Living with tiredness

[Curcubeu]

Any tips for fighting this constant tiredness? It is horrible 😢 😞 😫 Please help

Sending hugs

[Fruitandnutcase]

Well, as well as whatever you are taking for your RA I’d say make sure your vitamins and minerals are well up in their ranges - D3, B12, folates and ferritin, maybe check out your thyroid, make sure your diet is full of nourishing food with lots of veggies, avoid sugary snacks, fast food and fizzy drinks, caffeine and alcohol, get some sort of exercise daily whether it’s a walk, yoga or meditation and get enough sleep.

[helenlw7 in reply to Fruitandnutcase]

I agree with the B12. I had terrible fatigue about 4 years ago. More than the not RA fatigue. I’d stopped working and led a quiet life, but when I mentioned it to my rheumatologist she tested me for B12 deficiency, and it was very low. Since then I’ve been on an 8 weekly cycle of injections and feel much better.

[Hope164 in reply to Fruitandnutcase]

Hi I suffered many many years being fatigued. I had to drop one of my injections three weeks before my op. I realised during that time I no longer felt fatigued! I realised then it was being caused by this injection

Since I dropped I still get tired, but enjoy my life since .

Please check your meds 🥰

[Jackie1947]

Rest when you can. Don't push yourself and keep up your fluids. I call them my dippy days. Came home from a holiday last Wednesday and I'm shattered. It was a relaxing holiday 🤷

[AgedCrone]

Fatigue is a constant problem for some with RA as it progresses & really every one deals with it differently.

I honestly think all we can do is talk to our rheumy team & see what they advise. ATM,I’m thinking maybe a change of a Dmard or a Biologic may help….but that is very subjective view…that a change somewhere, somehow may help.

But like so much with .RA….acceptance & patience seems the way to go.

[Madmusiclover]

Take a look at the NRAS booklet ‘Fatigue Matters’.

[Brushwork]

I agree with most other comments.

Healthily diet, avoid sugar and processed food. Lots of vitamin supplements, Omega 3, vitamin D included. Some exercise every day….. and then just accept that you will have days when you just have to sleep/rest. It is part of RA and even when it’s fairly well controlled, you will have fatigue sometimes.

Acceptance is difficult, we tend to fight, but just accepting that your body is going to need extra care to help it… can be very positive

[sylvi]

Snding hugs as i know how it feels darling. xxxx

[Whezziewhoozie]

as people have suggested - get your bloods checked. I was low in B12 and much better now I have corrected it.

At one point I was really struggling and I had CBT therapy. We made a plan to organise my life in to red, yellow and green activities. I was in a massive panic as was due to go on holiday with my husband and was worried I wouldn’t be able to keep up! I didn’t want to let him down. It also worked for my home life.

Red activities were things like - going out for dinner, taking the dog for a walk. Exploring the town when on holiday.

green activities were rest periods - either at home or lying by the pool on holiday

Yellow were things that you just have to do like working or showering etc.

I then learnt to plan my days that if there was a red activity in the evening - such as a friends birthday party, I would make sure there was a green activity before and after where I could.

I spoke to my husband and we had a plan on holiday that if we went out in the morning, we would come back for the afternoon to rest and then out for dinner etc.

it worked and still does work really well for me. I have almost conditioned myself that if we have a social event I make sure to rest before and after. If that’s not possible as I am working etc or doing a yellow activity that you can’t shy away from, I give myself a break as if I get tired as I know I have not rested. I was at one point getting very frustrated with being tired all the time. It also really helps mentally. Going in to big activities knowing you are well rested and have another rest period coming up somehow helps me to summon the energy to enjoy it.

It’s not fool proof for sure and I don’t do it as rigidly as I did when I first started it but have somehow just adapted it in to my way of life.

Hope that helps

[Kati66 in reply to Whezziewhoozie]

That’s a great technique that your CBT therapist taught you. Thanks for sharing as many of us struggle with fatigue. I try to plan for rest days when I’m doing something I know will drain me. We went to a wedding two weeks ago and I knew the following day would be a bed day. I was completely shattered after but it was a lovely wedding.

[Curcubeu in reply to Whezziewhoozie]

This is amazing. Thank you

[Madmusiclover in reply to Whezziewhoozie]

I pencil in recovery days after big things. Today being one. And retime the metho if necessary by a day either way so I’m not wiped on a day I have some sort of commitment.

[Fluffontoast in reply to Whezziewhoozie]

Brilliant advice, thanks

[TiggerMum]

I definitely agree with the other suggestions of getting your bloods checked. I’m currently on iron tablets due to iron deficiency and I feel some much better. I had to get some other checks to see there wasn’t anything sinister causing blood loss, but I’ve read that iron deficiency and anaemia are really common with autoimmune conditions.

[WillowsMother]

I also agree with the helpful comments here about vitamins, iron levels, diet, pacing yourself, exercise etc. There were two other things I had to look at to sort out my perpetual tiredness. One was my sleep quality - it sounds obvious, but make sure you get good quality, restful sleep. I have a fitbit watch which tells me how long I sleep for, and gives me a sleep score each night to say how restful my night was. I took melatonin at night for a while which really helped me get to sleep and stay asleep. Now I take magnesium at night, which also helps with sleep.The second thing I did for myself, and the thing that I think really sorted me out, was to start hrt. That's been amazing. In particular, yhe progesterone taken at night makes me sleep like a baby and wake refreshed. The oestrogen gel has sorted a lot of exhausting symptoms, including hot flushes and helping with my RA joint pain. I also use testosterone transdermal cream *private prescription only, but worth every oenny!) which has given me back my zest for life. I have so much more energy now - it's amazing! I know hrt isn't for everyone, but I noticed in your bio you're interested in women's health, so I thought I'd mention it as it relates to your question. Best of luck with your search for a solution!

[Passionflower]

absolutely tiredness is one of the many things that comes with RA I’ve had it for years, know your limitations all the best

[Green230461]

My tiredness was exaserbated by low Vitamin D. My GP suggested daily tablets for a month and I started to feel much better. Now I buy them over the counter Also low iron comes with RA so speak to your doc. Good luck 😉

[Tired-fed-up]

I spent the whole day yesterday in and out of sleep. I really struggle with knowing my limits. If I have a successful busy day I feel so happy with myself and then the next day…crash!! If you have a partner maybe ask them to remind you to rest? I’m single and I don’t listen to myself 😂

[Curcubeu in reply to Tired-fed-up]

Bless, yeah, unfortunately my partner is not very supportive 😔. I know what you mean, when something needs to be done, it needs to be done, but then the price we pay after it's scary. I even go into panic attacks when I cross the limit, and sadly life doesn't give us options all the time...I had to empty my mum's flat in 3 days, no alternative and 1 week after still feeling the overstretching.

Xx

[stbernhard]

Hi Curcubeu, I had a prolonged period of abject tiredness and low energy. This was to a great extent caused by very low sodium levels and also low iron. I drank too much fluid! Reduction of fluid to 1.5 litres a day made a huge difference.

[stbernhard]

Maybe a blood test to check your sodium levels might be an idea. It could be our companion, fatigue!?

I hope you find a solution soon, because you are going through something horrible.

[Fluffontoast]

Tiredness, that was me this morning! Seems to come in waves. Can't really add to the advice already given but sending you best wishes and empathy!

[Curcubeu]

Thank you all for the kind suggestions. It is really helpful. Sending hugs 😊