So so tired: Hi everyone Since diagnosis a year ago my... - NRAS

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So so tired

speersy profile image
6 Replies

Hi everyone

Since diagnosis a year ago my treatment hasn't got too far. After being unable to take mix and sulpha I was started on a biological which I managed to be allergic too! They are trying another in a weeks time which will hopefully be successful as I am really struggling at the moment. I have pain all over but this past week I have been really sruggling with overwhelming tiredness. I have had this before but never as bad as this. However well I sleep it just won't go away. I slept for two hours today which is ridiculous. Does anyone have any advice. I am naturally a busy person but I am trying to rest. Does anyone have any dietary advice? Advice for eating healthily for RA in general as well as for tiredness. Thank you xx

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speersy
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6 Replies

Yes you should try and avoid all refined foods, additives, caffeine and sugars if you possibly can.

I went gluten free when I was first diagnosed four years ago have stuck at it even though I don't have full blown Coeliac's. I was told the other day that this may well account for the change in my positive autoantibodies to negative - as well as significant and helpful in weight loss.

This said I suffer from intense fatigue just now and am also very allergic to drugs and still have pain. But I do wonder how much worse off I would be if my diet wasn't so good? I don't think food fads such as paleo are very useful in themselves - but I believe some people with RA and other autoimnunity do benefit from going gluten and dairy free and eating extra amounts of fresh fruit and veg - as long as you research and compensate for any vitamins or minerals you may become deficient in such as calcium.

I don't believe a diet rich in gluten actually brings any nutritionary benefits so no harm in dumping wheat first and seeing if it helps. As long as you get your daily fiber from somewhere such as extra fruit, fresh veg, seeds etc so you don't get blocked up. If you do try eliminating a food group then it's a good idea to keep a daily journal of how this affects your symptoms and quality of life. It may not be a cure for RA but it might help you significantly re fatigue and generally. Especially as you are obviously sensitve to chemicals re your allergies to drugs.

speersy profile image
speersy in reply to

Thank you so much for your advice.mi am going to cut down on dairy and gluten and see if it helps. I will need to be careful adding too much fruit as I also have Crohn's disease but even if it helps with my fatigue rather than the RA that will be a big help. Thanks again Twitchytoes

in reply to speersy

You are welcome although I'm not sure about food elimination and Crohn's - please check this with your doctor just in case. I really hope something works for you soon and your Crohns and RA are both well controlled by Rituximab. I start Azathioprine this week if all is okay with my blood. I feel totally worn out by pain and inflammation - just getting over flu and pneumonia only to go straight back to flu-like. So you have my sympathy. Tx

His Speersy

Sorry to hear you are having trouble finding a good drug. I was just the same but Rituximab has been hitting the spot for many years now. I agree with Twitchytoes that gluten free can help some. I have been doing the autoimmune protocol Paleo diet for 3 months and found it has a big positive effect on my energy levels. If your disease activity is high you will feel tired as your immune system is on overdrive, it's like having flu isn't it. And yes you will feel the need to nap. Hopefully this next drug will be "the one". Everything is crossed for you.

I'm having a break from my diet at the moment as I'm struggling with the carbohydrate elements, I don't really like any of them very much. I'm already more tired.

Check it out for yourself:

thepaleomom.com/autoimmunit...

speersy profile image
speersy in reply to

Hi Kikideelili

I am starting Rituximab next week so I hope it is as successful for me as it has been for you. You are right about it feeling like having the flu. I do try to stay positive as I know it will get better but sometimes it is hard. Thanks for keeping your fingers crossed and taking the time to reply. I will let you know how it goes.

in reply to speersy

Ok. Next week take a good book or magazine as it can be a long day and I wouldn't plan anything for a few days after as it makes some people very tired afterwards. Also most units give patients a premed of antihistamines paracetamol and IV steroids. The antihistamines can make you very tired ( I usually sleep in between blood pressures).

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