Posted on April 5, 2020 by Annastasha Parker
If you’re reading this, you’ve probably recently been told you have Rheumatoid Arthritis. If you’ve just joined the millions of people in the world with RA you probably have a lot of questions. I know I certainly did. If you’re anything like me, you’ve already done a google search and seen some alarming statistics and depressing photos of the damage RA does. The first thing I want you to know is, that doesn’t have to be you. Take a deep breath and repeat after me, I can do this, I can get RA under control. While RA certainly is a serious disease that will do damage if not kept in check, it is also, in most cases, manageable. And when it isn’t, well, medicine has many answers, up to and including installing new body parts if necessary, but I’m getting ahead of myself. Let’s start at the beginning. What exactly is RA?
Rheumatoid arthritis is an inflammatory autoimmune disease. It is both systemic and chronic. This means it is able to attack throughout the body, and it is here for life. Not good news. Don’t panic, we’re going to get the bad news out of the way first. So, more bad news, it can and will cripple you if not taken seriously. Attacking any joint it pleases, RA is best known for deforming hands and feet, but is certainly not limited to those joints. Knees, hips, elbows and shoulders are also common problem areas for folks with active RA. Not limited to attacking joints, the inflammation generated by disease activity is able to spread throughout the body impacting tendons, eyes, lungs, heart and other organs. Lung or heart involvement can be fatal. Making managing the disease extremely important. I can’t really stress this point enough, take RA seriously. It is every bit as serious as Cancer, left untreated it is every bit as deadly. So, how are you going to manage this potentially deadly, debilitating disease?
The first step, is to start to assemble your medical team. This will grow over the years based on your individual needs and areas of involvement (RA does not affect any two patients in exactly the same way.) To start you will need a primary care physician (PCP) who you feel very comfortable with and trust a great deal, they will be helping you manage your wellness, get needed care, and hopefully catching any balls the rest of the team might drop. Next up is a good rheumatologist. This one might take some time, sadly there are a lot of cruddy ones out there. Finding the right rheumy for you may take a few tries, keep looking, it is worth it. The final member of the starting lineup for your healthcare team for now is some sort of mobility specialist, someone who knows about how bodies move and function. This might be a personal trainer, occupational therapist, or perhaps even a massage therapist. RA will challenge your mobility; you will need someone who you can trust to help you keep things moving.
Now that you have the beginnings of a healthcare team lined up, its time to think about the ways you are going to fight this. There really are a lot of options. Medications, diet, exercise, lifestyle changes, there are many ways in which people get disease activity under control. The approach you choose to take is up to you. Just be sure, whatever option you choose you really stick with it and follow it through. There are many people who control rheumatoid arthritis with diet and exercise, but that can’t be done if you’re half assed about it. Managing rheumatoid arthritis naturally may work for some people, but it is a serious commitment. This is also true for the medications; you can’t take them some of the time and expect to slow disease activity. RA is all in, you need to go all in too if you want to win the battle, and you definitely want to win this battle!
Whether you choose a traditional medical route or a more natural holistic route to managing your RA, I recommend everyone pay special attention to the foods you’re putting in your body. No matter what approach you’re taking, sugar is inflammatory. In fact, many foods are inflammatory. Successfully controlling the inflammation in your body due to RA, will definitely be helped by limiting the number of inflammatory substances you consume. Essentially RA is a house fire, don’t pour gas on it. Likewise, no matter the approach, there are anti-inflammatory foods and substances you can consume to help put out the fire. To learn more about diet, inflammation, and the foods that feed and quench inflammation check our page on diet and autoimmune disease. It includes many helpful links to diets people with RA have found helpful.
Another very important aspect of managing rheumatoid Arthritis is movement. You’re going to need to develop an exercise program. One of the big challenges of life with RA will be finding the balance between movement and rest. Developing strong muscles and moving joints daily by engaging in low impact exercises can go a long way toward protecting your mobility. With the guidance of your doctor and a certified trainer or physical therapist, you can you can come up with a series of exercises that are appropriate for whatever mobility challenges you may already be facing, and routines that promote fitness while protecting joint health. Be gentle with yourself, and take it especially easy on swollen, inflamed joints, but do not stop moving them. Like the tin man, if you are still too long, they will freeze up, unlike the tin man, you don’t have an oil can to get them moving again.
Next up, you need to think about your lifestyle and consider making some changes. You’ve already noticed RA challenges the way you normally live, now it’s time to consider how changing the way you live can help reduce the symptoms of RA. The first thing to consider is stress. If you live a life filled with stress, an overfull schedule, and little downtime to decompress, RA will claim you quickly. One of the things everyone seems to agree about is Stress feeds RA, it causes it to be more active. If there are sources of stress you can cut out, do. You also need to make time to do things to reduce your stress.
Speaking of sources of stress, lets talk about work. This is a hard one, and you very well may not like what I am going to tell you. If your job demands a lot of repetitive movement, hours of sitting or standing at a time, or long hours, you need to consider making a change. The fact is, the more you use those hands to type, or that shoulder to pull that lever 1000 times a day, the fewer years that body part will work. We are much more susceptible to wear and tear injuries than people without RA. Repetitive and high impact movements will cause bone deterioration. Holding the same position for hours, whether that is sitting, standing or holding a pen, will cause joints to stiffen and freeze up. Consider making a change in the way you work or the job you do. Talk to your employer about ways to modify the work you do. Share your limits, it may help you continue to work longer. Because it is a disabling condition, the ADA (Americans with Disabilities Act) requires employers to make necessary adaptations wherever possible.
Also consider reducing the number of hours that you work to allow more time for rest and recovery. Time to rest is another extremely important aspect of your lifestyle you need to examine. Living a good life with RA requires balance. Work must be balanced with rest; rest must be balanced with movement. Making the time to take breaks throughout the day and being sure to give yourself enough time to rest at night are both keys to managing RA well.
Speaking of resting at night, let’s talk sleep. Sleep is not an easy thing to manage. The fact is having RA or any autoimmune condition means you need more sleep, the other fact is, RA symptoms make sleep hard to get. This is part of the reason building rest and recovery time into your life is important. Don’t be afraid to nap when you can. It is healing for you to nap. Make sure there is time in your schedule to at least try to get enough sleep at night. This is no time to attempt burning the candle at both ends. Remember, your house is on fire, lets not add flames.
The last, but probably most important thing for you to know about life with RA is that you need to be your own advocate. Across the board. In all aspects of life. You need to learn to speak up for yourself, to ask for help, to tell people that you are struggling. This goes for your medical team, your family, friends, co-workers, and employer. This is not the time to go with the flow and keep quiet, pushing through the pain. It’s time to ask for what you need. If you need help, ask for it. If picking things up off the floor takes everything you’ve got, ask someone else to do it. If you are struggling with pain, fatigue, brain fog and other symptoms, or side effects from medications, talk to you doctor. Don’t suffer in silence. If it is hurting you, it is safe to assume damage is being done. While we can get a great deal of damage fixed, with surgery, therapy, time, money and help, we can also prevent a lot of that by being a good advocate.
Speaking up about your limits at work can result in changes in the way the work is done that lead to extra years of being able to work. Anytime you hesitate to ask for help, I want you to look at the body part(s) you are protecting by requesting the assist. Do you like to use your hands? Do you want to use them longer? Then ask for that speech to text software, keep the job you love (with the great insurance you are about to love more than you could ever imagine) and enjoy the extra years of mobile hands.
With a competent medical team, determination, balance, rest, movement, and a whole lot of self-advocacy, you can live a great life with RA. It will take patience and time to get there. Sometimes it won’t seem like you ever will. But a life with controlled Rheumatoid Arthritis is beautiful. Knowing that you fought for it, makes it even more spectacular.
Category: Getting Diagnosed, living, Medical Options, rheumatoid arthritis, Sleep, UncategorizedTags: advocate, medical team, ra, ra warrior, treatment
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When I was 10 years old I was quarantined with Scarlet Fever which leads to Rheumatoid Arthritis and Lupus. They are literally impossible to tell one from another, luckily the treatment is the same. 10 years ago I lost my ability to walk due to hip, knee and ankle deterioration, I have learned a few things during this time; at the top of the list is acceptance. The pain will never go away, pain killers don’t work, but avoiding Red Meat, Alcohol, Smoking, and Soft drinks pay dividends. A giant step is accepting this is the way things are making it no longer a battle. This disease is mine and I own it, I have promised my family I will never take the pain out on them. The only time I talk about it is if I am asked; my wife will sometimes ask how I’m feeling to which I reply “it hurts so bad you can’t imagine” that’s the extent of it.
It takes a long time to adjust one’s lifestyle, I have learned to modify activities not eliminate them; if I need help I hire someone. I have an Earthworm farm, I Garden, I do woodworking, play stringed instruments (now first position only I can no longer make bar chords.) I do it all from my mobility scooter and wheelchair. I scoot down our lonely road picking up trash, roadkill and I also pull empty trash cans into my neighbors’ yards on my scooter, I call it my job. I rise every morning thankful that I’m still alive, I prepare for the day as if I am going to work it helps my mental state. Each of us has to just figure out how to deal with it in our own way.
Another point is I know there are a lot of people that have it a whole lot worse than I do, it doesn’t make me feel better but it does bring to me a realization just how good I have it.
This comment was hard for me to write, I rarely talk about any of my illnesses, thanks for opening the door of which I merely walked into.
Thank you so much for sharing your experience. Adapting our lives really is such a massive part of living a good life with chronic illness of any sort.