It's hard to deadlift with arthritic hands
December 26, 2010 9:09 AM Subscribe
Does anyone have experience with autoimmune disorders, particularly rheumatoid arthritis, and exercise?
Usually, I run, lift weights, and do karate. I really, really want to be able to run and lift again, preferably without triggering another flare or keeping me on more prednisone than I absolutely need. Does anyone have any experience with this? My biggest problem is figuring out what degree of intensity is good and healthy, and what is too much and will cause a backlash. I haven't been able to find any concrete advice online, and my doctor rolls her eyes and says "tai chi and yoga." I'm not yet 30, and not quite willing to drop down to that yet.
Experience, rules of thumb, or resources that say something more concrete than "avoid heavy weight lifting" welcome. I'm in Austin, if that's relevant, and I'm uninsured and unemployed, so seeing specialists will have to wait for the moment. (Although I did see a PT last year, and she was not very helpful in this regard - seemed like most of her experience was with people who had no inclination to be active in the first place.)
Usually, I run, lift weights, and do karate. I really, really want to be able to run and lift again, preferably without triggering another flare or keeping me on more prednisone than I absolutely need. Does anyone have any experience with this? My biggest problem is figuring out what degree of intensity is good and healthy, and what is too much and will cause a backlash. I haven't been able to find any concrete advice online, and my doctor rolls her eyes and says "tai chi and yoga." I'm not yet 30, and not quite willing to drop down to that yet.
Experience, rules of thumb, or resources that say something more concrete than "avoid heavy weight lifting" welcome. I'm in Austin, if that's relevant, and I'm uninsured and unemployed, so seeing specialists will have to wait for the moment. (Although I did see a PT last year, and she was not very helpful in this regard - seemed like most of her experience was with people who had no inclination to be active in the first place.)
Not RA, but I have the autoimmune disease scleroderma, +/or Mixed Connective Tissue Disease, so some of the issues with exercise are probably similar.
The bad news is that you're absolutely going to have to figure this out for yourself. Doctors and their ilk don't know beans about exercise limitations in autoimmune disease. Your body knows what it can take, and it will tell you, but you have to listen very, very carefully, and understand that it won't take no for an answer. Our culture is supersaturated with messages that exercise is always beneficial, and telling us to do more. It took me a long time to accept the reality that activity will often make my illness much worse; the best doctors know this is true, but they have no better advice than "do what you can but don't do too much." It's very hard not to go over the line when the line is invisible, and it moves every day.
Don't write off yoga and tai chi. They can be tremendously beneficial, and challenging. An important side benefit is that these forms of exercise also do a great job of training you to listen to your body, so that you can better know when you need to stop. These disciplines are also full of instructors who have actual knowledge and experience helping people who are working with the frustrating limitations of various illnesses. Also, how about walking instead of running? Good luck!
posted by Corvid at 9:59 AM on December 26, 2010
The bad news is that you're absolutely going to have to figure this out for yourself. Doctors and their ilk don't know beans about exercise limitations in autoimmune disease. Your body knows what it can take, and it will tell you, but you have to listen very, very carefully, and understand that it won't take no for an answer. Our culture is supersaturated with messages that exercise is always beneficial, and telling us to do more. It took me a long time to accept the reality that activity will often make my illness much worse; the best doctors know this is true, but they have no better advice than "do what you can but don't do too much." It's very hard not to go over the line when the line is invisible, and it moves every day.
Don't write off yoga and tai chi. They can be tremendously beneficial, and challenging. An important side benefit is that these forms of exercise also do a great job of training you to listen to your body, so that you can better know when you need to stop. These disciplines are also full of instructors who have actual knowledge and experience helping people who are working with the frustrating limitations of various illnesses. Also, how about walking instead of running? Good luck!
posted by Corvid at 9:59 AM on December 26, 2010
I've had psoriatic arthritis for the past few years. I've found exercise to be tremendously beneficial, but unfortunately there really isn't any way to figure out what's good and what's bad without trying it. (My rheumatologist had a good rule of thumb when I asked him a similar question: try it, and see if you still hurt an hour later. If you do, don't do that again. My PT had much the same advice.)
You mention that you're taking prednisone; if you haven't considered it, you may want to look into one of the biologic medications for RA/psoriatic arthritis (Enbrel, Remicade, Humira, etc.). You'd need to see a specialist for a prescription, but the manufacturers have assistance programs that cover most if not all the cost of the medication. (Even though I have health insurance, I pay nothing for my Enbrel.) Enbrel has legitimately changed my life.
posted by asterix at 10:19 AM on December 26, 2010 [1 favorite]
You mention that you're taking prednisone; if you haven't considered it, you may want to look into one of the biologic medications for RA/psoriatic arthritis (Enbrel, Remicade, Humira, etc.). You'd need to see a specialist for a prescription, but the manufacturers have assistance programs that cover most if not all the cost of the medication. (Even though I have health insurance, I pay nothing for my Enbrel.) Enbrel has legitimately changed my life.
posted by asterix at 10:19 AM on December 26, 2010 [1 favorite]
I do not have an autoimmune disorder, but I've spoken with people who do have them (fibro, RA, etc). As the other posters say, it's trial and error. Ultimately exercise does help them with the pain and functionality, but up until then you have to use trial and error and kind of just push through the pain as much as you can.
posted by Anonymous at 10:26 AM on December 26, 2010
posted by Anonymous at 10:26 AM on December 26, 2010
Best answer: It sounds like you had the wrong PT. Physical therapists are absolutely qualified to help you in this regard, and can help ramp you up to an appropriately challenging level of exercise for you. Your best bet is to go see someone who is an orthopedic or sports certified specialist (they will have the letters OCS or SCS after their name). You can find them at www.apta.org and click on "find a PT."
posted by jennyjenny at 10:34 AM on December 26, 2010
posted by jennyjenny at 10:34 AM on December 26, 2010
Swimming offers a challenging aerobic workout that's easy on joints for days when you're not up to running. A pool membership is usually not too expensive, either. If you're not a member of a gym that has one, ask around at hotels. Sometimes they offer cheap 'memberships' to make more money off their pools.
posted by missmary6 at 10:56 AM on December 26, 2010 [1 favorite]
posted by missmary6 at 10:56 AM on December 26, 2010 [1 favorite]
I haven't dealt with active flares for years (had JRA so hopefully grew out of it, may come back some day though), so this may not apply for you, but pilates was better than yoga for me since I've never been very flexible. I took an initial class to get the main ideas for about 6-8 sessions and then have used a basic\intermediate cd since.
posted by ejaned8 at 11:01 AM on December 26, 2010
posted by ejaned8 at 11:01 AM on December 26, 2010
I've had psoriatic arthritis for about 5 years. Early on, I only had to take sulfasalazine and, once the meds were stable, I was able to run and lift (and yoga, kickboxing, swimming, etc) as if I were perfectly healthy. I went into remission and stopped all meds and was like new.
Then, about 3 years ago I had a bad flare. Before I got back on meds, I could barely walk, much less do vigorous exercise. I started on Enbrel and can exercise again. I do cardio 5-6 days a week, although I can only run a total of about 20 miles per week and make the rest up on the elliptical or the pool (so, I'm not "like new" again).
tl;dr: can do almost anything now that I have Enbrel. Without that, I could barely do anything. Sounds like you don't have Enbrel or Humira or anything - I'd want to check that out (when you get insurance).
posted by Pax at 11:29 AM on December 26, 2010
Then, about 3 years ago I had a bad flare. Before I got back on meds, I could barely walk, much less do vigorous exercise. I started on Enbrel and can exercise again. I do cardio 5-6 days a week, although I can only run a total of about 20 miles per week and make the rest up on the elliptical or the pool (so, I'm not "like new" again).
tl;dr: can do almost anything now that I have Enbrel. Without that, I could barely do anything. Sounds like you don't have Enbrel or Humira or anything - I'd want to check that out (when you get insurance).
posted by Pax at 11:29 AM on December 26, 2010
Yeah, as other people have said, it's going to be a bit experimental regarding what your body can and can't handle.
I've had PsA for a dozen years or so. Swimming and other exercise that is low impact on the joints has been good for me. I avoided yoga for years, and finally gave it a try a few years back. Now I don't feel good without it - it really helps me both physically and mentally. Running tends to be too jarring on my joints, if I do too much. Instead I take semi-strenuous hikes and long brisk walks.
posted by medeine at 11:30 AM on December 26, 2010
I've had PsA for a dozen years or so. Swimming and other exercise that is low impact on the joints has been good for me. I avoided yoga for years, and finally gave it a try a few years back. Now I don't feel good without it - it really helps me both physically and mentally. Running tends to be too jarring on my joints, if I do too much. Instead I take semi-strenuous hikes and long brisk walks.
posted by medeine at 11:30 AM on December 26, 2010
Don't think of it as stepping down. You're merely, out of the goodness of your badass heart, giving medical science time to catch up to your martial ambition.
(I can't risk getting hit in the head any more; no September for me. Yoga f'n destroys me, though. It's definitely a different challenge that remains challenging all the same.)
posted by fairytale of los angeles at 12:06 PM on December 26, 2010
(I can't risk getting hit in the head any more; no September for me. Yoga f'n destroys me, though. It's definitely a different challenge that remains challenging all the same.)
posted by fairytale of los angeles at 12:06 PM on December 26, 2010
(Swordplay! Not September! Goddamn iPhone/ Vegas cab interaction.)
posted by fairytale of los angeles at 12:07 PM on December 26, 2010
posted by fairytale of los angeles at 12:07 PM on December 26, 2010
Best answer: I think it all depends upon your body and whether or not you're in a "flare." I was dx'd with SLE (Lupus) in 1989, and many of my symptoms were similar to those of rheumatoid arthritis, including severe joint pain. For a few years after diagnosis, I was able to maintain my then-regular fitness regime, which consisted of 30 minutes in the AM on the treadmill, stationary cycle and rowing machine. I also rode my regular bicycle (nothing fancy, just an old Schwinn I'd had for a decade or more) in the evenings for about five miles or so. As long as I took my meds (mainly anti-malarials and anti-inflammatories) I experienced no unusual or excessive pain, unless I was in a flare, and flares were usually ignited by stress at work, in my case.
However, that was then and now I'm many years older and for whatever reasons my body is not as forgiving. I'm now at the stage where doctors encourage me to turn to water aerobics when it comes to daily exercise. However, I have noticed that I am able to maintain certain physical fitness routines without very serious consequences. By that I mean for example: I walk for 30 minutes every evening, and I'll definitely feel it in my hips and ankles and knees the next morning, but it doesn't give me the fever, vasculitis skin lesions and chest pains that are all typical of a flare. That is to say, I do get some joint pain, maybe more than I used to get from such activity, but if it doesn't trigger the typical symptoms of an auto-immune flare. I've learned to "work through" the pain and walk my 30 minutes the next day. And also use light weights with our Wii and so on. I stop if it hurts too much. As my first and wisest rheumatologist once told me: "The basic rule of thumb is, if it makes you feel bad, then don't do it."
posted by Oriole Adams at 12:27 PM on December 26, 2010 [1 favorite]
However, that was then and now I'm many years older and for whatever reasons my body is not as forgiving. I'm now at the stage where doctors encourage me to turn to water aerobics when it comes to daily exercise. However, I have noticed that I am able to maintain certain physical fitness routines without very serious consequences. By that I mean for example: I walk for 30 minutes every evening, and I'll definitely feel it in my hips and ankles and knees the next morning, but it doesn't give me the fever, vasculitis skin lesions and chest pains that are all typical of a flare. That is to say, I do get some joint pain, maybe more than I used to get from such activity, but if it doesn't trigger the typical symptoms of an auto-immune flare. I've learned to "work through" the pain and walk my 30 minutes the next day. And also use light weights with our Wii and so on. I stop if it hurts too much. As my first and wisest rheumatologist once told me: "The basic rule of thumb is, if it makes you feel bad, then don't do it."
posted by Oriole Adams at 12:27 PM on December 26, 2010 [1 favorite]
Best answer: Whatever you decide to do, don't be fooled that if you have one good day of exercise, do more the next. I've found that I don't even feel the pain for two or three days after, then I have to spend it in bed. I won't make that mistake again. Yoga is not for old or the feeble, you can break heavy sweats with it, and if done correctly, it's perfect for the mind/body healing process and reduces the amount of inflammation in a new study. It's the only thing I can still do after being ultra-athletic for two decades (competitive powerlifting). Swimming is very easy on the joints, and a PT will give you exercises, but again take it easy. I have a blood cancer that has autoimmune roots, as well as seronegative reactive arthritis and fibromyalgia. It sucks not to be able to lift half a Volkswagen anymore, but as long as I can move I can practice yoga, swim and do Pilates. You are not a failure if you can't do these things anymore, and don't let it get you down. It can be very demoralizing to go from healthy and active to the slippery slope of self pity. There is no shame in downsizing! I hope you don't let IT get to you, get to IT first. Additionally I've found Cymbalta to be a godsend to evening up the pain level and flares. It is expensive but sometimes the drug company will pay for it, ask your doctor's nurse for the forms if he/she recommends it. "Corvid" nailed it-only you know what your body feels.
posted by ~Sushma~ at 12:34 PM on December 26, 2010 [1 favorite]
posted by ~Sushma~ at 12:34 PM on December 26, 2010 [1 favorite]
*Unemployment-you may qualify for the local Free Clinic if you are actively looking for a job, and free medications.
posted by ~Sushma~ at 12:36 PM on December 26, 2010
posted by ~Sushma~ at 12:36 PM on December 26, 2010
I'm another spondylitis person (there seem to be a lot of spondyloarthropathies on MeFi). I have found swimming makes me feel pretty good, although I can't do more than about 20 minutes a day. Otherwise, I love EA Sports Active (and I just got EA Sports Active 2 for Christmas). It's nice because it has a slow, gentle warm-up, some cardio and strengthening, and then a lovely cool down stretch.
There are actually a ton of resources online for RA. You might look at exercise information on the Arthritis Foundation webpage. They have lots of ideas for people of different ability levels, and they have forums where you can interact with other people with RA and hear about their experiences with exercise.
posted by hydropsyche at 1:29 PM on December 26, 2010
There are actually a ton of resources online for RA. You might look at exercise information on the Arthritis Foundation webpage. They have lots of ideas for people of different ability levels, and they have forums where you can interact with other people with RA and hear about their experiences with exercise.
posted by hydropsyche at 1:29 PM on December 26, 2010
I don't want to give false hope, but there are two approaches that can actually lead to a genuine remission of auto-immune disorders. You can try them: if they work, fantastic. If they don't, they at least don't cause any harm.
The first is to change to a pure vegan (and preferably raw food) diet. If you have any food allergies or sensitivities, you'll have to avoid those foods as well. Immune response is generally triggered by proteins, and we are long-evolved to eat a diet that is almost entirely vegetarian, and highly varied (our tribal ancestors had meat only once or twice a month). For more information, you can check out the website of Joel Fuhrman (the site does do a little selling, but the information is good, nevertheless).
The other approach is Low-dose Naltrexone. Naltrexone is an opioid blocker, developed in the 80s to aid in the treatment of addiction. A couple physicians (old guys, actually) noticed that most people have a nightly spike in endorphins during the night, and that many people with autoimmune diseases did not have this spike. They discovered that very small doses of Naltrexone (about one-seventh of what was considered a clinical dose) would cause such a spike to take place. (By blockading the opioid receptors for a couple hours, there was a rebound effect when the naltrexone wore off). This seems to help in the "re-training" of immune cells in distinguishing between "self" and "non-self" cells.
I had Hashimoto's Syndrome (which is an autoimmune response to one's own thyroid gland), and my most recent blood tests suggest that my thyroid subsystem is now operating normally. More dramatic, I have a friend who has had Ankylosing Spondylitis, a much more severe autoimmune disorder involving inflammation of the joints in the spinal cord. At one point, he was told that he most likely had five years or less to live. I told him about low-dose Naltrexone, and his doctor was amenable to trying it: he has experienced a complete remission of the disease. I have another friend with Crohn's disease that has seen a similar remission.
Unfortunately, because the drug's patent has expired, no one is willing to do the large-scale clinical trials necessary to have the FDA drug approved as an "official" treatment for autoimmune disorders. However, dozens of small-scale trials have been undertaken, and they often show that 75% or more of trial patients are significantly improved. (The upside of patent expiration is that the drug is quite inexpensive).
There is a web site, lowdosenaltrexone.org, devoted to the therapy. It is a non-commercial site: no one is making any money off it. (Here's a link to a more cynical view, for balance)
posted by curtm at 1:46 PM on December 26, 2010 [2 favorites]
The first is to change to a pure vegan (and preferably raw food) diet. If you have any food allergies or sensitivities, you'll have to avoid those foods as well. Immune response is generally triggered by proteins, and we are long-evolved to eat a diet that is almost entirely vegetarian, and highly varied (our tribal ancestors had meat only once or twice a month). For more information, you can check out the website of Joel Fuhrman (the site does do a little selling, but the information is good, nevertheless).
The other approach is Low-dose Naltrexone. Naltrexone is an opioid blocker, developed in the 80s to aid in the treatment of addiction. A couple physicians (old guys, actually) noticed that most people have a nightly spike in endorphins during the night, and that many people with autoimmune diseases did not have this spike. They discovered that very small doses of Naltrexone (about one-seventh of what was considered a clinical dose) would cause such a spike to take place. (By blockading the opioid receptors for a couple hours, there was a rebound effect when the naltrexone wore off). This seems to help in the "re-training" of immune cells in distinguishing between "self" and "non-self" cells.
I had Hashimoto's Syndrome (which is an autoimmune response to one's own thyroid gland), and my most recent blood tests suggest that my thyroid subsystem is now operating normally. More dramatic, I have a friend who has had Ankylosing Spondylitis, a much more severe autoimmune disorder involving inflammation of the joints in the spinal cord. At one point, he was told that he most likely had five years or less to live. I told him about low-dose Naltrexone, and his doctor was amenable to trying it: he has experienced a complete remission of the disease. I have another friend with Crohn's disease that has seen a similar remission.
Unfortunately, because the drug's patent has expired, no one is willing to do the large-scale clinical trials necessary to have the FDA drug approved as an "official" treatment for autoimmune disorders. However, dozens of small-scale trials have been undertaken, and they often show that 75% or more of trial patients are significantly improved. (The upside of patent expiration is that the drug is quite inexpensive).
There is a web site, lowdosenaltrexone.org, devoted to the therapy. It is a non-commercial site: no one is making any money off it. (Here's a link to a more cynical view, for balance)
posted by curtm at 1:46 PM on December 26, 2010 [2 favorites]
I'm not sure if you're on prednisone right now or just hoping to avoid needing it because of a flare, but you might want to check out A Prednisone User's Exercise Manual published by the Lupus Foundation of PA. I found it helpful a few years ago when I was on a very high dose of prednisone and trying to get enough exercise without injuring myself due to the meds.
posted by camyram at 1:49 PM on December 26, 2010
posted by camyram at 1:49 PM on December 26, 2010
I've got ankylosing spondylitis in my sacroiliac joints. I used to do a lot of high-impact aerobics, but I had to quit that. Anything with a lot of impact causes a flare. Walking/swimming/biking/hiking is fine, and even tends to help knock down the pain and inflammation, but running is iffy. Yoga is also OK. I don't have problems with weightlifting, either, even squats; I just stick with upper-body work if I've got hip pain that day, and I'll skip a workout entirely if I'm in a bad flare. I notice you mentioned deadlifting with arthritic hands -- maybe a pair of weightlifting straps would help, or even a pair of hooks? Like everyone else said, though, the only thing you can do is listen to your body and experiment to find out what works for you and what doesn't.
curtm's vegan idea is interesting, but I'm going to give you the exact opposite advice: I got a surprising amount of long-term relief from this low-starch diet. It's worth trying both to see if either diet helps; diet does seem to be a trigger for a lot of people with auto-immune disorders.
posted by vorfeed at 6:12 PM on December 26, 2010
curtm's vegan idea is interesting, but I'm going to give you the exact opposite advice: I got a surprising amount of long-term relief from this low-starch diet. It's worth trying both to see if either diet helps; diet does seem to be a trigger for a lot of people with auto-immune disorders.
posted by vorfeed at 6:12 PM on December 26, 2010
Response by poster: Wow, thanks for the input, everyone! I figured at least a few people would have some experience, but this is... well, kinda depressing actually.
A bit more detail for those who care - I'm currently trying to slowly taper off prednisone (I'm on about 25 mg right now) with instructions to plateau at whatever the lowest dose is that staves off the morning stiffness. I'd like to get back off it completely, but we shall see. I'm also on plaquenil, which... it's nice that it doesn't have many side effects, because I can't tell much of a difference with it anyway.
I have established that gluten is a trigger for me, and I am being really diligent about avoiding it right now. (I have not always been.) I'm still working on wrapping my head around 100% compliance to that one, but I've been good since Thanksgiving.
Since the overall theme seems to be "you need to figure out what works for your body," I've decided to embark on an obsessive data collection project over the next couple months. We'll see what happens! If nothing else, my poor, neglected blog will get some love.
posted by restless_nomad at 8:03 PM on December 26, 2010
A bit more detail for those who care - I'm currently trying to slowly taper off prednisone (I'm on about 25 mg right now) with instructions to plateau at whatever the lowest dose is that staves off the morning stiffness. I'd like to get back off it completely, but we shall see. I'm also on plaquenil, which... it's nice that it doesn't have many side effects, because I can't tell much of a difference with it anyway.
I have established that gluten is a trigger for me, and I am being really diligent about avoiding it right now. (I have not always been.) I'm still working on wrapping my head around 100% compliance to that one, but I've been good since Thanksgiving.
Since the overall theme seems to be "you need to figure out what works for your body," I've decided to embark on an obsessive data collection project over the next couple months. We'll see what happens! If nothing else, my poor, neglected blog will get some love.
posted by restless_nomad at 8:03 PM on December 26, 2010
Plaquenil is an awesome drug, coupled with Medrol made the pain practically stop. I also had infusions of Vancomycin at the hospital and two rounds of doxy afterwards. Threw away the walker and hid the canes...Had a long remission. FWIW, I tried the raw food diet from This Site and also Crazy Sexy Life. Wasn't for me, screwed up my potassium levels and felt worse than ever...but seems to work for a good amount of folks. These sites are good support if you decide to go that way, with a lot of gluten free recipes and advice. Oddly enough, my body craves carbohydrates all of the time so I do what everyone says not to do (eat junk food) and feel better. It's a crap shoot. Love to read your blog if you want to share...send me memail. Keep up your determination!
posted by ~Sushma~ at 9:23 PM on December 26, 2010
posted by ~Sushma~ at 9:23 PM on December 26, 2010
Best answer: Like vorfeed, I'm going to disagree with curtm regarding dietary advice. I have Crohn's disease, and my best friend has rheumatoid arthritis -- we've both been helped massively by going on a low-carb, meat- and fat-heavy diet. Even if you're not going low-carb specifically, cutting out all wheat/gluten can help immensely. You can look into primal or paleo eating, which both highlight how our more healthy ancestors ate.
I've also felt like getting plenty of omega-3s and vitamin D have helped greatly. I've made it through 2010 without a single cold, despite being immune-compromised and surrounded by ill coworkers and guests all the time at work.
It's totally a your-mileage-may-vary issue. I've heard of people who feel terrible from eating spicy foods, and those who feel best when eating spicy foods. So definitely do some elimination experiments to find out what makes your body happiest.
posted by themissy at 6:48 AM on December 27, 2010 [2 favorites]
I've also felt like getting plenty of omega-3s and vitamin D have helped greatly. I've made it through 2010 without a single cold, despite being immune-compromised and surrounded by ill coworkers and guests all the time at work.
It's totally a your-mileage-may-vary issue. I've heard of people who feel terrible from eating spicy foods, and those who feel best when eating spicy foods. So definitely do some elimination experiments to find out what makes your body happiest.
posted by themissy at 6:48 AM on December 27, 2010 [2 favorites]
This thread is closed to new comments.
In terms of over doing it, I have found that it really is a trial and error. I'm in my mid 20's and its hard to know exactly what my limits are and I tend to over do it on stupid things.
My best advice is just to take it easy and slowly increase activity to a comfortable limit. Physical therapy has been fruitless, and I am contemplating tai chi and yoga currently. I would try to re frame it as 'dropping down' as I know a couple of people who have really benefited from yoga in terms of strength as well as positive overall health. I can't blame you for wanting to stay away from predinsone as I try to stay away from anything steroidal, anti-inflamatory (destroys my inards...in a very bad way) and stick to pain killers, muscle relaxers and cannabis.
Best of luck trying to find something that works for you, and don't dismiss things such as yoga which may be very beneficial. Can't hurt to try.
posted by handbanana at 9:22 AM on December 26, 2010