A friend of mine was recently diagnosed with RA – Rheumatoid Arthritis. This Fall is the 15th anniversary of my diagnosis for RA. I wrote the following notes to help my friend with this disease, which she will have for the rest of her life.
If you are newly-diagnosed with RA, or you are close to someone with RA, I hope this is helpful.
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First, I am very sorry that you have R.A. There’s no fun here. I hope you were properly diagnosed by a good doctor. The single biggest problem with R.A. newbies is that they are mis-diagnosed. Either they are told they have something else, or the R.A. diagnosis is made late. In some cases – such as Kathleen Turner – patients are mis-diagnosed for years. The result is usually crippling deformity.
Here are my thoughts on treating R.A. Take it all as one person’s experience. I have been diagnosed with R.A. for 15 years this Fall. And it is pretty well under control. I have some level of pain every day, but it’s quite tolerable.
Second, I highly encourage you to ignore all “natural” medicines, potions, etc. I don’t know what your opinions are about western medicine, vitamins, or homeopathy. But here’s the truth: If you do not properly treat R.A., you will become crippled. There’s an excellent chance that you will get your disease under control with the right medications. If you treat yourself with vitamin supplements, etc., that’s the same as no medicine at all. You will become crippled if you ignore this.
Everyone you meet will tell you about glucosamine, chondroitin, bananas, akai berries, and magnets. They all mean well, but you need to nod politely and listen to your doctor. Also – remember that R.A. is nothing like osteo arthritis. R.A. is an immune disease in which your body attacks itself. Osteoarthritis is one of those diseases that everyone gets if they live long enough. It has to do with the wearing out of your joints. Whether or not you have R.A., you will probably also get osteoarthritis some day.
Third, the real medicines that actually get the disease under control are very nasty. They will make you tired. The disease will also make you tired. Some medications will make it hard for you to sleep. The pain will come and go with or without the medicines. It will just “go” more often with the medicines.
The medicines fall into two categories: Control the disease and control the pain. Do not confuse these. And always be very clear what each medicine is for. For controlling the disease you may be prescribed medicines such as Plaquenil, Methotrexate, and Arava. Each of these has side effects. Everyone responds differently.
As for pain, I highly encourage you to do everything you can to minimize the pain medication you take. Pain is not the same as suffering. You will live with pain the rest of your life. You can learn to live with it or numb yourself. Just be aware that being permanently numbed will affect every aspect of your life and can lead to drug addiction and alcohol abuse in an attempt to escape the pain.
Personally, I prefer Aspirin for pain. As long as you are religious about taking food with your aspirin, you can safely take very large amounts. It is the safest pain reliever you can find, and has almost zero side effects.
Work with your doctor. Be attentive to whether the medicines are helping, and which side effects you are experiencing. The most common approach to R.A. newbies is to crush the disease into submission with a series of horrible drugs. Keep working on it. It may take years to get under control. Ideally, at that point, you’ll move to something like Arava or Enbrel, which are true miracle drugs.
Fourth, you need a good Rheumatologist (“Rheumy”) who takes you seriously. Good means that they keep up on the literature and research. It means they understand the role of exercise and stretching/yoga as well as pharmacology. It means they listen to you and respond in a timely manner. If you have doubts about your doctor, get another one ASAP. Especially early on, time is your enemy. You need to take this disease seriously and your Rheumy needs to be your ally.
Fifth, you need to educate yourself. Subscribe to Arthritis Today. Check out web sites that are run by legitimate medical outfits. Join an email list or web forum and read what other people are going through. When you’re comfortable, talk about your symptoms and experiences. It helps to know that you are not alone in this.
Sixth, I have found that daily meditation is a GREAT way to handle R.A. Meditation has many benefits. The most important here are 1) It reduces inflammation, and 2) It can help you manage pain. There’s a great audio program by Shinzen Young on using meditation to manage pain. I highly recommend it.
I was just exchanging notes with someone about the pain I experienced in yoga today. She asked whether it was good or bad. Pain is neither good nor bad. It is just pain. Sometimes the pain makes you limit your movements. But, really, it’s YOU limiting your movements, not the pain. When you sit differently or limit your movements, you will have a temporary change in the nature of pain, but you may be permanently limiting your movements. Be careful.
Seventh, you should do yoga. Personally, I love the hot Bikram yoga for several reasons. The heat makes everything in my body feel better. In addition, Bikram yoga consists of the same postures each time, in the same order. That means I can learn what to expect and I can gauge how I’m doing today vs. some other day.
I am told endlessly (by everyone at every opportunity) that yoga is a “practice” and that I shouldn’t worry about getting it “right.” That sounds great, but I’ve been doing yoga for fifteen years and I only do one pose consistently well: Savasana.
Yoga strengthens the muscles in a gentle way. It reduces inflammation. It has a meditative quality. It can make you sore in the short term, but will reduce pain overall in the long term.
The best part about yoga is that it teaches you a mindfulness about your pain. If you do two sets of each pose, one on the left side and one on the right, then you will have four opportunities to check in with your body. In many cases I find that I can’t do the first (right side) at all; I can do the second (left side) a little; I then do the third very well; and can’t do the fourth well.
The point is: you pain moves every minute. The last stretch, which seemed unproductive, loosened things up. Don’t stop because you couldn’t do something two minutes ago. “How do you feel now?” means NOW. This instant, not two minutes ago.
Eighth, you need to work on exercise and weight control – for the rest of your life. As with yoga, all exercise is useful. You need to do what you can do. More and more, you won’t be able to jump, slam, hit, or play hard. So a lot of aerobic exercise is out. Weight lifting will probably be severely limited.
But you need to keep moving. Riding a bike, walking. Whatever keeps you moving.
Exercise reduces inflammation, strengthens muscles, and burns calories. Weight control is very important with R.A. because you can’t exercise as much as you used to. And added weight means added pressure on your joints – especially the hips, knees, and ankles.
Obviously, that means you need to watch your diet because you can’t burn as many calories as you used to with exercise. So you need to manage in-take very carefully.
Ninth, you will experience flare-ups (flares) that are worse than your normal level of pain, discomfort, sleeplessness, exhaustion, etc. As you work to get your A.R. under control, you will gradually have fewer and fewer flares.
No matter what, you need to take flares seriously. Don’t push yourself too hard. That can make the flare worse, and make it last longer.
Every flare represents a (temporary) step backward with the disease. Each flare is an opportunity for your joints to be damaged a little before you get back on track to a stable state. If you have too many flares, you will eventually have the kind of joint damage you’re trying to avoid with medicines, diet, and exercise.
Keep track of your flares and tell your doctor. If they become too frequent, it may mean that your disease is no longer responding to your medicine. This is VERY common. You may need to be switched to a different regimen. Again, take it very seriously.
I have found very few things that I can associate with flares. One is very acidic food (like vinegar and cucumber salad). Another is lack of exercise.
Overall, there’s a lot you can do with R.A. It is a chronic disease. That means you will have it for the rest of your life. Right now we don’t have a cure. So you need to manage it, even if you never become friends with it.
Consider getting a hot tub. Absolutely the best monetary investment I ever made in my health.
And remember, with all the advice on exercise and yoga and eating right: It’s okay if you forget. It’s okay if you get off track. It’s okay if you’re not perfect. Just remember to start over, get back on track. When you don’t do the things you’re supposed to do, you will have more pain, more inflammation, and more weight. When you do the things you’re supposed to do, you’ll have less pain, less inflammation, and less weight.
Again, this is all based on my experience. Your mileage may vary.
Excellent post with wise advice. Thank you for sharing (and finally opening a dialogue about RA and living with pain). You are such an inspiration, Karl!