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I Am So Tired of Fatigue

I Am So Tired of Fatigue

Of all the things about rheumatoid arthritis I hate (and there are too many to list here), fatigue has to be one of the worst. RA-related fatigue is not being tired. You can relieve “tired” with enough rest. Instead, RA-related fatigue is the bone-wrenching, overwhelming feeling of wondering if you even have enough energy to breathe, much less move. It sucks all energy out of your body to the point that it is all but impossible to generate enthusiasm for anything. And there is no amount of rest, caffeine, or other remedy that has been known to cure it.

When I started my latest treatment regimen I told my rheumatologist I was doing better. The actual pain, stiffness and swollen joints hadn’t improved substantially but much of the fatigue had lifted and I felt so much better. I actually felt like I had the energy to want to do things.

Fatigue: the most misunderstood RA symptom

The Arthritis Foundation estimates that up to 98 percent of people with rheumatoid arthritis suffer from fatigue. The percentage grows (if that’s possible) if there are associated conditions such as fibromyalgia, obesity, or depression. In fact there is a lot of discussion (read “controversy”) about Chronic Fatigue Syndrome (CFS) which is often closely associated with fibromyalgia. A major problem with treating fatigue is that many of its symptoms, such as muscle or joint pain, can also be caused by other conditions which must be ruled out. The fact that fatigue often accompanies these conditions makes it doubly difficult to identify and treat.

Anecdotal evidence and personal experience tells me that many rheumatologists fail to address fatigue directly. Instead, rheumatologists tend to focus on the more measureable aspects of the disease: number of swollen joints, lab results, joint deterioration, restricted movement and similar metrics. I think part of this is because fatigue, like pain, cannot be objectively measured. Fatigue is subjective – a personal opinion of the patient – so there are no clear guidelines between patients or even with the same patient at different times.

Fatigue and disease activity

I believe the other part of rheumatologists not tackling fatigue head-on is that they believe if they can reduce disease activity, fatigue will also be reduced.

I personally have subscribed to that theory – make RA less active and the fatigue will also be less – so I was surprised to read a recent article that discussed several studies demonstrating that while biologics can be effective against disease activity (by a number of standard measurements), they aren’t always effective on addressing the debilitating effects of fatigue.

There are a lot of things that can contribute to fatigue. Among these are pain and inflammation and to the point that a biologic reduces those, fatigue can also diminish. However, other things can cause fatigue such as depression and sleeplessness which biologics do not address. Nor can biologics or other treatments reverse permanent joint damage which can cause pain which can cause fatigue directly or lead to sleeplessness or depression which, in turn, can contribute to fatigue.

Interestingly, some of the medications used to treat RA and associated conditions, also contribute to fatigue via having drowsiness as a side effect. These include certain antidepressants, pain medications, NSAIDs, some DMARDs and antihistamines. While drug-induced drowsiness is not truly fatigue, being drowsy or fuzzy-headed can aggravate the symptoms of fatigue.

Because there are so many causes of fatigue, there is no single answer. There are some medications that might help. For example, if fatigue is caused by anemia, sleeplessness, or depression, there are prescription medications that can address those things. Otherwise, it is largely in the hands of the patient to make lifestyle changes to counteract the effects and possible causes of fatigue: exercise, proper diet, and good sleep habits.

To me, the main thing is to convey my fatigue to my rheumatologist. It’s important that my rheumatologist understand that this is a major factor that affects my life and that one of my goals in treatment is to relieve it and reclaim my energy and enthusiasm for life.

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.

Comments

  • Larry Sawyer
    2 years ago

    Hi Carla
    fatigue has been my hobgoblin since 1979. looking trough my journal that I have kept off and on since i really figured out i was dealing with one tough hombre, I think fatigue is a consequence of hyper inflammation. My bride of some 40++ years is a Saint Kates RN and thus we can keep Kenalog around the house. When ever I am a crawl into a ball pile of pain she will give me a 40 mg shot and put me out of my misery. I have notices that with the decrease in pain their is a subsequent deliverance from fatigue, enough so that i began to track the correlation. it seems that the pain that creeps up on me over time drags a fatigue behind it. that sucks energy and life out of me. If I cut off the pain with a couple of percocets , the fatigue dissipates. If i let it build, the fatigue eventually over rides the pain and percocets cannot get at either the pain or the fatigue. my silver bullet is Kenalog. 40 mg and a good sleep. I no self reporting is mostly considered bs, but I am convinced that fatigue reaches a point where it is in charge and pain is the co rider. Just a thought. as an added whatever. I had a heart event Jan 14, Non ischemic cardiomyopathy, not colluded artery’s, not a torn valve. its a 30 percent ejection factor left ventricle, cardiologist says that inflammation is bad for my heart, the drugs I take are bad for my heart and RA is bad for my heart. I flunked the new RA inflammation test, flunked 3 ekg’s one left ventricle efficiency test and a stress test. so am in a kerfunkel, waiting to Mar 14 to see if i will stabilize enough to deserve a defibrillator. Seems RA has finally got to my heart. Other wise, brain still works and i enjoy reading your stuff. be well
    larry

  • Carla Kienast author
    2 years ago

    Thanks for the great info on how fatigue affects you. I have heard similar experiences from other people — how their fatigue follows pain then takes over. But, oh man, I am so sorry to hear about your heart situation. People think about RA as a joint condition, but it causes inflammation all over. In a kerfunkel, indeed. I will hold you in my thoughts and hope that you will come back after Mar 14 to give us an update. Hang in there!

  • Leslie914
    2 years ago

    I work full time & many days, by mid-afternoon, the curtain just starts to come down. I can literally not keep my eyes open. My mind & body simply shut down. I try to rest for a few minutes at my desk but that rarely helps. Add brain fog to the mix & it’s a terrible combination. I live for weekends, not because it’s leisure time, but because I can finally let my body rest. I’ve had RA for 25 years & the fatigue has definitely impacted my lifestyle for the worse.

  • Carla Kienast author
    2 years ago

    I understand. I had to retire from full-time work last year due to RA and a great deal of it was due to the fatigue. Just getting up and getting ready in the morning, followed by the morning commute was often more than I could manage. I’m glad you’re finding time to rest on the weekends. That’s not the whole answer but I know it helps.

  • Tich
    2 years ago

    I reached that point Leslie, and together with the pain I knew it was time for me to end my career. I had been paying for disability insurance available through my employer, and it was time to exercise that option. Now it seems like all my free time is used by Dr appointments, therapies, treatments and imaging needed to both treat my disease and to keep my disability. I feel cheated out of a retirement that I worked 40 years for. The treatments have helped, but new things keep coming up. We did find that my B-12 was low, but the shots for that don’t seem to help my energy much if at all. At least I can nap at home now. afternoon anemia can be murder for performance assessments.

  • 1dr5sw4
    3 years ago

    I am so tired of being tired. I work full time, a very stressful job, I am just overwhelmed all the time with feeling run down. As others have noted, it is not something visible so harder for others to understand. It is nice to hear from everyone, this is not in my head.

  • Carla Kienast author
    3 years ago

    It is easy to think it’s all in your head or to expect that rest will solve fatigue caused by RA. If we can’t solve your issue (I wish we could!) I’m glad we could lend some support. Delighted you checked in with us. Please come back often.

  • DottieD
    3 years ago

    Pain is subjective, and now the 10-point pain scale is standard in many medical encounters. We could agitate for a 10-pont fatigue scale, with 0-1 as glued to the mattress, all the way to 10 as marathon-ready. What are your thoughts?

  • Carla Kienast author
    3 years ago

    Dottie: As much as I hate that 10-point scale, I think your suggestion is brilliant! It would be great to quantify how we are feeling re: fatigue. IMHO this should be a standard scale for all rheumatologists as fatigue is such a common symptom for us.

  • Linda
    3 years ago

    I’ve struggled with very strong fatigue due to severe RA and I wanted to share a treatment option. A colleague with lupus suggested I ask my rheumatologist to prescribe “Provigil” or “Modanfil” to help with the fatigue. It has made such a positive difference! On good days I almost feel back to my normal self in terms of the fatigue (unfortunately not as much pain relief from 5 biologics I’ve tried). In any case, for those with severe fatigue it may be worth considering and discussing with your doctor.

  • Pat H.
    2 years ago

    I too have been prescribed Modafinil (aka Provigil) for RA fatigue, and have found it to be effective, in fact a game changer for me. The physician who prescribed it (sleep specialist who is prescribing it off-label, but with the approval of both my rheumatologist and pain management doctor – 200 mg, 2x/d) chastised me for NOT taking it regularly, asking me why I would hesitate and then suffer. I find it ironic that Carla comments “These drugs are “wakefulness” drugs … used/abused…to enhance performance… They are both Schedule IV controlled substance[s] requiring a prescription and have some serious side effects associated with them…” when, first, the RA drugs I take have far more serious side effects, and second, this drug actually is not especially subject to abuse in the RA demographic but has been studied and found to be effective for many folks with auto-immune disease related fatigue. For me, the fatigue I suffer is just as bad, if not worse, than the pain, in the management of my overall quality of life.

  • Carla Kienast author
    3 years ago

    Interesting. These drugs are “wakefulness” drugs used for things like narcolepsy and late shift work and have been used/abused to enhance performance for work requiring concentration like cramming for finals or doing a big sales presentation. They are both Schedule IV controlled substance requiring a prescription and have some serious side effects associated with them. As always, if you are considering something like this, discuss fully with your doctor.

  • Pwilcox
    3 years ago

    I am a relative newbie to RA having been diagnosed in Oct. 2015 after 18 months of going from Dr. to Dr. seeking a diagnosis for my pain (another story which I have posted on this website). While I like my Rheumatologist, I am beginning to think he measures all things by lab tests – and my inflammation level is different every visit. At my last visit he told me to start thinking about Biologics which would be IV injections in his office or injections I give myself. I was totally caught off guard because I thought I would be trying different pills before I went to that step. Currently I take Methotroxeate and Predisone (which I am cutting back on) and it seems to mostly control it. I have also developed bone spurs and tendinitis in my right foot and he says I do not need to see a surgeon (I am getting a 2nd surgical opinion anyway). This may not address your fatigue issue, but perhaps our RA Doctors have a difficult time seeing things from our perspective because they don’t have RA and how we are feeling really doesn’t affect them – they have hundreds of patients. I know most really care and want to help their patients , but I am finding it really frustrating to know what the right treatment is for me. I feel like I have to follow his advice, but what if he is wrong?

  • Carla Kienast author
    3 years ago

    Thanks for the response. First of all, this is my personal advice, so please take it as such. One of the things I tell people is that it’s critically important to have a rheumatologist that you trust and with whom you can communicate. While your doctor is no doubt guiding you with your best interests in mind, it doesn’t sound like he communicates well with you — like educating you about your choices before “springing” a biologic decision on you. Just like you’re getting a second surgical opinion, it doesn’t hurt to get a second rheumatology opinion. That will give you a good basis to determine if you want to change treatment plans or even change doctors. RA is often frustrating and, unfortunately, requires that you make serious medical/treatment decisions. Having a medical team that you trust will help you through this. Good luck with everything.

  • Carla Kienast author
    3 years ago

    Wow. Thanks to everyone for chiming in. It sounds like a lot of us “tired of fatigue”. Other recent articles I’ve read lately actually comment that while many medications help with the pain and swelling, they don’t really address this symptom — which seems pretty universal. Maybe if enough of us log the complaint, we might get some research. Until then, thanks for the input and support!

  • Veda Logan
    3 years ago

    I can relate to this!! Even if I can be in bed long enough, I still don’t sleep good, and just feel run down all of the time, including muscle aches and pains. I do wish there was a cure!!!!

  • tulugaq
    3 years ago

    It’s helpful to see that so many others experience fatigue the same way I do. I feel that my life is closing in on me, a gradually I can do less and less…to the point where most of the joy in “going out” — to do anything — is gone, because I dread how I’ll feel in the middle of whatever it is I am doing. (And of course I used to lead an extrmely active life — not athletic, but busy with community affairs and events.)

    Last summer I was able to play with my grandchilden when they came to visit; I don’t think I can do more this year than sit in a chair and watch. I hate it.

    And where does fatigue end and depression start? I am convinced the depression results from the fatigue….

    My rheumatologist tells me to “get more sleep.” Right.

  • swbw
    3 years ago

    I agree that the fatigue is the most difficult to deal with…because I don’t know what to do to make it better.

  • Joe Donaldson
    3 years ago

    Fatigue is my constant companion (enemy?). It is the most frustrating element of my RA. Pain and inflammation are well managed but nothing seems to help out with the fatigue. I am taking folic acid but it doesn’t seem to help.

  • Rutdog
    3 years ago

    Good article. I believe it is these additional issues that those of us with RA deal with, which make the disease so challenging. While, my pain and morning stiffness are more or less under control, the fatigue is something I’ve never mastered. Diet and exercise have definitely helped, but fatigue would be my number 1 day to day complaint.

  • SydneyH
    3 years ago

    I feel like I can handle the pain most of the time, as long as it is kept down to a dull roar. It’s the fatigue really drags me down. I often feel like I’m trying to slog through jello. When my RA gets better, my fatigue often gets better too.

  • Richard Faust moderator
    3 years ago

    Sorry to hear that you are having these difficulties Sydney. Fatigue is absolutely one of the most common non-joint related symptoms mentioned in the community. Here is an article with views from our experts on managing RA related fatigue: https://rheumatoidarthritis.net/living/managing-ra-related-fatigue/. Best to you.

    Richard (RheumatoidArthritis Team)

  • Wren moderator
    3 years ago

    I’m one of the 2 percent of rheumatiod disease patients who doesn’t often suffer from fatigue. It’s one of my symptoms, but it tends to affect me most during severe, painful flares in my joints–and then, I think loss of sleep is the real culprit. Otherwise, while fatigue does poke its energy-snorfing nose into my business now and then, it doesn’t slow me down very much.

    I wish there was a way to trade my form of RD for yours, even if only for a few weeks so you could enjoy life without that terrible, debilitating fatigue for a while. And I wish the scientists out there working on this disease would direct some of their attention to these “other” symptoms: fatigue, flu-ish malaise, and fevers. Each of them, alone or together, can stop a person cold, and in combination with joint pain and destruction, they’re killer.

    Come on, science-guys! Let’s get with it! Feel better soon, Carla. 😉

  • PEP010
    3 years ago

    I all-too-often sleep in 2 hour cycles. Sleep, get up with pain (even with meds) or just restlessness, up for 2 hours, sleep again. Very hard to stay balanced with the so-necessary rest.

  • Richard Faust moderator
    3 years ago

    You are absolutely correct PEP010 about necessary rest and sleep. Sorry to hear that you are having so much trouble. This article presents the most popular recommendations from our Facebook community on sleep and RA: https://rheumatoidarthritis.net/living/sleep-ra-get-good-nights-rest/. You may also want to talk to your doctor about seeing a sleep specialist. Wishing you the best.

    Richard (RheumatoidArthritis.net Team)

  • Dave
    3 years ago

    I totally agree with you Carla. For me the most frustrating part of this crazy wild ride known as “RA” is definitely the fatigue factor. I can deal with the pain a lot better than I can handle the tiredness and an energy level that is out the bottom! As a long-time athlete is is doubly frustrating. I too wish that Doctors were more focused on treating that aspect of RA. I know that everyone responds differently to the challenges that we face. I am thankful for a supporting wife who understand when I just don’t “have it” today and wind up on the couch! I’m thankful that I am blessed with the athlete’s mentality that see’s every challenge as something to be fought to it’s knees. Depression? Nah! Not in my vocabulary. Today is good and tomorrow will take care of itself. If I’m tired, I’ll rest. If I’m up for it, I’ll go for it. Life is good and I am blessed and RA will not win! God bless you all here at RA.net. The encouragement and support that is provided here is invaluable and very much appreciated! Dave

  • Carla Kienast author
    3 years ago

    Dave: Thanks for the comment. Fatigue must be especially aggravating for someone who has led such an active life. And thanks for pointing out that our mental attitude in dealing with these challenges is critical. Comments such as yours are a big reason I love contributing to RA.net. We really try to build a community and be a resource. Thank you for being part of it.

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