My biggest issue lately is dealing with exhaustion. I’ve never felt such fatigue and I’m hoping someone has suggestions to help. Tired to the bone!!! I get very little accomplished and this creates such depression. I dread getting up every day.
I thought I was the only one! I didn’t realize fatigue was part of my RA. I have to work physical 10+ hour shifts but after about 3 or 4 hours (no matter how much rest) I almost can’t go on. I’m only 54 and still have a ways to retirement. I was going to talk to my doctor about it but I don’t want to be prescribed some kind of addictive, mind numbing meds.
I’m sorry to hear that your symptoms are causing you these challenges, and I can most certainly relate. I do encourage you to talk to your rheumatologist, as it’s possible there is a treatment plan that could improve your quality of life. While pain medications are a part of some people’s RA treatment plans, rheumatologists strongly prefer to prescribe medications that decrease the occurrence of symptoms, rather than treating them after they already take place. In fact, my rheumatologist won’t prescribe pain medications for me, so nothing I am on is addictive or impairs my cognition (“numbs my mind”).
Another important reason to discuss the severity of your symptoms with a rheumatologist is because RA is a degenerative disease, meaning that, untreated, it gets progressively worse over time. Once joint damage occurs, it cannot be restored. However, there are medications that can prevent it from taking place in the future.
In addition, some people are able to decrease their symptoms through non-medication methods such a decreasing stress, eliminating certain foods from their diet, and alternative therapies. While there has not been a diet or alternative therapy that helps every individual with the disease, some people have had very positive results.
Please continue to reach out any time you have questions or experiences you’d like to share. I hate that you’re having a hard time, but am glad you’re part of our community and hope we can be of some support to you.
Lately, fatigue has become my biggest issue. I’m sitting here with tears in my eyes because I feel so much depression. Not long ago I had 4 days of feeling better and more energy. My husband and I went for walks, and I actually felt like doing things (such as simply going out to eat). No one I know understands, which makes it harder. I can tell I’m spiralling down. Seems like everything I eat is wrong, and my diet is wrong from what I read. I also have lactose intolerance and gastritis which limits me even more. I’ve seen 2 nutritionist, but they haven’t been effective in helping me. I tell myself I’ll figure it out, but I don’t know who to turn to. I’ve tried to figure things out on my own, but my mind just can’t comprehend it all. I’m really tired of fighting this battle after almost 20 years. Wish I could help, but I can’t help myself. Donna
I’m sorry you’re having such a tough time. I know Richard provided some articles about emotions and guilt on the comment you wrote on the “Tired of Feeling Tired” article, so I won’t repost those, but rather will say that I know how you feel. When I’ve had extended flares, or even short flares whose timing prevented me from participating in something I really wanted to do, I’ve been depressed. When your life all of a sudden changes because your body suddenly starts hurting/hurting more, it’s hard not to feel depressed. As you mentioned, when I’m depressed I often feel like I’m in a downward spiral, as I have less motivation to do the things that can help with a flare, such as diet and gentle exercise. During times like that I’ve gone to a therapist to help get me spiraling upward instead of downward.
As you mention diet, it can indeed be overwhelming to figure out, especially since some diets help some with RA and do nothing for others with RA (this is exactly the same as with RA medications, as the effectiveness of each med varies greatly from person to person). Here is some information on our website regarding diet and nutrition: https://rheumatoidarthritis.net/diet-and-nutrition/. In addition, here is our Diet and Nutrition section of our forums, in which community members and moderators have written about diet and RA: https://rheumatoidarthritis.net/forum/benefits-of-diet-nutrition/.
Please know that you are not alone. Most of us with RA feel that way because we don’t personally know anyone else with RA. However, as our website and Facebook page attest to, there are so many of us sharing these struggles, persevering through our challenges. We are here to support you anytime you are in need, so please continue to reach out any time you need support or information.
Sending you wishes for comfort for your joints and your heart,
I have to say that for me, fatigue is my biggest challenge in dealing with this disease. Words like tired or exhausted can’t even begin to adequately describe the fatigue associated with this disease, so trying to explain it to physicians, family and friends is next to impossible. “Everyone is tired and stressed out. It’s called life and we all have to just learn to deal with it.” We, with RD have heard this at some point, if not multiple times, right? I have lost my job, my marriage, friends, etc, etc when I could no longer adequately perform at the levels that were expected of me. I say, good riddance…. Our daily struggle to maintain some normalcy in our lives and relationships is hard enough without dealing with those that “just don’t get it and never will.” Those of us battling this disease are not lazy, apathetic, milking it or any of the other wonderful terms we are subjected to. It is imperative to our health and our own sanity to surround ourselves only with those that in some way enrich our lives. Understanding isn’t always expected or even necessary , but unconditional love and a little empathy, certainly is. After 10 years of battling this disease and it’s aftermath, I still don’t have all the answers I need, so I’m certainly in no position to have the answers to theirs, nor should I be required to. Simply put, this is a debilitating, unexplainable nightmare of a disease with no ending.
Thanks so much for sharing your perspective! It all resonates. Sometimes people who know me fairly well read the articles I’ve read for this site, and they say things like, “Wow, I had no idea what you were going through.” It’s so hard for others to understand, and of course we don’t want to spend every minute complaining (and even if we did that would quickly get old to others). I’m sorry to hear that you have had such a tough road to walk, but I really appreciate you taking the time to share with the group, as it’s very validating for those of us going through similar challenges. Thank you! Wishing you all the best, Tamara
Glad to see this as a topic today.
I am 7 days out from my infusion, waiting for the “bump up” that usually follows within a few days, but it’s not happening.
My fatigue is again overwhelming. Get up, brush my teeth, go back to bed. Get dressed, go back to bed. I get up to go to the grocery store, but when I get there, I’m too tired to walk to the back of the store to get milk, so I just drive home. Tomorrow. Maybe tomorrow. I go home and lay in bed for 6 more hours. Not really sleeping, just too tired to move. I know I should eat something, but that would require enough energy to make it. Toast for dinner it is, then back to bed.
Tomorrow. Maybe tomorrow.
There is no way my friends or family would believe this is my day. I’m not sure I would tell them anyway.
We hear you and you are not alone. This is certainly the most frustrating part of RA and when friends and family don’t get it, it can be equally as frustrating.
Have you tried talking to your HCP about your current treatment? While fatigue is a common symptom, there may be something you can talk about with him/her.
Additionally, I know others in the community understand you and may be able to help in supporting you.
I hear you and agree! Luckily, my pain is so far pretty manageable. But the worst is the fatigue! I have found that if I can just lay down and rest for about an hour each day (not that I may need it but I try anyway and play on my phone) it really helps. When I stopped working and went onto disability, I LITERALLY slept for about 2 months straight! I’d get up to eat, bathroom, kiss my husband, then back to bed. I finally got to a point where I didn’t need that “after breakfast” nap. Just the “after lunch” and “before dinner” naps! And eventually, I’m now to the point where I can usually just get away with an after lunch or a before dinner rest.
The exhausting is mind-numbing and so hard to deal with. Be honest with yourself about limits. Talk to your family and friends – true ones will stay with you. My sister-in-law responded with: I just didn’t know what to do to help you! I am truly blessed to have such a caring, supportive family and I know that makes a big difference! But communities like these are also a blessing because we are all going through it, we won’t (or shouldn’t) judge you, and we GET IT! You are not alone, we do understand how hard it is, and stay strong! You are NOT your disease! Gentle hugs!
Thanks for your supportive advice, Dalia! You make many excellent points. I’d like to add the importance of discussing fatigue with one’s doctor. Sometimes pain steals the spotlight in conversations with medical professionals, but fatigue can be just as debilitating. Thanks for sharing your positive attitude you manage to have in spite of the challenges you face!
The exhaustion is a hard part to deal with. Because most people cant “see” arthritis pain they can be judemental.
Ive learn’t to not talk too much to the people about it that don’t understand or are judgemental. Ive recently started going to my husbands church group meeting as these people are very kind , warm and not judgemental or pushy.
I think if you have Depression you have more need to sleep alot too as it makes you lack motivation.
I earn a small ( TINY ) living selling my plants. It helps as tending to something that cant judge you ( plants/ animals )
Thanks for sharing, Sarahc83! I’m so glad you’ve found a group of supportive people. That can be hard to do, and I commend you on searching for support. I hope you will continue to share your experiences and perspective with us whenever you feel so inclined. Wishing you all the best!
Hi forstli! I am so glad you found things that help relive your symptoms! Please feel free to share more about your experiences with alternative/complementary therapies! I am sure others would be very interested, as well!
Ask your pharmacist for the best vitamin B complex for fatigue. Depression also causes fatigue. You might consider an anti depressant
I take Paxil, at night and it really changed my pity party. No side effects, (miracle).
I also am EXTREMLY exhausted ALL the time! I don’t feel depressed, I have a good support system. I just can’t seem to get enough sleep. I wake up when I set my alarm everyday and cook my hubby breakfast, then we have coffee together with our kitty. I do light dusting, if I’m lucky, and I have to lay down. The problem is once I lay down I’m out for the count until the hubby gets home 8-10 hours later! I eat dinner, maybe, then I’m right back to bed.
Have they checked your B12 levels? Sleeping 16 to 20 hours a day is abnormal on a routine basis. From time to time it is normal. When this happened to me, they found low B12 and diagnosed me with pernicious anemia. You need to mention your sleep requirements to your doctor and stress that it impacts your ability to accomplish your normal activities of daily living.
I definitely encourage you to discuss this with your doctor. Fatigue is a symptom of RA, yet it is one that we often don’t discuss fully with our doctors. It may be that your treatment plan needs to be tweaked to reduce your symptoms or it may be, as ktinflorida suggested, that there may be another underlying issue that is causing such extreme fatigue. Fatigue is common during flares, but if it is not going away after a couple of days and is interfering with your quality of life, you should definitely consult your doctor (and get a second opinion if s/he doesn’t give the severity of your fatigue the attention it deserves).
Thanks so much for reaching out to share your experience. I hope you can find some relief soon!
This sounds like a typical day in the life of RA. One thing I fought against when I was first diagnosed was stopping when my body said stop. I would push on and push on, like most of us do when we try to live full lives. But it was a big mistake. My body was telling me it was tired, and I needed to pay attention. You will find how to sneak in a little extra each day, but don’t beat yourself up. You are not being lazy. This stuff is real. Be kind to yourself.
Thanks for the redirect, but I think what I have to share is applicable everywhere on this site. In the Ayurvedic medical system RA is curable. Not a lifetime curse of steady decline, debilitation, crippling and different drugs that eventually fail.
The northern and southern rainforests of India are the greatest, and most balanced pharmacopeias of the world.
Not a magic chemical bullet, but a symphony of chemicals in food, spices and herbs. A community of support to bring back balance.
The bottom line is it is considered a metabolic-digestive disorder in that system.
Clearly, logically digestion is involved hence the failure of a energy input from food in the system.
Digestion has failed, there is no energy coming into the system, hence the debilitating fatigue.
This is simple and clear logic. The basis of science.
The diet is 1/3 of the key to the metabolic problem. It is not an easy diet for a westerner.
This allows energy to reenter the system and for healing to begin.
No sour, no cold, no raw, no nightshades, meat is chicken, fish, beef or buff and it should be boiled for the effect
or buffering the amino acids (thing acidic aa alkaloids in the night shades, key term here is acid), no chili, less milk only boiled, less or no cheese. Bland, bland, bland.
There are only three lentils that are digestible and yellow mung is foremost.
Try one-two weeks of a diet of only India kitchari (boiled mung, rice, digestive spice blend and bland veg) and see what happens. Your energy will improve, your bowl movements will move toward gentle and more normal…
But with out the ‘complex’ herbal component that changes with the seasons, and NOT doing any real activity when you are having a flare or not pacing and overdoing when you are feeling better this…. diet is not enough.
This is an amino acid protein digestion error. Probably deeper than bacteria as some of the latest research is looking into… Or you could cure it with 2tsp or psyllium husk every am… followed by probiotics. Scrub and replace…
This does open up an entire new avenue of med research… because understanding digestion is near non-existant in allopathic medicine.
All the best in your research, but you do know in the US one has to have permission and disclosure to harvest medical research from human subjects… and even though this is not physical but anecdotal it would make an interesting legal discussion.
I am 10 years out from my RA diagnosis. I went to Mexico with my friends (we all turned 65 this year) in the beginning of February this year. I made it 2 days, then back to the lounge chair and bed. My friends completely don’t understand how anyone could need that much sleep, and how it takes a few days to get enough energy to shower. They want me to have a sleep study, maybe it’s sleep apnea? Your diet? What about your Vitamin B levels? Vitamin D levels? Antidepressants? Try to exercise more. I try to tell them that it has been like this for 10 years. Off and on. I have good days, sometimes good weeks. Each day is a mystery. So, I will try the sleep apnea theory (have done everything else) mostly to placate them, but also in the hope that there might be one more thing out there I haven’t tried yet. In the mean time, my heart grieves for one more thing I have lost. The ability to walk along the ocean. Kick waves, pick up rocks and sea shells, stride along in the warm sun. My list of things I can’t do anymore continues to grow, and my hope for the future continues to dwindle.
Karen – so sorry to hear about all of the difficulties you are facing! It is so hard when those around you aren’t supportive and I think all of us have heard that X miracle will cure us. Nope! Sleep apnea does really affect your fatigue levels – even if we get sleep, but it’s poor sleep, we’re still exhausted. Hopefully you can find some relief soon so you can maybe do things again that were lost. Like a quick 5 minute walk on the beach, then sit and watch the sunset. It’s hard sometimes to find joy in things feeling like this, but trying to think of all of the positive things that you CAN still do helps! I actually opened a new jar of something the other day BY MYSELF! I wanted fireworks! Gentle hugs and restful naps to you!
I was diagnosed in January of 2007 and I was so bad off I was in a wheelchair and they said I’d never walk without assistance. I’m proud to say I am now walking without assistance, although I really should use a cane or Walker most times. I walk more than a block and I’m soooooo exhausted and hurting I want to cry, and sometimes I do.
Thank you for sharing this huge accomplishment of beating the doctors’ expectations and walking without assistance. That is a huge victory, and I’m sure so much persistence, determination, and action on your part was required to achieve it.
I also appreciate you opening up and sharing how emotionally tough it all is to be so tired and in pain. There are so many of us who can relate and who have felt that too, so your sharing that helps us all feel less alone.
I wish you as much comfort and energy as is possible with this rotten disease, and I hope you will continue to share with us any time you feel so inclined.
Hi CarolQ. First, let me echo Tamara’s thoughts on how great it is that you managed to defy expectations to walk on your own again. My wife, Kelly Mack (a contributor here), had to have a revision of an artificial knee several years ago. The new knee had so much flexibility that it brought into play muscles that hadn’t been used in over twenty years and that experts were not sure would ever fire again (get that twitch that begins movement). In this article she writes about learning to walk again and, much like you, dealing with the frustrations, set-backs, and day-to-day RA roadblocks: https://rheumatoidarthritis.net/living/physical-therapy/. Continued progress! Richard (RheumatoidArthritis.net Team)
At the age of 57 I’ve only been diagnosed with RA for 6 months after the usual roller coaster ride of blood tests, MRI scans and ultrasound. I’ve been taking Methotrexate for about 8 weeks but am finding it difficult to accept my new life. I have/ had a full busy life looking after my granddaughter, going to the gym and just being busy! I’m fortunate that my pain is low but the fatigue… That’s my worst problem. And no one can see it so it doesn’t exist, right?! And also everyone gets tired don’t they! I have a lovely family but I’m mum or wife etc and they’re all used to me being strong and active. I think at times they think I’m using RA as an excuse and am just being lazy and there seems to be no way to explain it properly and convincingly! It feels as if everyone thinks if we all ignore it it will go away. Has anyone else had similar experiences? Any advice gratefully received!
My heart goes out to you as you contend with this “new normal.” Life with RA is challenging, but the first year after diagnosis is particularly difficult. It comes with so many changes, including changes in expectations.
It’s true, people can’t see all the symptoms of this disease, but that doesn’t mean that it isn’t real. You and your family are having to learn about this disease for the first time, and hopefully they will learn that you are not making this up or using it as an excuse. Rather, you are contending with the challenges of a very difficult disease and doing the very best you can.
You may find this article I recently wrote helpful: https://rheumatoidarthritis.net/living/i-am-enough/. It is about not always being able to live up to the expectations we have for ourselves. I hope that it’s helpful for you to know that so many people write on this site and on our Facebook page about feeling misunderstood by relatives and that they’re letting people down. Your symptoms are real, you are not making this up, and you are not alone.
Please know that we are always here any time you have questions, concerns, or experiences you’d like to share. Please don’t hesitate to reach out if you’re wondering about something, need some validation, or just need to vent. Because we truly get it!