“Fatigue isn’t typical with RA”

Posted , 11 users are following.

Hi all, I guess I am just here to grouch today.

I saw my rheumatologist on Friday to complain that I have suffered bouts of fatigue, as well as fluctuating pain in the fingers, hands, wrists, and feet. My CRP has been normal for months and I have no noticeable swelling. I have never had crazy amounts of swelling, but have had virtually nothing noticeable since being on DMARDs for a while.. 

What got to me was that he commented that fatigue is not typical with RA. He stated it as a fact, not modified with anything like “in my experience/opinion”.

I was surprised to hear him say this. My first rheumatologist had not questioned my describing fatigue as a symptom, he’d just said it’s a symptom that doesn’t necessarily respond to DMARD treatment.

I have been stewing over it for 3 days. It is contrary to so many descriptions of symptoms that I’ve read and it has made me question his opinion.

He was doubtful or maybe puzzled about my continuing pain. I don’t claim it is extreme pain, I just want to know if I should accept a baseline of pain, and to just expect to keep taking pain relief indefinitely as well as DMARDs.

He then suggested is is possible I don’t actually have RA, and that one can be seropositive and not have it. More uncertainty... it feels like a step backwards to me. 

He didn’t air any speculation about what I might have.

His next step I understand is to reassess what is going on. I have to get ultrasound scans later this week. He also mentioned MRI but didn’t define his plan for that.

I had ultrasound scans in April this year and the rheumatologist and technician were both satisfied that what they saw indicated RA.

Inconsistency is hard for me to handle.

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  • Posted

    Hi I would say fatigue is very common with RA and most autoimmune diseases and most chronic illnesses, when you think about it with RA your body is fighting a chronic disease which takes energy, according to my Rheumatologist its the norm to have fatigue, many times I have felt totally done in.
  • Posted

    Fatigue is a symptom of RA- just add my voice to this too from the uk!

    the enigma is low inflammation levels and no swelling. Are you still on prednisolone as that lowers inflammation without holding back the disease ? If you are, ask to come off it. I was also told only to have paracetamol-

    you should expect to be almost pain free as that is remission and he has a lot of options still for treatment. I had methotrexate , then 2 more DMARDS were added. Then  I was given a biologic and I have to agree with another post that s when the fatigue lifted.  I can tell when it's wearing off by the return of fatigue and painful joints.

    nras is a good website - you prob have similar in NZ . Also arthritis research website. ( which describes other diseases similar to RA)I would go armed with info and a diary when and which joints are painful and patterns of fatigue. 

    All the best

    • Posted

      Thanks Rowbirdie. I have not had prednisolone since the end of December 2016.  I don’t know where he’s coming from with the statement about fatigue. The rheumatologist has now sent out a consultation note for my GP and he does not mention me talking about fatigue. Instead he writes “We had a talk about stress and poor sleep in relation to musculoskeletal pain and it does seem that this may be relevant for him at this stage“. Perhaps true, but this was a direction he led the discussion as an alternative to acknowledging fatigue. 

      Now my record conforms with his perspective that fatigue is not an symptom. Q.E.D. mad

      I am not inclined toward missionary work. If he has a view, he can keep it.

      I shall resign myself to shopping for another specialist referral and get off this guy’s books. I can’t believe I’ve come to this. I never thought I’d be that kind of patient...

  • Posted

    Update, report on scans:

    "Joint effusions were identified in the ring, index and little finger MCP joints of the right hand and the index and ring MCP joints of the left hand. There is possibly some fluid in the interphalangeal joint of the right index finger, the index middle and ring fingers of the proximal phalanges of the left hand and rather unconvincingly the middle and ring PIP joints of the left hand.

    Some evidence of hyperemia in involved joints.

    The bone surface appears slightly irregular and there may be erosions present, but erosions are difficult to objectively confirm on ultrasound.

    Conclusion:

    The presence of joint fluid suggests there may be an element of synovitis but no gross synovial thickening has been seen. There may be erosions, but ultrasound should not be regarded as a substitute for plain films for assessment of erosions, and plain films of the hands would be encouraged."

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