Newly diagnosed. The fatigue!! HELP

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Hello all

My name is Susan and I'm in Australia.

I'm newly diag with RA although I suspect it's been active over a year. I already have joint damage in the middle fingers of both hands. Pain is predominantly hands, feet, hips and knees. Due to also being type II diabetic plus depression (who wouldn't be depressed!!) my GP has referred me to a Prof of Rheumatology at the Royal Adelaide Hospital- I can't afford to go the private route. In the interim he's just given me Mobic for pain combined with paracetamol which isn't helping and my tummy is very sensitive to anti inflammatories. I've been crying a lot- I'm divorced so have no partner to support me. I have a high pain tolerance but the fatigue!!!! Is there anything they'll offer that will help with this? I used to read 5 books per week and currently can't get through a page without crashing into restless un refreshing sleep for around 2 hours and wake with brain fog. I also have a bone dry mouth and lips all the time. Worst still- I house share with my brother who keeps telling me it's "in my head" and "STOP wandering around in your dressing gown".

I'm doing this currently as the fatigue is so bad I'm in and out of bed. I need some hope desperately. Thanks in advance. Hugs from down under. Susan

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  • Posted

    Hi Susan, well, I wish I had an answer for the fatigue. Like you, it feels the worse to me even over the pain. From what I've read out here so far, nothing really stops the fatigue. It's very disappointing because I'd take getting rid of that over the pain myself. At least I can take stuff for the pain. I'm so sorry you are going through it and that you don't have an understanding housemate. Maybe have him check out RA on the internet so he can see for himself just how serious and miserable it can be. 

    I am awaiting to hear if I will be accepted on a clinical trial for either Humira or Xeljanz (I have no health insurance so it's my only hope of getting on a biologic), but to be honest, the fact that those drugs take the immune system down so much (I work in a hospital) makes me wonder if it's even worth it. 

    I suffer from dry eyes and mouth (there's actually a name for it called Sojourns Syndrome and it comes with RA) and the med I take right now took away 90% of my foot pain, but I still deal with the hands, finger, wrists, knees, shoulders, elbows and sometimes hips. My hands are the worst.

    Welcome to the forum and I hope someone can give you some hope (and me as well!) for the fatigue. If there's something that takes it away. The problem is, our bodies are constantly fighting themselves thinking they're attacking a foreign body when it's actually healthy cells. So just like when you have a cold and you feel tired, it's because your body is fighting the illness off and working overtime. With RA, our bodies are doing that 24/7. I've heard that exercise can help and sometimes it does for me, but other times it just makes me more tired. It's worth a try though!

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    • Posted

      Thanks for your reply. I'm not happy you have the terrible fatigue but it is a comfort to find understanding!!

      Due to my diabetes I'm praying they'll trial me on Humira and bypass the first line stuff- but we'll see!

      Yep- I've asked my brother to read about RA but he says the disease process is in the mind and to "deny it"!! Yeah- right!!! 😁

      Have you found anything that helps the dry mouth? I've tried the Biotene gel etc but it didn't help. I wear an upper denture so it's really difficult to get any suction happening. Argghhhh!! I'm 53 and feel 100!!

      Thanks again, Susan

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    • Posted

      Hi Susan...

      Funnily enough I was reading about fatigue just yesterday on a really useful website my rheumatologist recommended. I know I can't post the exact link to the article here or my comment will get taken down but if you go to the Arthritis Research UK website there is an interesting article in their "news" section. Headline is "Tired Of Fatigue"

      The same organisation have also updated their "fatigue" section and pamphlet on their website so try to find that on the website too as it may well have helpful advice, or failing that might even just be useful for you to print off and show to your brother. I'm sure there will be information in there that will ring true with your situation. My rheumatologist recommended that website and I have to say it has been so useful to have a good reliable source of info on arthritis!!

      I think one of the most important things for me with trying to adapt to this disease has been having an understanding medical ear about fatigue as for me, as has been said here, the pain seems to be being dealt with but the fatigue seems so potentially misunderstood. I have been lucky in that 2 of the 3 docs I have dealt with were extremely understanding about it and explained that the fatigue is a very normal and expected element of inflammatory arthritis. However, even with that sympathy, the fatigue for me is also the most difficult thing to bear as it does seem to impact on all aspects of life.

      Good luck! And in the meantime I'd get outdoors as much as possible, even if you are just resting outdoors. Vit D deficiency can be linked to fatigue apparently and some sunshine might just help your mood a little too. And that is written by someone who is currently in a dull and dreach Scotland and had little or no sunshine at all since January!

      All the best. 😀☀️😀

      Oh! And regarding the dry mouth, I have found that chewing gum made it slightly easier to bear.

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    • Posted

      Thanks for the info on the fatigue. I'll have to check that site out myself. I just wanted to mention that I'm on Methotrexate and unfortunately, fatigue is a side effect (as well as nausea and all that goes with it). I am trying to get off of it because it makes me feel worse than the other drug they had me on (leflunomide). It's very frustrating!
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  • Posted

    Hello Susan, sorry to hear of your problems. I don't think much can be done for your fatigue, at least until your consultant starts you on immune supressing medication like methotrexate which should help. Presume he's mentioned this to you? I feel for you not having anyone at home to support you..you're brother sounds like a fat lot of help and support!  I used to have similar issues with my brother and he's my twin..so much for twins having some sort of cosmic link and feeling each others pain - what a load of tosh! Thankfully I have an absolute angel of a wife who never so much as utters a tut when she has to help me, or at least I've never heard her, smile and believe me I need a lot of help these days even with simple day to day things.....

    I can empathise with how you feel. I've had RA for 12 years, which up until recently has been relatively well controlled with immune supressors. But I had to stop taking these back in february because of complications brought on by another more recent chronic health condition. Won't go into that here, enough to say that I've recently had sepsis and run a high risk of getting it again if I stay on immune suppresors. I'm now taking tramadol and paracetomol for the pain, which at times is just about tolerable. I'm very wary about taking anti-inflammatories because they gave me a mild heart attack 10 years ago, but I do ocassionally treat myself to one when the pain is really bad, so you can envisage the amount of discomfort I'm in to take the risk of another heart attack - it really has messed up my life big time!! The anti-inflammatories do help more than pain killers, so I'm thinking that there is medication availiable like omeprazole to help with your stomach issues though I expect your consultant has already mentioned this? Naproxen is supposed to be easier on the stomach than other A-Fs and the heart, or so I've been told by my doctors. As for me, sorry to hark on about myself, apparently I'm a very rare case and the consultants for both of my conditions are currently scratching their heads together to come up with some form of effective treatment...at least I hope they are, but I'm not holding my breath on that one!  Anyway, to be perfectly honest, and I'm well read up on my conditions, I really don't think there's much they can do other than put me on long term antibiotics plus a low dose of methotrexate, which I'm not at all keen on due to the sepsis risk. So it's either that or spend the rest of my days (I'm 64) racked with seriously debilitating pain...talk about a catch 22 situation!! The one good thing about fatigue is that at least I get some respite from the constant pain when I'm asleep.

    Once again, I apologise for my rather selfish post. I didn't mean to go on as much as I did, but it's the first time I've gone public, so to speak,

    about my condition hence I got carried away a bit. 

    Good luck to you

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  • Posted

    No, it's not in your head, Susan. The fatigue is real and just has to be allowed.

    I found the pain manageable but the fatigue unbearable.

    Evetually I ignored all the nay sayers and simply looked after my own needs as best I could.

    No point in getting angry at people who have no way of understanding.

    You have enough to be dealing with without letting your brother make things worse.

    But it will go, so don't lose heart. Get yourself to a rheumatologist and start on the treatment. The fatigue will slowly disappear.

    Also, be sure to tell your rheumy about your bone-dry mouth.

    Are your eyes also dry?

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  • Posted

    Hugs to you too , Susan!

    it sounds like you re going through a tough time. It s good you ve got an appointment coming up with a rheumy, because that s the first step to coming to terms with this disease and actually feeling hopeful that something can be done about it . It can take a while to get medication that works for you as people respond differently .

    With regard to fatigue and depression it s abig issue with ra as the disease is so life changing, but the following things have helped me; keeping myself informed so that way I don't feel so overwhelmed with what s happening; Have  you got someone you could just go out for a coffee with for an hour, even if you have to sleep for a few hours when you comeback! ?

    I totally agree with the person who said to sit out in the sun.

     Also, as my pain has been brought under control I have done more exercise . Right at the beginning the hospital arranged a physio appointment and OT appointment, both of which were really motivating about self help strategies. I don't know if this is available in Australia ? Even though at the beginning I could only do simple hand exercises etc it helped my frame of mind that I could do something positive to help myself. I did get dressed every day, even though it was painful at some points , as again it gives a feeling of planning to the day. I have to admit that as the pain has lessened I have felt better able to cope and feel positive in the face of fatigue.i just plan extra sleep into my days and weeks out of necessity!

    Do tell the rheumy what you are feeling.

    i do hope you find your own ways of coping and find some support during this time.

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  • Posted

    Hi Susan,

    I am 40K south of Melbourne, where are you??

    I have palindromic & osteo arthritis as well as a little fibro & lyme thrown in for good measure & have been seeing a Dr here who is well versed in a variety of treatment paths.

    As for  me I have been using antibiotic therapy for about 8 yrs now & although recently I did try mtx & arava (only for a very short time) because I found I was severely allergic to both and because I am also allergic to sulfa there is nothing in the conventional sense that they can give me ... I only tried the convential 2 meds because I wanted to stave off any issues with my joints.

    I have been relatively pain free for most of every year.

    Winter is a terrible time for us with arthritis, with the cold and changing weather conditions which exacerbate the aches & pains.

    If you want I can let you have her ph number (she treats patients from the far north to the south), but because of our laws you would have to come and see her for 1 appt - thereafter she can treat via phone & will be able to send you any scripts you need.

    Just let me know, & if I can be of any support let me know.

    Maz-Aust

     

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