“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

    Frustrating or what! I might also think he didn’t  believe me which wouldn’t  help. I remember when I first started on Humira   I felt I could jump over the rooftops. Fantastic! I think it was only then I realised just how exhausted I’d been.  You only need to read other posts on here to know it is a symptom.  An example of an expert who knows all the answers but not how you feel. Good luck. Carol
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  • Posted

    Hi Blair, you must be feeling really confused and frustrated by what your Rheumatologist is saying. I was told that fatigue is part of the illness, I have Seranegative R.A.  Was also told that each DMard comes with side effects, but help to slow down the illness.  That this illness can’t be cured, but slows down the progression and when 1 drugs stops working, you try the next probably stronger one.  I hope you get some answers with the scans. Seems strange that you were told that on previous scan they showed changes.  It seems that we are given different information each time we go to the hospital.  Hang in there until you get some results. 
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  • Posted

     Hi Blair

                Don't know if you have only seen this new rheum a couple times and he is trying to make sure the diagnosis is the right one but sure sounds like RA according to symptoms.   I know that fatigue was my only sign of RA for quite awhile before the pain started.   I did a search on RA symptoms today and found on medicine.net that fatigue is a very common symptom in all stages of RA.  So it would also bother me if my rheum said it was unusual.   

         I also have minimal to no swelling and CRP generally in normal range.   I assume you were satisfied with your former RA doctor but had to change rheum. for some reason. 

        From what I have read RA can be hard to diagnose.   It would have been so helpful if he had explained to you his reasoning for questioning the diagnosis   

    Wait and see what the new ultraound scans show.    Very frustrating for you

     

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    • Posted

      Thanks Gloria. It’s good to hear your experience. I was the same - fatigue started months before I had widespread pain. It concerned me, but at the same time it kind of crept up on me and I figured maybe it was just my poor sleep, apnoea, some symptom of depression. I was actually relieved when I started reading about RA and fatigue is referred to everywhere.

      Thanks for your advice. 

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  • Posted

    That is so frustrating! I wish sometimes these 'professionals' would put themselves in our position before they make comments. We've all been told, and experience, fatigue with RA. It's the most debilitating part of it (for me at least) we can take pain meds to reduce the pain and inflammation but this fatigue can be soul destroying. I must admit my rheumatologist was sceptical that I had RA until she did a bone scan with dye that showed massive inflammation in my hands, wrists, ankles and feet. Perhaps you could suggest they do the same for you. Good luck.

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    • Posted

      Thanks Mary. It is hard. I have been just trying to accept that sometimes it hits. Given that when it does, it is virtually irresistible, I don’t know what else I could do. I I have literally been at my desk at work and thought “I’ll just close my tired eyes a second” and woken when my head hit the keyboard. I used to be a person who could not even understand how anyone could sleep in the daytime. I used to mildly suspect “fatigue” was an excuse given by shirkers. Now I have painful restless nights and can sometimes be asleep in moments if I lie down during the day. OK I have been educated the hard way and my apologies to all I ever wronged. :-)
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  • Posted

    How frustrating for you.  Over the 25+ years I have had RA, I have regularly been asked by rheumatologists (and I've seen a few), how I am coping with the associated fatigue.  I am quite lucky in that it is not a massive problem for me, but it has always been part of our discussions at appointments.  I always used to think 'Am I supposed to feeling tired?'  I am one of the lucky ones and I am sorry that fatigue is a problem for you and many other sufferers.  My point is that the fact I am always asked how I am coping with fatigue definitely suggests that it is typical!  I sense your frustration.  It is also a pity that it has made you lose confidence in your consultant's knowledge and understanding.  Do you have a rheumatology team? I wonder if you could talk to somebody else, perhaps one of the rheumatology nurses, who may offer a more understanding ear and some more helpful advice? 

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    • Posted

      Thanks Esther for your thoughts. I should give you and Linda more context. 

      After my GP got my crazy high blood tests last year she referred me to a public specialist. There was a 6 week wait for that appointment. The GP meanwhile prescribed a course of prednisone under specialist advice, and gave me a 2 page printout on RA. I read quite a bit in 6 rather odd weeks of prednisone.

      I was confidently diagnosed by the specialist. 

      The New Zealand system (yes, hello from NZ) has as Esther describes, with a specialist nurse to contact quite causally for support etc. Actual rheumatologist appointments seem to take a month, otherwise you follow their schedule. I had 2 nurses in 6 months. I was happy when the first retired! The second was helpful. 

      At the end of 2016 my employer suddenly introduced free health insurance. By March, having felt ill on sulfasalazine and still hoping for my DMARD treatment to be effective, I asked my GP to refer me to a private specialist. As I now had cover, I would get a second opinion.

      The new rheumatologist first upped the mtx, then switched me to injection.

      I told my public specialist nurse and she sadly had to give me the boot as I was now a private patient and would be taken off the public books. So now I had no access to a nurse specialist! (I sigh).

      I had improved a lot. But when my symptoms became a little troubling, and I wanted to know what I should regard as a reasonable expectation, I called for an appointment with my private specialist. They would see me in a month!

      So I am not sure what I have gained, except to the insurance leeches. :-)

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    • Posted

      Thanks for this information.  It sounds as though you have been thrown hither and thither! As you stated in your initial post, it seems that the inconsistency in your treatment is the most difficult thing to deal with.  There is some comfort in knowing what you are dealing with and seeing a familiar face at hospital, someone who knows your history.  It seems an odd thing to do to question your diagnosis without offering any alternative possibilities. That must have left you with some anxiety.  I recall one doctor questioning my diagnosis (I rather imagined he was trying to be clever and spot something that nobody else had), but at least he did tell me what he was thinking!  I hope you eventually settle with a good specialist and that you receive some more helpful treatment and advice.  On the bright side, you do live in a beautiful part of the world...and heading towards summer! (I'm not jealous)!

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  • Posted

    I don't know anyone with RA who doesn't struggle with fatigue - it is pretty much a given with ANY autoimmune disorder. Glad he isn't my doctor!!!!!

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    • Posted

      Thanks for the comment.

      Yes it was a peculiar thing to hear. It isn’t a thing I had ever experienced before last year, beginning months before any RA related pain. I had never even heard of RA before I complained of so many points of pain. The weird creeping fatigue was just something I was puzzled by. I didn’t associate it with being physically sick.

      But as you’ll see from Esther’s comment, it is not completely consistent to all of us. I can only report my experience to him, so if he can suggest a different cause, that would be interesting to hear. 

      Unless he is in denial of fatigue as a real symptom... I was not feeling at my most argumentative on the day, but next time I will discuss this with him and see. I don’t feel like it is in my interest to persevere with a rheumatologist who somehow denies the reality of RA symptoms. 

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    • Posted

      " I don’t feel like it is in my interest to persevere with a rheumatologist who somehow denies the reality of RA symptoms"

      Just don't forget that feeling. Too many people do - and it really leads to a lot of tears when the doctor denies the reality whatever it is you have.

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