Fatigue

By connied

1 min read

I had a visit today with the PA at my internal medicine doctors office. Although I generally save RA related issues for my rheumatology visits, I mentioned today that fatigue has been a huge issue for me this summer. In fact, I just woke up from a 14 hour sleep after a short trip yesterday and don’t feel rested. She said another patient told her she too had fatigue and started to stop eating after 6 PM and felt less fatigued after 3 months. I wanted to scream. I wanted to ask if the other patient had RA but instead I said something like "If my RA went away, the fatigue probably would too."

It’s so disappointing to go to a mid level health professional that has no idea about RA. I wanted to scream. Not sure what would have been better for her to say but not eating after 6PM did not sit right with me at all. Thoughts?

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christine.laaksonen Community Admin
Oh Connie, that is such a frustrating thing to hear. It is amazing when even some health professionals just don't get it. You are definitely not alone here, and hopefully some other community members can chime in with their thoughts as well. Thank you for sharing. Wishing you a gentle night. -- Christine (RheumatoidArthritis.net Team Member)
hwb0w4 Member
I know what you mean, although I've never mentioned my fatigue to my Rheumy. Not much point to it. I did ask him once if he knew of any PEP pills that I could take(same difference). He sadly smiled and said, "No". So, he knew what I was talking about. I've had Type 1 Diabetes since age 3(fatigue) and Insomnia(fatigue) since age 12. Like you, I often sleep 14 or more hours a day. Only getting up to go to the bathroom, take medications, check blood sugar and correct if needed, make my hubby brekky and lunch. If I have an appointment, etc. I force myself to get up. I even went to a sleep study which didn't help. I am a night person, simple as that!!
not found
Connie, don't waste energy trying to educate those outside of our small, intimate, friendly ra community, unless they really ask. if you want to have fun, go to an emergency room with a complaint and mention you have had chronic ra for 20 years and you do not know if it is causing your complaint. be well Larry
Tamara Haag Moderator & Contributor
Hey Connie, Thanks so much for sharing this frustrating experience. It is hard enough that much of the general public doesn't understand what we go through, but it cranks the frustration up several notches when it comes to medical professionals not understanding. As you asked for thoughts, I'll share mine. Ideally, I think it's a good move for us to share with medical professionals when they need to learn more about something. Saying something along the lines of, "Well actually, fatigue is a major symptom of RA, so I'm not sure that changing my eating schedule would make a difference. Are you aware that fatigue is a symptom of RA?" would point out that she has some learning to do. That being said, it's hard enough to make it through a day while fatigued and/or in pain. I am typically an outspoken person, but I find it really hard to advocate for myself when I am in a flare. And it's all the harder to advocate for oneself after being demoralized at having a medical professional downplay what I'm going through. So while I think in an ideal world I would educate others and advocate for myself every time I ran into a situation like this, I definitely have not been able to do this on many an occasion. If this is a doctor you will continue seeing, perhaps you could email her/her office and share an article about fatigue and RA (perhaps this one since it's from the Mayo Clinic, a familiar source to most doctors: <a href='https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/symptoms-causes/syc-20353648' target='_blank' rel='noopener noreferrer ugc'>https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/symptoms-causes/syc-20353648</a>). Also, when you go to your rheumatologist, if s/he makes any changes to your treatment plan based on your fatigue, you could make sure to share that update with your internal medicine doctor. I hope you can find some fatigue relief. It is such a powerful, frustrating symptom. Here's my account of it, in case you find you can relate: <a href='https://rheumatoidarthritis.net/living/tired-of-tired' target='_blank'>https://rheumatoidarthritis.net/living/tired-of-tired/</a>. Wishing you all the best, Tamara
qejm0g Member
Thanks for sharing Connie. I get quizzical looks when I speak to my primary care provider about my fatigue and also about being tired as in my mind they are two VERY different things! Being fatigued is a heavy feeling like moving through mud or water that affects my body and brain at the same time-no amount of sleep releases it. Being tired is a short lived lighter feeling which usually passes when I'm able to get sleep at night. Only others with chronic illnesses GET that description. As for not eating after 6pm (my choice is 730pm actually)-the only thing that it's done for me is helped me to lose a bit of extra weight.
shurt Member
Hi Connie, I'm a physician and had to stop practicing psychiatry after 1 1/2 years due to severe, complicated migraines. I kept complaining of fatigue and all my docs said it was due to the migraines. Then 8 years later one doctor said it was NOT from the migraines and sent me to a rheumatologist. I was found to have abnormal complement levels and was told that I would develop RA or lupus (it turned out to be RA). Meanwhile, I had a sleep study done and they found I had a sleep disorder so I was prescribed Trazodone and that helped immensely. It probably won't make you feel any better, but because I am a physician I'm often treated very badly as a patient. I sometimes get comments like "you should know what to do, you're a doctor" or "physicians always make the worst patients." I really dread going to appointments. I'm glad forums like this exist so we can support each other! I always think it's good if you can bring someone with you to your appointments; you may be treated better and it's good to have moral support from someone you trust. All the best! Susan
cali Member
Not eating after 6 p.m. may not be so far-fetched an idea to reducing fatigue. I've had much experience with manipulating my diet over the decades, which began when I had to prepare for my first bodybuilding competition. I'm very familiar with how food affects my body and mood. In recent years, I turned to intermittent fasting -- didn't know what I was doing was called that, but now I know that's what they're calling it these days. I eat between 8 a.m. and 3 p.m. I've also been on the AutoImmune Protocol diet and have to say my energy has definitely improved. As far as no eating after 3 p.m., my feeling is that your body is not using its resources to digest and metabolize food, so energy is being spared. Also, if you continue to eat during the evening hours, especially carbs, you will feel sluggish and go to sleep with your body trying to digest and metabolize food. So I think in order for your body to get a good night's sleep, your digestive system needs to be at rest.
1. cali Member
 Also, to add to my post above, very importantly, if bringing the gut to optimal health is key in ameliorating RA (which I firmly believe it is), it stands to reason that not continually "insulting" the gut by flooding it with food throughout the day would be beneficial, allowing the gut to rest and heal.
kpalchk Member
Fatigue and RA go hand-in-hand, I believe because we're constantly battling the effects of RA both physically and mentally. It's exhausting. This is something you should discuss with both your GP and your rheumatologist, and in fact, see if they'll consider consulting with each other on addressing problems which are not resolving. It could be the RA, but it could also be a number of other things which have nothing to do with RA and would be a concern. As far as eating earlier in the evening, I've found it does make a difference in my sleep quality, and more so as I get older. It seems to affect a lot of people. So even though it's frustrating for your doctor to be flippant, I think this suggestion has enough merit for you to give it a shot. It's a simple enough remedy and cheap, and it just might surprise you. Good luck and I hope your fatigue is resolved soon.
jyodh Member
Hi - just wanted to validate your experiences here. Fatigue is a huge part of having RA. I often fall asleep on the couch as early as 8:00 pm and I often have to leave dinner parties and the like early because I'm just too tired. Haven't adjusted my diet or anything, but I can relate to when it's clear that people in my PCPs office know very little about what I"m experiencing as well as when I tell my rheumatologist about the symptoms and you can tell he actually knows the reality but offers nothing really to do except get rest. Our reality is basically that we need to get more sleep and educate everyone about our needs.