Sensational Headlines on Rheumatoid Arthritis & Exercise, Round 6
I got an email recently from a rheumatology magazine with a sensational headline about “exercise and Rheumatoid Arthritis.” The article linked to is a year old, but some of our doctors read these emails. And the public also gets confused by ridiculous headlines like “Nearly Half of RA Patients Are Sedentary. Here’s Why.” So, we’ll revisit the issue of “Rheumatoid arthritis and exercise.” Note that I’ll not restate every major argument or reuse every valuable resource on the subject; please click here to read all posts on “exercise with Rheumatoid Arthritis.”
What they think of why “Rheumatoid Arthritis patients won’t exercise”
Why are articles on Rheumatoid disease and exercise couched in this way? Asserting exercise benefits all Rheumatoid patients, but that patients just refuse to accept that “fact.” Look carefully at the quote above: however wrong the author’s assertion is on exercise, he’s correct on one fact: Most Rheumatoid patients do not believe exercise will improve their RA.
Let it be acknowledged that exercise correlates with better-controlled disease, but where is the proof that exercise improved disease in those patients? Isn’t it more logical to assume that patients with more ability to exercise do so?
Why is there such a grave misunderstanding of Rheumatoid Arthritis patients’ position on the issue of exercise anyway?
BECAUSE THEY DO NOT UNDERSTAND WHAT IT IS LIKE TO LIVE WITH RHEUMATOID DISEASE.
1) The Usage Principle
They do not recognize that when the disease is moderately to severely active, disease activity increases with physical activity. This is a rule that patients call the Usage Principle. (Yes, I invented the term a few years ago because rheumatology doesn’t have a word for a notion they do not know about or study.) This is not universal, but it is a key factor to understanding active disease, sometimes called “flare.”
From years ago when a patient told me she does impossible chores like washing dishes and pulling weeds before seeing her rheumatologist so that he will see swelling in her hands to the 2011 RPF poll of patients showing nearly 70% say physical activity consistently increases their joint pain, we know the Usage Principle reigns for a majority of Rheumatoid patients. Other than drugs, rest is the way to quiet “flare.”
2) Disparity on Rheumatoid disease activity
It is well documented that doctors consistently rate disease activity lower than patients do and often fail to understand the scope of joint disease activity, limiting it to “swelling” and “pain.”
3) Dissociation between swelling and disease activity
Inflammatory disease activity has been proven in a majority of Rheumatoid patients who were labeled as “in remission” due to lack of conspicuous swelling.
4) Disease activity is not measured anyway
A lack of awareness of patients’ disease activity levels results from a lack of adherence to recommendations for measuring disease activity and leads to care that is not consistent with American College of Rheumatology treatment recommendations.
What are Rheumatoid Arthritis patients’ actual views on exercise?
Two days ago, a patient commented:
472 “exercise” comments
There are nearly 22,000 public comments on this site and many times that in social media. I spent time studying all 472 comments on this site that mentioned the word “exercise.” Obviously, I did not find every reference since there are many related words such as “workout” that I did not search. Also, I acknowledge that this is not a scientific sample since patients self-selected by commenting on this topic.
All comments were divided into the 8 categories described. I classified each comment based upon key phrases and did not count any comment twice. It is impossible to qualify each comment such as some saying that the patient takes prednisone or “lots of pain meds so I can exercise.”
Dismissive remarks: doctors or others telling patient to exercise while conveying lack of recognition of the disease (97 patients reported)
Modified w/remission or treatment: tries to walk or other gentle movement or mild exercise with treatment or during remissions (72 patients reported)
Causes flare: tries hard to exercise but it makes the disease worse, causing general flare, more pain, swelling, dislocation, or damage (40 patients reported)
Yes: can exercise pretty well with treatment or remission (38 patients reported)
Impossible: says they wish they could exercise but find it impossible (71 patients reported)
Other discussion: neutral discussion of exercise involving a healthcare practitioner (18 patients reported)
Excluded: other context, non-patient, or comment by moderator (133 patients reported)
Impossible: doctor acknowledged as impossible (1 patient reported)
Do you think the experts understand patient opinions on exercise?
Do you think they understand the way the disease behaves in patients?
Can you exercise the way you want to?
Edit 11:35 a.m.: This issue is difficult to cover in one post. I regret not restating my mantra with regard to exercise and Rheumatoid disease: If you can do, if you can’t don’t. And to investigators my message: It seems the evidence in our community shows that those who can do, and those who can’t don’t. Let’s do some comparative studies with regard to other illnesses; and let’s not have more of these exercise studies without taking into account the functional status of the patients in question.
Postblog: It’s been over a year since I addressed this topic that the media pushes regularly against Rheumatoid patients. This is only the 6th post on this site specifically on exercise of 700+ articles over nearly four years. These are the only articles I’ve read anywhere on the topic of Rheumatoid disease and exercise that even begin to consider that patients are not either simply lazy or misguided.
Recommended reading
- Disparity Between Rheumatoid Arthritis Patients & Doctors over Disease Activity
- Evidenced-based Medicine or Easy-bake Oven: Tension Between Evidence and Reality
- Patients & Doctors Differ on Assessing Rheumatoid Arthritis Disease Severity
- Rheumatoid Arthritis Swelling, Take Two
I have never been one to exercise, even before being diagnosed. But now? Walking around the block is hardly an option when I can barely walk from the bedroom to the kitchen. Lifting weights is not an option when I can barely grasp a sponge to wash the dishes. I look back at all those times I could have gone for a walk and didn’t, and I think, “I wish I could now.”
Seems to me that those who push rheum patients to exercise against clear evidence that exercise can be harmful are laboring under a misapprehension: that osteo and rheum are closely related. I have osteoarthritis, and am very much helped by movement and exercise when it comes to managing pain and stiffness.
RHEUMATOID ARTHRITIS IS AN AUTOIMMUNE DISEASE, and therefore vastly different than osteo. That MDs are essentially calling rheum patients lazy whiners when it comes to physical activity tells me those MDs need to go to re-education camp …
That’s so true Casey. The best analogy for an inflamed joint is an injured joint. Telling patients to go for a jog on inflamed ankles is the same as telling them to jog on 2 sprained ankles.
Thanks for reading.
EGGZACKLY. Athletes who injure a joint are told to rest it. Rheum patients are in a permanent, consistent state if injury, right? Sheesh, you’d think a rheum doc would know that …
The last time I went to the Dr she thought I was doing great and my expectations were too high. I told her that my goal is and I gauge my disease on, “am I able to take my dog on a normal rate 20 minute walk without inflamed feet and knees?” Currently I can’t do it and when I can, I know I’m doing better. I would love to go to the club and do Zumba or whatever is the latest program they are pushing, but for now I’m just hoping to walk the dog. Are my expectations too high?
My blood is boiling after reading this! I would give anything to be able to be active as I use to be. I would love to work in my flowers everyday and clean my house in 1 day. I always have to pace myself even if I’m not flaring. Sometimes I can’t even do enough to pace myself. The pain is too intense! It’s too unbearable to move! I wouldn’t wish this horrific disease on my worst enemy, but I would like for all these FALSELY judging people to just live a flare 1 day! The pain is unexplainable!!!! Thank you Kelly.
Ps. I was always an active person and enjoyed it! I also wish I could hold my precious nephew babies without worrying I would drop them.
I had to do a cardio pulmonary exercise stress test which is performed on a bicycle. The resistance increases as you pedal to measure lung capacity and other performance details. I went as long as I could before the pain in my hips and knees was overwhelming. I wasn’t out of breathe from the pedaling, the resistance hurt. The doctor wanted me to go further and seemed surprised when I said I wanted to be able to walk tomorrow so I was stopping. The nurse was completely understanding and backed me up. As it was, there was enough information for the test but I still had difficulty walking and getting around for the next two days from that 10 minute test. My choice of exercise is much more gentle: yoga type stretches, walking and I am an artist so I do a lot of standing, lifting and stretching in my work. I’m very tired of medical professions who don’t want to listen to the people who come to them for help. Get a different job if you don’t like sick people.
I know what you mean after my 20th surgery to replace my rt knee, due to my for arm walker my elbows flared, so they sent me to a nursing home (sorry Rehab) anyway after cort. shots into my elbows, they said I had to do OT as well as PT. They had this hand strengthening rubber band device. I told them I tryed the whole squeezing the ball thing and I flared every time. I was told “I’m the professional” “this can’t hurt you” so she said do 20 so I did ten. Well, next day flare both hands. Needless to say my 1 week rehab took 4 weeks. and I spent Christmas in the nursing home (sorry rehab)
I have always been extremely athletic – I have trained martial arts since childhood (I am 40 now), ran a half marathon and numerous 5Ks, lifted weights, and love to swim. Being active is a part of me I am loathe to give up. Unfortunately, since my RA onset and diagnosis in 2011, some of those activities have been taken from me. Running is not an option – my feet and ankles couldn’t take it. Weight lifting is often difficult and painful. Karate (the martial art which I have trained the longest – 26 yrs) hurts – I always pay later for the impact of hitting bags and training partners in practice. Brazilian Jiu-Jitsu (BJJ – a grappling art) still works for me, as long as I start slow with a good warm up. BJJ lacks punches and kicks, and thus entails less impact for my tender joints. Finally, swimming still works for me. I feel very lucky that I can still maintain a fit and active lifestyle despite my RA – often excercise is the only time of the day when I feel relief. Granted, I hurt before and after, but during the activity – when my joints are warm and my mind is fully in the moment – I forget about any disability I may suffer. For me, (certain kinds of) physical activity is truly one of my only escapes. I cannot even think of the day that RA takes my last few athletic endeavors from me, and my heart goes out to all folks who have been crippled by this disease to the point that any exercise is impossible. Thanks for listening, and Kelly – keep up the great work!
I can honestly say, when I was first diagnosed in 1983, I constantly felt like my feet were falling off and my hands had been smashed with a hammer. But I kept on doing what I was doing. Even though it wasn’t active “exercise,” I was active and outgoing. My doctor didn’t tell me what to do or not to do, so I sucked it up and kept on doing. Fatigue was a factor, and I didn’t know it was part of RA. I felt lazy. But still, I did what I had to do as a young mom who lived on 26 acres. When I started working in an office and became sedentary, the RA started flaring more. And when I had a bicycle accident and everything hurt, I became very sedentary. In that 7 year time period after my accident, I had about a bazillion surgeries, and even more joint injections. I decided to reclaim my health and get back into active exercise. I started out walking. I had to drag my right leg for a year, but I did it. My energy improved, my joints improved. I got more aggressive with my exercise, and my joint pain lessened even more. The more I did, the better I felt. I have to say, exercise — regular, consistent, moderate to high intensity exercise has helped me more than any medicine ever has. My advice to anybody is to move. Maybe not run or jump, but move. Whatever you can move, do it. It has changed my life, and it’s changed my RA. I know a lot of RA Athletes who say the same thing. Exercise changed their disease. Not every exercise is okay for every patient. Find a way to move, and then move. That’s all. It will make you feel better.
Well, my rhuem seems to get it–somewhat. She has told me that under no circumstances am I to run or jog… my feet wont’ take it. With the proper footwear support (certain German clogs, New Balance sports shoes) I can walk a lot and I have a goat farm, so it’s pretty necessary. So, I’ve been told no foot pounding but I had better do something for my weight, which is compounding my foot problem. Alas, no swimming pool handy and the exercise bike is bleh. So, I will be doing zumba without moving my feet.
I have always been an athlete and now that I am almost 50 years old and have RA, it is a challenge. I am running another marathon this weekend trying to qualify for the Boston Marathon. I also swim between 50 min.- 1.5 hours a day six times a week. I have days I lie in bed all flared up thinking I have to get out and start my workout. So I hobble out and either get my running shoes or swimsuit on and throw back my meds. I do have joint damage, am much more tired than I used to be and in lots of pain but I just keep on going. I don’t know what I would do if I didn’t workout.
I’m in a different situation with my doctor. I used to be very active. Now every time I do any exercise I hurt myself, but I want to exercise! When I talk to my doctor and her PA, they both say if it hurts don’t do it. I am now in the situation that I am horribly out of shape so when I try something I don’t know if I should ignore the pain because it is muscular,or if I should stop (as they advise) because I am injuring my joints. I’m trying to do very light stationary bike riding and light weights so at least I am doing something, but it is all so frustrating. I’m so glad for this blog; I know that.
If 50% of RA patients exercise regularly, aren’t we way, way ahead of the general American population? Congratulations, people: despite overwhelming problems, a large number of RA patients do manage to exercise.
Personally, I feel best with SOME exercise. I still walk the dog, but we stay on the flat sidewalks rather than the hily mountain trails or the riverbed. I walk to and from work, but again, that’s flat and paved. It takes me 20 – 25% longer than it did a year ago, though. As a violinist, I wonder if the constant exercise and movement of my left hand is why it’s in so much better shape than the right.
That’s the good news. A recent afternoon of shopping with a choosy teenager about did in my feet and knees. Chopping vegetables for soup, using a screwdriver or pliers, or too many rehearsal hours wrecks my hands, wrists, and elbows for days. Forget the garlic press.
I have to wonder how I would feel now if I hadn’t been so active all my life. Probably much worse. If that was the case, I think I know what my reaction would be to being told to get some exercise. Not pretty!
my exercise when i am not having active flare ups is sweeping, raking and pulling weeds, that is – general yardwork; recreational – swimming and kayaking. due to permanent feet issue, i can’t really walk – i can shuffle around working but i can’t put on the miles walking to call it excercise. i am afraid to use biking other than a quick trip because i have found myself partway and the knee goes out and i can’t do the trip back. this is the way it is with ra.
I ws diagnosed Aug of 2011. I took all the “recommended meds” for a year, I was so messed up and tired! I had no memory, all I wanted to do is sleep I decided to seek another opinion and found a Dr who believes medicine is like soup. It takes a lot of different things to make it better I am doing some holistic things and no meds. After 6 months I feel 100% better. Granted I still have an occasionally flare up but I am tough and will push forward. I was just certified as a zumba instructor. DOn’t tell me you can’t exercise. When I have a flare up or feel the intense fatigue I get my butt moving. WOrk through the pain and get above it. Quit feeling sorry for yourself and do something about it.
Ahum! Well, Kim, my wish for you is that you’ll still be kicking butts years from now. Actually it is my wish for all of us. Unfortunately, most of us are, and will not be that lucky.
You have to understand, RA does not affect everyone in the same way and it is virtually impossible to measure one’s strength and energy level. When I was first diagnosed, I mostly had problems with one foot and one hand, now after 4 1/2 years it’s virtually my entire body, including my lungs, my throat, my spine that is affected.
It was mentioned here that doctors don’t seem to understand what we go through and the question was ”Can you exercise the way you want to?” I am glad that you do. BUT, Your last line leaves a bad taste in my mouth and shows me how much you also don’t understand what RA is and how RA affects most of us (and I sincerely hope that it remains that way for you). NO we don’t feel sorry for ourselves and YES we are doing something about it and it’s call: The best that we can, every single day.
All I can tell you is keep reading through this blogue and you’ll definitely learn that we are not a bunch of lazy a…s and you might also be more aware of what may be waiting for you down the road. One never can tell what lies ahead. May you be blessed with good health.
Kim, perhaps you could share the name of this doctor? Because I’d like to “stop feeling sorry for myself” as you put it, but for a while I was exercising every day but that just seemed to make my flares much worse, so I am open to seeing the doctor who helped you. I am a former skiier, scuba diver, and jogger, and am dying to get back to those activities.
Also, would you please consider the possibility that there no one-size-fits-all approach to this disease, because it seems to affect each patient differently. I think that any suggestion that there is will not help improve the morale of those who are having a harder time with their condition despite their best efforts to “get above it.”
Reading this it does not sound like I have the same thing that you have. That is likely correct since scientists think there may be more than one type of disease under the umbrella of rheumatoid disease so that one day they may be identified the way that cancers are. This would be the reason Terry makes a correct point. However, as Lou points out, rheum disease also can vary over time in the same patient. For decades I had what you describe “flares” but I do not now – only 24/7/365 systemic rheum disease. I hope yours stays that way for a long time. And I hope and pray for all of us that is in our future.
All comments are posted on this site except for the thousands of spam. However I’d like to remind all readers that there is a Comment Policy in place, detailed in the disclaimer. Just wanted to remind all readers that discussion is encouraged; disagreement is allowed; personal attacks are not.
Dear Kim, I’m sorry but I can’t help but feel offended by your comments. I am 41 years old and have been hit hard by this dreadful disease for the last 3 years. I was born and raised on a dairy farm and for most of my life was able to work like a man. My Husband was amazed at my strength as I was able to help him build decks, strip shingles off roofs as well as carry them up ladders. I delivered all 3 of my kids without as much as a Tylenol and walked around with a broken wrist for 6 weeks until finally going to the Dr. We also have a huge garden and can most of our own food and also butcher our own venison and home grown pork. When I am able, I still try to keep up with what is our way of life here in northern MN. When I’m in a flare for over a month with what feels like the flu, there is no way possible I can excercise. I have been a single mother most of my life while working full time and in my old days, got up before work doing my bow-flex, buns and abs of steel, etc. This is what RA has done to me: robbed me of all my strength and vitality. It’s not a question of wanting to do anything. I miss my old self so much and would do anything to have just a sliver of what I used to do with ease. When I do have decent days, I still go deer hunting, pick wild berries and make homemade jam, etc. and these aren’t simple tasks but very enjoyable and as I said, are part of our lifestyle. There simply is no “willing” myself to do anything when I’m barely able to stand long enough to do a sink full of dirty dishes. This disease strikes each one of us differently and trust me, if I could excercise again I would. Not only have I lost my body, but probably my career as a RN as well. I am on the road to disability as I can’t lift patients anymore nor stand on my feet too long or even sit too long. I’m glad that you are still able to excercise and hope this doesn’t change for you but know this; this isn’t a lazy man’s disease by any means and a little compassion goes a long way and what we don’t need is judgement and stereotyping.
Before RA, I walked 30-40 min per day on a treadmill, and lifted light weights. This was my routine for YEARS. But I began to hurt very badly, sometimes for days afterwards. So I guess you would say,it’s like conditioning, Exercise = Pain, No Exercise = Less Pain, I take less pain. I find even lifting light weights make my shoulders very painful and sometimes I can’t even lift my arms,for two or three days! It just doesn’t seem worth it! It’s upsetting for someone to tell me “You just don’t want to”. That’s crazy! I had a routine for years that I enjoyed, now all of a sudden, I get lazy?
Be careful of overdoing those shoulders. I’ve had RA for about 14 years now. I was having a lot of shoulder pain – had an MRI – my rotator cuff tendons are thinned considerably and it wouldn’t take all that much to tear them. Fortunately, I got on Enbrel about 10 weeks ago and my shoulder pain has disappeared (obviously had inflammation in there), but I’m mindful that I need to be careful. My right ankle (broken some 14 years ago) has also calmed down considerably since Enbrel and I’m out to walking 3 miles a day again, but again am mindful that my tendons are probably all pretty susceptible to injury (I’m 62 so there is some age factors going on there as well). One day at a time – just thankful that I can walk again without pain (for the moment anyway).
Kelly as you know, I have improved my RA symptoms amazingly by changing my eating-(no sugar or grains or vegetable oils) but I can count on things flaring if I exercise much. I keep telling myself to just walk for 20-30 minutes a few times a week for my heart health, but everytime I do, my knees, feet and hips hurt for at least 4 days, to the point of extreme pain, limping, and that in turn causes a reaction with fatigue and difficulty in sleeping. I don’t know the answer, and now that I generally feel so much better it is very frustrating to me to not be able to exercise my heart as I would like to. People who do not suffer from this disease (or similar ones) do not understand and I’m not sure they CAN understand-thankfully my family and friends are very supportive but I know many out there suffer alone.
Maybe something like a Nordic Trac machine would help? You wouldn’t have the pounding of walking.
What a patronizing article. I would love to be able to run, hike, swim, like I used to. I have, over time, gone from jogging, to a mostly walk/few minutes of interspersed jogging, to simple walking. Over the past year, as I have been desperately trying to taper Prednisone because of huge adverse effects, even a 10 minute walk is impossible most days.
I feel much better mentally when I can get out and move, but when I do, I pay. I would love to be doing more, but my body says no, definitively no! In the past, when the disease was somewhat in remission, It felt great to exercise, and I am happy for all who are at that point. But thank you thank you Kelly for Inventing the term the Usage Principle, which so well explains what it is like to exercise when the body is in a flare.
I do what I can, when I can, and I am blessed that I can even say the word exercise in my opinion. However, here’s a spin that the docs will definitely not ever consider or be willing to validate: When I do have a “good” day/hour/minute the first thing on my mind is NOT exercise. It is all those things that I can not do when I am down. Laundry. Dishes. Take down the Christmas stuff. (Our tree is still up. Nuff said.) Bills, filing, stacks of undone or delayed work/responsibilities/duties – get caught up on all the stuff that you put on hold because it was hard enough to hold up your head yesterday. On and on. SO hard to say “oh I feel like I might be human today, let me exercise to make my doctor believe in me” instead of “wow maybe I can get that pile of laundry off my couch and actually have clean underwear in all the drawers before I feel like crap again!”
And NEVER does my Rheumy even address the depression that tends to go hand in hand with this kind of chronic illness. SO you are battling physical AND emotional illness uphill both ways in the snow.
my tree is up too, Dianne. 🙂
My tree is still up too! I wouldn’t let my husband take it down last weekend though… it is very pretty, and I’ve been feeling pretty bad and spending a lot of time sitting in a chair facing the tree while using my computer. I’ll be sad when it comes down…my husband is saying this weekend! The deal is, the kids (mostly) and I put the tree up, he takes it down. Maybe I can go straight to Valentine’s Day and find something cheerful to put up.
The only reason my tree is down is that one of the cats knocked it over and it was kinda blocking traffic . . .
My poor mom and dad had to put my tree up and come back to take it down. Talk about feeling like a heel.
I’ve noticed that a lot of RA people who don’t exercise, think those of us who do obviously do not have it “as bad.” Sometimes it seems like a competition as to who can have it worse. In reality, nobody knows what any of us feels. I have RA with lupus overlap. If you look at my feet, you will wonder how I run. My toes are cocked off every which direction, and my toe knuckles are swollen on the bottoms of my feet. That is a constant problem that I deal with. I figure my feet will hurt whether or not I run, so I run anyway. I’ve had synovectomies on both my knees. I run anyway. RA does damage, not running. It just helps me cope with other things. Is running for everyone? No, it’s not. But some type of movement can be done by anybody. There’s a lady at my gym who is very deformed by RA. Yet she is there every morning, doing what she needs to do to keep the rest of her body healthy. She’s pretty amazing. Even if you just have to sit on a big ball and roll around, at least it’s something. “Something” is always doable. And “something” will help your overall health. But don’t judge the exercisers just because we get out and do stuff. We all do the Frankenstein Shuffle to the bathroom in the morning. We all sometimes wake up in the night because our elbows hurt too much to roll over. We all go through that. We just handle it differently.
Very well said Jeri!!!! 🙂
It’s never a competition. I have been on all sides of it, from complete remission and an active lifestyle to not being able to go to the bathroom without help. There may be jealousy or wistfulness about someone else being able to exercise, but never competition. We ALL want to be able to do more! And despite what you say, no, it’s not always possible to just do something, anything. And that sucks.
It IS possible to do “something.” Maybe not every day, but most days. You have to sit, so sit on a big ball and roll around — work your core. If your hands don’t work, move your feet. If your feet don’t work, move your arms. Just move. That’s all. And yes, often times it is a competition as to who has it worse. Go look at any RA discussion board. It’s depressing. It’s very distressing to see people just sit down and do nothing. Fight for your health!! It’s the only body you’ve got. If you do nothing, you will never be able to do anything. Fight it. Your health is worth fighting for. You owe it to yourself, and you owe it to the people who love you.
I have been reading The Warrior for almost a year and have learned so much about the incredible variety of experiences and responses to this disease. I don’t know if age has anything to do with how each of decides to manage the aspects of living every day with it but, I am turning 70 this year and first had the first symptoms RD about 10 years ago. No matter the ebb and flow of relief provided by meds, exercise/movement is imperative for me – both psychologically and physically. I feel better mentally and otherwise with walking, Tai chi, yard work, laundry, etc. At my age, I’m just pleased I’m not dead yet! I feel that whatever movement level I maintain will be of benefit as I age. It’s just that I don’t want to give up.
I was very active before being diagnosed over a year ago; took my dog on daily long walks, played volleyball with my girls in the yard and even in a competitive adult league, but since diagnosis, I am in so much pain mostly in my knees (because I have no more cartilage in my knees due to RA, xrays showed)that I feel lucky if I can walk my dog down the block or go grocery shopping and make it back to my car afterwards. I just want to be able to walk the distances I used to. Sometime I can feel and hear the bones in my knee rubbing against one another which freaks me out. So lazy, not at all because I still try, it’s just not the same as it used to be, because I am not getting much enjoyment being in constant pain and so fatigued.
I attend a gentle warm water exercise class. I am the only person there under 65. In general I can complete only 30-40 minutes of the 1 hr class before my body quits, and can only make 1 class out of the two a week. On bad days, I can’t go at all.
Yesterday was an in between day. I was hurting, but felt that I would feel more stretched out if I went to class; I hadn’t been able to attend for 2 weeks. It felt great. 4 hrs after class the flare began, and I got in my pajamas and began taking pain medication from 3pm-3am. Today I’m only a tiny bit worse that before I exercised.
That is how a “moderate” day goes for me. It’s not lack of motivation, or refusal to exercise. I know what happens if I don’t listen very carefully to how I am feeling. I have to know exactly how much I can use my body before tipping over that point into being way worse off because I did exercise. Even walking to the mailbox everyday is too much right now. It’s just how it is.
Pushing myself will only lead to completely out of control flares, and I’m having a hard enough time taming the current flares.
ARGH Dr’s and their “exercise studies”.
Just a quick comment.
Most Doctors and Specialist in this field have no clue how painful an RA flare up is. To suggest exercise to me is a cheap out. It just does not work.
MAybe its time to come together as a group and “walk and protest” to governments. Maybe becoming a bit more militant will open some eyes. Maybe it will create the focus we need.
There is so much fundraising for all kinds of diseases. Is there any for RA?
Just a thought.
Kees, yes, we are. This is what I’m talking about so often with the Rheumatoid Patient Foundation, founded by patients in this community who said the same things as you – something that is just for RA patients. The website is at http:/rheum4us.org And there is big news coming any day now – watch here on my blog for it!!
By the time I finish work for the day, I really cannot exercise. Ankles are always swollen, knees most days, hands and wrists most days. After work, I am so tired it’s all I can do to let the dog out, cook a meal and read the mail. I hate having to plan a separate day for grocery shopping (such a waste of a day off!), because that is all I can do before the pain and swelling become too bad and that is ignoring the exhaustion that comes with it. I would love to be able to do what I used to do, as well.This is sure not something I’m enjoying or what I had planned for myself once the kids left the nest.
And, dang, who said the tree was supposed to be down? How about some pretty hearts for Valentine Day, eggs for Easter and spring?
Hi Kelly,
I’m usually just a lurker here but I love your blog. I know you’re extremely busy but I’d love to hear your thoughts on the proposed diagnosis of somatic symptom disorder that will likely be in the DSM-5. It looks like it could hurt a lot of people with undiagnosed autoimmune diseases.
Best wishes,
lurker
I have to make a judgement call when it comes to exercise. I only have so much energy that I can expend before pain and swelling takes over for the day. I have the morning stiffness, but due to the usage principle, I have the evening pain and swelling. I usually choose to expend my daily amount of energy on working since I cannot jeopardize my job and insurance. I still cannot make it to work every day. Wonder if I chose expend that energy on exercise and thus not be able to work? I bet they would still say that I was a lazy whiner. Can’t win. Just try to make the best of each day and try a little time on the treadmill when I can.
I have to be honest, before RA I was never into exercise for exercises’ sake, but I was fairly active. I golfed and flyfished (in the stream) and worked in my flower beds and cleaned house and walked the dog and camped and canoed and hiked. When RA hit, all of that was out of reach. I started a biologic in September of last year – and there is no doubt that this has been a miracle drug for me but I have had bronchitis twice since I started it so it is a double edged sword for me. While I am on the medication I feel well enough that I have begun to increase my activity levels but have discoved just how much years of decreased activity can weaken your muscles. We don’t really get a lot guidance on how to recover from something like that do we? I think I need some sort of strength building program but I’m not sure where to get it. I’m pretty sure that this is a common problem with any RA patient even if the doctors manage to get the meds lined up to get remission or low disease activity. Unless they manage to do this inside of weeks rather than months or years, we all end up with significant deconditioning.
Interesting, on my biologic, I think that my doctor would say I was in remission or close. I have very little morning stiffness, only two or three tender joints, persistent swelling and pain in only two (maybe this is low disease activity – but it feels way better!), and yet, if I try to engage in activities that require pressure or stress any joint there will be heck to pay! Something as simple as scrubbing the tub and my wrists and fingers will start to hurt and puff right up! Walking causes my knees and ankles to swell and hurt, though I can certainly walk much, much more than I could before the drug. I am still easily tired but I am no longer wondering if I will have to leave my job.
I think once control, or semi-control, is achieved, there is a long road of physical recovery ahead of the RA patient that no one addresses. I’m sorry, but there should be classes on how to do this, but there aren’t because I’m pretty sure they think we should just be fine now, ;-p! When someone has a cardiac event, there is rehab and a dietitian, etc. It’s treated as a life changing event. This is a life changing diagnosis and really should be treated as such and it’s just not. Ok, guess I’ll get off my soapbox and on with my day. (((Hugs))) everyone!
Genius! I love the idea of help to get back after a medication starts working well. It’s difficult to do, but many other medical things have rehab afterwards, why shouldn’t RA patients after medication begins to work? I’ve done it myself, many times over, but it sure would be nice to have some guidelines instead of the trial and error I’ve done.
This is a good idea toward more comprensive care – there is a long list of needed things.
Also important to remember that the majority with this disease have not yet to the time when a “medication works well” and still are at that same desperate point of trying to have a life – work or take care of loved ones while trying to manage a sudden invisible disability and symptoms of systemic illness.
Oh, absolutely! Some people never have a better time. I’m going on 10 yrs of not having a “feeling better” period. UGH!
hahaha 😉 had to read your comment a couple of times because I thought it was about having a “good time.” I had to laugh out loud at myself – having a good time is important too. 😉
It’s hard to believe I’ve done this about 4 yrs & there is still such confusion about the concept of “flaring” – something I never heard of before I met other patients and never heard my docs mention – It must be human nature to assume that people are all the same or that their experience is like one’s own. Kind of what I was thinking in today’s blog too. All different kinds of people were created & it should be celebrated.
Kim, I am glad that you are doing so well and hope things are always so for you.I have to tell you it is a little cruel to tell the rest of us that, are not as well, that we are whining and in a sense lazy. I go to physical therapy a few times a week, for RA , degenerative disc disease , and a herniated disc. I go and suffer through what I need to because it looks good to the doctors and the insurance company. Then I come home and sleep for a few hours and after that i have a hard time moving around and doing what I need to do for my family. I would love to have my old life back, but so far it doesn’t look like that’s gonna happen soon. I believe and I know Kelly has said this “if you can exercise do and if you cant don’t”. I am sure there is no known magic cure. If there was,nobody would suffer from this maddening disease.
I have always been a very active person, I did competetive body building as a young adult. I owned and operated a horse farm, Managed a huge company. Exercised regularly.Let me tell you all about my December and January so far. I work part time 3 evenings a week, then days 4-6, I can’t hardly move, day 7 I can say I feel a little better. I do force myself to walk every day,my dog and I do at least 1 mile and try to do 3. My ankles swell and hurt, but I refuse to let this disease take that pleasure from me.I feel like I’ve been in a constant flair for several weeks, I want to be active, but it hurts so much. This is so very depressing. For those of you still able to exercise, I envy you, but am so glad for you also. Keep moving if you can.I hope soon to be able to get on a biologic and maybe feel better, the MTX is not working. Thanks warriors for all the info, encouragement, and advise.
I can’t believe the dr’s cannot understand the basics of “cause and effect”. I have an unbelievably demanding job physically. I have a vegetable farm (2 acres, done by hand) as a part time business and a garden nursery and gardening job as my full time job. I do far more work now than most of my healthy friends. However, since RAD, it is different, subtle to most people, but vastly different to me. I pace myself, I no longer work like a maniac. So far, for the last 2 years I have managed to get it done, but my quality of life post work is not the same. It is a constant mental struggle. Sometime when one shoulder is in flare, I hold it in a sling and work with the other. If I lose my ability to work, I loose my farm, my family farm. Like a previous person, I have reduced some inflammation from a diet change, but it is still there. I find weight bearing tasks to be by far the worst. I spent a good amount of time shoveling snow the other day, and paid dearly. I love to shovel snow, and remember the days when my muscles would tell me I’ve had enough. That is the main diffenence now,the pain after a task is DIFFERENT. The difference is that in all the past years I have never felt like my shoulders were ripping off after shoveling snow, just had normal muscle fatigue. A vastly diffenent type of pain. I try to explain this fact to my dr. How I long for the days of good muscle pain that went away after a good nights sleep. I had a 3 day battle with both my shoulders after shoveling, both. Try finding a good way to sleep when both keep popping in and out of socket. Completley out of their sockets or at least that’s what it felt like. Some days I can not believe what I’m able to accomplish with this disease, and other days I can’t believe that I can’t do things I used to, that I need to. I’m 38 and my 73yo mom works circles around me. It’s really a weird position to be in. Such a rollercoaster.
wow – i feel for you! i used to farm and garden (135 acres!) and performed as a musician (ran my own equipment). My agressive RA set in as i was phasing out of these activities in the northern snow shovelling climate. although i am quite older than you, i had to come to terms with all of it. i now have moved full time to central florida and love it. no more gardening or farming samll landscapes and potted plants) and limited performing (always with physical help or not at all) of course i only shovel sand occasionally! i can be very active but less under pressure – one needs to rest when in a flare & not use the good arm to pull weeds. Maybe it’s time to adjust your lifestyle – start while you still can – you can always go back to these activites if you go into to a “remission”. i wish you the best – and i have to say i do miss my glorious fresh garden veggies.
Let me first preface this by saying I don’t (yet) have a diagnosis of RA, just Sjogrens and synovitis (which causes severe pain). There are some things I can manage, but I definitely cannot do what I used to do. I’m in college, taking 3 science courses….lots of notes. And I have a hard time making it through my work because my hand and wrist hurts so much. Its bearable if I wear a compression glove and wrist brace, but I know I’m probably not going to be able to do much with my hand tomorrow. Same with my shoulder…the more I do the worse I get, though this shoulder has been in varying levels of flare for going on 2 years now. Nothing really helps it. Now I’m on mtx, I can walk pretty much every day. But there’s no way I can ever go back to doing things I used to love, like yoga and archery because my arms just can’t take it.
I have been on methotrexate for 14 years. Were I to do it again, 10 years ago I would have started Enbrel. Back then, however, docs were still a bit nervous about it. I’m still nervous about it, but do enjoy getting my life back. The swelling has gone down in my hands and I can now see more clearly the damage done, but still nice to have rid myself of that stiff feeling. Just remember , metho slows down the disease, but it doesn’t halt it so over many years, the damage can slowly pile up on you. Always a difficult decision to move on to the biologicals – there are certainly risks and they don’t work for everyone. In my case, I seem to be doing pretty good after 10 weeks on Enbrel, but then who knows how long that will last? I’m also trying to follow the advice of those on Paleo Diets and JJ Virgin’s diet – anything to avoid inflammatory food.
I was diagnosed in 2010. In 2009 I climbed a mountain. It has taken all this time to find the right meds, for now anyway. I started warm pool therapy one month ago. It is working very well, and I am getting stronger very quickly. There was no way I could exercise before the meds started working, and I’m not sure how long these meds will work. I have tried a few different cocktails, and they seem to work for a short period of time and then they just stop working!
So for now, I will keep going to the pool. I just don’t know how long I can do it.
And what does one do when they are instructed by their rheumatologist to not exercise? That happened to me once. And my doctor was relatively young and lauded for supposedly being so up to date on RA. Even doctors don’t always send a consistent message on the importance of exercise.
And for those of you who click with your docs and/or find exercise something you can do, that’s great. But think about what you are saying. You are suggesting that we all have/are able to do that. You are not omniscient. You can’t possibly say that without knowing all of the facts unique to each patient.
On the flip side, I respect those who can exercise despite their pain and stiffness. I for one do not doubt that many of those who can exercise still suffer terribly from this disease.
This whole conversation saddens me. RA patients being so negative and judgmental towards each other. We are on the same team, people. If we can’t stick together and be supportive, that is a shame and squanders an incredible opportunity for all of us to speak with one voice and perhaps actually, finally, be heard and understood by others.
Well said Tracy.
We need to compare ourselves and our disease… not compete with each other.
This topic has occupied my mind for a while now. Personally I would like to be more active and think that I would feel better if I were but haven’t been able to achieve it, why?
I work a full day, often more than a full day, at a demanding, stressfull job, when I get home at night I am often too tired to even cook dinner before bed.
Since RA I now require 9 or 10 hours of sleep instead of the 7 I used to get along with, 2 to 3 hours I no longer have to work with in my day.
Because it takes me longer to get moving in the morning I go into work a little later, no time for that in the morning.
I have assumed the care of my elderly mother and while she is still active and reasonably independent she does require me to take her shopping and run errands for her. Much of my weekends are absorbed in these activities.
I know these sound like excuses – they are – but as RA patients we have very limited amounts of energy. It can be very hard to decide to expend that energy on exercise knowing that you have only so much. How much can I do and still be able to function the way I need to tomorrow?
I think most of us do engage in simple stretching and maybe even some gentle yoga or tai chi but this article talks about higher intensity exercise. “42% never once had more than 10 continuous minutes of moderate to vigorous activity during the week of testing”. I have to give some more thought to that since it has only been in the last few months that climbing my own stairs has become a reasonable achievement!
I agree Leslie. I only have so much to give in a day,and for me it has to be to my family to my kids. I often feel very bad for my two youngest they only had that fun loving bundle of endless energy mom for a few years, so I choose to give what energy i do have to them. we are all in different stages in this disease and in our lives 🙂
Hi Leslie & Bonnie – thanks – I’m just listening – what I’ve done for four years more than full-time.. reading & listening.
Energy is another aspect – good point. & for so many it is not about energy – they can’t walk so they certainly can’t run. they can’t squeeze toothpaste so the certainly can’t pull a rubber band if their tendons are inflamed. There is such variety – some only have a few joints affected – some all. Some have a flaring-remitting pattern and some are 24/7. No universal answer for all. I guess that’s why I think its ludicrous for a researcher or journalist to intimate that it is appropriate or beneficial for all.
It looks like most patients actually do what I’ve always said also: Do what you can. If you can, Do. If you can’t, Don’t.
There is such wide variety in this disease but the stats do seem consistent with the minority who either have 1) a flaring-remitting pattern to the disease, 2) not all joints affected, or 3) who respond to treatments well enough to do anything near what is considered by experts to be “exercise” – –
The only question at all is whether the majority who are not in any of those 3 categories are lazy, crazy, or lying (in less polite terms the same things said in these studies).
Kelly, I agree just like no one medical treatment will work for all RAD/RA pt’s ,(and from what I am learning not all pt’s find a medical treatment that works for them) exercise will not benefit all RAD/RA pt.
yes thank you for your reply. and my beef is with any doctor or journalist who blames sick people for how sick they are instead of listening & learning to find out how to help them.
several sad stories on this site & on FB of people with much greater injury & permanent disability because they tried so hard to please doctors by pressing thru the pain to do too much. we just need a little sanity on this matter.
such as this recent thread http://www.facebook.com/arthritiswarrior/posts/126440350857695
and one patient’s story there:
“Fifty percent of the bones in my feet are eroded. I wear custom shoes and inserts. Before my RA ruined my body completely I too spent 7 days a week exercising, hiking, climbing, camping, running, you name it I did it. I pushed myself to the point that narcotics could not kill the pain and still the doctors kept saying exercise, it’s good for you. I tore tendons and got bursitis and still they said exercise. I tried to reason with them, to explain what exercise now does to my body. They couldn’t “hear” me. Not one of my doctors had RA. In defeat I am ashamed to admit that now I lie to them to keep the peace. My mother had severe RA. She too was athletic. I recall her bitter indignation and frustration when the doctors told her to exercise more. She sat sobbing in the dark in her bedroom not even able to get around any longer. We are both slim and trim. The heck with the experts…”
I exercise on a regular basis. I do weights and cardio. I chose to do this several years ago even though it does increase my pain because I am managing two chronic health conditions RA and diabetes. I modify my exercise to decrease pain as much as possible. I do exercise machines as free weights make my back hurt. I do low impact cardio machines as my feet and back can’t handle any kind of impact. I do not walk its too much for my back, hips and feet. I am able to do this because my knees and hands are not affected. I do not see benefits to mr RA by exercising but I do see benefits to my overall health and diabetes. So far I have been able to stay off of insulin.
I feel the need to add one more comment here.
As we all know, RA is plagued with misinterpretations and misunderstandings every which way you look. Now, combine this with the words ‘’Exercise’’ and ‘’Activity’’ and you’re in for a long trip down the crooked road to ‘’Misconceptions’’.
A while after a car accident (and a long way from convincing her to test me, yet again, for RA) my Doctor asked if I exercised. I answered that I do a lot of gardening, I take care of a large house, that I walk my dog, that I like horseback riding… and so on. As far as she is concerned these are not exercises… These are hobbies she said… exercise is (again in her idea) biking, jogging, swimming, mountain climbing and so on. (By the way, to her, the pain was in my head.)
O.K. Here we go.
Definition of Hobby: An activity or interest pursued for pleasure or relaxation and not as a main occupation. (in the dictionary)
I read through the comments that some of us like or used to like jogging. I’ll use this as an example.
SO, if you like to jog you are not exercising you’re just having fun, it’s a hobby. If you like walking the dog it’s the same thing. Personally, I hate jogging.
Are you still following me? I’m sure you all do. And I’m sure there’s no need to say more.
Exercise is not limited to cardio as physiotherapy is not limited to stretching. There are nuances that should be made clear. We all, including doctors, nurses, the medical world, and especially the media should understand this. Reporters, from what I imagined, are professionals whose job is to master the art of putting words together and expressing ideas in articles for us to read. I did say ART, and I have to add that in my opinion ‘’not all reporter are talented’’.
What makes us human is our differences. What makes us strong is standing together. We don’t all have the right words to express ourselves but, one thing is for sure, if we have RA, we are all dealing with a horrific disease no matter how you say it. We all deal with pain and we are all limited somehow. Whether you like it or not, whether it’s a good day or not, we are all Warriors. I refuse to believe that any of us would just sit around willingly waiting to die. We do what we can, when we can. And we are all Strong, for any pain, no matter what pain, is always painful to whom it hurts. There is no right or wrong way to deal with it. And since we don’t know how this illness will evolve for each and every single one of us, one can only guess whether what you are doing today is helping or not. Only time can tell.
So I say, do what makes you happy no matter what it’s called.
Shy have I not looked at this site befote!?!?! I AM understood! I am in tears knowing I am not alone. While my doctors are pretty good, it is still hard to explain that exercise hurts! I hear all the time that I will get used to it. Ha! You try to get used to it! You can’t even try to do it consistently because it takes you at least a week to recover from oneday. Besides that, hearing people tell me that they have “arthritis” too but they feel better when the exercise and eat differently. And they have arthritis, not RA. People nowadays hve to compete with everything and try to belittle others and I can’t stand that. Ok, just venting. I am hlad I am here. And I have had a flare start today and I haven’t been able to do much all day. Hot dogs for dinner! And yes, I have tried a gluten free diet and that didn’t help either.
Welcome, Kara. I’m glad you found us. You summed it up so well. & Hot dogs for dinner sounds good to me! 🙂
I read your post last night, Kim. I am still upset. So, I am commenting on your remarks. “WOrk through the pain and get above it. Quit feeling sorry for yourself and do something about it.” This website is the one place we should all feel safe and above criticism. This is the place we should all be able to whine and feel sorry for ourselves. Some days I can barely move. Some days the pain is very bad. Some days I DO feel sorry for myself. This is a cruel disease. I know several other women with RA. All of them are brave and strong. They have good dispositions and usually display no self-pity but rather display a steely determination to go on despite the pain and loss of ability. If you are ever unfortunate enough to be laid low by the pain, I hope people are kind to you and don’t tell you to “quit feeling sorry for yourself”. My experience with RA spans over 42 years. I can tell you, if you can push through the pain now, that doesn’t mean you will always be able to do so. My advice is to be gentle with your fellow RAers because someday you may need them for support and understanding….very few non-RAers are able to be truly supportive because they don’t understand the pain,the feelings of loss,the anger and the helplessness.
I have always exercised, from way before I was diagnosed. I live in pretty much constant pain and stiffness, but not debilitating pain and stiffness. I have been reading RAWarrior for about 6 months and have wondered if I have been incorrectly diagnosed because I can still work, I can still exercise, and I can still stay active with my family. The thing is, I am in pain being active, and I am in pain being still. I might as well be active and have a few laughs along the way. Believe me; I am thankful to God that I can stay active. There are three activities that I can honestly say I feel no pain: Pushing myself at the gym (Cycling & weight training), making love to my wife, and drinking Scotch whiskey. I do as much of these three as I can. I don’t feel any worse or better afterwards, just pain free while doing them. Would you say this is one of the variations of the disease, or have I been diagnosed incorrectly?
I can only guess Jonathon and I hope others weigh in as well. If you have been diagnosed by a good physician, my guess is that this is as you say “variation” in the disease. We know there are between 5 and 10 percent that are milder cases. But if even if your disease is not mild, perhaps it is not affecting the tendons and supportive tissues the same way it does in others. I’ve written at least 5 other posts on this topic at times pleading with people to do as much as they can while they can – in case that changes and one day they can’t. So it sounds like you’re doing that and while the gym may be healthier than the whiskey, there’s much to be said for holding on to your normal as long as possible. “Normal” is something people with this disease often have to grieve.
I find all of this quite interesting. How often is it that RA patients refute the benefits of say, looking at one’s diet, citing the ‘lack of proof’ and ‘my rheumy told me that diet doesn’t contribute to my RA nor can help it’. Result: no need to make diet changes. Convenient.
Now, an actual study states that a good portion of RA patients are inactive because they do not feel it will benefit them, and/or are unmotivated to engage in physical activity. And what is the reaction? “The study is wrong! They don’t get it! They are out to get us! etc etc…” So now, research, used as a basis for the diet issue, is provided, yet rejected. Same with dr.’s prescription. Take his/her word on the diet thing, but not in this case. Wow.
Compounding things with amazing irony is a laborious, unscientific quantification of online posts attempting to illustrate that the researchers don’t get it. How is this productive?
My first reaction reading the study’s findings was that a widespread exercise of self-reflection required within the community. There is a general lack of promotion, if not a steadfast resistance, on this page to anything non-drug in the RA approach, and these findings do not surprise me. What should have been an eye-opener and opportunity to further the cause has turned into a self-defeating exercise of resistance and attack.
If there are perceived issues with the study, I believe a more productive undertaking would be to contact the research team, express the concerns, and start a dialogue with them. Northwestern is world renowned; they aren’t idiots and I can’t imagine them not wanting to engage.
One question I would pose is the basis for the conclusion that the patients who didn’t engage in physical activity for more than 10 minutes in the week were skeptical of the benefits and/or unmotivated. If this were simply pure speculation, I would have an issue with the conclusion (I would be unpleasantly surprised if this were the case and it would cause me to reinterpret the study’s findings). If it were based on direct statements/interaction with the patients, then the claims, as it relates to the study, would warrant merit. And if that is the case, then such provides further justification that a major perspective shift within the RA community is due.
Please re-read the 3rd paragraph. I did not say the study’s result was wrong – it was right. I simply question the assumption of the writer that all patients can exercise in the way implied or that it would benefit them. The other articles in this series provide a solid medical basis for my argument including many reputable resources which suggest that exercise during periods of active disease is damaging, not beneficial.
thank you Kelly.
I’ve been actively following your excellent blog/website for a long time now. I don’t ever remember a topic which provoked such a range of responses, some feeling not so friendly. I had to take a deep breath after reading some of the comments and decide whether and how to respond.
I greatly appreciate that you have responded to all comments in such a rational and straightforward manner, while emphasizing that we are all at different stages of this disease. I stopped following several RA websites in the past when the discussions turned weird and hostile – so thank you for keeping your site a wonderful and supportive place to visit.
I am another one of those that just going to work everyday takes every bit of resolve and energy I have and don’t have. I wasted $500 for a YMCA membership hoping to get some exercise. Been there 2 times in 4 months. By the end of the work day I am in so much pain and exhausted to the point I only want to go to bed when I get home. There have been times my shoulder gives out while trying to make a turn while driving and I’ve had a few close encounters with other vehicles and light poles. It has been a month since I’ve had the energy to even prepare a decent meal. My meals consist of yogurt, peanut butter, instant oatmeal and milk. Getting up and down the basement steps to do laundry is agony and is now only every few weeks I can manage that chore. Stepping over the side of the tub to take a shower without any grab bars is turning personal hygiene into something scary. I am not able to have any social life including visiting with my children and grandchildren. Its just work and home to bed. This is not who I use to be and not something I dreamed of being when I was a little girl. Rheumatoid Disease is a mysterious and cruel thief.
Lois, I’ll say a prayer for you. I had the same problem. All is did for a year was eat, sleep and work. Even going out on a Saturday was something that could cause me to miss work on a Monday. I am blessed and was able to retire on disability in 2008. Now I work 3 days a week for 6 months out of the year at my old job (the hourly wage is 1/3 of what I used to make). But now even that is becoming too much. I dread not being able to work at all. But like you said, this is a cruel and mysterious disease. God bless you.
The way I look at it, there is only one person who lives in my body and knows what I go through and that’s me. Im learning to pay attention to my body’s wisdom. I’ve started daily documentation, so i can find out where that tipping point is – ie…. the activity level and things I do that send me spiraling down with pain and puts me in bed. For example, I can go for a very slow 20 minute walk with no problem but 10 minutes cleaning the microwave sends me to bed and totally flared.
I have no desire or energy for defending myself against other people’s judgements about my lack of capabilities. They know nothing about that and opinions are a dime a dozen. I feel very fortunate that the people who matter to me have compassion for my disability. I have compassion for myself also. One size fits all advice has no room in my life. I’m working on honoring my body by taking care of it, not beating it into submission.
I just posted on this issue. I love to lift free weights. My wrists and shoulders are weak and painful. To be pain free consistantly to keep the gains I make.
But at last a person suffering from RA is recommended to concentrate on exercises. I have also experienced that exercise is the way that has been helping me in reducing the pain and stiffness. It all depends on the body strength how the therapies will put an impact.
I am glad to read all these posts. Even Kim’s who unfortunately needs to apologize for hurting people with her comments. My 9 yr old daughter got psoriatic arthritis ( RA) after being on lithium which made her psoriasis out of control which in turn triggered the RA. I got her in remission on MSM and omegabrite for years until Stanford did some screwed up form of acupuncture on her ( I thought it was traditional chinese acupuncture and they put electrical stimulation on needles: BIG mistake according to acupuncturists later) Anyway, I refused to put her on Methotrexate, enbril or remicaide. They threatened me, said she’d have massive damage. 11 years later, no drugs, and only small amount of damage in one finger joint. 2 years ago, the FDA blackboxed biologics for children due to lymphoma. I told the doctors to NEVER again tell me what I should do or not do….She has ALOT of pain, exercise does NOT help. I have been trying to get her to go on a gluten free diet. She said she notices she is better when she avoids breads, pasta etc. I jsut wish she would go all out. Best wishes to you all
Hello. I so feel for us all. Confusion reigns. Inconsistent instructions are risky in the extreme. We are the ones that sit with the damage. My rheumatologist did not recommend exercise to me. She was pleased when I consulted an Occupational Therapist, who trained me how to use “the big joints” rather than the small ones, and helped me learn coping skills for some basic tasks. But I think the thing that has helped me the most has been my full range of movement program. It is a series of slow, measured movements, for all my joints, which I try to do whenever possible. NO impact, NO weights, NO sudden jerky movements. These exercises are not really exercises, to most people’s way of thinking. But they help me to retain much of my flexibility that I would probably otherwise lose. I do them every single day that I can. And when I can’t, I don’t. I really do agree that people oversimplify what it is to live with this disease. I wish that it were not the case, but it is. This is what works for me. Wishing everyone many low-pain days…. 🙂
I would love to exercise..,and work towards my black belt if only the bursitis in my hips would go away. Working with a dual bursitis flare since March ’13. I darn near needed a wheelchair to leave the Route 66 car show as I was photographing the event for my husband. He practically carried me (and the 75lb camera bag) back to the car.
I am 2.5yrs into my diagnosis. Since being diagnosed, the pain and disease has steadily spread throughout my body. Sometimes I wonder if I had not been diagnosed, if I would be this bad today. However, regarding exercise….as much as I would like to, it is physically impossible. I am already in pain, why do I want to add insult to injury (literally)? My RA doctor understands this and does not push the exercise issue, however, I am also Type 1 diabetic, and my endocrinologist just doesn’t get it. I have not yet tried aquatic exercises and I would like to. Our gym here keeps their pool a warm 80 something degrees and the warmth of it might be soothing. I just keep on keeping on, take my meds and hope for good days!
I have always excercised and would love to keep up my old routine but its like you said ‘running on 2 sprained ankles’ I know it would be stupid to try cardio when I’m in so much pain. I will push myself sometimes and go for a walk because that’s what I miss the most but I know that night and the next day I will suffer. Everytime I go to a Rheumy they ask if I exercise and I say I can only do mild stretching, they mention swimming but that again hurts my joints too, they tend to glaze over the issue of pain and make me feel like I’m the problem not the pain – I swear some of them think we’ve gotten this way because we’re lazy “if you don’t use it, you loose it”. I too end up overdoing things before going to a Rheumy so they can see how much pain I’m in but they don’t see or listen!
I have been trying to exercise hoping to get more energy, but, although it does not seem to be causing any flares, I’m way more exhausted than I was. My joints ache more, though not swollen, and I’m more tired. So, it does not help. At least not for me. I’m not overweight, I eat healthy, and there is nothing that can improve the energy level. Not sleep, and as I have learned, not exercise either. 🙁