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I feel like a crybaby!

I’m 58 years young, and was diagnosed with RA three years ago. Since my diagnosis, I believe I have had RA for well over 10 years, because the pain and stiffness in my feet, knees and shoulders now have a name. My RA doctor started me Methotrexate. That alone wasn’t working so I’ve been on Humira for the last two years. I still have aches and pains but not as frequently as before. What I do feel and struggle with is severe fatigue.

My internist started me on Lexapro a year ago for depression, which he feels will help me with my fatigue. I really don’t think its helping much because I can’t seem to function past 3:00 p.m., and some mornings I can’t get out of bed. So he asked me to take them in the morning as opposed to night.

I push through the day because I’m sick of whining about feeling fatigued. Family and co-workers ask “how are you feeling today”? I say fine because they don’t understand anyway. I don’t want to feel like I’m complaining all the time, which is how they make me feel. I feel guilty because I know people have RA much worse than me and perhaps I shouldn’t complain or my fatigue, aches and pains aren’t bad enough to justify me even speaking about it. Question: at what point can I justify my feeling so fatigued that I can’t function at work properly? I’m a legal secretary/office manager with a lot of stress, which for the past year I have been forgetful, and making mistakes when I know better. Its concerning to me. I believe that the stress of my job is contributing to how I feel with my RA. I would like to work less hours and go on disability for reduced hours. Has anybody done that?

Thank you for reading my story.

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Comments

  • MCB
    4 years ago

    Diana thanks for your candor. I just asked my Rheumy about disability; not because I’m ready but because some days the job is so stressful I wonder how much it’s impacting my body. I also wonder how much my performance is being affected. Its tough to know what’s right, but trust yourself to make the best decision possible.

    Thanks Mariah for the guidelines. Very helpful!

  • Mariah Z. Leach moderator
    4 years ago

    Hi Diana~

    Thank you for taking the time to share your story. You understand your own body better than anyone else, so if you think that the medications your doctor’s have given you are not doing a good enough job you should tell them! Your doctor’s job is to find a treatment that works that YOU are happy with! It is also possible for a treatment that was working to be less effective over time (for example, Enbrel used to be very effective for me but recently I have had to switch to a new biologic). Also, here is an article about RA and disability benefits that you may find useful: http://rheumatoidarthritis.net/living/rheumatoid-arthritis-social-security-disability-benefits/
    Hang in there and remember that we are here to support you!
    ~Mariah~

  • Tamara Lowrimore
    4 years ago

    RA does make you feel very fatigued and stress definitely adds to your RA pain. I too had it about 3 years or so before I was diagnosed, it started off with small things and I just thought well it’s because I’m getting older, but before I knew what was going on my RA was severe. It had cripple both feet and toes and my left hand had turned outward. I had an RA knot to swell on my elbow the size of a golf ball. I cannot stand on my feet very long, my balance is so bad i have fell a few times but Thank The Lord I haven’t broken anything, but have had many bruises and sore places. I too am on methotrexate and humira, but my doctor said he sure wish I had come to him sooner and maybe my deformities wouldn’t have gotten to the point they are. I live daily in pain and I recently had a set back due to my immune system, it had gotten so long I had to be off my RA meds for about 6 weeks to get my immune system back up and get rid of a double ear infection e where I had to take 4 antibiotics. Right now I am in a mess, my RA has not gotten back under controversies I just was able to start back on my meds, but I am looking and praying they soon get back to working on my RA.

  • Mariea
    4 years ago

    Diana, I am also 58 young. I was diagnosed in November but have probably had RA for 10 years as well. I am a mental health therapist and the cognitive delay is very frustrating when my clients are finishing my sentences! I too wonder about disability because of fear regarding being able to ethically continue work because of this strange thing called fatigue. Even though I have been telling my husband, I’m just too tired to do things, for years I equated it to being introverted! I know funny but remember I am a therapist 🙂 good luck on your journey!

  • Linda
    4 years ago

    Hi, Mariea. I know I’m late in responding. I’m home sick from work and catching up on my reading. If you’re open to it I would love to chat some time. I’m also a therapist and struggle with severe RA fatigue that has been impacting my work. I have felt so alone in that particular experience. If you’re interested in ever chatting or emailing about it feel free to reply and we can possibly share contact info. -Linda

  • Diana author
    4 years ago

    Thank you all for your comments and encouragement. Now I want to cry of happiness! A little more of my history: In 2011 I was diagnosed with breast cancer. They caught it early so all they had to do is cut it out and 36 weeks of radiation and I’m good to go. Last Dec. my mamo showed that the cancer may be back. I’ll know more in May.

    While I would wait for my turn to see the doctor/or receive my radiation treatments, the waiting room would sometimes have patients who obviously look very sick, and possibly may not make it. As my cancer was stage zero, I felt guilty, sort-of “survivor’s guilt”. I definitely had nothing to “cry about”, let alone even acknowledge my cancer.

    My co-worker’s daughter had breast cancer at the same time, of course her’s was far worse than mine (as she reminded me quite often). Again, I don’t have a right to complain.

    Now, lets talk about RA. No, I can’t take a pill and it will go away, no you can’t just cut it out and it will be better. Every day felling like (you know what) is my new normal. I’m just having a very difficult time accepting the changes, pains and the loss of my life activities before RA.

  • Joanna
    4 years ago

    Diana. I am 55 and have worked as a paralegal for more than 20 years. I have been diagnosed with RA and Fibromyalgia for more than 25 years. All this time I have been able to cope and mask the pain. I am now to the point of lower cognitive function and chronic fatigue syndrome. I am having a hard time dealing with the daily challenges along with the loss of.my former self. I totally understand. As with Sandra’s comment below I too am afraid of denial of as I disabilities claim but I feel I have reached the end of the road. I wish there was a magic wand to wave to take it all away or a pill which could mAke the day bearable and allow high cognitive function. It sucks not being able to find.that word in your brain because it is right there on the tip of your tongue or the fog in your head is too thick to form an intelligent sentence.

  • Sandra Melton
    4 years ago

    First of all, thank you for being so brave to write about this. I struggle with fatigue constantly. I am a nurse and can barely make it through one shift. Just last week I talked to my nurse manager about going to part time. The trouble with that is l am single and taking a pay cut is not an option right now. If I could take partial disability and work part time I would try that. Also I am afraid to apply for disability for fear of denial. Does anyone know when or how to determine when it’s time to seek the alternative?
    I do understand what you mean when you just give a generic, “I’m fine” answer when asked how you are feeling. I never know if people really want the truth. For the most part even with family I feel they really don’t want the truth. In reality, most people are more concerned with themselves than you so I don’t bother. I do use Intermittent FMLA or I would not be employed at this point but there are not enough FMLA days to cover all the days I need to call in. Any advice is appreciated.

  • Karla
    4 years ago

    Oh yes, I could have written this story! I was diagnosed at 48, I’m now 50, and I wonder every day how long I can go on. My boyfriend constantly asks what’s wrong and I want to scream “I’M TIRED!!!!!” My office job is not too demanding, but I can barely function after lunch. I just had four weeks off for surgery and it was heaven! I could exercise and lose weight and eat healthy….but now I’m too tired for anything when I get home. Cereal for dinner and in bed by 8:00…..

  • Gayla McCann
    4 years ago

    I have no solution, but yes, I feel exactly the same!! I am 50, was working until about 10 months ago as an Executive Assistant, and the fatigue just was overwhelming me. I, too, began making mistakes and was some days just too exhausted to even go in. I’m on Methorexate and just am adding Xelanj. I’m truly hoping that helps.

    Case in point, today I woke up feeling great. I ran a couple errands, did a couple cleaning very minor cleaning jobs in the house, and felt like a truck ran over me! I am done for the day. I’d like to take a nap.

    I used to be athletic. The funny part to me is people say to try and exercise. Nothing would make me happier than to be able to work through the fatigue and pain. I’m no stranger to doing that, but this is an entirely different level.

    I know you feel like a crybaby…I do, too. But that fact is we are warriors fighting each day through a brutal chronic disease.

  • Ray Martinez
    4 years ago

    Hello Diana. Yes ,I do know how you feel and what you are looking for. I am 58 and I have had RA/RD for 26 years now. I have been on the biologic – Remicade with Methotrexate for the past 13 years. Reicade has helped tremendously. I can still work. I work a blue collar job. My wife has been telling to quit working for the past 17 years. I figured, since I can still move, I will keep working. It does help me to keep limber and so far to avoid disfigurement. However, the past 2 years had been getting a little rougher. I discussed my situation with production management and HR management. I asked for a position with less physical stress. A couple months later they moved me. Same pay, same hours, but a little easier to handle. I was really looking to go on disability otherwise. But now I may postpone that for now. My stress has been less and so my pain has decreased – immensely. As we all know, having RA is very stressful in itself and having stress or being stressed causes flares for us. My job is very different from yours. Best wishes for you Dear on which ever route you take.

  • Robin K. Blum
    4 years ago

    Diane, I hear you. I feel pretty much the same way. I am 65, diagnosed at 63 but had symptoms before. The methotrexate & Humira do nothing for my fatigue. Fortunately I am not working, but have a small home-based business.
    My husband is loving and patient in listening to my complaints, but it’s still hard, frustrating to feel tired after a three or four block walk. I don’t know what the answer is, but I do appreciate knowing there are others in the same boat. That alone is some consolation.

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