Hi All!
I have been struggling with chronic fatigue for years,even before the RA diagnosis. I thought that after starting meds things would improve,but I'm still so tired.Anyone here has advice on how to combat fatigue? Supplements,vitamins ....what can I ask my doctor for?
Thanks.
I've had RA for 10years now & had the usual rollercoaster ride of trying different meds. But I find even though the meds I'm on at the moment, Hydroxychloroquine, methotrexate 20mg, naproxen, & Benepali injections, seem to be working well for now I constantly struggle with fatigue!?! Last month I saw RA doc & asked him why I'm so tired all the time, he just shrugged & said it's part of the illness! Then I was in BIG trouble because it's a year since I had my blood results written in methotrexate book! He said that I shouldn't even be given methotrexate by GP or pharmacist without them seeing my blood results!?!?!?! Hardest job is actually getting blood forms from anybody!
I'm laughing, due to insanity!!!!
Have you been tested for b12. folate, Vit d and ferritin levels, can often be the cause for low energy, RA does cause fatigue and tiredness, but best to find out if you have any underlying causes. All the best X
I had low ferritin levels & had a course of iron tablets. Later on seeing RA specialist & having further bloods done, I was told I was still anaemic but not iron deficient anaemic but due to my RA?!?!? I asked for an explanation to be told I have pockets of anaemia in my body due to RA, yes I'm baffled too?!?!
Thanks for your reply x
It's not that baffling when you understand the steps as to how anaemia in chronic disease occurs. I was only reading about it in the BMJ yesterday, that was quite convoluted, anything about blood can be baffling but this explains in somewhat easier terms transfusionguidelines.org/t...
Thank you for the explanation, I understand it better now. X
You're welcome. It's not helpful when they talk med speak at you & you don't have a clue. If only they'd take a little time to explain in terms you can understand!
I was given a 4 month supply by the rheumatologist, as I see the the rheumy nurse every 3 months she gives me enough to go on with. Do you have a rheumatology nurses helpline they could send you some. I also ring them for the results to put in my book. Hope this helps. X
The rheumy people tell me to get blood forms from my GP. GP not happy to give them!!!
My blood tests are requested by the rheumatology dept at the hospital. My GP comes under a different health authority, however it's my GP who prescribes my meds. The hospital writes to him with any changes, luckily they copy me in as this doesn't always work, so I take a copy to the GP. I think the surgeries are so overworked these days they rely on the hospitals to do the specialist work. X
I just book a blood test appt every month and the phlebotomist prints off the form when I'm in there. My GP checks the results within the next 24 hours and I get a phone call from the practice with her comments. I wouldn't want to go very long between blood tests if using DMARDS.
Thank you all for your replies! It seems we r all exhausted:((( so it could be the RA
I am on Vit D,folic acid and Calcium supplements other than plaquinil and methotrexate and prednisolone...was hoping the vitamins would do something but nope! I'll ask my doctor about anemia, although im not happy about the prospect of popping any more pills than i already am😭😭😭
I had low ferritin levels for many years treated with iron supplement which didn't agree with me. When further tests were done and my b12 was deficient an injection every 3 months it made such a difference to my energy levels. I have hashimoto's a thyroid condition, b12 is often a condition associated with this, both are auto immune diceases, like RA. X
I find the fatigue the hardest part of being ill to cope with. I start to do something and can't finish it.xxxx
Hi Sylvi - You have my deepest empathy. I used to be a chronic high (VERY high) energy person. This is crazy. And when I first started dealing with all of this it was no wonder my hubby didn't really believe it was as bad as it is.. How could he when I went from a 100 watt bulb to maybe a 5 - ha ha
Here's hoping we all get a better answer very soon
I took part in the RAFT study,
uhbristol.nhs.uk/research-i...
Which basically was looking into helping people to manage their fatigue, which one of the symptoms of the disease. You can still have fatigue even when your RA is well managed.
The course I was involved in taught and gave suggestions for strategies to aid fatigue management, pacing, relaxation and how to manage your day to reduce fatigue. It was incredibly useful. I was offered to be part of the study by by rheumatology department. Could you enquire if there is anything available in you area?
We do get embroiled in the medication aspects of this disease as it becomes such a big focus of our lives, however there are other ways that we can help ourselves. Changing the way we approach tasks, (breaking tasks down into smaller chunks) taking the right amount of rest, relaxation (of the mind and body) and excercise, at whatever level we are able, are as important in our disease management.
Hope you find a way that helps you.
It seems to me that the fatigue is pretty much always with us. I take vitamins, probiotics, GC-Maf yogurt, kombucha, eat a lot of fresh raw veggies, work out as much as I can, remain active, etc. and sleep 10 - 12 hours a night. And the fatigue is still there. Other than a chemical stimulant of some kind, I would be thrilled if someone found a better answer =)
Have read a bit about fatigue an its causes in AI diseases. It seems to be quite common in RA. Research tell us that in RA a dysfunction of our adrenalin gland is part of the disease, which also means that that our cortisol production is low. We also have what is called oxidative stress which means the cells have an insufficient antioxidant defensesystem where free radicals cause damage to cell function. It has also been stated that fatigue is a reaction in the CNS to inflammation in the body. It has also been seen that there is a mitochndrial dysfunction in RA patients. Here are some of the dysfunctions that cause fatigue and that you can in fact at least try to do something about.
Adrenal fatigue can be treated with supplements that easily found on the web, have proved to help and recommended by functional medicine doctors.
Deficient antioxidant levels can be helped by supplementing with glutathione, vit.C, vit.E, vit.D, Q10 and beta caroten.
Mitochndrial energy levels can be raised by a correct diet where good fats give better fuel than carbs.
In my case LDN has given me better quality restful sleep which undoubtedly has an effect on chronic fatigue.
Unforunately the most used RA med mtx has fatigue as a common side effect which doctors have not found a solution to.
Since I am not taking RA meds and have treated my initial RA fatigue successfully with the above mentioned support, perhaps this does say something😊
Actually I take d3, Synthroid, l-glutathione, vitamin c, borage oil, Evening Primrose Oil, Q10, Mega Red, vitamins, Neem, etc. I've researched all of these as well and agree that there are a lot of possibilities. I think in my case, a lot of it is maybe the Sjogrens Syndrome. The symptoms are almost the same, even though the end results are completely different.
Actually I forgot the astraxanthin and several herbal blends, and some K2
There are so many supplements to try😳I think I have plowed through uncountable. Trying to reduce my arsenal to the most essential and hope my diet will take care of the rest😊
Yeah - I do that about every six months - ha ha. I realize that I am taking far too many "pills" (supplements or herbal formulae) and try to cull it down...
have you had your thyroid checked and adrenals tested. Also are your vit d levels etc ok? You may want to look at changing your diet. I changed my diet many years ago and it changed my life. I was that person that felt tired and now as long as a good nights sleep I feel great. I don't know if you have heard of bullet proof coffee but I know he has some great supplements that help give you energy. I know there are brands that do similar supplements to his but I don't remember the names of them.
Simba1992, what is LDN?
All info you need here to be found: ldnresearchtrust.org and ldnscience.org. I am sure you find the reading interesting😊
Thanks for asking this question and thank everyone else for the ton of information!!! I can not express how much this means to me!!! I am struggling with always feeling tired, and it drives me crazy when people think you are trying to get attention or they don't understand how you can always feel tired!!!
I take high dose iron twice a day and also higher dose B12 daily. This does not help me with feeling tired. I'm hopeing the rheumatologist will be able to help a bit more , but all this information is fantastic!!! Gives me some hope!!!
So thank you very very much!!!
Hi Isabella81, there are two sites I can recommended on here (Health Unlocked,) that help members with chronic fatigue on daily posts. 'Thyroid Uk' and PAS (Pernicious Anemia Society) which is also for B12 deficiency too.
*Chronic fatigue is a listed symptom of both Low Thyroid (Hypothyroidism) and/or B12 Deficiency. Also members can help you forward with other blood tests you might need need such as iron, ferritin, folate, vitamin D, also vitamins and minerals too.
Just to you let you know that we are working with a health psychologist from Kings on the groundwork for a major new publication from NRAS on fatigue. I'm chairing a focus group next Friday with a dozen people with RA so that we can be sure to identify all the areas of interest about the management of fatigue that you want to know about. It will be published later in the year.
BW
Ailsa, NRAS CEO
Wonderful! I am deffinitively waiting for it to come out!!
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