Life With RA: Exercise Strategy That Works, Article #5

LIFE WITH RA: EXERCISE STRATEGY THAT WORKS 

Article #5

By Lu Sobredo

Why write about exercise if you suffer from Rheumatoid Arthritis (RA)? 

Exercise was the last thing on my mind when RA inundated major joints in my body starting in 2013. Pain was excruciating on both knees, ankles, wrists, fingers and hands. Inflammation and stiffness were so pronounced; I grew resentful over how the disease stole the flexibility my body once knew. Everyday routine did not happen without my husband's help. But I did my best to will my pained body to move. The body gradually adapted to gentle and measured movements. And three years after I began the regimen of medications & treatment, my RA-ridden body gradually stabilized. There is no cure for what ails me, so who knows what the future holds. However, I am convinced that without attempts at movement, the disease could have crippled me irrevocably.

With a Physical Therapist Early in RA Treatment. ©James Sobredo

WHY EXERCISE WHEN THE BODY IS IN PAIN

Exercising when in pain sounds counter-intuitive. But three years after diagnosis, loss of muscle mass and diminishment of strength on my legs and arms could not be denied. Joints were stiff and inflexible. Inflammation was unrelenting. So was the pain. Any brief respite from agonizing pain was no comfort, knowing the flare up may be a breath away. Needless to say, I was nearly immobile and wheelchair-bound for about two and half years after diagnosis in August 2013. It took 4 months after that to finally connect with an RA specialist I trusted.

My RA specialist recommended water aerobics in early 2015. It was what brought me from being dependent on a wheelchair to walking with a cane in less than 6 months, I am convinced of it. I did water aerobics three times a week, and three years later I still keep up the routine as much as my schedule allows or as much as the pained body could manage.

Another thing that helped? I also subscribed to reputable websites that give dignity to voices of those with disability. One of my favorites is Healthline: Living with Rheumatoid Arthritis (https://www.facebook.com/HealthlineRA/). Healthline has been a source of validation that I am not alone in the struggles from this mostly invisible disease. I thank their website administrators for posing the question: what content would you like to see? I responded just as other readers of Healthline did. 

Responses in general made it clear that the RA community was eager to know the kinds of helpful exercises for RA sufferers. This was not surprising. In the past few months, I have encountered folks suffering from RA and similar autoimmune disease, or who knew someone in the same boat.  These chance encounters occurred when at restaurants or at short stays at hotels in California and elsewhere. Frequently, the unsolicited exchange would start with a smile. The facial greeting was followed by questions about why I need a walking cane? Engaging conversations reaffirmed that many are looking for answers.

WHY SHARE RA EXPERIENCE

I have accepted the medical fact that I have RA, but stand steadfast that I am not defined and will not be by RA. I surmise others afflicted with the disease feel the same. If there’s any way I could help others through this journey, I am determined to do so. Lesson well-learned for me: traditional or conventional medical care and nonconventional medical treatment complement each other. Alternative treatment options are not replacements to drug treatment, but could work in tandem of each other. 

If you want to know what ways you could regain strength and rebuild muscle mass lost due to immobility from the disease, read on. If you are looking to increase flexibility and joint functioning, read on. If you crave to fight off the excruciating effects of stiffness and inflammation in various parts of the body, I have ideas. Or you just simply want to create the sensation of movement in an RA-ravaged body, the same answer comes to mind—a well-rounded treatment strategy which includes exercise. 

A conclusion from an important study on the benefits of exercise for RA states the following:

 “The importance for the inclusion of exercise training in the treatment of RA is now clear and proven. Exercise in general seems to improve overall function in RA without any proven detrimental effects to disease activity. Thus all RA patients should be encouraged to include some form of aerobic and resistance exercise training as part of their routine care. More research is still required on the optimal dose and types of exercises, especially when combining types, as well as how best to incorporate exercise into the lives of RA patients across the variable course of the disease.” (Cooney, Jennifer K., et al. Benefits of Exercise in Rheumatoid Arthritis. Journal of Aging Research. 2011 February 13. Web. April 7, 2018).  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3042669/).

When to exercise and what type of exercise must always be done in consultation with your primary doctor and/or RA specialist. At the very least, maybe consult with a physical therapist who could design movements appropriate for your specific limitations. I write about what works for me. I only offer exercises that could serve as possible springboard for what could work for others. If nothing else, let the ideas serve as motivation for you to get moving.

A WELL-ROUNDED TREATMENT STRATEGY IS MUST

Having gone through the phases of RA progression and achieving some relief, I would say, these are the essentials in the treatment strategy which worked for me:

Primary Care Physician (PCP) must be consulted in caring for overall health. He/she works in tandem with the care received from the RA specialist. Find one who shows concern and support. My own PCP  is an East/West medical practitioner. After almost twenty years as my medical provider, he knows me well and genuinely cares.

Rheumatoid Arthritis Specialist is the most important person in my care, outside of my husband James. Find an RA Medical Doctor (MD) with a some years of experience treating this chronic autoimmune disease. I searched for months online and from a list given by my health insurance provider. I read through countless bios, backgrounds about their medical practice, and I called their clinics if they are taking new patients, etc. This was the most important step of the strategy for me—finding a skilled specialist who cares. Five years ago, after four months of searching, I lucked out. I found an RA doctor who was a former  professor of medicine. He was a pioneer in his field. His success record with patients, which now includes me, spoke volumes. Although he is eventually retiring from a long medical practice (and has retired at the posting of this essay), I can’t say enough how the Universe smiled at me the day I became his patient. He kept his commitment to care for me even after retirement by recommending me to one of his closest proteges and colleagues.

Visit with Dr. Robert Shapiro, My RA Specialist. ©James Sobredo

Healthy Eating/Healthy Life Style for me partly meant fruit and vegetable smoothies. See article on juicing: Life With RA: Juicing To Relieve Pain. After two years of juicing routine and meatless meals, I slowly re-introduced chicken and sometimes pork in my diet. After two years of once again eating white meat and continuing with seafood in my diet, I have returned to only eating fruits, vegetables and seafood. My penchant for desserts is my vice, and I labor to gradually moderate the  habit. Although I don’t have scientific proof that types of diet could influence my disease, I only could attest that I feel healthier when I adjusted meal choices. And occurrences of inflammation seemed to have diminished.

Vegetable Smoothie: Spinach and Avocado Delight. ©Lu Sobredo

Mental Health is a component of one’s RA and health journey that seems to be easily ignored. This component of RA experience is important to include here. I wrote about susceptibility to feeling vulnerable to dejection. The following is an excerpt from an earlier essay—Travel Abroad With My Son and Disability: This feeling of dejection could come and go like a nightmare. It is common among people afflicted with a chronic and debilitating disease. The nagging pain and feeling of helplessness are enough to lower stamina. Invariably, a lowered stamina and a compromised immune system are just two of the many symptoms of the disease. They are also potential side effects of the prescription drugs. If I had internalized what the first consulting physician said to me three years before, my life might have been doomed forever. If at any point in my health journey, I had chosen to stay under bedcovers in an unlit room with curtains drawn closed, sleep in or mope about at home, my mental outlook would be totally different today. It is so easy to see only the darkest clouds over the brightness of day with this disease. 

Hobby, Aspiration or Avocation has been cathartic for me. This means any interest or activity that stirs the soul. This includes an impassioned and stubborn belief that I could walk again. That was true for me when I became wheelchair-bound for two-and-a-half years. My aspiration was to travel again. My RA specialist drummed in my head that: no matter what modern drugs/treatment he prescribed, it is what goes on between my ears that will propel me to increased functionality. My own belief that I could walk again is my greatest medicine. I wrote about this in my blog post: Travel With My Son and Disability.  

Travel with My Son to Monsseratt in Barcelona, Spain. ©James Sobredo

Physical Therapy by a licensed Physical Therapist (PT) or equivalent credentials was crucial to my improved quality of life, especially while wheelchair-bound at the extreme phase of the illness. Even before I found my trusted RA specialist, my PCP referred me to a qualified PT in early 2013. I consulted with two PTs: one with a traditional approach. My RA was so severe, this approach was not what my body needed. I eventually worked with a PT who recently acquired a doctoral degree in physical therapy. He incorporated traditional methods of warm and cold compress. Beyond that, he helped me push my physical limits—starting with low-intensity stretches and body movements for the most severely affected body parts: knee joints, ankles and wrists. After exhausting my eligibility for the number of sessions covered by my health insurance in late 2014, I had to find an alternative means to keep up with movement therapy. I had luckily improved enough to safely engage in physical movement on my own.  Yes, the positive progress facilitated by physical therapy, in conjunction with the regimen of medications led to increasing functionality. Increased functionality was a signal that I was ready to sign up for the gym at my RA doctor’s insistence.

 EXERCISE OPTIONS FOR RA

Physical Therapist-Guided Exercises

At the height of the disease, physical therapy seemed to insult my body’s capability or more appropriately, lack thereof. Cold compress, heating pads, stretches guided by a trained physical therapist felt like scheduled torture. In late 2014, I made it to low impact and gentle stationary bike exercise under a PT's guidance. Every attempt at movement of knees, wrists and fingers resulted in high pitched squeals. And if I were a natural cusser, I would have had a few choices of colorful four-lettered screams! I stopped after my health insurance stopped covering additional PT sessions.

Part of my physical therapy included time in the warm pool. The PT is not required to go in the pool with me during water therapy, so my dear husband had to, a few times until I felt secure in the water. Having shaky control of your body because of excruciating pain also meant a growing fear of drowning. Irrational, I know since there were people watching me during the session. Still, I was consumed with pain and fear all the same time. 

Gym Instructor-Led Exercises: Group or Individual 

Gym Membership was key to establishing my exercise routine once my mobility increased. If opting to exercise in the gym, remember to move  with intensity appropriate to one’s special needs or condition. If in doubt, always consult with your doctor or PT.

Stationary Bike (Individual)

Once my RA specialist determined that the disease was less active  (blood tests supported this decision), he prescribed that I increase  exercise activities. Despite the dependency on my wheelchair, my RA doctor was insistent I raise my resistance exercise through moderate movement on a stationary bike. This was necessary to begin rebuilding loss of strength and muscles particularly around the afflicted knees.

Time on the Stationary Bike. ©Lu Sobredo

Having exhausted my PT eligibility with my health insurance, I signed up with the neighborhood gym.  At first, I spent 30 minutes twice a week on a stationary bike. I struggled, yet was encouraged when I saw a change that my body desperately needed. I successfully increased resistance on the machine each time. And I have regained some muscle mass to show for it. 

Water Aerobics (Group) 
As I progressed towards enhanced ease in movement, I didn’t need a wheelchair all the time. My RA specialist next insisted I try water therapy in the pool. My body recoiled as it remembered my fear of drowning while under the PT’s earlier care. Throbbing pain & stiffness in my knees and joints made it difficult to walk down the steps leading into the pool. I had to be lowered into the pool using a battery-powered chair. Thank goodness my gym is equipped with one.

I participate in a one-hour-water-aerobics three times a week. Fearful of drowning when I joined three years ago, I pretty much stayed by the edge of the pool. Lynne Anderson, our instructor mindfully guided us through varying levels of movement. Level 1 movement is the least demanding, and Levels 2 & 3 are more intense & higher in difficulty. Lynne of The Body Shoppe Adult Fitness with Lynne Anderson has been a godsend. Look her up on her business Facebook page. She has private classes outside of the gym as well. So much of my progress in increased strength and flexibility I attribute to my time in Lynne’s classes at the gym.

Equipments for Aqua Aerobics Led by Lynne Anderson. ©Lu Sobredo

Consistent attendance in aqua aerobics paid off. Three months after joining, I didn’t need to be lowered into the pool on a battery-powered chair. I awkwardly managed to walk down the steps into the water. In subsequent months, six months after joining, I reduced the number of times I used the wheelchair and later graduated to using a walking cane. 

Today, I walk with a cane when needed for security and balance or during flare ups. I even opt to do Level 2 or 3 of the movements in the water. At times in my mind’s eye, I imagine myself as a gymnast or wannabe-ballet-dancer in the water. And I get teary just thinking how much I have improved in three years. Hard work? A resounding yes! However, progress is not a straightforward nor an upward trajectory. It’s more like a dance: one step forward, three steps back. 

The setbacks are a source of irritation and desolation. When I found myself battling that feeling of self-pity, I took bold steps to take care of my mental heath as well. I am thankful for friends and social network. I also took the initiative to search on my own and found a good talk-therapist. 

Chair Exercise (Group)

I participate in chair exercise that focuses on aerobics, stretching for  flexibility, balance and resistance training. The eclectic group of people  in my class have different ailments and body limitations. Our instructor provides guidance for gentle & low-intensity to more challenging yet safe movements. And I vacillate between the two levels depending on how the body feels that day. The inclusion of yoga in the routine is my favorite part of the day.

Morning Chair Exercise Led by Lynne Anderson.©Lu Sobredo

Dancing (Individual or Group)

I find dancing simply invigorating. Dancing to the music by Michael Bublé, Sara Bareilles, Stevie Wonder or Bruno Mars is like eating my favorite candy or lemon cake. I sobbed the first time I was able to get up from my wheelchair and danced at a New Year’s Eve celebration in 2015 at Mile Wine Company boutique cafe when it was owned by dear friends Cindi and Paul Marsh. I was mostly  swaying while leaning on my husband’s shoulders. The motion and music—spiritually healing.  Movement with the music was physically freeing. It brought joy to my very core.

Dancing on New Year's Eve. ©James Sobredo

Egoscue Movements (Individual or Group)

Once an RA consultant confirmed the diagnosis of RA, and prior to finding an RA specialist I trusted, I immediately explored alternative, non-invasive and non-drug treatment. Desperately seeking instant relief for the pain, I turned to my cousin, Oscar Gonzales. He subscribes to the Egoscue method. He customized a body structural exercise routine for me. Granted it is not a cure for my RA, but it is effective in relieving pain and facilitating movement. 

Cousins Trying Out Egoscue Exercise. ©James Sobredo

If you are suffering from body pain, it is worth checking out his website and facebook business page in which he writes:

“What is different in my practice is the approach of using specific exercises to mechanically engage the brain to align the neural pattern of the musculoskeletal system. This technique immediately rebalances compensated movement patterns to eliminate chronic pain.” 

Since my disease was autoimmune in nature, I am under a complex medical regimen and physical therapy to hopefully stop further physical damage to my joints and  bones. Egoscue is my go-to-exercise upon waking in the morning to loosen my stiffness and ease pain in my hips, shoulders, and occasionally my back and arms. I use the movements anytime of day, anywhere I am. The relief is immediate. From 10 to 60 repetitions of elbow curls and and arm circles are a god-send. 

Find his videos and phone app, contact or schedule an appointment at the clinic or consult virtually through Skype/Facetime: www.painfreewithoscar.com.

KEEP MOVING
Physical movement is a must for those with RA. Staying committed to a "well-rounded treatment strategy" has been my special ticket to improved physicality and functionality. Writhing pain and stiffness are all too familiar and exercise made it possible to find relief. I remind my readers and their loved ones affected by RA: do not lose hope.

RA is my lifelong companion and progressively gripping at that. This  degenerative autoimmune disease is capable of betraying me. My improved condition now allows me to walk with a cane. For now, I’m in a good place. Pain is manageable and the disease is mostly under control. Fortunately any further damage has been arrested for now. 

Outlined in this essay are exercises and body movements that worked for me. I am someone whose RA was diagnosed five years after onset. The diagnosis of severe RA was not the game changing event I expected after retiring from a 35 year career in public service. But game changing it was and is. Although I retired in my 50s, there were still many pursuits and adventures I had envisioned for my sunset years. All had to be re-imagined. That is the promising part,  that I could look beyond today. More importantly, one must be willing to re-imagine what a positive and a quality life looks like when RA is a huge part of it. So, get moving!

Essay ©Lu Sobredo
ALL RIGHTS RESERVED

ACKNOWLEDGEMENT: 

My movement exercises come from several sources. At this time, I would like to thank two of them:

=> One of them is a customized body structural exercise routine--Egoscue method from PainFreewithOscar.com. Oscar Gonzales happens to be my cousin with clients from all over the globe who connects with him in person or via Facetime or Skype. He offers alternative and holistic health service and programs to individuals and corporations. His exercise is available in an app.

Cousin Oscar Gonzales of PainFreeWithOscar.com. ©James Sobredo

=> The other go-to-exercise was recommended by my RA specialist: water aerobics about three years ago. As I wrote in the essay it was what took me from wheelchair to walking with a cane in less than 6 months, I am convinced of it. I do water aerobics three times a week and three years later, I still keep up the routine as much as my schedule allows. Thanks to my fitness instructor at the gym,  Lynne Anderson. 

My Gym Instructor Lynne Anderson. ©Lu Sobredo

My inspiration to take care of myself and stay with my treatment routine comes from many loved ones, supporters and readers. Here's to keeping the pursuit of both physical and cognitive health important in your life journey.

#LifeWithRA

About the Author 
Lu Sobredo is writer/publisher at Lu Travels Abroad, a blog dedicated to folks whose limitations do not hamper them from traveling. About a year into early retirement came the diagnosis of Rheumatoid Arthritis (RA). Her world collapsed from under her as the disability rendered her nearly-immobile and wheelchair-bound for almost three years. Her family's life changed. Her total life changed, but she did not let RA define her. With much will & love from family, friends and an awesome doctor, she regained some functionality--her new normal. She will have RA all her life. And she now writes about life and travel with RA.