help please 😊

how do u deal with fatigue i have no energy and rheumatologist is more interested in blaming it on everything but rheumatoid

[J1707-]

6 years down the line and I still struggle with fatigue this my worst symptom. Rheumatologist are only interested in the physical problems and fatigue isn’t considered one it’s the invisible part of our disease. I was told there is nothing they can do. Each day for me is different I can’t plan anything.

[Hopeful1]

Hi Polar23. Sadly fatigue a very common and stubborn RA effect. Do you know the work of NRAS? An amazing RA charity with a valuable website. If you go online to NRAS fatigue there is a downlodable free booklet which gives lots of info.And others on explaining RA to family and friends to help them understand how it affects you. Also many here use the spoons approach. I am sure someone will be along to tell you how to find it.

Fatigue is a pain but we do find ways to live with it. You are not alone and we do understand.

Hope you find the help you need soon.

[seabreezegirl]

RA makes you tired so does any auto- immune disease like Lupus , Fibro , Chronic Fatigue Syndrome and so on..... what is wrong with the doctor ??

[Runrig01]

My rheumatologist isn’t keen on dealing with issues other than my spine. I have AS, but have to fight when my hands, feet and jaw play up. He also says fatigue is the one symptom that’s very difficult to manage. I’m on a PPI that affects absorption of Vit B. I’d been talking oral with little effect. I switched to sublingual and went from under range to sitting at top of the range, and a definite improvement in fatigue. I try and pace myself when it’s at its worst.

[Flinda]

Same here. It's the pits being so tired but made worse by not being acknowledged as a symptom. You have my support 100%.

[sylvi]

I find tha fatigue is one of the hardest part of RA that i have.xxx

[Neonkittie17 in reply to sylvi]

💗xx

[ChristineCats]

I've had fatigue for the last 34 years due to fibromyalgia and more recently diagnosed with Ehlers Danlos Syndrome but this fatigue since being diagnosed with RA about 18 months ago is off the scale. Had some more blood tests at last rheumatology appointment a couple of months ago but haven't received any updates so they must be ok. Rheumatologists don't seem concerned about it but they should try living in our shoes.

[Hidden in reply to ChristineCats]

I have RA, Fibro & hypermobility too 🤦🏻‍♀️ Amitriptyline 20mg at 6-7pm helps me. I sleep more solidly which helps. I also avoid gluten and take a B12 daily..

[Angjoplin]

I'm with everyone else. Fatigue is the worst. And especially because no one else understands. I cope with coffee, coke and basically anything cafine through the week. Then crash on a weekend.

[Aporiac]

I've had quite lengthy discussions on this topic with a couple of rheumatology nurses at the clinic I attend.

The problem is there isn't really an objective test for fatigue, so some practitioners struggle to see it as 'real.' One nurse I raised it with came close to suggesting it was all in my head.

I'm sure it's more than just a psychological reaction to having a chronic medical condition. Furthermore, I'm 100% certain that methotrexate has a negative impact on my mood and on my levels of energy (the two are also related and feed each other).

If I had the summarise the attitude of my nurses, it would be:

"Well, the treatment works for the condition we're treating, which counts as a success, so run along now!"

and

"If there are any side effects, you'll just have to 'adjust' to them."

To make matters worse, I had to add Adalimumab to the mix to keep my RA under control, which seems to sap even more energy - much of the time I feel like a a wrung out rag that's been run over by a bus!

The only time I've felt vaguely normal in terms of energy level and mood since getting RA has been when I'm taking corticosteroids. Everything else that controls the inflammation well knocks me for six. The pain is mostly gone, but I'm too tired to do anything much of time!

I'm getting close to the point where I'm going to beg my consultant to put me on prednisolone permanently - maybe in low dose in conjunction with methotrexate - and I'll live with the long terms risks. I'd rather have a shorter, but more active and enjoyable life than a long, exhausted trudge! I don't have any better ideas, unfortunately. It seems with RA there are no 'good' options - only 'least worse' ones. That said, I'm extremely grateful I'm no longer wracked by pain, and that counts for a helluva lot!

Incidentally, without making any grand claims, I find that prayer helps. It doesn't really alleviate the symptoms, but seems to be personally strengthening, and that's worth quite a lot. If I'm feeling especially sorry for myself, even a bit despairing, a prayer often brings me round.

[Pulfs]

my rheumatologist nurse at the Royal Berkshire Hospital is very understanding with this condition. I have retuximab infusion every 6-8 mths and she makes sure I get it in this time scale as the fatigue gets worse as it wears off and she always asks about my fatigue and refers me promptly for my infusion. This keeps me going for a few months so I can cope. X

[Aporiac in reply to Pulfs]

I'd be interested to hear your path to retuximab, and the interaction with fatigue. You seem to be implying it addresses it, while some people here (me included) are complaining that the monoclonal antibody they are taking seriously exacerbates it.

[Hidden]

Fatigue has been, and still is, my biggest issue. I too felt that I was being ignored every time I tried to broach it with Rheumatology. I was eventually (couple of years in) given an additional diagnosis of Fibromyalgia to go with my RA.

What helped me was sorting my life out… which obviously took a while.. I moved cities to be back near family (emotional support). Sorted out an old frozen pension and DWP benefits stuff (that quite literally took 8 years and was horrendous).

I was then prescribed Amitriptyline to help with ‘solid’ sleep which helped enormously. Had a year of one to one counselling. Took early retirement from a toxic workplace ( just a day a week, but still….). Then Covid hit, so I literally had no human contact for 2 years, was not working, and had my finances finally in order. I replenished household goods etc to set me up, and had a good rest.

2022 I ventured out and had some holidays in Britain. This year I will be going to Europe. Hopefully next year I will be up for long haul…

My confidence took an almighty bash, and my poor little head took a while to adjust. I can now ‘pace and rest’🎉. One day on, one day off is doable now. My muscles need building up, and that’s my task for this year. My legs are still **** which is annoying, as I was always a walker, but hoping that will steadily improve with better muscle tone.

Everything is incremental, so it can be difficult to see progress. It can and does take ages to get your head round things, and to adjust to a ‘new’ kind of life. I am officially a tortoise (though sea turtle suits me better), no more leaping about for me…

[Gnarli]

My body is busy attacking me. My body fights the resulting inflammation.

All this fighting uses energy and wears me out. So, I reckon fatigue is a normal situation if things aren't under sufficient control. It may be a simplistic view but works for me. It's a right royal pain in the pinnie.

[Hidden in reply to Gnarli]

Totally agree. If you are fighting 24/7 you are going to be exhausted…

[Hidden]

thank u everyone i do have fibromyalgia as well so speaking to a gp nxt week to see if that helps as well along flair that doesn’t want to go the now either

[Hidden in reply to Hidden]

Ask about Amitriptyline. I take 20mg at 7pm (don’t take any later than this). I sleep really well now and do feel refreshed when I awake.

[Deeb1764 in reply to Hidden]

a lot of us on here have that too I am on pregablin to make sure I sleep at night as fibro keeps me awake at night. There is no win win it’s finding what works for you and know we are here too understanding it as well as so many don’t!

[Hidden]

Good luck, all these little changes add up in the end x

[medway-lady]

In a way the fact that the doctor is looking at other stuff is actually good. Of course RA causes fatigue but so does other stuff like thyroid failure and anemia so if you’ve been checked for the other things you can assume it’s RA related. So please get checked for thyroid function, B12 , kidney disease etc,by asking for a full blood count after that then you’ll be informed and able to deal with it. It might simply be taking thyroxine or B12.

[Hidden in reply to medway-lady]

I’ve been checked for everything every month I’m talking about the rheumatologist blames everything pain sore joints anything at all on fibromyalgia only because he doesn’t check me proper nd bloods keep being normal he’s not interested in rheumatoid

[cuppa69]

Hi, so sorry to hear that. I was struggling really badly with fatigue a short while ago and have been taking Floradix iron and vitamin supplement, which you can get from Boots, and I've found that's helped, although it is a little expensive. Best of luck 😊