Sheri73 Member Posts: 1
edited 28. Nov 2023, 14:06 in Living with arthritis

Hi all, I'm Gaynor, I'm 48 and I was diagnosed with Rheumatoid arthritis 13 years ago. I've been on methotrexate for 11 years. My worst thing currently is fatigue. I'm exhausted and have no energy. My rheumatoid blood levels are stable but I feel awful. Had bloods to check for anything else and all was normal. Is it usual to feel like this, I'm really struggling and it's having such a bad affect on my life 😢😢😢. I don't know what to do.


  • stickywicket
    stickywicket Member Posts: 27,712

    Hi Gaynor. I wish I could help. I've had RA for most of my life but only experienced such fatigue when flaring. You say your inflammatory levels are OK. I presume your regular blood tests also show that your haemoglobin levels are OK.. I've no medical expertise at all. The only things that come to mind as possibilities, from years on these forums, are:

    1. How are your Vitamin D levels?

    2. Has your thyroid been checked?

    3. Could it be Chronic Fatigue Syndrome?

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • David55
    David55 Member Posts: 2

    Hi Sherri I’m a new guy very first post I was diagnosed with rheumatoid arthritis and osteoarthritis 9 years ago and it’s been a hard learning curve trying to live with it don’t let it control you the fatigue is the worst pain can be helped but not eradicated but the meds help hot showers help me try to plan your day around the tiredness always try and do something you want to do during the day that you want to do hope this little message helps

  • Ellen
    Ellen Moderator Posts: 1,628

    Apologies for the hijacking of you thread @Sheri73

    I just want to nip in and thank @David55 for his kind first post in response to your post. Some excellent advice there David. I hope you will take a look around the Online Community and join in if you feel comfortable.

    Our most popular category tends to be

    Or you may wish to start your own thread here and introduce yourself.

    Either way you are very very welcome!

    Best wishes


  • Lilymary
    Lilymary Member Posts: 1,740
    edited 14. Sep 2021, 13:54

    Hi Gaynor, whie I don't have experience of RA. I have both OA and was diagnosed with "mild" CFS about 4 years ago (mild as in I could just about manage to work part time, but had no energy for much else). The OA sneaked up on me quietly and appeared with a fanfare 18 months ago, by which time I already needed a new hip, and various other bits of me are trying to get my attention. We never did get to the root of what triggered the CFS, but looking back on it I wonder if at least one of the causes was undiagnosed OA, which looking back had been building up for nearly 20 years but started creating a mild fuss also about 4 years ago.

    As soon as the pain relief/anti inflammatory treatment started for the OA, my brain fog lifted a little, that or sheer dogged determination to battle on, but crushing physical fatigue was a daily event that I had to plan for. Then I came off these drugs post hip replacement surgery, and the CFS descended onto me with avengeance like a thick heavy blanket of fog, possibly also triggered by the surgery and rebuilding process going on in the background. (I lost 8 pounds in the two weeks post surgery despite eating more than normally, which gives an indication of the effort my body was putting into healing, now all piled back on again of course...). This is now finally lifting, five months later, but I still have to be careful.

    I offer this information because our bodies will constantly find new ways to knock the stuffing out of us without us being able to isolate the cause. Nearly every medical condition seems to list fatigue as a symptom, and most drugs list it as a possible side effect. Add to that hormones and life event stressors, and the picture gets even more complex.

    Sometimes it's possible to pinpoint some of the most likely suspects, and tackling the root cause can be more effective than managing the symptoms. But where that's not possible (and it usually isn't) it's a matter of planning and prioritising how you use your ration of energy each day, each week, and sometimes, each hour. If you push yourself to burn out, it will take three times as long to recover. Be kind to yourself, be prepared to let things slide, timetable in recovery time, eat well, sleep as much as you need, and take pleasure in small things. For things that you enjoy that you have to let go, find something new and easier to replace them. But most of all, don't feel you have to keep up with other people. They're not having to deal with what your body is throwing at you.

    You may find some of the tips in this link helpful.

  • frogmorton
    frogmorton Member Posts: 29,419

    Hi @Sheri73

    You do have my sympathy. The fatigue you talk about is unique I had never known anything like it until my first Inflammatory Arthritis flare.

    Now as a general rule I am a lively 'awake' sort of person, but flares floor me and I mean really floor me. Sometimes it seems to me our bloods do not reflect the level the disease is actually affecting us.

    Lilymary gives some great advice about 'pacing yourself' prioritising and letting some things slide. I am not sure that you can always power through this sort of fatigue. I like David's suggestion about making sure you do something you enjoy every day if you can.

    My only suggestion is to make time for naps (set alarms if you worry) and if it persists and you have had the extra tests stickywicket mentions then maybe you will have to keep some sort of record of your levels of exhaustion and hours asleep/awake as evidence for your Dr that things aren't right.