RA Fatigue ‘Pick Me Up’?

Hey..

I’m living with widespread inflammatory arthritis (possibly PsA but I don’t have Psoriasis).

Anyway, I’ve been trying to be active, but this is leading to extreme (for me) fatigue. I feel like I’ve totally run out of energy both mentally and physically. I find it really debilitating and actually quite hard to explain to others.

Is there any type of “pick me up” anyone has had success with?

When I feel like this, I know I’m not tired or ready for sleep - per se - and I’m not particularly hungry, I don’t fancy tea, coffee or beer etc. yet I have the sensation of craving …..something? but I can’t work out what for. I’m eating well in general terms.

(my medication is the biological Yuflyma / Adalimumab etc)

Thank you in advance for any tips… there must be something?

Alex

Comments

  • noddingtonpete
    noddingtonpete Moderator Posts: 1,214
    edited 10. Jun 2024, 13:11

    Need more help? - call our Helpline on0800 5200 520Monday to Friday 9am to 6pm

  • Arciere
    Arciere Member Posts: 48

    Thanks. The articles read as though they were written by someone who doesn’t suffer from RA fatigue.

    I can sleep all night and feel unrefreshed in the morning.

    I am already taking vitamin D.


    I eat an incredibly healthy and balanced diet.


    The four Ps might be good for someone who has nothing to do but enjoy their gardening hobby. I do not think the four Ps are completely applicable for a busy family. In fact they feel fairly condescending.

    Talking therapy is sound advice, but I haven’t noticed any miracle change in my fatigue after telling pretty much anyone who will listen about how knackard I am.

    What I’m looking for, is a pick me up that others have had success with e.g; energy drinks? herbal supplements? other types of pain killers? foods? medications? physical therapies? (saunas, hot tubs, ice baths/cold therapy), teas?

    Any success stories are gratefully received.

  • noddingtonpete
    noddingtonpete Moderator Posts: 1,214
    edited 10. Jun 2024, 13:14

    Hello @Arciere sorry the articles weren't much help to you. Hopefully others will respond soon with other suggestions.

    I hope you find something that works for you.

    Best wishes

    Peter

    Need more help? - call our Helpline on0800 5200 520Monday to Friday 9am to 6pm

  • Mollbhan
    Mollbhan Member Posts: 23

    Dont laugh but, try the sugar fix, open a tin of condensed milk get a spoon and have a few spoonfuls, I am in my mid 70s, have had RA for about 5 years and still lead a very active life. Like you I do get days of extreme fatigue but they don't usually last. I also take cod liver oil, turmerick, collagen and vitamins, I like a malt whisky as well but tends to make me sleepy.

  • Arciere
    Arciere Member Posts: 48

    Dear Mollbhan

    This is exactly what I am looking for! Thank you - I’ll try it.

    This week I had my first can of “Monster” it was too sweet for me so I only managed half. Not sure it did anything. I’ve also picked up some Ginseng and, some Vita Boost Energy, with B12, from Holland and Barrett and I’ll post here as to how this goes.

    Thanks for your comment.

    If anyone else has any fatigue busting pick me ups - please do post them here. (prescriptions, foods, drinks or supplements, etc). Anyone with experience of Lions Mane extract would be interesting.


    I guess it would be also interesting to know if any foods cause flare ups / fatigue. E.g the deadly nightshade family? (The Vegetables - not people who may share the same name!)

    Thank you

  • stickywicket
    stickywicket Member Posts: 27,764

    Hello,

    I find I'm smiling at the idea of a 'pick me up' for inflammatory arthritis. For far too many years I've found the only way to relieve a flare is a tweak of DMARDS. You might need something adding. Stage 1 would be to ring you rheumatology helpline. If your blood results are all OK then your GP might be able to help.

    But, personally, I find @noddingtonpete 's links really useful especially the all-important 'p's of pacing oneself and prioritising. I don't know how anyone copes without them. I certainly couldn't have done when my sons were younģ, before I got àny replacement joints. (I've never had 'a gardening hobby'. Never had the time or energy.)

    I guess condensed milk would give you a sugar rush but do beware supplemenys and herbal remedies. Check first with your pharmacist that they will not interact with your prescribed meds.

    I hope you find a solution. The fatigue is a ***.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Arciere
    Arciere Member Posts: 48
    edited 13. Jun 2024, 21:38

    Thank you

    I guess my view is that I’m already on a course of prescribed medication and have had every blood test going in the last 6 months, yet I am still finding that fatigue is interfering with my ability to live a normal life - I.e work and build a career and, meet the commitments required of a busy family, never mind enough energy for hobbies and self care.

    I am convinced there will be a non prescribed solution to reduce the impact of a flare up / fatigue. When I first talked to a Doctor about fatigue, I ended up with a prescription of Modafinil (prior to the PsA diagnosis). This did work, but I’d rather find something “natural” of sorts that has more impact than coffee etc.

  • Welsh1
    Welsh1 Member Posts: 89

    I don't really have the answer since being diagnosed I sometimes have terrible fatigue sometimes rest is the answer or fatigue is prolonged. I have a warm bath epsom salts and small cup of matcha tea. Getting enough sleep is important too.

  • Arciere
    Arciere Member Posts: 48
    edited 14. Jun 2024, 06:39

    Thank you / matcha tea is interesting. I agree the hot bath is good. I need to try a hot tub!

    know what you mean about rest. This is what I’m trying to solve - if I can’t rest because of work and childrens’ responsibility - what’s the next thing. I’ll try some matcha!

  • jamieA
    jamieA Member Posts: 819

    Hi @Arciere

    I can't really help with suggesting any form of 'pick me up' unfortunately. Like you I eat a healthy diet and I don't drink or smoke. From what I've read the nightshade fruit and vegetables link isn't borne out by science - in fact there's a school of thought that tomatoes may help reduce inflammation.

    I have PsA and I'm also on adalimumab - as well as methotrexate and sulfasalazine. I've read elsewhere that the very cytokines that cause our inflammatory arthritis also cause fatigue - both directly chemically and also indirectly through the stress of dealing with an inflammatory condition. I know you've said you've had extensive blood tests but have you been tested for anaemia? In my case I had anaemia just over a year after diagnosis. It's thought this was caused by Omeprazole - the PPI I was taking to counteract the side effects of taking an NSAID. I was put on a course of vitamin B12 and the PPI stopped. Later my vitamin D levels were then discovered to be less than half what they should be and I've been on a vitamin D supplement ever since. Last year I was found to have raised cholesterol which can cause fatigue and this is a known issue with some PsA sufferers. PsA sufferers may have higher levels of triglycerides and lower levels 'good' cholesterol. I use cholesterol reducing spread and drink cholesterol reducing yoghurt drinks.

    With me I'm more fatigued either the day after or two days after my MTX day but have a general level of fatigue most of the time. Before PsA I used to be a sound sleeper but now I find my sleep is disrupted or shallow. One rheumatologist I saw suggested this was because the body produces it's own steroid - cortisol - but doesn't do so during the hours of sleep.

    The rheumatology physio I saw recommended exercise as a way of both keeping my joints moving but also reduce fatigue.

    Hope you get something that works for you.

  • stickywicket
    stickywicket Member Posts: 27,764

    I think @jamieA is quite right. A former rheumatologist once told me that RÀ could cause low haemoglobin levels as could the meds we take for it. I suggesy you get your blood results checked to see if yours are low and, if so, for how long. Usually, a short course of iron tablets will sort it but it does need checking rather then just OTC iron as too much iron is as bad as too little.

    As for rest, an inflammatory arthritis won't be cheated. It'll just bite back. Do prioritse and get the rest you need.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Arciere
    Arciere Member Posts: 48

    @stickywicket @jamieA

    thanks for the input. I’m doing the b12 via this vita boost drink thing. The anaemia question is valid and I’ll raise it at my next consultation.. hadn’t considered cholesterol. I’ve been on vit D since my first rheumatologist consultation as it was deficient and I also take the Wellman multivitamins thing.

    sleep is ok for me, I just generally feel unrefreshed after sleep.

    The cholesterol yogurt drinks is interesting. I was wondering about prebiotic and probiotic drinks / supplements but I can’t work out how they would operate with the Adalimumab, if antibiotics are essentially defective. I have previously felt good after using yakult and kefir - I might try getting back on that.

    I am determined to not rely solely on prescribed medication!!



  • Baloo
    Baloo Member Posts: 512
    edited 14. Jun 2024, 21:27

    @Arciere how are you feeling today. I am not surprised its hard to explain as there is this very individual relation between what is physical fatigue and what is mental fatigue and ultimately what does it do to our mood after its being going on for a long long time, and then mysteriously how come its something we can control and change.

    I like feeling productive if thats any help, not many things make me feel that way, but it feels great.

  • frogmorton
    frogmorton Member Posts: 29,896

    Sadly there is no miracle cure for the fatigue that I have found except bearing with until the flare passes. For me it is just impossible to ignore and when mine were younger and I was doing school pickups etc I think I just survived. When shifts allowed I took rests and set an alarm.

    I never found an artificial/temporary pick up unfortunately either just survived somehow.

    My diet is now vegan (from vegetarian) I look after my gut microbiome and of course my children are now adults (sort of!) so life just got easier.

    Sending best wishes

    Toni x

  • Arciere
    Arciere Member Posts: 48

    thanks @baloo. I am actually having a moment of exhaustion right now for no reason at all. I too like feeling productive.


    @frogmorton can I ask you more about the gut microbiones (how do you look after that) and, whether your diet choices have reduced fatigue flare ups ?

  • Baloo
    Baloo Member Posts: 512
    edited 15. Jun 2024, 18:20

    @Arciere maybe somone can advise, because if I feel fatigued its likely I will lie down and maybe sleep for an hour or so. Suppose instead I said, I know, lets go for a bicycle ride. I don't ever recall trying that. Or suppose someone pushed me off a bungee jump, I might come back feeling quite invigorated, but never by choice.

  • Arciere
    Arciere Member Posts: 48

    https://creakyjoints.org/about-arthritis/rheumatoid-arthritis/ra-patient-perspectives/what-malaise-feels-like-rheumatoid-arthritis/


    The article here is very accurate from my perspective - im off to acquire some sparkling water ! I’ll let you know how it goes

  • Arciere
    Arciere Member Posts: 48

    Update

    @jamieA mentioned being tested for Anemia etc.

    Well, I just did a self test for iron deficiency from boots and it is showing abnormal. Thanks @jamieA I will keep posting updates here once I’ve discussed that with a health professional…..very interesting!

  • Arciere
    Arciere Member Posts: 48

    Update

    Frustratingly, all bloods were in the acceptable range. Both the GP and the Specialist Rheumatology Nurse were particularly unhelpful.

    I was feeling very furious. The fatigue was getting worse, yet seemingly I felt dropped by the health services because my bloods look ok.

    In an attempt to take control, I have purchased an anti inflammatory cookbook. After following foods on the banned list for a couple of weeks I’m pleased to say that I feel remarkably better. My productivity has increased hugely.


    I started this post, looking for a “pick me up”. What I am fascinated with, is that actually excluding food groups has led to a huge improvement.


    There is quite a long list of banned food items, including gluten, the deadly nightshade and, any sweetener or sugar type item ending in “ose”. (I was a heavy Diet Coke drinker!).


    I haven’t reintroduced anything yet to determine if it’s one particular group but I do feel great.

    All “ose” ingredients are now out of my diet (which has been quite hard) and the deadly nightshade nor gluten has passed my lips!


    So to anyone reading this fed up with fatigue. Please do treat yourself to rheumatoid arthritis cookbook and see if it works for you.


    In addition, I have a new interest in the gut micro biome. There is a Netflix documentary about this called Hack Your Health - Secrets of the Gut.

    What’s most disappointing is that I have had to discover all of this myself. I would like to know why none of the health professionals I’ve met over the last three years have not mentioned or advised anything around gut health and diet!


    For anyone associated with Versus Arthritis: please can more education and research be considered around diet and gut health. The four Ps are interesting but what’s really helped, has been making fundamental changes to what was by average standards a healthy diet to begin with.

    I won’t promote the cookbook here so as to avoid allegations of promotion, but there are plenty online.

    (My hand and feet pain remain and I continue with the Adalimumab)


    If anyone has an interest in the food and drink swaps I’ve made please do ask.

  • JoMcc
    JoMcc Member Posts: 3

    I haven't found any thing in particular which has helped with fatigue, but the day I was diagnosed with RA, I cut out all foods on the banned list, (except for one night a week which is treat night), took my folic acid tablets religiously, took vit D and multivitamins on the advice of my rheumatology nurses. I also give myself permission to have an 'hour' off every day to do nothing. Yes it's difficult, I have a busy job and I live on my own. But that hour is my life saver. If I'm ok, everyone else will be. I'm taking 25mg methotrexate and also hyrimoz.