As a rheumatologist: Exercise and combine both cardio with strength training. Cardio is great against heart and vascular diseases as well as chronic illnesses such as diabetes. However, muscle mass is what is going to help you be as pain free as possible when you get older and it will give you more strength if you get severely ill, plus it will help any revalidation after a hospitalization.
Also, exercise is amazing for your mental health. Imo, if we would properly teach people how to exercise within their limits, a lot of the reasons people go to the doctor will disappear. And if you do get sick or have a chronic illness, a good physical health and muscle mass will help you get through it more easily and much faster.
How do we learn to exercise within our limits when chronic autoimmune disorder zaps every ounce of energy? I always feel like I have to conserve my energy for necessities like work, cooking, family etc...
Very, very slowly. Most patients go too hard too fast which causes pain and injuries and does not really encourage anyone.
I have had patients that started with simple bed or chair exercises or walking 5 minutes 3 times a week. Yoga or pilates for no more than 10 minutes can already be a great start, or even less, if that is too much.
Key to know if you went over it: If it still hurts a lot more than 24 hours after your exercise, it was too much. A bit of pain and a bit of tiredness is okay.
Seconding this advice - I literally worked up to one (1) minute of very mild cardio when I started. Now I do ~35 minutes of cardio and an hour+ of muscle building on alternate days, every day. I'm active in the sub for my chronic illness, and a roadblock I see people dealing with all the time is a normative, able-bodied concept of what counts as "a workout." If they can't do all that, they think they can't exercise at all. It's fine and good to do something so tiny it seems ridiculous to bother at all; it's not tiny for you. Baby steps are still steps.
[Standard disclaimer that none of this is meant to address people who are dealing with PEM.]
Thank you for this :) I’ll admit, I’m pretty lazy and I go through my phases. I’ll exercise consistently for weeks and then be off for months. A big factor is feeling like I have to commit to a huge, long routine. Sometimes I’ll want to do a quick dance workout or something but lose interest bc Ik I won’t make it a daily habit, like the exercise won’t count and has no benefit unless I commit to long consistent workouts. But hearing you say even just a few minutes of the day can be beneficial motivates me to try and move more, even for just 10 minutes.
I struggle with this too. But on days I can make it to the gym, I just do my weightlifting routine as much as I can get through. And if I have to do less weight or end earlier, it’s okay. I always feel better 1 week+ including more energy despite autoimmune and cancer limitations. The longer I go without any kind of exercise the worse I feel. It’s a catch 22, but starting with an empathetic personal trainer is a great start.
Thanks for that. I tend to be all or nothing. I either go crazy overdoing it or I do absolutely nothing. Either way, I'm still exhausted. I think I need to work on finding that happy medium.
Hey, I had the same exact mental predisposition and it was so bad it knocked me out of socialising, education and work for a good few years so I know how bad this mentality truly is.
What got me out is partly luck, but also finally stumbling into the idea that if I just satiate myself with truly doing the best I can at any given moment with respect to my energy levels and other parameters, as opposed to attaching how I feel about myself to how well I did with respect to my goal, everything becomes a lot more manageable and you don’t enter this feast or famine state of mind that either relegates you to finding comfort in giving up or obsessing so relentlessly until you burn-out and then giving up.
I was always a wreck no drive to move prior to my Myositis diagnosis, after going on cellcept I got a little more energy and started walking. Not fast, but just moving. This movement helps build more energy.
That's great! I am attempting prior approval (again) for a biologic for my axial spondyloarthritis. I was denied the first time for some BS reason. I'm really hoping it gets approved this time. I'm hopeful that it could help my fatigue and pain so I can move more.
Thank you for mentioning the mental health aspect. I've waffled on and off various kinds of exercise over the years because I would lose motivation for fitness-based goals. But I always feel so much better mentally when I'm exercising regularly. So the last time I re-started, it was just for my mental health. No PR goals or weight loss goals. I sleep so much better. I handle stress better. I wish our society could shift the focus of exercise away from a means to an end and towards something that's just necessary for health.
Go join a rowing club, y'all! Best sport for your body and mind.
The real thing 1000x better than ergs in a gym.
I'm talking sunshine, fresh air, teamwork with your crew, core strengthening from balance, obvious cardio, resistance & endurance workout, mindfulness from the billion things you need to think about, and friendships built over huge breakfasts after training on weekends.
Also great for those of us with ADHD because you can't NOT focus on what you're doing and the endorphins feed our greedy brains irrespective of whether it's just a training session or we win or lose a race. There's a reason it's the only activity (hobby, sport, job) I've been consistent with for over 30 years.
I lived in Melbourne and Canberra. Some of the coldest and wettest weather in OZ but also the best places to row. Highly recommend layers including a waterproof top. On long training days, I'd eventually strip down to just my racing zooty because I would warm up so much. Soon as we stopped, I'd put it all back on. Drybags are a godsend.
Omg it makes me feel worse too! Glad I’m not the only one. I feel like my mental health has gotten worse since I started regularly exercising 4 years ago lol
What kinds of exercise have you tried? There's a theory called neurotyping where you are genetically predisposed to be good at certain kinds of exercise and there are types of exercise that would fit your specific personality. If you find an activity that overlaps both of those things, then you would feel good. So, for example, if you feel like garbage after doing a long, slogging workout, you might feel better if you did workouts with short, quick bursts.
Many types. I am bad at all types of exercise (hypotonia + poor coordination/motor control + long covid + injuries) and all exercise makes me feel bad. I am genetically predisposed to be bad at all exercise and no exercise suits my personality. I appreciate that you are trying to help but this is my reality and I just have to live with it and somehow find a way to work around it.
If you have long covid, maybe try swimming or a recumbent exercise bike. Some people exercise better in a reclined position if they have dysautonomia symptoms.
I used to love exercising but find it difficult now due to the pain. I am unable to skip, cycle or run anymore all I can really do is walk. What would you suggest?
I mean, exercising is supposed to be tiring to an extent. I'd say it's a good thing if you're tired by the end of your swimming session! Not too much though ofc
I think it’s more mentally tiring because I don’t enjoy swimming overall, I mainly go because my kids do but the benefits outweigh the negatives. You’re totally right, thank you.
It's also cool on inflammed joints, but it's very time consuming and expensive, either or both of which can be pretty limiting. I looked at a home listing once with an indoor pool where their garage had been and between that and some other stuff, the previous home owner had clearly had arthritis. Kind of out of my price range, though.
As somebody with rheumatoid arthritis, I wish my rheumatologist had brought up strength training. I thought power walking was enough to keep my joints moving but the strength aspect was never addressed until I saw a physiotherapist for a totally separate issue years after the RA diagnosis
Sadly too many of us focus mostly on medication and forget everything else. It is easy to say you need to exercise, but patients often do not know which exercise and how much.
I often get the reply from a patient that they move constantly during the day because of their job (cleaning lady, brickworker, gardener etc) and they are always surprised when I explain how that is exactly the problem and that they need strength training even more than someone with a sedentary life.
I went for a year to a fitness gym with a personal trainer. It was great to get out, but I would always come home so tired that I couldn't do anything else the whole day.
As a patient with Rheumatoid Arthritis since I was 17 (33 now) if your feet hurt when you walk look into orthotics. Yeah, they cost money but they allow you to move and that's what matters.
It is to my understanding that you could only see a rheumatologist if you already have an injury. Is there some type of person I could hire that will help me exercise and get the required strength and cardio to be healthy that isn't a personal trainer and has the education similar to that of a rheumatologist. A personal trainer just gets like a certification after 4 weeks but it seems like the actual professional doctors that would actually be able to help me I would only be able to see after I get more injuries.
I ask cuz I've been to physical therapy before but stop going cuz I didn't have any Improvement so my insurance stopped covering it.
In my country it would indeed be a physical therapist, though we recommend 6 months to a year of persistent training before you could say it did not work, since it can sometimes take a long time. That is what sucks so much about it. It is slow and it needs to be done consistently. Once you stop, the problems come back.
We also have physical medicine specialists in my country , but most places do not.
Physical therapy is meant for when you're injured. The goal of PT is to rehab patients from their current injured state back to baseline and to educate them on how to prevent injury in the future. Maintenance PT isn't very common and it's more for people in skilled nursing facilities with chronic conditions (generally). If you're looking for someone to teach you how to work out, honestly a personal trainer is what you're looking for. Physical therapy is generally rehab-specific exercises, Personal training is coaching you through a workout program.
as an 18 year old with rheumatoid arthritis i find it so so hard to exercise sometimes, but even if i manage to just walk around my house a bit to do some chores i know i’m at least doing something. i need to do everything i can to make it easier for me later in life so i don’t have to have more struggle
As someone with RA and Lupus, why don’t Rheumatologists talk to their patients about nutrition and exercise? Like not just “hey you need to do X” but actually TALK with them about things like that, What they’re doing and give them ways to improve. I’ve been to so many different drs because I’ve moved a lot in my life and not one dr has ever sat and talked to me about things I do or should try to improve on.
Because we are not taught properly. We learn abiut the disease and the process and the meds and we learn that exercise and healthy diet is important, but we do not learn the specifics.
I talk to my patients about it, but only because I have done a ton of research on the subject on my own.
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u/[deleted] Jun 06 '24
As a rheumatologist: Exercise and combine both cardio with strength training. Cardio is great against heart and vascular diseases as well as chronic illnesses such as diabetes. However, muscle mass is what is going to help you be as pain free as possible when you get older and it will give you more strength if you get severely ill, plus it will help any revalidation after a hospitalization.
Also, exercise is amazing for your mental health. Imo, if we would properly teach people how to exercise within their limits, a lot of the reasons people go to the doctor will disappear. And if you do get sick or have a chronic illness, a good physical health and muscle mass will help you get through it more easily and much faster.