphaslazine ask ur doctor for RAvLO plasters 700mg that will help u all the best from jimbo
Nothing positive to say, only that the fatigue is part of RA. It can be so frustrating when ‘the batteries run out’! Which is just how I feel, I’m like the Duracell bunny, ok for a time and then no energy. I’m sure my batteries are not Duracell but more like ones from a pound store!!!! I have to be so thankful, I am in a better position than so many of you. Sending love to you all, though I wish it was Energy!!!!
I feel for you Juliachoo, like almost all of us we have battled fatigue. Maybe you just do too much in one go. I always made sure that I had rest periods during the day. Even just ten minutes here and there helped tremendously. All the best.
Haha - oh judge_benn_hinn you are so right!! Think most of us have felt like punching someone in our care team from time to time!! Sadly, most of don't have the energy to do so!!
Omg ... . Same x the fatigue is crippling. I work 30 hrs a week & have not had more than 2 weeks without sick leave all of 2019 so far.
It's so tired (excuse the pun!) being told by the medics that "fatigue" is to be "expected". What???? The lowest form of QOL is now yours- deal with it???!!
I know this sounds trite but it really is one day at a time sometimes with RA. Small wins, mindfulness & a sense of humour whilst not a cure, do help enormously- as do tea books & cats(!!) x
Hugs to anyone having a tough RA time (which tbh is everyday with RA!😔)
Omg!!! That is so true- memories of the crushing fatigue disappear every time- until the inevitable crash. I don't know about you but I never seem to learn!! Have a good day x
I agree with everything people have replied to you Juliachoo. Just two comments:
Ask for a Biologic or another medicine and ask the Consultant to explain them to you.
Ask your Consultant to review your folic acid intake - 6 tablets seems a huge dose.
Maybe three comments. Ask your Rheumatology Department for an earlier appointment if your next appointment is some way off. Write down everything you wish to ask at the appointment and be precise, they should be able to ease your symptoms.
It's a funny thing the tiredness, even though I have RA for over 20 years, I still quiz myself about the tiredness. It's like Groundhog day!
I wake up and feel weak and exhausted. I wonder why I think to myself...and then I remember I have RA. I think maybe I have done something wrong or maybe something else is wrong with me. Two hours into the morning my body wakes up and I get stuck into my chores...come 2pm I am sore and have burning joints....every day is about the same ...yet every day I expect my old well self to return. It's like having a flu that never goes away and I have found a lot of comfort from this site.
Yes I sometimes think the tiredness is worse than the pain and when the tiredness comes it's like being hit by a bus...It's sudden.
Just to give you a little hope Ruth....I am much better than when I first got it. There seems to be an acute stage for some and then it settles down to chronic with flareups. My first three yrs at least were the worst. I now have ...windows of wellness...during the day. About two hours at a time or a little more. X Rosie
I am much better than I was. I collapsed and was bed bound unable to hardly move then in wheel chair etc etc so im much better than I was. I had yet more injections into some joints about a month ago, im on 3 demards, 6hrly pain relief and daily steroids plus all the usual ie folic etc still need sticks but really am much improved, but as you have had this for so long and seem similar to me I was interested to read as hoped I would be much improved with possibly the odd flare in the future. However we all know we react differently and im gratefull, as i expect you are, to now be able to function for few hours a day. It is so comforting not to feel the only one. Thank you for your reply. I wish you well. 🙂
Thank you for your well wishes Ruth. Like you I have a wheelchair on standby and yes it's good to feel grateful for the well hours. This disease takes a lot of courage and it really helps to connect to others.
Golly that was quick. I dont have my own wheel chair we borrowed one then.
Yes I really do wish you well and admire you. Having this disease is challenging enough but I was 58 when it landed. I really feel for you as you have had it for so long. Take care. 🙂
I used to think it was just me being a whimp. I don't work now but I do volunteer three days a week and am absolutely shattered by the end of the day. I really need to find a job but worry I won't manage.
I hope you get some relief sorted soon and find some energy.
I know the feeling well. I have suffered from chronic fatigue for some time. I have spoken to a couple of GP's and a few Consultants about it. The standard response seems to be "Well, you have RA, Type 1, Polymyalgia, COPD, and Heart Disease. Of course you suffer from fatigue. Get used to it". Not really what I want to hear. I don't expect miracle cures but a bit of advice and support would be nice.
Ah, that's different. Many here have tried CBD oil & some have had benefit of varying degrees, varying doses & severity of pain or anxiety though I suppose could make a difference. Not tried it myself yet, although have tried cannabis in chocolate, had no effect.
RA doctor told me I have chronic illness anaemia. Every time I saw specialist I told them how very tired I am & was fobbed off until it was eventually told about the chronic illness anaemia. Still very tired!!! And RA good at moment, on a lot of medication.
Dear, I became the doctor of my self, and advice you to do the same; no body can understand your body more than you; I had extreme fatigue with and without injections such Humera and other type that I do not remember its name with the Methotrexate; finally I decided to start fasting and testing the food one by one until I figured out what really makes me so sick; I found out that the meat fat, the ginger, and all kinds of bread I buy. I eat only what I bake at home with organic yeast and whole wheat flour (only once or twice/a week).
Grapes and yogurt worked like cortisone; I eat the grapes early morning and each time I have empty stomach during the day. So just listen to your body and eat the minimum amount of food. The secret behind the relief of the fatigue was not eating carbohydrates during the day at all and avoiding all the sugar by all its kinds.
Humira has really helped me. The fatigue is the surest sign that I am in a flare...not joint pain and swelling....the tiredness that is just overwhelming. It's funny that doctors don't even ask about it. They just look at my joints!
Hi Julia, totally with you on the fatigue. Mine’s improved on bios from what it was at start but never disappeared. I still expect it to disappear like Rosie & crash & burn about one day a week 🙁, probably because i’ve done too much for this disease tho’ not enough for me 😉. Posted above article not because I think you’re ‘moderate’ but because it sounds like they may be rolling them out to wider range of patients; I think qualifiers for them are a bit subjective anyway. Good luck finding something that controls it better x
Hi Kerensa21 thank you & I did read that article as I am a member of NRAS. Looked at my last consultant letter 7 Sept 2018 where it stated VAS 55 not sure this is same as a DAS score bu interesting that I also should have seen consultant 5th March as down for every 6 months.
Update, just spoken to my RN & got an appointment for Friday as really struggling with my knees, feet & hands plus the ever present fatique xx
Sorry, thought you might have 😊 I saw a lovely registrar & wasn’t expecting biosimilars but more dmards. She was so thorough. I hope you get similar: don’t play anything down & stress how miserable it’s making you (know that feeling) really good luck with improvement xxx
Thank you will post on here, follow me if you can doesn’t work on yours, are you fairly new to RA? I’m only 3 years diagnosed as of last Christmas. Thanks for your help 😘..
No, nearly 2 years diagnosed but may have had it longer with hindsight. It’s probably me, left everything switched off in settings 🙄, i’ll follow yours with interest, here’s hoping for you 🤞x
Hi I feel for you all. Im fed up of feeling absolutely wiped out! I’ve was diagnosed with RA 4 years ago & recognising that the fatigue is getting worse. I work full time & want to progress in my career but sometimes feel I’m going 3 steps forward then 3 back due to my energy levels. I also have 2 beautiful granddaughters & try to help out with babysitting during some evenings & weekends but get so exhausted & frustrated with myself because I want to do so much but this awful disease is getting in my way. I’m going to Spain soon & dreading the sun as I my skin constantly tingles, a rash develops & im wiped out & miserable.
On a positive note...🤔 I have a long weekend off work so hopefully have a good recharge before work Tuesday.
Glad it’s not just me - if you know what I mean - I started thinking maybe it was chronic fatigue syndrome this weekend when I found it virtually impossible to get off the sofa (and of course worrying it was just me being lazy). I still dont have a definite diagnosis of RA, but they are slowly ruling everything else out so it helpful to see posts that I can identify with. Thanks. R
I hope a firm diagnosis happens soon for you Puffa. Why oh why are we so hard on ourselves when we get ill. It's such a confusing time isn't it? I had a bad accident 9 months ago and because of a large wound on leg I had to go off methotrexate for the whole 9 months. 3 weeks ago I felt drunk and weak and very unwell and wondered too why I was being so lazy. The blood results came back last week...my RH factor is very high. So now I know I must Rest! The RA has returned....of course.
Please don't feel bad about spending more time on the sofa....your body is telling you what to do. I know it's frustrating but resting is great for RECOVERY. Do hope it goes well for you.
Ps. I'm in bed typing this and saying a prayer for you. X Rosie
Thanks Rosie, we have acquired a puppy this week so any chance of sleep has gone out the window, I have no idea why I agreed to it but hopefully walking her will help eventually. I hoe you are having a good day ❤️
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