Fatigue!

[sp22]

Morning All.

I'm fairly recently diagnosed with RA, mainly affecting hands and wrists at the moment. This last couple of weeks the fatigue has really hit me which I hadn't noticed too much before. Sure I'd felt tired before, but put this down to "painsomnia" but now my pain is better controlled I am sleeping much better.

I work full time with a family to care for so taking to my bed is not really an option for me.

Any advice on how to help with this awful feeling of constant lethargy, zero energy, brain fog and feeling like I'm carrying around a body made of lead??

Any tips gratefully received!! :0)

[Fruitandnutcase]

I would ask to have my vitamin B12, vitamin D, ferritin and folate tested - I never managed to persuade my doctors to test them so now I order finger prick blood tests from Medichecks - I have to pay for them but it saves begging my doctor to do things they don’t want to do and it means I know how things are going. I get their thyroid 11 which does all that plus thyroid and other things as well - thyroid problems and brain fog go together - although I remember seeing a doctor years ago when I sounded just like you - she gave me HRT patches and that solved my problem. I imagine you could get just the first four tests on their own if that’s all you want.

If B12, D etc are very low then you will feel as you do. On the other hand people with rheumatic disease feel pretty awful too so it could be that too.

[sp22]

Thanks Fruitandnutcse ... I am peri-menopausal too so that is complicating issues I’m sure!

I think I’ll contact my GP and ask for the blood tests you have mentioned. Thanks again

[Hidden]

Oh I know that feeling well!!! It’s my worst symptom of this disease. For me fatigue is a sign that my disease is very active body full of inflammation and when I get it there is nothing I can do. Driving working even reading or watching tv is impossible I also find it hard to communicate as my brain just shuts down. I need to rest rest rest . Especially hard when you have family. If it lasts for an hour or a day I can manage any longer I contact my team and get a steroid injection or oral steroids. If you bloods show inflammation they will test you unfortunately my bloods are always good. Wish I could give you more constructive help but I never been able to beat fatigue.

[springcross]

Hi sp22. What meds are you on? I know that RA can cause your symptoms but so can some RA meds, particularly in the early days.

[sp22 in reply to springcross]

Unfortunately I’m not on any meds as yet to treat the RA. My consultant started me on hydroxychloroquine but I had an allergic response to it so had to come off it. I’m waiting to start methoxetrate but there is difficulty in getting a face to face appointment to have all the initial tests done before I can start on it on top of a reluctance to start me on immune-suppressants during the covid pandemic. I had a Kenalog injection about 6 weeks ago which worked miracles for my pain and inflammation but started wearing off a couple of weeks ago and had a really bad flare at the weekend after doing too much although the worst of that is over as I’ve been resting my wrists and hands as much as possible. The only other meds I’m on are naproxen and omeprazole to try and help inflammation although I’m not convinced it’s making much difference.

[springcross in reply to sp22]

What a nuisance. I had a depo medrone in the early days last August and that was like a magic potion but the second one I had in December didn't do anything. I get it in my hands really bad too - that's where it all started, majorly swollen and painful. I know it sounds off but I don't do too much now as just winding my washing line up starts my inner wrists and thumbs off. I don't even wash up as the couple of times I've done it, I have really regretted the next day. I hope you get your appointment soon, it's crazy the amount of time that people now have to wait. All the best. xx

[Boxerlady in reply to sp22]

I'd keep pushing your clinic if I were you. It's tricky as they're all taking different approaches but I've had a face to face appointment recently and my clinic's view is that steroids put you at greater risk than Dmards.

[Hidden in reply to Boxerlady]

Same here no steroids from consultant but when he went on holiday his registration gave them to me. Hate steroids but they are doing their job.

[Boxerlady in reply to Hidden]

Obviously it's important to take them when you need them, I just meant that it seemed a shame that sp22 was being offered them but not Dmards.

[Hidden in reply to Boxerlady]

Yes it just seams silly . So many people are suffering again there is no consistency.

[Hidden]

It's all been said but rest more rest and knowing it probably means your RA is active so you need to adjust for it whether you like it or not. It is the hardest part for me the pain I almost used too but fatigue and brain fog hopeless. Also Vit D checks as peri as this was a huge factor when I was a few years back.

[Madmusiclover]

Sadly no tips from me. Hopefully drug therapy will help in the end, though fatigue attacks never go away. I have after 5, nearly 6 years, learned to accept them rather than fight them. Try ‘fatigue matters’ booklet on NRAS website.