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Sickness symptoms from RA

Why Do I Feel So Rotten? Sickness Symptoms From RA

It’s been a rough few months with an increase in fatigue, a noticeable lack of energy, difficulty sleeping soundly, and low motivation levels. It just feels like I’m sick all the time. This recent episode caused me to investigate why I felt so bad and I stumbled upon something scientists call “sickness behavior”. The best way to understand this feeling is to think about what it’s like while fighting an infection like influenza or pneumonia.

Why RA makes you feel so ill

In summarizing the source and symptoms of sickness behavior, researchers Dantzer and Kelly (2007) stated,

It was subsequently shown that physiological concentrations of pro inflammatory cytokines that occur after infection act in the brain to induce common symptoms of sickness, such as loss of appetite, sleepiness, withdrawal from normal social activities, fever, aching joints and fatigue.1

Such responses by the body are thought to be part of the recovery processes to illnesses. The body is likely preserving resources and energy in order to fight off the sickness.

Cytokines and RA

According to Dantzer and his associated colleagues, it was reiterated that sickness behavior could be brought about by proinflammatory cytokines. They stated,

“The behavioral repertoire of humans and animals changes dramatically following infection. Sick individuals have little motivation to eat, are listless, complain of fatigue and malaise, lose interest in social activities and have significant changes in sleep patterns. They display an inability to experience pleasure, have exaggerated responses to pain and fail to concentrate. Proinflammatory cytokines acting in the brain cause sickness behaviors.” (Kelly, et al., 2003)2

The cytokines that are involved in autoimmune diseases like rheumatoid arthritis are implicated in sickness behavior (Dantzer et al., 2008).Increased levels of these cytokines are observed in patients with RA. The same symptoms are also observed in patients with other diseases that involve the immune system such as AIDS, coronary heart disease, cancer, and systemic infections (Dantzer, et al., 2008; Myers, 2008).4,5 In one study, sickness behavior was even observed in volunteers who received a typhoid vaccine that increased the levels of inflammatory cytokines in the blood (Brydon, et al, 2009).6 People might act like such symptoms are “all in your head” but there are biochemical reasons behind these symptoms.

The link between these cytokines and the symptoms may involve “crosstalk” between the nervous and immune systems (Jin & Fall, 2013).7 In characterizing the ultimate impact of this crosstalk, Jin and Fall stated,

“Immune upregulation and excessive cytokine production can lead to clinical symptoms and conditions referred to as ‘sickness behaviors.’ Symptoms of sickness behavior include fatigue, difficulty concentrating, sleep disruption, anxiety, and depression. These symptoms often accompany known immunological conditions such as autoimmune disorders.”

Cytokine sickness behavior is linked to depressive symptoms and this occurs in both infectious diseases and inflammatory chronic diseases (Chang, et al, 2009).8 Emotional issues and difficulty with cognitive functioning and are quite common in RA are can be directly linked to the overproduction of cytokines.

In autoimmune diseases such as rheumatoid arthritis, there is an increased production of certain inflammatory proteins called cytokines. They include tumor necrosis factor alpha (TNFa) and interleukins IL-1, IL-6, IL-17, IL-12, and IL-18 (Bingham, 2002).9 Many commonly used biologic treatments for RA target these cytokines. For example, TNFa inhibitor drugs include Enbrel, Humira, Remicade, Cimzia, and Simponi. Actemra targets IL-6 and Kineret targets IL-1. Other RA treatments target associated parts of biochemical pathways that involve immune system parts and these cytokines. The idea is that if overproduction of these cytokines can be blocked, then symptoms of RA such as joint destruction can be controlled. In addition, these treatments may assist with reducing fatigue experienced by RA patients (Pullen, 2014)10. All of this makes sense in light of the sickness behavior theories discussed above. My rheumatologist once told me that the first sign a biological treatment was working was the patient experienced more energy. The opposite may also be true – if prolonged and increased levels of sickness symptoms are present, then treatments may not be working.

There are several key takeaways from this link between autoimmune disease processes and sickness symptoms. Don’t feel guilty if you feel these symptoms. They are a normal and biological part of the disease. It’s not just in your head. Speak to your doctor if emotional and mental symptoms remain persistent. There are medical treatments that may help. Pace yourself if sickness symptoms are present. Finally, if sickness symptoms are persistent over time, speak to your rheumatologist about the potential lack of effectiveness of your treatment plan.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. http://neuroschoolrome.univ-lille1.fr/faculty/dantzer/bbimmunity07.pdf
  2. http://www.sciencedirect.com/science/article/pii/S0889159102000776
  3. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2919277/
  4. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2919277/
  5. https://onf.ons.org/onf/35/5/proinflammatory-cytokines-and-sickness-behavior-implications-depression-and-cancer-related
  6. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2637301/
  7. http://www.townsendletter.com/June2013/neuro0613.html
  8. http://link.springer.com/chapter/10.1007%2F978-0-387-84851-8_9
  9. http://www.jrheum.com/subscribers/02/65/3.html
  10. http://www.medscape.com/viewarticle/834307

Comments

  • FurryCAT47
    2 months ago

    Most food is repulsive to me. I just had an episode of achiness, fever, and very sleepy. I have had RA for 10 years. But, this is the worse I have felt. Maybe, I had the flu? I am so confused.

  • NPEOttawa
    1 year ago

    I sent this article to my husband and asked him to read it because it explains me so well at the moment. Thanks for it.

  • Monica Y. Sengupta moderator
    1 year ago

    Thank you for sharing the article, @npeottawa!! I am sorry you’re feeling so rotten…Is there anything that helps alleviate the symptoms? Thanks for commenting! ~Monica

  • NPEOttawa
    1 year ago

    I haven’t found anything very specific that helps. I do the things that I’m sure many of us do. I pace myself, I indulge myself a little, I distract myself, I try not to feel guilty and like I’m a tedious nuisance to others, and sometimes, I come across a post that makes me know that I am understood, and not judged, and not alone, and that is what helps the most.

  • Hopefull
    1 year ago

    Thanks for this info it help me to understand why I feel so bad . I am hopeful that once I get to see a rheumatologist I will start feeling better thank you again

  • Monica Y. Sengupta moderator
    1 year ago

    Hey @hopefull! Thanks for reaching out. So from your comment can I assume you have not yet been on your first appointment? If this is the case, I thought you might like these article: https://rheumatoidarthritis.net/living/what-to-expect-at-your-first-rheumatologist-appointment/ and https://rheumatoidarthritis.net/living/being-the-right-patient/

    Please reach out if you have any questions or just need some extra support! ~Monica

  • warriorwoman
    1 year ago

    Thank you for this post. I have been feeling rotten for two solid weeks, and also feel like I am losing my mind. I can’t imagine feeling like this all the time throughout the course of RA and even after treatment (which right now consists of one appointment and one blood test, and one additional appointment weeks from now).

  • Monica Y. Sengupta moderator
    1 year ago
  • Monica Y. Sengupta moderator
    1 year ago

    I am so sorry you’re feeling like this, warriorwoman!! Please know you’re not alone and welcome in the community any time you need support.

    I don’t know exactly what you mean by “losing my mind” since that means different things for everyone so I thought you might enjoy this community-driven article where members shared how they would describe their RA in different circumstances (ie like what type of animal or tv show!) I find it helpful, relatable and sometimes good for a chuckle when I’m feeling overwhelmed with my own RA.

    Please reach out any time and thank you so much for commenting!! ~Monica (RheumatoidArthritis.net Team)

  • hburks1977
    2 years ago

    Andrew great article I did know all of these facts however it’s great that you are providing this information to individuals that may not realize how the medications and the effects of the ra contribute to all of these things the overall feeling of sickness excessive fatigue depression increased anxiety pain stiffness exhaustion you have the disease symptoms and then you have the side effects from the drugs that compound the issue, and no is not in our heads and good doctors know that malise is a common symptom

  • terryf
    3 years ago

    I just did a Google search for ‘ra feeling rotten’ and there was your article! It makes total sense of the way I’ve been feeling for the last week or so. It’s eight months since my first rituximab infusion, maybe the effects are slowly wearing off. Rheumatology appointment in a week or so so maybe they will help.
    Thanks again for this article – good no know I’m not turning into a neurotic wreck!

  • SharonTurlington
    1 year ago

    Terry, I too was happy to read about the mental aspect of RA. I was spending a great deal of time thinking about my pain and becoming someone not pleasant to be around. Or that is how I felt because I just feel so sick and full of pain constantly. I will be taking my first dose of Remicade this week and am also concerned about how I will feel afterwards. Is Remicade the and Rituximab the same medication? If so would you mind sharing with me how you feel following your infusion?

  • Jennifer
    4 years ago

    This is the WORST part of RA For me. I can handle the pain better than the chronic “feeling like crap” Sorry but that’s how I feel

  • PamelaP
    8 months ago

    I totally agree with you. This “Forever Flu” is impossible to deal with. I just go to bed and tell anyone who asks that I’m having a really bad day.

  • Erin Rush moderator
    4 years ago

    Don’t apologize, Jennifer! That’s how you feel! Thank you for sharing. I bet you’re not the only community member that feels this way. Thanks! Erin, RheumatiodArthritis.net Team Member.

  • Darla
    4 years ago

    Thank you for explaining , in an easy to understand way, the odd, flu like sick
    feelings I suddenly develop. Managing ok, then I feel an invisible blanket of tiredness. Pain increases, foggy mind, and just want to curl up and do nothing.
    Guilt sets in for not wanting to work on anything. Depressed remembering how
    I used to multi-task.

  • WintersNoni
    1 year ago

    Darla, I feel the same way as you do. “…an invisible blanket of tiredness” is such an appropriate way of describing how we feel. Many times I DO curl up and do nothing. Or sit and do nothing (except iPad or laptop). And I always feel guilty. Every day. It doesn’t change anything though, so I’m thinking of giving it up. My husband is 15 years my senior and runs circles around me. Thankfully he has no resentment toward me, and continually attempts to understand what it is we go through with this disease.

    I don’t know how long you have been struggling, but it has been almost 10 years since I was diagnosed. I used to be an avid outdoorswoman – camping and backpacking, horseback riding, swimming, etc. All that is gone now, except for upper body swimming. It took me a couple of years to grieve for what I had lost. I think it is a valid thing to have to go through. It’s like part of me died and now I am getting to know and define this new self, and set realistic goals (some days just walking to the mailbox is enough!). I am learning to focus on something good about each and every day, and to be kind to myself!

    Don’t give up!

  • jaide winn
    4 years ago

    This is a very good article, and it describes me and how I feel most all the time. Fatigue and pain rule my life, and it is very frustrating. I have been on Enbrel, Remicade, and now on Actemra. When I started Enbrel, my doctor said, “you are going to feel like a new person”. I was very hopeful, but it wasn’t so. I can barely tolerate watching the RA commercials that make it seem as though you take the medication and you get your old life back. It may work like that for some, but not for me. I appreciate you saying in the article not to feel guilty for feeling this way. I do feel guilty much of the time. I try to push through the “sick feelings”, but it is so hard, then I am usually down even longer afterwards. And, it is so true, that if you have not lived it, then you really don’t know what it is like. This disease leads to a lot of loneliness. Everyone has a suggestion, but until you live with it on a daily basis, then you have no clue what life is like with autoimmune disorders. Thank you again for writing this article. It gives us knowledge and lets us know that we are not alone with this daily “sickness” feeling.

  • Jennifer
    4 years ago

    Nailed it!

  • rhonda
    5 years ago

    Thanks for the article Andrew. I am relieved to know I am not the only one feeling this way. sometimes I think If I tell myself I feel good enough I will, that has failed to work. I started humira about 5 mo. ago after being on Enbrel for about a year. When I started Enbrel I thought I had found the wonder drug, it increased my energy and my pain was gone. It worked for about 9 mo. then suddenly stopped working. humira has yet to make me feel any better at all. I am hopeful my next dose may be the one that starts working. A few more months and then its off to another. The pain, stiffness and swelling is bad but I think the over all bad feeling is the worst part of RA. thanks for sharing I enjoy your articles. Good Luck

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Rhonda, glad you like my articles. It’s hard when treatments stop working. I hope Humira does the trick for you.

  • Nan Hart moderator
    5 years ago

    Absolutely fascinating Andrew! I am always looking at new and interesting facets of RA but this one was totally new to me and makes so much sense. Your concise and very clear explanation was terrific! Great article. Nan

  • Carla Kienast
    5 years ago

    Hi Andrew: I love your articles, usually because they provide the research behind the way so many of us feel. When I started on my latest biologic, one of the first things I noticed was that, even though I still had some swelling and pain in my joints, I generally felt “better”. I didn’t really have a way to describe it, but now I understand why. Hope your life calms down and you feel better as well.

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Thanks Carla. Hope that Kineret works for you!

  • Kim
    5 years ago

    You pretty much described my life for the last month. The symptoms seem to be getting worse, but I am holding out that “tomorrow” I’ll feel better. The guilt at not being able to perform up to my normal level can be overwhelming and extremely frustrating. I don’t do well with idleness, and always have to keep myself busy. The problem is my body just doesn’t want to cooperate. Thanks for another excellent post.

  • Andrew Lumpe, PhD moderator author
    5 years ago

    It is frustrating. Somedays it’s a good thing just to get in a couple of productive hours. Glad you liked the article.

  • Wren moderator
    5 years ago

    You couldn’t have timed this post better, Andrew. I’ve been fighting “sickness behavior” for quite a long time, now, to varying degrees. But for the last five months or so, it’s been getting much more intense.

    It’s easy to blame and berate oneself for feeling this dull malaise all the time, and I’ve often wondered if it was “all in my head.” It’s good to know that there’s some science out there that actually explains it.

    It also explains why I continue to feel this way, even as I inject my biologic DMARD each month. It’s clearly not working. So, when I see my rheumatologist later this month, we’ll seriously discuss moving on to a new treatment.

    Thanks for putting in all the hard work of making this more clear and understandable! 😀

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Sorry you’ve been feeling down Wren. Hope you get your treatments tweaked and find some relief.

  • Carolyn Haney
    5 years ago

    I apologize for posting my comment numerous times I have no idea how that happened. Would someone please tell me how to delete them.

  • Andrew Lumpe, PhD moderator author
    5 years ago

    No problem Carolyn. I’ll take care of it.

  • Carolyn Haney
    5 years ago

    Thank you, Andrew for this very informative and thought provoking article. You described exactly how I feel most of the time. I have a question that I hope isn’t to broad concerning stress induced depression and pain. Would you consider emotional feelings such as sadness,shock,grieving,excessive worrying to be a trigger for the “sickness symptions”? Within our family during the months of Dec. thru March we have suffered the loss of our unborn grandchild, a friend of 20 years passed suddenly, my little brother passed away unexpectedly on my birthday, my husband’s little sister passed away suddenly and last night our young son’s “Nana” passed away suddenly. I am to the point after grieving all night that I can’t hardly get out of bed I feel like I’ve been beaten I can’t eat or sleep and I’m very anxious. Do these symptions fall under the description of sickness symptions? Could you please elaborate?
    Thank you,
    Carolyn Haney

  • Andrew Lumpe, PhD moderator author
    5 years ago

    Thanks Carolyn. It’s hard to say what triggers what. Probably a vicious cycle. Sounds like you’ve had a boatload of stress and life changes. You should chat to your doctor about this as there are treatments that can help you get through it all. Take care of yourself.

  • Connie Rifenburg
    5 years ago

    Andrew, this was such a great article. Yes, very technical, but the whole of the article was a clear explanation of why we just feel ‘ick’ sometimes. Can’t place a finger on it because it’s not the ache or severe pain of a flare – but a feeling like you could sleep for hours and not feel rested. I’m not at this point (thank you God)right now, but have been there many times in the past 13 years. Thanks for giving me an explanation for why I feel this way so next time (and w/RA there seems to always be a “next time”) I’ll at least understand what my body is trying to tell me. Thanks.

  • Andrew Lumpe, PhD moderator author
    5 years ago

    I hate that feeling of waking up and still feeling tired. Glad you found the article helpful.

  • Shirley Sanders
    5 years ago

    Thank you so much for all the wonderful information. The things your rheumatologist doesn’t educate you on. I have been off meds for 8 months as I am one of those that gets really ill when I contract a disease. I will be starting in on Remicade soon and hope all goes well with this medication. Have been on all of the other biologics with no luck. Damned if you do and damned if you don’t.

  • Andrew Lumpe, PhD moderator author
    5 years ago

    I think that the sickness feeling is something one has to experience to truly understand. Hope Remicade helps you.

  • Connie Rifenburg
    5 years ago

    Shirley, May I ask if you have tried Xeljanz yet? I am considering starting that drug – a biologic, but administered in a pill form twice a day. I stopped Orenscia in Jan. and have been in a type of “remission” because all my markers are normal for the first time in 13 years. Not one time in all those years did they all show normal. So, I’m wondering if I’m ‘floating’ on the Orenscia right now, and it will wear off, so should I start right away on another biologic like Xeljanz or not do anything until I start into a flare again? Decisions Decisions… I can related to the Damned if you do and damned if you don’t feeling right now. Hope Remicade works for you. I went through 2 biologics before Orencia and it took 8 months before I felt any help from Orenscia. Now 3 yrs later, I’m in a good place. What to do ….. what to do. I feel like Pooh bear. 🙂

  • Kellie
    5 years ago

    Thanks, Andrew. I love your articles. I just changed medications from Enbrel to Humira. I had about 8 months where I just didn’t even want to get out of bed. It wasn’t just the pain. It feels like the flu sometimes. Plus I definitely have muddled thinking. Hard to concentrate sometimes.

    Thanks for helping me to feel normal!

  • Andrew Lumpe, PhD moderator author
    5 years ago

    I appreciate the kind words Kellie. Hope Humira does the trick!

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