Tiredness - can anyone suggest ways to help with tiredness caused by rheumatoid arthritis?

[kormacurry]

My drugs are controlling the inflamation caused by RA, but I am still very tired, not able to do the amount I used to do. Any ideas other than pacing myself? Any good vitamins etc? thanks

[rmros]

I have found getting some early morning light really beneficial. It's one of the hardest things to do because of course early morning is often when we least feel able to move. I have to force myself and often fail. But I know even a short walk first thing can really improve my energy levels for the rest of the day.

[kormacurry in reply to rmros]

Thanks for your suggestion, I will try it.

[MsEm in reply to kormacurry]

I agree with rmros. You don't always think you can manage that early walk, but once you get moving things do generally start to perk up. For me, my dogs keep me going and I have to walk them so that helps. Good luck and keep going! 😊

[Deeb1764]

that’s the million dollar question if anyone could answer it. Fatigue and RA go hand in hand and 4 years later it’s still my biggest issue.

Don’t over do it and PACE is the only answer I have 🥰

[kormacurry in reply to Deeb1764]

Thank you, so disappointing for us all!

[Mmrr]

Fatigue is an eternal problem many of us with RA. Pacing and trying to get a reasonable nights sleep are important. I find going to bed earlier is better than sleeping later in the morning.

[Fruitandnutcase in reply to Mmrr]

I also go to bed early, I also find I sleep for longer and much better when I go to bed early. I have no idea why though.

We’ve just had people to stay and I’ve not been able to go as early as normal (still a lot earlier than our guests normally go - they are night owls) and after five days of that I really feel tired and my body aches. Well that plus the fact we were on the go all day every day.

[kormacurry in reply to Fruitandnutcase]

Hi Mmrr and fruit and nutcase, I fall asleep if I stay up after about 7.30pm, so off to bed in a minute. I too find it a challenge when we have people to stay - but am going to reduce that frequency now as I crash when they go.... many thanks for your support.

[Mmrr in reply to kormacurry]

I have a few 'rules'

I don't cook for anyone, a cup of tea / coffee / biscuit I can provide.

I meet people for lunch / afternoon tea, but not breakfast or dinner.

No one is permitted to stay over, there a few hotels around.

My aunt and uncle are visiting me soon and offered to bring lunch with them, I said yes, thankyou, that would be good. They replied, happy to help.

It can be difficult at first to say no and set boundaries, but most people are great. Those that are not, I don't see anymore.

[kormacurry in reply to Mmrr]

very good, I will copy your approach, good luck

[tyncwmmarchhywel in reply to kormacurry]

Hi, pacing is a must, Mmrr has got it lOO per cent. Take care.

[kormacurry in reply to tyncwmmarchhywel]

So many great comments to give support, thanks to you all

[medway-lady]

Are you sure it’s down to RA a lot of conditions cause tiredness ie thyroid, B12 definancy so before you assume it’s RA ask your GP for a few simple blood tests. Honestly with RA come some other stuff especially if it’s sero positive. So talk to your GP first.

[kormacurry in reply to medway-lady]

Hi, thanks for your comment, blood tests have ruled out other things already. Best wishes

[Amnesiac3637]

Afraid it goes with the territory. There are so many aspects to RA which can make fatigue a biggie - stress, lack of good quality sleep, poor diet, blah and then there’s RA itself which while your body is fighting inflammation, even on a low level, it causes fatigue like nobody who hasn’t got it can appreciate!

I’ve had it for 34 years and still haven’t cracked it and I’m afraid, that until science comes up with the goods we’re sort of stuck with it in varying degrees. Like everybody’s said pacing yourself and saying no to demands from others is probably the way to survive. Eat a healthy diet for all your vitamin needs and get out in the sun for Vit D. Good luck.

[kormacurry in reply to Amnesiac3637]

Hi, thanks for this, sounds like good advice, but disappointing we don't have anything else, best wishes

[tyncwmmarchhywel in reply to Amnesiac3637]

Very wise words.

[MadBunny]

As Medway Lady says, it could be something else. Well worth getting it checked. I was found to be B12 deficient so I now have injections of it every 12 weeks.

I too have been suffering from chronic fatigue which started a few months ago, although my meds are controlling the RA. I have a GP appointment to discuss possible causes, including thyroid.

[medway-lady in reply to MadBunny]

I also have the injections and thyroxine.

[kormacurry in reply to MadBunny]

Hi, these are ruled out, but thanks for taking the time to respond. Best wishes

[MadBunny in reply to kormacurry]

You're welcome. I've been absolutely exhausted today. Just about managed to do a bit of shopping . I'll be glad when I see the gp.

[JenniferW]

Ask your GP to go through all the vitamin tests that have been run, especially the extra ones done by the hospital and check they haven't forgotten to tell you about things like low vitamin D. Also maybe ask them to retest for thyroid problems in case your immune system has started to attack your thyroid since you were initially diagnosed, sadly immune problems often come in groups.

Vitamin levels have a wide range for what is considered normal in the UK, if you are at the low end of range for vitamin D, B12 or iron, then you probably would feel better for supplementing.

(Caveat, do not supplement iron until your GP does a full iron panel, low ferritin showing in the initial test they will have done when you told them you feel tired does not necessarily indicate low iron levels, it's a bit complicated).

[kormacurry in reply to JenniferW]

hi, these have been tested regularly, but thanks for the ideas, I will chase the GP for more vitamin range tests. Best wishes

[Annscottie]

You might find this helpful too

nras.org.uk/product/fatigue...

[kormacurry in reply to Annscottie]

Hi, thanks for the link, will take a look, best wishes

[J1707-]

Fatigue is the invisible symptom and after 6 years still the worst symptom. Just because your RA seams to be controlled doesn’t mean it’s not still bubbling away. MTX caused me to have more fatigue at higher levels. I’m on 10mg now which doesn’t turn me into Rip Van Winkle . I’m also on 5 mg of folic acid 6 days a week. Just had my first Rituximab infusion and praying this the drug for me. I would talk to your clinic they maybe able to help or NRAS helpline

[kormacurry in reply to J1707-]

Hi, interesting suggestion. The RA clinic said to ask the NRAS community for ideas as the consultant didn't have any ideas! My local support group doesn't seem to be meeting anymore, but I will call the NRAS helpline tomorrow. Many thanks

[AgedCrone]

I think everyone has to work through this problem for themself. …there is no one answer….so do take time to note what really exhausts you. …..& try to avoid it.

At first I found refusing invitations very hard……because I wanted to join in….but don’t despair…work on accepting you have RA & determine that you will come to terms with it….don’t be afraid to say “I’m a bit tired today…let’s do XYZ tomorrow”. …most people will understand…& if they don’t- just move on…..but accepting not fighting the condition really helps.

[kormacurry]

thank you to you and all the others who have sent me ideas, you are all so supportive and helpful despite there being no one easy answer. Best wishes

[kormacurry]

Thanks for this, being kind to myself has always been a challenge, but it seems it is becoming something of a priority where tiredness is impacting on functioning - best wishes

[Vixen2]

Hey Kormacurry. I’ve had RA since i was 21. (52 now). I totally agree with how you feel about fatigue. I have an infusion every 6 weeks which is fabulous. But i still get tired so easily. I’m going through the menop at the mo. So i’m finding it hard to motivate myself. I used to enjoy going for walks. I live in Covent Garden & the crowds are so frustrating. Hard to get people out of the way! I had a massive flare up last yr. I felt awful. Had to walk to Holborn for my steroids. I was using a stick. I had to shout at some tourists to get out of the way. I’m sorry. But pain, fatigue & crowds do not mix well. I wish i lived in a field of cows sometimes!! Chewing the cudd. But i don’t. If i do have a walk. I bore everyone with this. There’s nothing like feeling good you’ve achieved something. (Even if you’ve just hoovered or done the washing up. Then getting into bed with a big steaming hot bowl of soup & a lovely cuppa. Getting a really good comedy helps me. My tablet is my saviour!!! Good luck x

[kormacurry in reply to Vixen2]

Hi Vixen2, thanks for your message, what is the infusion? I presume I am not eligible as one hasn't been mentioned to me so far at the rheumatology clinic. Good luck with your walking and carry on trying!

[Vixen2 in reply to kormacurry]

Hi Kormacurry. I’ve been having an Infliximab infusion for the last 20yrs. When i was first diagnosed i was on alot of Sulphasalazine, Indocide, Co-Dydramol, Co-Codamol painkillers. Plus Steroids. I was virtually bedridden at 21. Plus i developed Iritis. Inflammation in the eyes. Which involves having steroid injections in the eyes. I had 2 catarracts removed. Plus lots of other procedures. Which then led to Glaucoma. High pressure in the eyes. I go to 2 different eye clinics at Moorfields Eye Hospital. Great staff. But i can’t stand the waiting!!!!!!!

I’m just so grateful for the NHS. My treatmemt costs £10,000 per yr! 100yrs ago. I would defo b bedridden. I can’t even think about that! Anyway. Thanks for replying & hope you find a way to become more energetic. But the biggest rule is. Don’t overdo it. Pace yourself & reward yourself with the odd CHOCOLATE ECLAIR…. X

[kormacurry in reply to Vixen2]

the chocolate eclair is a must! thanks so much, good luck

[Runrig01]

My rheumatologist says that fatigue is the most difficult symptom for them to manage. My Vit B always sat at the botttom of the range, despite supplementing with tablets. I then discovered PPIs like Omeprazole prevent absorption of Vit B. So I switched to sublingual, and noticed a difference in fatigue. My next blood tests showed it was now at the top of the range, so it was clearly working.

[kormacurry in reply to Runrig01]

Hi, thats really useful to know about omeprazole as I am on it too - but so far vit b injections have taken me to the middle of the vit b range. Best wishes

[Runrig01 in reply to kormacurry]

if your having Vit B by injections, you should be fine, as it’s not relying on the stomach for absorption 👍

[tyncwmmarchhywel in reply to Runrig01]

Hi, what is Sublingual please.

[oldtimer2 in reply to tyncwmmarchhywel]

under the tongue

[Runrig01 in reply to tyncwmmarchhywel]

as old timer 2 says, it’s when you put it under the tongue to dissolve. So it’s absorbed very quickly avoiding the stomach.

[Hidden in reply to Runrig01]

Didn’t know that about Omeprazole. Just started on ‘extra strength’ B12, so hopefully that will counteract it…

[MW07]

Hi, thanks for your message and all the replies from various people. I struggle with fatigue, have done for years, constant low level fatigue with intermittent bad periods of severe fatigue. I am interested to hear people say they have fatigue despite their RA disease / inflammation being under control - I have a new rheumatology consultant and he said I should not have the levels of fatigue I have if my inflammation levels are fine. I am very confused about this, because GP tests have not found any other issues. Does anyone have further information about this?

In terms of coping, for me it is rest, pacing work as much as possible, getting things done in the morning, gentle exercise (walking), healthy diet, good sleep habits. Work is the biggest issue, because managers cannot see the illness and do not understand or cater sufficiently for its impact - I am in battle with my employer about this at the moment. I would advise read up as much as possible about your disability rights.

[kormacurry in reply to MW07]

Hi, I left my employment and retired a few months early as I couldn't cope with the two long days a week - not long by anyone else's standards. I fully understand the issue of it being a hidden disability and the issues that arise around that. My daughter has ME and this tiredness is so similar to what she has to cope with - and employers and the benefits system just do not get it. Good luck

[MW07 in reply to kormacurry]

Thank you. It's a relief talking to others who understand and face the same issues.It is also very interesting what you say about your daughter having ME and how your fatigue symptoms are similar. I have looked into ME and recognised all of the symptoms.

[kormacurry in reply to MW07]

yes, I think autoimmune diseases run in families.... rather sad

[Hidden in reply to MW07]

I was given an additional Fibromyalgia diagnosis because my fatigue levels were so completely insane…

Amitriptyline (20mg before 7pm) has helped enormously as I have refreshed sleep now as I sleep more soundly.

Also: equalityhumanrights.com/en/...

disabilityrightsuk.org/

Prior to my RA diagnosis I wondered if I had CFS… my fatigue started several years beforehand…

My fatigue was dismissed because I was too young🤦🏻‍♀️

[MW07 in reply to Hidden]

Hello, thank you for that information. The replies now make me resolved to push harder for a diagnosis and support at work. Very interesting, if dismayed, that your symptoms were initially dismissed. I saw a new rheum condultant recently and he also completely dismissed my symptoms. Will follow up your link, thanks.

[Hidden in reply to MW07]

Yes. You aren’t allowed to be ill in your 30s apparently 🙄.

Have a look at these so you don’t feel so isolated with it all:

chronicillnessinclusion.org...

Knowledge is your new friend. We live in a world where we have to fight for everything 🤬.

Read all the NRAS leaflets/ website too. Good luck x

[MW07 in reply to Hidden]

Thank you! I am going to look at the link and info right now.

[Jackie1947]

Have you had a recent blood test? Low iron can make you tired. I recently had a routine test for all vitimin levels.I take prescribed multi vitamins and feel better for them

[kormacurry in reply to Jackie1947]

Yes thanks, the bloods were fine except high for folic acid as I had continued to take 6xper week as no one had told me to stop when I changed from methotrexate, to lufluonide and now to imraldi biologic. However, I am more tired without the folic acid, so will raise that with the GP soon. Good luck

[Gilliancheche]

So reassuring to read all these responses. I too am struggling with fatigue and often wonder if I will ever be able to keep up with the rest of my family. I have always been the one others kept asking to slow down. B12, vitamin D, pacing myself still waiting for the answer....

[kormacurry in reply to Gilliancheche]

I wish you all the best, take care

[PurpleSE]

I have found a sleep routine helpful (although tricky with pain and other disruptions). I go to bed and wake up at the same time every day. When I wake I sit on the edge of the bed and take 15 belly breaths and drink a glass of room temperature water. I then try to get 15 mins of sunlight either outside or by an open window and move around/ hobble/ walk around the garden/ house. I find the deep breathing helps ease morning stiffness too.

[kormacurry in reply to PurpleSE]

Thanks for these tips, good luck

[Stills]

note my diagnosis is Stills Disease which for me manifests as RD. Diagnosis was aged 17, now 61 and I’ve found over the decades that pacing is my only option. Hoovering followed by 60 minutes rest, my only solution is to apply to all tasks and repeat………. Until a magic cure is found.

[kormacurry in reply to Stills]

oh, sorry to hear that, take care, best wishes

[RootsToots]

I'm the same but have found a good vitamin (I buy pharmaton) and good quality breakfast cereal that's high in energy ( alpen or a new one I found called Fuel ) does help.

[kormacurry in reply to RootsToots]

Hi thanks for the tips, will look into the vitamin, anything that helps is always welcome, best wishes

[cyberbarn]

I remember reading on the James Lind Alliance website (I can't find it now) that researchers thought that pain was the main concern for RA patients. Until they started talking to them and found that for many, they can cope with the pain, it is the fatigue that causes the most problems. At that point the researchers, though surprised, thought they should look into fatigue too.

I guess we are still waiting for the results! 😂

[kormacurry in reply to cyberbarn]

here here! take care

[CagneysMum]

My RA is under good control at the moment but I still get tired more easily and some days just feel wiped out. Just another little gift from RA …. But so much better than being in pain 👍 I’ve just learned to roll with it as far as possible 🤷‍♀️

[Sapphire1701]

hi.. sadly I can’t really offer any useful tips but just to say I completely empathise. I’m a year in from RA diagnosis and although my inflammation and pain have improved, the fatigue is just so debilitating. It’s also the hardest for others to understand and similarly my rheumy team don’t really seem interested in the fatigue. Almost like I’m making it up!

Energy management is key and trying really hard to be kind to myself and not beat myself up. I can’t work full time any longer or do half the things I used to do.. at 45, it’s very tough. Well very tough at any age.

My dr has been supportive and suggests fluctuating hormones can play a key part. I’m due for all the vit / iron tests too and also have really low blood pressure which adds to the tiredness.

So I’m sorry I can’t offer more help, but just know you are not alone in this and for me, like many here, the fatigue is just so utterly debilitating. Yesterday I literally slept 3 x during the day, as well as a decent nights sleep.. no one really understands, but we do on here.

So sending you my thoughts and wishes.

Best x

[Hidden in reply to Sapphire1701]

Appreciate what you are saying. I received my RA diagnosis at 42. I had been going to the GP for several years prior to that trying to explain my levels of fatigue, but nothing was ever done…..

[kormacurry in reply to Sapphire1701]

Sorry its so bad for you, thinking of you, take care

[Angjoplin]

I too can empathise. I dream of winning the lottery so I don't have to work. Holding out for the mortgage been paid of so I can cut down my hours. I find the fatigue is dismissed by the health system and misunderstood by friends and family.

[JenHasRA in reply to Angjoplin]

Me too. Its BS. I HAPPEN to have a doctor that has an autoimmune disease herself. She is a miracle in my life. It's a good dream!!!! I am about ready to do a program called Debt Free 4 Life. There are probably a lot like it out there. I think it will help me pay my mortgage off 7 years early. Hang in there!!!

[kormacurry in reply to Angjoplin]

YEs, seems so common that people don't understand, take care

[kormacurry in reply to Angjoplin]

ohh, thinking of you, take care

[Angels54]

Hi , are you on steroids? is your appetite ok .

[kormacurry in reply to Angels54]

hi, no, steroids were stopped a while ago, not eating a lot as I have gastritis as well.... thanks

[JenHasRA]

Hi Kormacurry. It takes a lot for me to fight the fatigue. I take 100-200 mg of Rx Modafinil when I wake up. It's a pill they give to narcoleptics and soldiers when they have to stay awake. I then drink an Axio. Look here or find something similar if that appeals to you: dkkim.lifevantage.com/us-en.... I eat leafy greens with every meal and juice celery and greens every morning. We have no enzymes left in our bank due to our age and disease. Your body can't do anything with any supplement or food item if it can't digest it. Even if your levels are good - your body needs enzymes use those levels. Don't eat animal protein of any kind. Figure it out - if I could - you can!!!! At night I take low dose Rx Naltrexone (LDN). Do a search on LDN and RA. My doctor takes it to help manager her autoimmune disease. I make sure I am back home by 3 pm so I don't turn into a pumpkin. Bikram Yoga gives you a bump up with breathing and circulation. It helps me best in the morning!! I live in the USA - we still have access to Rx medication right now. I hope you do too. If you want to try any treatments you learn about - anywhere - anytime, I encourage you to go to your doctor and tell them "I have to be awake and function during my day. It is necessary. I want to try ___ medications/treatments." It's like they are fine with you being not fine but alive. It's a lot to keep up with and I can't do it perfectly every day. It is a humbling disease. I pray to God and ask Him for what I need, for a way my needs can be met. I try to be thankful. And be ok with crying when I do. Sending you love - it's the short end of the stick - but we must keep on keeping on. : )

[kormacurry in reply to JenHasRA]

Hi, thanks for sharing your situation and information, I will take a look. I have been a lifelong vegetarian, just need to have the strength to bother to prepare the food to eat! Take care

[Happy5 in reply to kormacurry]

I empathise about needing the strength and motivation to prepare the food as you say.

[Hidden]

I am solar powered. A house in the Caribbean would work wonders…

Fatigue has been my biggest issue ☹️. It has taken me 12 years to achieve ‘pace and rest’. One day on one day off helps me. I also medically retired, cut out stress (job/money/people) and take daily supplements (Women 50+). I also cut out gluten and processed foods / ready meals.

Aim for the best you can be within your own particular confines. That’s all we can do really…

[kormacurry in reply to Hidden]

Thank you, sounds like wise advice, especially one day on one day off, thanks and take care

[Happy5]

Your post made me laugh , as you can see from the replies if any of us find the answer we'll bottle and sell it making us some money.😉😊

It is a hideous aspect of the condition we all have to make allowance for. All the best.

[kormacurry in reply to Happy5]

you are right, thanks so much

[Green230461]

Addition vitamin D 3 tablets help me a great deal🌺

[kormacurry in reply to Green230461]

Great to hear that, thanks for the support