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Constant Tiredness?

Posted , 9 users are following.

linda17563
linda17563

My sister was diagnosed 2 years ago with RA, she takes Sulphsalazine, but although she is still in some pain, which vaaries from day to day, her biggest problem is constant tiredness....she yawns all day long!...and given the chance would sleep too....she already has 10 hours sleep!....is this a normal thing for RA patients.....doctor says she dosen`t know why she`s like this.  She has underactive thyroid which she has had for years, and is in "normal" range.  Thanks for any suggestions!

0 likes, 15 replies

15 Replies

  • linda23834
    linda23834 linda17563

    Posted

    Hi Linda, I tried taking Sulphasalazine for my RA. But unfortunately my stomach wouldn't tolerate it. I also have medication for under active thyroid. I once complained about fatigue and feeling so tired and queried if it was the meds causing it to my Rheumatoloy Nurse. She said it could be meds,or RA caused fatigue and that I had to pace myself.

    Presume your sister is having regular blood tests to make sure her body is tolerating the Sulphasalazine. Maybe she needs to talk to her Rheumatologist or Specialist nurse. Wish I could be more of a help. Im sure there will be someone on this Forum that can give more advice and take Sulphasalazine.

  • syedq51
    syedq51 linda17563

    Posted

    Hi Normally when u r on RA medication I am not sure if long sleeping hours is due to any reactions of the medicines ur sister is taking. I have gone through very tough time but have never experienced this. I dont know if it is due to Sulphasalazone. Check the other medicines also.
  • mike42824
    mike42824 linda17563

    Posted

    Linda, I've had the same problem since being diagnosed with RA about 3 yrs ago. I made an appointment with my GP and, having looked through all the blood tests I've had, she said "Unfortunately tiredness and fatigue come with the territory I'm afraid." As many others have commented, "try and pace yourself" which is easier said than done.

  • Guest
    Guest linda17563

    Posted

    Hiu linda17563.

    Fatigue "is" one of the symptoms of RA.....i am not sure if the doctor you mention is just a GP or a Rhumetologist..?  I am now in to 27 months of having RA and trust me this is a big problem with me too, i also sleep 10-11 hours and still wake up tired. At any time of the day sitting on the sofa i could quite easeirly nod of at the drop of a hat. So don't worry to much about this it is normal with RA.

  • EileenH
    EileenH linda17563

    Posted

    As someone has already said - it comes with the territory for people with chronic illness, espcially autoimmune sorts.

    I wrote a post on my home forum about pacing - there are two links in it, the second is particulalry good:

    https://patient.info/forums/discuss/pacing-in-chronic-illness-some-useful-links-that-explain-it-and-how-to-do-it-516000

    Also, google "the spoon theory by Christina Miseriando" and "gorilla in the house by batsgirl" - two rather more light-hearted ways of looking at living with chronic illness. If you google "13 types of fatigue" you will get links to an article about fatigue in Sjogrens - but it applies just as well to any chronic illness.

    It is possible that even though her blood markers are "in normal range" your sister might do better with a slightly higher dose of her thyroid medication - a lot of people do. However, persuading a doctor to try it can be very difficult! My cousin's hospital doctors knew she did better with just a bit more - but the GPs where she moved to wouldn't have it. Until she got a letter from the hospital...

    • linda17563
      linda17563 EileenH

      Posted

      Thanks Eileen and others for replying....I have given my sister the "spoon theory" after seeing the suggestion on the PMR forum....

      ?My sister is  amazed at the  "pace your self", because she thinks she does so little now....not too mobile because of stiffnss and pain....this is what puzzles us.....

      ?She has recently had blood tests...and the thyroid was "normal" but as you say, it may be for the doctors, but not for the patient.....in the USA I believe patients are given thyroid treatment after blood tests drop to a higher level than we have to wait for.....(if that makes sense?)  it has to be lower here.

      ?Thanks anyway, and it seems some people on here are the same.....and will tell her next time to tell Rheumie nurse, in case it is the drug...Thanks again....

    • EileenH
      EileenH linda17563

      Posted

      When you are stiff and in pain everything you do requires so much more effort - I remember my 5 years of PMR pre-pred. Everything hurt - the difference on pred was like a rebirth!
    • linda17563
      linda17563 EileenH

      Posted

      Yes, I remember my 15mg that I started with nearly 6 years ago....I was like a car with a new engine.....my husband was right though when he said....this can`t last!......now things sometimes can still be a huge effort, still struggling to get lower than 9.5 after all this time....but I`ll get there with your slow method I`m sure.....
  • caz53535
    caz53535 linda17563

    Posted

    Hi, I also suffer with tiredness, it is my worst symptom to date, as others have said she needs to pace herself.   I have also had loads of blood tests but they can't find any cause for it (I am on methotrexate for RA).

    There is an article about spoon theory which resonates with me.   

    Love, Caz

    Moderator comment: I have removed the link as users can easily find the information using a search engine rather than linking to a specific website. If users want the specific link use the Private Message service to exchange.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • lyn1951
    lyn1951 linda17563

    Posted

    Tired - part of the symptoms of RA I'm afraid.  i wonder though if she is getting some kind of reaction to the Sulphsalazine, it disagrees with me as do other sulpher based drugs, so I am on MTX, and 10mg of Leflunomide, usual dose of Leflunomide is 20mg, but I cannot tolerate that at all, caused extreme blood pressure.

    Is she still very stiff and sore with her RA, and how high is her ESR & CRP, my rheumo judges my levels of severity of my conditon by the results from my bloods tests, especially the ESR & CRP, last time I visited I said to her they must be high, she looked up the result of the blood tests, and said you are right they are high, ESR was 77, and CRP 34, that is way outside of normal, I was very stiff in the joints, and suffereing alot of pain.

    As I am typing this having swallowed pain killers myself, what is she taking for pain, is it also making her sleepy, anything with Codiene, or Morphine, even artificial morphine will make you feel very tired, and constipated.

    • linda17563
      linda17563 lyn1951

      Posted

      Sorry to hear of your struggle....it always seems a battle with disease and side affects of drugs....

      My sister only takes Celebrex when really necessary.

      Her blood tests done recently were deemed ok....

      ​She has tried MTX but it raised her blood cells too much and was taken off....her red or white blood cell readings (not sure which) are always at the peak 15....she will have to discuss this with rheumie at  next appointment, to see if this has any bearing on her fatigue.......puzzling because she does so very little!

      Thanks for that

  • rachel12090
    rachel12090 linda17563

    Posted

    Hi Linda,

    I thought this site may help you answer some questions you're having

    Hope it helps and hope you feel better! 

    Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

    http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • linda17563
      linda17563 rachel12090

      Posted

      Thank you Rachel, but the moderator has removed the link you sent me.  Would you mind sending me the link, or address in a Private message?

      Would be much appreciated....thank you for taking the time.....

  • JLADY99
    JLADY99 linda17563

    Posted

    I have had periods of extreme fatique, to the point of being too tired to drive, some days I would wake up and feel like I haven't fully woken up and that could last all day. Complete brain fog, and can't function, have to lay down.  But these periods are only every now and then, and have been more in the summer which no one can figure out.  I do have RA, but mostly hand deformity but not regular joint pain.

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