Fatigue getting worse

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Cara123
Cara123 Member Posts: 34
edited 8. Jul 2025, 21:44 in Living with arthritis

Hi all,

I have inflammatory arthritis and take Methotrexate. My fatigue has recently got so much worse. My body feels constantly extremely tired. I love exercise but recently I am struggling to do this as I am so fatigued. Also when I don't work I seem unable to do much due to this terrible tiredness. I will get my bloods done earlier than scheduled but just wanted to share this with people who might well know how it feels.

Comments

  • Arciere
    Arciere Member Posts: 132
    edited 2. Jul 2025, 14:01

    hi there

    I feel your pain. I have PsA and suffer mostly with fatigue.


    What I’m finding, is a lot might be connected to diet. Easy said - hard to actually identify.

    Things that have helped are mostly removing things from my diet, rather than chasing supplements. I’ll list these in no particular order, it might be worth a try. I do think the gut is a driver of inflammation / fatigue.

    Things to look at removing:

    Gluten (there is gluten in everything - you’ll become an expert label checker)

    Sugars ending in ose (fructose, glucose, lactose etc) I.e honey in my case is major cause of inflammation I think

    Artificial sweeteners - all of them

    Deadly nightshade veg (tomatoes, aubergines, potatoes, peppers, paprika etc)

    Also staying hydrated really helps. This is hard for some reason - what do we drink if we can’t have artificial sweetener or sugars… I like herbal teas, cold and hot, and now aqua libra which says it has no sweetener or sugar…


    I also think eating gut friendly fermented things really help like sauerkraut, kimchi, kefir and lots of firbre through more vegetables


    There are lots of RA recipe books on Amazon - take a look maybe.

    Of course the methotrexate might be contributing, so do ask for a review after 3 months (is the usual timeframe).

    There are of course other reasons for fatigue like viruses and heart health, so do talk to your GP about it.

    I hope this helps. It’s really frustrating to feel fatigued. Everyone is also very individual, so what works for me might not work for you, but I am confident my diet changes have helped reduce the fatigue albeit I still carry it every day.

    Take care of yourself and let food be thy medicine. We are what we eat.

  • sarahmcl
    sarahmcl Member Posts: 1

    Hi, I’m in a very similar position Cara123. Have RA and been on methotrexate 7 years now. The last year or so I’ve had frequent flares and now am in permanent pain and really, really struggling with fatigue. The pain is manageable, but the fatigue is crippling. I’m flopped on my bed right now, unable to do anything. In tears because it feels like there’s no power in my muscles at all and I’m just wasting my spare time and missing out on doing things. Gone round in circles with the health service trying to get new/ different meds. Been advised to try hydroxychloroquine, but now have to wait for a referral to secondary care to get the prescription.

    Thank you for the food advice Arciere. Gonna try that.

  • Naomi33
    Naomi33 Moderator Posts: 583

    Afternoon sorry to hear your concerns.

    I have days and weeks of exhaustion but just learnt to go with it and listen to my body.

    I do what I can when I can and rest when my body tells me to.

    It is hard to adjust and frustrating but you need to listen to your body.

    Best wishes @Naomi33

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm


  • Cara123
    Cara123 Member Posts: 34

    Thank you everyone for the comments. Sorry you are also feeling exhausted and fatigued.

  • Cara123
    Cara123 Member Posts: 34

    Hi, this is exactly how I feel, too. I am not really in pain just that my body feels totally exhausted and fatigued.

  • Arthuritis
    Arthuritis Member Posts: 580
    edited 7. Jul 2025, 19:59

    @Cara123 @sarahmcl @Naomi33

    MTX takes 3 months to nobble & hobble your immune system sufficiently by reducing the supply of attacking T Cells based on dosage. Your immune system when fighting a foe, real (virus) or imagined (auto immune), consumes a huge amount of your resources, that is why both flu and RA make you feel so tired. HOWEVER, consider that if the imagined foe is actually something in your gut, food or a microbe, triggering your immune system, causing it to run on overdrive even on MTX, leaving little resource for your brain & muscle… then consider removing that trigger. How do you know what to remove? How do you know it’s even in the gut?

    Well, most of your normal immune activity is in your gut. Try water fasting after consulting your GP, for 7-10 days. Make careful notes each day for any changes. Most people find symptoms easing on day 10, energy returning - yes even if you haven’t eaten your body will use fat to keep going.

    Then remove all the usual suspects of trigger foods:

    gluten

    beans (lectins) - toxic plant defence toxin proteins to stop you eating them as unlike animals, plants can’t run. Normally your gut wall prevents these from reaching your blood, but if it’s been damaged, some will get through. These plant toxins can be quite potent as Georgi Markov found. Red kidney beans are more common example.

    Soy products

    lecithins (found in processed food, emulsifier)

    Cow dairy (A1 casein & lactose)

    eggs (unfortunately because chickens are usually fed on animal feed derived from soy)

    farm animal products including fish where the animal was raised on animal feed (ie, soy protein)

    Nightshade veg (aubergine, peppers , potatoes, - can be reintroduced later but right now your immune trigger is highly sensitised). The most extreme of these is deadly nightshade (belladonna) which contains atropine.

    avoid sugars EXCEPT glucose & dextrose. Glucose is made by the liver if absent from the diet, your red cells can only burn glucose. However you need very little, your entire blood stream only has 4grams, and insulin is needed to keep it low. Dextrose is just 2 glucose molecules.

    Avoid all the other oses - sucrose, fructose, lactose, etc.

    Think of your poor inflamed gut like your arm that’s been badly bruised and grazed, until new skin forms to cover up the wound, it will be horribly sensitive to everything.

    After your fast, eat something in a very small portion to see how you react over 24hrs. Make your own safe list, mine was plain boiled rice. Ultra boring but no pain or hot joints, no energy issues either. Added steamed veg later. Try goats milk yoghurt, small portion, this has A2 casein, unlike cow A1.

    Take it slow and make notes.

  • Arthuritis
    Arthuritis Member Posts: 580

    Your notes should include not just joint pain but also brain fog, as that’s the brain equivalent of joint pain. 

    I have been off drugs & off symptoms remission for 2 years, but consuming a trigger food (in my case unfermented soya protein), which I consumed in Jan 2025, and back into the MTX club. Currently working with profs at a uni lab to work out a general protocol to get back into drug & symptom free remission. 

    Key message is you have to identify and avoid your trigger foods. Your immune system will remember the worst ones, so once you stop, you can’t restart without risking a return of the symptoms. Milder ones that cause low irritation below threshold in a healed gut eg, potatoes will be ok, as will the other nightshades. Eggs might be ok in small amounts occasionally. But soya, gluten, A1 casein, & lectins never will. 

    These are well known triggers and there are diet recipes avoiding these. You may be lucky in that your immune system may tolerate some, hence the need to test each separately for yourself and keep good notes. 

  • frogmorton
    frogmorton Member Posts: 30,474

    It sounds as though your disease isn't really under control because I usually only feel that intense exhaustion when I am flaring. Much rarer for me these days.

    Arthuritis is absolutely right in my opinion and from the research I have done that the biggest part of our immune system is in the gut so eating a good healthy varied diet is essential. I hope you heard what he said about consulting your GP before attempting any water fasting diet.

    My own diet is vegan and I feel confident it has helped me a lot avoiding animal products and eating a varied (colourful) diet including plenty of protein. I also eat kimchi (fermented food ) most days and avoid alcohol, smoking etc.

    I have read things about oral (dental) health being potentially relevant so take extra care with my dental hygiene never missing a check up too. I exercise daily unless I am in real trouble and even then always do range of movement.

    Wishing you best of luck

    Toni x

  • georgekawi
    georgekawi Member Posts: 2
    edited 8. Jul 2025, 17:58

    fatigue is flaring up badly possibly due to your arthritis or Methotrexate. You're not alone; many of us understand how draining it can be. Getting your bloods checked early is a good step. Take care.

  • Anna
    Anna Moderator Posts: 1,198

    Sorry for interrupting your thread, @Cara123 , just want to give a quick welcome to @sarahmcl who I notice posted for the first time earlier today.

    I’m sure you’ve found some of the suggestions from our members helpful. These links from the Versus Arthritis website might also have some tips you might find useful:

    https://versusarthritis.org/news/2022/april/5-ways-to-help-with-fatigue/

    https://versusarthritis.org/about-arthritis/managing-symptoms/managing-fatigue/

    All the best,

    Anna ( Moderator)

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm