Brain fog: Hi RA warriors, hope you all are enjoying... - NRAS

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Brain fog

Savannahseger
Savannahseger

Hi RA warriors, hope you all are enjoying the summer despite the heat and swelling :(

I want to know about other's experience with fatigue, concentration and brain fog. It's a hard symptom to explain or pinpoint isn't it?

My RA has been flaring for the past 6 weeks and while my joints have been swollen and sore, they haven't completely immobilised me so luckily I've not had to have a day off work apart from visiting the GP a few times (touch wood). So I feel proud that I've managed to carry on working through this flare. In the past when I was working in retail and bartending, work was impossible because I couldn't stand for long. Now I'm in an office, as long as I can walk to the office from the bus stop, I don't need time off work. However, my biggest struggle staring at a computer all day is fatigue, lack of concentration and ability to focus on conversations or tasks. My head feels woozy and light headed, I have no motivation to focus and 'crack on' with tasks, and I am really really slow. I generally feel poorly at work, dry sore throat constantly too. It's not obvious that my flare is bad because I can move around, but I feel so under the weather. Stiff, achy, exhausted. I'm not paid for sick days though and I don't want to take a 'rest' day. For me, time off is only necessary if I can't get out of bed.

I'm staying hydrated and eating healthy where I can, I'm vegan so I get plenty of fruit veg and fibre, protein from beans and soy etc, and I take Vit d and Vit B12. I've been avoiding coffee, and I sleep 8-10 hours if I can but it never feels enough.

Is there anything else I can do to tie me over until my flare is under control? It's getting me down a bit and I hate being moany and miserable around my boyfriend when I get home from work.

My appointment is on the 6th August so just under 2 weeks. Fingers crossed they sort me out!

15 Replies
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Hi I was diagnosed in 2015, I am new to this I am hoping that you can help me, I am enjoying the weather, but like you I am feeling really grotty :( I am aching all over even down to my feet. I think I am having a flare up too, The fatigue is a real problem as I am writing to you I am loosing concentration and I have to think what to put, I am sorry that you are feeling this way too, what helps me I have paracetomols most of the day it helps me with my low mood and and my aches and pains. hope this helps

Hiya,

sorry to hear you feel grotty too :( It's the worst flaring in this heat. Have you been in touch with your rheumatologist to make an appointment and are you taking any medications for the disease?

Do you find that rest helps?

The only thing I can say is make sure you're eating well and drinking and sleeping enough. But it's still not sorting me out entirely as I'm still struggling, but I know it's worse if I'm dehydrated or I've eaten too much sugar, carbs etc, really makes me fatigued. Staying cool helps, if you've got a fan or can put your feet in cold water at the end of a long day.

I've tried lots of things and whilst they don't fix the problem, they make it slightly better.

Hope you feel better

No I haven't been in touch with rheumatologist, I am taking 25mg Methotrexate, and 4 tablets of sulfasalazine and to top it up with paracetomols when I am bad, Definitely I have to rest when I am like this my body wont allow me to do anything and if I am tired I have to sleep, I drink alot of water to keep my brain working and that does help, I am going to do that put some cool water in a bowl, I have tried lots of things and like you it has made feel better, My Husband bought a fan home the other day and that certainly worked :) Thankyou this has helped

It sounds like you're doing all you can to look after yourself, most important thing :) And sounds like your husband is very supportive!

Yes try the cold water trick, it's so refreshing. Even better, if you can get your hands on a foot bath!

Do people around you understand whats going on when you're fatigued and struggling with the brain fog? My main problem at the moment is getting people to understand that part of my disease.

Thankyou this has helped ... my husband and my mum and dad are my supporters they understand more than most people ... I haven't spoken to alot of people about it because I don't want them to feel sorry for me ,i know that i have put a wall up it's only in the last year I have excepted the condition i do explain to my friends that I am not well and I can see in there faces that they are puzzled by it yes I know what you mean they think you are pulling a fast one and been miserable I wish there was a long term cure maybe in the future they will be.. most of the time i am positive person thankyou for your support

Hi I think fatigue is a big part of our disease and with having RA for 4 years now I've learned not to fight it and really enjoy my afternoon siestas as I've been medically pensioned off from work 4 years ago but I know it's not so easy if your working all day, I drink loads off water eat healthy and exercise most days and I think the fatigue is part and parcel off having RA and the hot weather doesn't help but is great, having others understand RA is not easy and even my wife took about a year to understand the disease and my growing up kids still don't understand fully as they see you looking alright but inside our bodies are are a different matter ,so I would just do what your body tells you and hopefully things will get better, also I'm on biologics now and am waiting to start a new one Humira to go along with the Methetrexate 20mgs and Sulfazalasine 500mgs I take so maybe that's another option for you xxx

Yes not fighting it is a wise choice! It's hard, I'm in my early twenties and I feel like I'm missing out on a lot though because I need to rest, or I know if I fight the fatigue and go on a night out I will suffer all week.

I need to bring exercise back into my life, I'm just scared when I'm flaring because I don't know what I physically should or shouldn't do, and what I can or can't do. I've been thinking about going swimming but the idea of getting to the swimming centre, getting changed into my swimsuit in a hot changing room, seems like more effort and pain than it's worth!

I've been on Humira before, I hope it helps you! It put me in remission for 4 years which is the longest I have ever been in remission for, I think diet helped that too. I'm not sure what meds they will put me back on when I go back to see the rheumy, I've tried a lot of them over the years so no idea what to expect this time.

Your family will start to understand, it just takes a lot of communication from my experience.

Brainfog has been the most debilitating factor of my story with RD and my first presenting symptom. My rheumatologist eventually referred me to a neurologist interested in brain fog and inflammation at the Anne Rowling centre (funded by JK Rowling, in memory if her mum, fabulous place). His biggest contribution has been to believe me and explain why some of us with RD have brain fog. I was just about to start MTX when I saw him, he said it has the best success rate with extreme fog fog - and it certainly helped me ! Brain fog 90 % gone after 2 doses of MTX. He also advised not trying to fight the brainfog, but working with your body, plenty fluids etc .

Prof Edward Bullmore's book ' The Inflammed Mind' is an interesting read, he mainly focuses on inflamation and depression, but the story is relevant to RD too.

I hope you get some relief as a result of your appointment with the rheumatologist.

Savannahseger
Savannahseger
in reply to Mmrr

That's interested! I never thought about it as inflammation on the brain causing it. I always just thought it was a result of my immune system having enough. It makes sense though.

I'm not a fan of MTX as had terrible nausea, not sure if I'll be put back on it. I'm hoping other treatments can also help with the brain fog and fatigue though.

Thank you for the tips and book recommendation! I'll check it out :)

Mmrr
Mmrr
in reply to Savannahseger

It's not actually the brain that is inflammed , but proteins called cytokines that are produced as a result of the inflammation. These proteins cause brainfog in some people and make us want to retreat, lie down and rest to protect our bodies, hence no motivation etc

Similiar process occurs in depression according to Prof Bullmore , who claims depression is an autoimmune disease.

Savannahseger
Savannahseger
in reply to Mmrr

Wow that explains a lot to me and explains why i often have low mood which accompanies it all...

Is all of this info in that book? I'll definitely have a read.

Mmrr
Mmrr
in reply to Savannahseger

Yes - a good read.

My doctor put me on plaquenil and after 3-4 months my brain fog lifted and my fatigue improved.

Savannahseger
Savannahseger
in reply to Jste

That sounds good! Il ask about it thank you

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