I Spent Most of My 20s Asleep

I Spent Most of My 20s Asleep

I was diagnosed with Rheumatoid Arthritis when I was 20. I recently turned 28. Do you know what this means? I spent half of my 20s asleep.

If I really thought hard about this I should be seriously unhappy. I mean, legitimately half (if not more) of this decade was spent fast asleep.

Fatigue is to blame

Fatigue is my most troubling symptom, even more so than pain! Does lethargy come on as a side effect of the medications I take? Or is it just my immune system trying really, really hard?

Fatigue – the untreatable RA symptom

I continually ask my doctor if there is something I can do, or take. It is sometimes hard to stomach my amount of “downtime” but there are no medications to help with it. My rheumatologist wishes he could give me something but until my symptoms are fully controlled I’ll continue to feel drained.

For those select few who are healthy and able-bodied let me ask you this. You know when you have the flu you feel sluggish and tired and could sleep for the country? Your immunity is on power drive fighting against the virus or bacteria.

A chronic illness warrior’s immune system is on overdrive every day. I feel that type of fatigue every day.

The need for sleep because of RA

And, because of it, I can easily sleep 9 to 10 hours a night. I wake up, go through my morning routine and then take a nap before work. That nap can be anywhere from 1.5-2 hours so you do the math. That’s half a day…

…Every day, of every week, of every month. Continue down this road and it turns into roughly six months asleep or, half a year. Now keep going and it turns into four years out of the eight I was diagnosed.

What I described above was a good set of days so what do bad ones look like, you may ask. Let me tell you. I could sleep well over twelve hours a night (I go to bed earlier and wake up later) and fit in a lie down when I can, even if it’s after work. I never count how many hours I spent laid up on bad days because I would fixate on that number.

I spent most of my 20s asleep. Okay, so 4 out of 10 doesn’t sound THAT bad, right? Except, do you know how much I could do in four years?? I can finish vet school, get a Ph.D., or complete another major. Four years may not be the majority of a decade but I can certainly do a lot with that time!

“Then why waste that time sleeping?” Brain asks. “Sorry, Brain”, Body replies “I need that absurd amount of rest to function during those remaining 12 hours of the day.” But, hey, from what I’ve heard, 20s are the new teens and full of growing pains so maybe sleeping through them is a string of good luck?

How has fatigue affected your life? Do you make allowances for it or do you try to push through?

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

View Comments (28)
  • gsehealth
    7 months ago

    Yes. My mom has RA. She could not able to sleep due to pain.

  • KatieLyn
    9 months ago

    This article as many others have enabled me to better understand why, i all of sudden past 2-3 years have been hell bent on my new behaviors as if the sleeping all the time is my fault, or forgetting things to only find them months later (as if i needed assistance on being forgetful however i could usually find something within 10 minutes, or a nap after a weekend being young having too much fun, now I have fallen asleep engine running parked getting gas omw home from work. Infections antibiotics once took care of to being in hospital for weeks, Being diagnosed Nov. 2016 on my 30th bday was rather confusing due ro my ignorance and how on earth was it poesible a 30 yr old nevermind me have arthitis, lol it wasnt true. However all the symptoms plus a million were there. Also I am unable to be treated due to having an incurable liver disease. I would fall asleep at work, omw home driving shoot I fell asleepndriving to work come to think of it, work became too much. Depression has definitelymhad its way with me. I asked a friend once how the f did she do the amazing things she did daily as I watched amd admired her during the daily struggle of having RA. She said to me “Katie i have had this since 18 mos old I hardly know any better and feel so bad for you as Ive dealt with freakin drs all my life most of them a holes and impossible, i would hate to be trying to learn this now.” And see i felt bad for her but she is right, without negating anyone else’ exprience or pain. It has been the most difficult painful lonely year of my life and staying awake for it when im tired from absolutely nothing? No thanks night night. I cam sleep for days couple hours up a day

  • Monica Y. Sengupta moderator author
    7 months ago

    Thank you so much for sharing your experience on my article, KatieLyn! And, I’m sorry it’s taken me months to respond!!

    Please know you’re not alone here. I commend your friend on dealing with RA for so long — I wouldn’t wish this disease on anyone but you have your own experience and you are welcome to share it here whenever you want!

    For me, the first couple of years of my diagnosis were the most difficult. I was in pain because we were trying to find the right meds, I felt alone because I didn’t know anyone with RA or even how to talk about it with my friends/family. I felt depressed because my life was totally different now, anxious because of the future…I’m sure I could go on, but please know there is nothing wrong with how you feel and you are not alone!!

    I thought a couple of articles might interest you:

    The first is a contributor’s thoughts on self-image https://rheumatoidarthritis.net/living/were-all-a-little-fragile/ and the second are some ways to manage stress: https://rheumatoidarthritis.net/living-with-ra/managing-emotional-problems-and-stress/

    All the best, I’ll be thinking of you!! ~Monica

  • judy_c
    10 months ago

    I loved this article because it’s a huge problem for me too, and Monica, you have a great sense of humor which will get you far! I keep pushing because there’s no choice honestly. One of my doctors said that with a schedule like mine, he’d be tired too,,, Hmmm, not particularly helpful but it does make one think it’s all in the head or all lifestyle related when a part of knows it’s not. This community always helps me remember that this thing called RA is real, not in my head, and others feel similar to me and many feel much worse. Thanks for sharing your experience as it encouraged me today to not beat myself up…and maybe I’ll take a nap.

  • Monica Y. Sengupta moderator author
    7 months ago

    Thanks Judy!! I’m glad my humor translates across the screen (I can sometimes get in trouble because of it!! heh)

    I’m glad you’ve found this community…I also feel the as same you do! It’s a positive place and I always feel supportive.

    I am also really happy you’ve kept up your schedule!! I don’t know that I could and I can’t/don’t want to imagine the fatigue you must feel. How do you manage your fatigue?

    Thank you for commenting on my article!! ~Monica

  • Khushboo
    10 months ago

    Hii Monica, I feel exactly the same like you. Even my most troubling symptom is fatigue itself than pain. I am 28 and diagnosed with Juvenile Rheumatoid Arthritis when i was 5 year old.

    Even i feel like sleeping after my daily routine task in the morning. If i don’t take a nap i get brain fog and striving hard to push myself. But i have to push myself daily for other chores of mine. Small work gets me worst fatigue, even after having good time i tend to get downtime with worsening Fatigue.

  • Monica Y. Sengupta moderator author
    7 months ago

    I’m 28 too! I’m so sorry you’ve dealt with RA for so long…May I ask? Were you able to take meds as a child? I’m just curious but if you don’t want to answer I totally understand!

    The last few months have been a bit odd. I don’t necessarily feel worse (or better) but I haven’t been “sleeping” as much. I take like two or three eye breaks and it seems to rejuvenate me. My mother used to do this and it seemed to help her (she had Lupus).

    What do you do to help with the fatigue? Thanks for commenting on my article, Khushboo! ~Monica

  • gailbuell
    10 months ago

    Hi, Monica. I wish I could tell you the fatigue will one day disappear but it will not. It will never be easy but you will finally get used to it. Exercise does help. Something low impact like water aerobics. Also, one thing that helped me greatly was visiting an “integrative doctor”. These are MDs who also have credentials in vitamins, supplements and holistic techniques. My integrative Dr did numerous blood tests and suggested some vitamins and supplements that have been a tremendous help. Of course, I still also go to my rheumatologist and follow his medical treatment religiously. There are so many medications these days that really help RA. Make sure that you have a rheumatologist who is aggressive with your treatment. When I was first diagnosed 28 years ago, the mindset was to treat the symptoms. There were not many meds other than non-steroidal anti-inflammatories, gold shots and prednisone. The mindset now is to treat the illness aggressively, before joint deformation/destruction begins. I haven’t had a flare for over 3 years now. Between my diagnosis and now, I have tried every medication that has been on the market. Some worked for a while, then stopped working, some worked well for several years and others didn’t do a thing. The flares have stopped but the fatigue has always been there. Exercise plus my vitamins and supplements help but I am still always tired. All you can do is the best you can do. Take it one day at a time. Keep moving when you can and keep your chin up. It’s a difficult road but if you are lucky like I am to have family around you who understand and give you love and support, you’ll do just fine. I wish you the best!

  • Monica Y. Sengupta moderator author
    7 months ago

    Thank you so much for your loving and supportive comment, gailbuell!! It just made my day infinitely better.

    A friend’s mother recently suggested a holistic rheumatologist. I’ve tried supplements in the past but they didn’t work for me — however! I know I didn’t stay on them long enough to mark a difference. I’ll consider seeing her! Thank you for the rec.

    What are golden shots? Methotrexate?

    I am really lucky that my rheumatologist treated aggressively from day 1! Because of this, when I am awake, I feel almost “able-bodied”. And, as you said, it doesn’t hurt to have a great support system.

    Thank you again for the really amazing comment. I really wish I could express how much it means to me! All the best!! ~Monica

  • Mdevaux11
    10 months ago

    I have said for years most days I can handle the pain but not the exhaustion. In fact that’s probably why I was misdiagnosed many times because I focused on the fatigue more then the pain so I was sent for sleep studies. I kept wondering why so many people my age or older had more energy. I couldn’t keep up. Even lunch with coworkers exhausted me so I take a nap at lunchtime listening to their laughter. Friends want to know why I don’t want to go out shopping with them. Just taking a shower is enough to tire me out. I was prescribed Low dose of Adderall as needed (dr didn’t want me falling asleep at the wheel) and it helps to get through the work day but when it wears off I’m extremely tired. I feel like many don’t understand and the ones that do sometimes forget.

  • Monica Y. Sengupta moderator author
    7 months ago

    Thanks for commenting on my post, mdevaux11! I’m glad the Adderall affects your energy level well even though it does wear off!

    I completely understand everything you’re saying…How do you expect me to go shopping, walking and carrying bags for an extended period of time when just simple tasks wear me out?? All the things I wish I could say to my friends. Every. Single. Time.

    ~Monica

  • MNwithRA
    10 months ago

    Monica, sorry you experience fatigue at such a young age. I didn’t get that awful side effect in full force until about 7 years ago. I begged my docs to continually to find a reason. It’s just bad RA I know know. I’ve had the disease for 29 years and now am disabled. FYI even in a good day I sleep 12 hours. I can relate to feeling like time gets wasted. I hope you find a drug that helps your disease enough to give you energy. Sincerely, Marla

  • Monica Y. Sengupta moderator author
    7 months ago

    Hey Marla, Thank you so much for commenting and your kind words!

    I personally think it doesn’t matter what age we experience the fatigue or for how long, it doesn’t matter if we’re in flare…We should ever have to feel this lethargic and our doctors should investigate why the disease affects our bodies so strongly!! Thank you for advocating for yourself and I hope you also found a medication that works for you?

    I don’t mean to pry but was the progression of your RA very fast and strong? May I ask what medications you were on? Thanks!! ~Monica

  • cwrb
    10 months ago

    It might be about how positive you want to be.
    I had RA in my 30s and don’t have symptoms now (in my 70s).
    My approach was to ignore it as best I could.
    When I felt tired, I pushed myself to do as much exercise as I could without causing inflammation that would restrict my movements.
    Sleep is good but mild exercise is better!
    As I have seen, it worked, for me.
    My life is a little restricted but I keep pushing.
    You only live once!

  • shayda
    10 months ago

    Sorry but I would agree with Lou here. DO NOT KEEP PUSHING!. I have done that for years and my body always teaches me that pushing through results in feeling worse.

  • lou16
    10 months ago

    I find this comment to be very dismissive of what the writer is talking about. If you have felt the overwhelming fatigue she is talking about you do not have the choice if ignoring it–or pushing thru it. This isn’t tired–it’s sick. I am quite sure she knows you only live once. I also have to pick & choose how much I can do–and that’s on a good day. I would choose to even be able to remember what normal energy feels like; and enjoy that feeling every once in a while.

  • Monica Y. Sengupta moderator author
    10 months ago

    Thanks for your feedback, cwrb! At the beginning, I always pushed through but I ended up in worse flares. 🙁

    Lately though (the last few months) I have been feeling better because I’m in a good place with meds and exercise so hopefully I continue to trend upwards.

    I am glad you are in remission and you were able to push through! You are very strong-willed! All the best, Monica (RheumatoidArthritis.net Team)

  • shayda
    10 months ago

    Monica – loved your article! I am 35 and was just diagnosed with Ankylosing Spondylitis although I have been suffering for almost 15 years. I too slept away a lot of my 20s. While I am not a huge fan of drugs, Vyvanse (used to treat ADHD) has been a lifesaver for me. My quality of life (and that of my marriage as we can hang out without my regular nap time lol!) has improved exponentially. I take 20 mg in the morning on the days I know I will need to be nap free. It is also not “addictive” and I can take it some days and not take it others and my body doesn’t respond negatively (except on the days I don’t take it I need to nap haha). While it doesn’t help with the body fatigue, it completely eliminated the sleepiness I generally feel all the time. It is used for narcoleptics and people with sleep issues. Don’t take it past noon though otherwise it will affect your evening sleep. Take good care! 🙂

  • rockcandi
    10 months ago

    I’m glad to know that I’m not the only one who gives into my body to sleep about 12 hours a day. Before I had my son 2 years ago I rarely took naps. But that was b/c I could be in bed from 10 pm to 10 am, even though I woke up a lot and never really got that restorative sleep, it was still enough to sustain me for the next day, mainly b/c there wasn’t a whole lot I had to do on a daily basis. But since the birth of my son two years ago I’ve been taking naps daily, whenever possible. I slept when he did as a newborn and infant and most of you probably know that is an hour or two every three hours. My poor guy has always had trouble sleeping. He sleeps with me and his Dad ever since he was about a year old. I sleep when he does still, almost 10 hours a night, both of us waking every couple of hours or even more often. Then he and I take a nap together for at least 1.5 hours often up to 2.5 or 3. It makes me sad to know that I’m sleeping half of my life away but for now it’s not a huge deal bc my son, who’s my and his dad’s whole life and purpose for everything we do, is sleeping when I’m sleeping. I’m sure I’ll be more upset about it as he grows up and gets to the point where he’s no longer taking naps and not sleeping as many hours straight at night. But I can not make it with a healthy mind and able to push myself physically if I don’t get that nap!

  • Monica Y. Sengupta moderator author
    10 months ago

    The first thing I thought after reading your comment, rockcandi, was how great it was that you had a routine that worked for you!! When I can fit in a nap I do because, like you, I also never seem to get the proper resortative sleep at night!

    Thank you sharing!!

    Please keep in touch and all the best, Monica (RheumatoidArthritis.net Team)

  • moloney
    10 months ago

    tried cannabis?

  • lpritchard
    10 months ago

    I have felt this same kind of fatigue since adolescence. I’m in my 50s now (!) and was diagnosed with Hashimoto’s thyroiditis (also autoimmune) 2 years ago. There’s no way to know how long it’s been affecting me.

  • Monica Y. Sengupta moderator author
    10 months ago

    I’m sorry to hear this, lpritchard but I’m glad you have a diagnosis. Where you diagnosed with RA before?

    Thank you for commenting!! ~Monica (RheumatoidArthritis.net Team)

  • AllyD
    10 months ago

    I was just diagnosed December 13, 2017. I have never felt this type of exhaustion in my life. I can fall asleep, but I can’t stay asleep. I’ve become a very light sleeper, and I’m sure that isn’t helping either. The house chores aren’t getting done, dinners aren’t being made… it is definitely a struggle, but I need to push myself to get up and do things, or else this is going to lead me down a very dark path.

  • Monica Y. Sengupta moderator author
    10 months ago

    Hey AllyD! I am so sorry you are dealing with this intense fatigue but I am happy you have a diagnosis. I am also a light sleeper and it definitely didn’t work in my favor.

    I thought you might like this article…It contains tips from our community on how they get around chores and errands: https://rheumatoidarthritis.net/living/community-tips-chores-errands/

    I hope you feel better soon! Please reach out if you ever need to, Monica (RheumatoidArthritis.net Team)

  • Lawrence 'rick' Phillips
    10 months ago

    It depends on if I push or sleep. If I absolutely positively have to have it done, I do it. If not, I am a napper. Sheryl says I need balance. Some days I agree, other days not so much.

  • Monica Y. Sengupta moderator author
    10 months ago

    I am the same way!! But then my body revolts on me. I have always been bad at balancing my health because before the RA I never got sick. Now, my body decides for me when I need to rest! Heh..

  • vedwards7310
    10 months ago

    Same for me. I sometimes feel as though I am sleeping right through life. Nothing helps. No amount of sleep takes away the fatigue. Like you and many other’s, the pain is manageable, but the constant exhaustion is debilitating. I would love to have just one day a week where I would wake up and actually feel normal. I’m luckier than most though because I am now retired and can sleep when my body demands it. Going to work everyday was unbearable and my heart goes out to those of you who still have to deal with that. RA is a dreadful disease.

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