AUTOIMMUNE ARTHRITIS A REFERENCE LIST FOR PERSONAL TRAINERS By the International Foundation for Autoimmune Arthritis (IFAA) with Expert Contributor: Marie Hilferty, AFAA certified Personal Trainer, Rheumatoid Arthritis patient, Destination FitLife Coach & SuperChronic Fitness. This publication is part of IFAA s Wellness Awareness and Education Program. Exercise has become part of the treatment plan for many of those living with chronic illness. While personal trainers can expect to work with clients with all different levels of wellness and goals, this subset can be particularly challenging. This document introduces the personal trainer to Autoimmune Arthritis, or those primary joint diseases with an autoimmune component, and offers some insight into what to expect when working with clients who live with these types of diseases. Becoming more knowledgeable about your client s Autoimmune Arthritis disease will help you to create a specialized program for he/she that reflects your understanding and sensitivity towards their specialized needs. I have several patients with arthritis. Isn t Autoimmune Arthritis just like Degenerative Arthritis? No. Matter-in-fact, they are quite different. As a Personal Trainer, it is important that you understand the differences. Degenerative Arthritis, also known as Osteoarthritis or simply arthritis, is a common condition of the joints that occurs from age, wear and tear, obesity (stress on the weight bearing joints), or injury. It is localized to the area of wear. It can be mild, treated with over-the-counter pain medications and ointments, or can range up to severe, completely wearing away the cartilage and resulting in bone on bone friction. When Degenerative Arthritis damage is extensive surgery may be required. Autoimmune Arthritis diseases, or those primarily of the Degenerative Arthritis joints but with an autoimmune component, are not as common because they are a result of faulty cell interaction. The cell communicators, or receptors, mistakenly read healthy cells as ill, then the immune system fights back in an attempt to rid them from the body. This results in a type of serious inflammation that causes destruction to the joints, connective and soft tissues, and organs. In regards to the organs, inflammation in the eyes and skin are most common, however, the esophagus, lungs, and heart are also of particular concern. In addition, because they are autoimmune diseases they can also cause the body to react as if it has the flu, creating body aches, fevers, nausea, rashes, and severe fatigue. In essence, these diseases affect the whole body; you can t have it only in one location in the body (ex: knee, shoulder, finger, etc). Autoimmune Arthritis
The most pure examples of an Autoimmune Arthritis disease are Rheumatoid Arthritis (RA), Psoriatic Arthritis (PsA), Juvenile Arthritis (JA), Ankylosing Spondylitis (AS), Still s Disease (SD), Primary Sjogren s Syndrome (SS), and Systemic Lupus Erythematosis (SLE). However, Undifferentiated Connective Tissue Disease/Undifferentiated Spondyloarthropathy (UCTD/USpA) and Mixed Connective Tissue Disease (MCTD) are also recognized in this group because they typically include, or result in, one or more of the diseases listed above. Autoimmune Disease Primary Joint Involvement Autoimmune Disease Primary Tissue, Muscular, Gastro, etc Connective Tissue Soft Tissue Organs Muscular, Vascular Joints Organs Core Autoimmune Arthritis Diseases Primary Joint Disease Autoimmune Arthritis Extended Diseases Secondary Joint Disease The core Autoimmune Arthritis diseases are most like one another, specifically as they related to joint involvement (arthritis). However, there are related diseases that are also autoimmune and can have joint involvement. We call these Autoimmune Arthritis Extended Diseases. These Extended Diseases may experience joint involvement, but are primarily focused on other parts of the body. For example, while Crohn s is an autoimmune disease that can involve the joints, the disease is of a primary gastrointestinal nature. You may find some of this information can help you when working with clients who are affected by these Extended Diseases. You may view a list of these diseases at www.iaamovement.org/ As a Personal Trainer, what should I know about working with an Autoimmune Arthritis patient? Assessing the Client If a client discloses they have arthritis, ask them to identify the type of arthritis. Not everyone differentiates it, yet as you can see from the description above, they are not all the same. If a client identifies they have one (or more) of the Autoimmune Arthritis diseases, you then need to assess the level of affect the disease has on their body. a. First, do not be alarmed if they have more than one; this is more common than you may think. This happens typically for one of two reasons. One, they were misdiagnosed with one of the diseases, then it progressed into a clear cut version of another (Example: perhaps they did not originally have psoriasis, now it s quite predominant. An original diagnosis of Rheumatoid Arthritis may, in this case, turn into a diagnosis of Psoriatic Arthritis). Another possibility is their disease
does, in fact, share two very distinct patterns. (Example: a patient who was originally diagnosed with Psoriatic Arthritis may develop severe inflammation in their sacroiliac joints and spine, and in turn, receive an additional diagnosis of Ankylosing Spondylitis). b. What is important to understand is that all of the Autoimmune Arthritis diseases share relatively the same symptoms and all affect the joints. What differentiates them from each other is where and how they affect individual parts of the body. For example, Ankylosing Spondylitis targets the tailbone area, spine, and neck more so than some of the other diseases- although it is not uncommon for a patient with any of the other core Autoimmune Arthritis diseases to also be affected in these areas. Never assume any one disease is text book. All Autoimmune Arthritis diseases are full body, meaning any joint can be affected. As a personal trainer, it is crucial you understand what areas of the body involve joint inflammation so that you can plan accordingly. Riding a stationary bike, for example, may not be an optimal choice for a patient who has Ankylosing Spondylitis. It will benefit you to learn more about each specific disease and some hallmark effects of each. c. While some patients will have noticeable, obvious physical affect many are invisible. This means they may not appear to have an illness. IF THEY ARE INVISIBLE NEVER SUGGEST IT IS NOT THAT BAD OR TELL THEM THEY LOOK LIKE IT HAS NOT AFFECTED THEM MUCH, ETC. Unlike Degenerative Arthritis, where pain happens as a result of the degeneration, Autoimmune Arthritis pain occurs BEFORE the damage is obvious. The pain from Degenerative Arthritis is felt where the cushion surrounding the joints has worn away. Autoimmune Arthritis pain is happening at a cellular level; it is most often described as feeling like a sprain. Damage only shows after a serious of continuous, internal attacks but the pain occurs during the attacks. In addition, Autoimmune Arthritis Inflammation your client may appear invisible on one visit, but on another occasion they may have areas of inflammation that appear swollen and/or red. Keep in mind that some areas of inflammation may be hidden by clothing or may be internal (tissues, organs). All Autoimmune Arthritis patients start invisible; not all of them end invisible. d. Fitness testing and assessment. You may want to avoid traditional fitness testing methods (Examples: the 1 minute step up test or push-up test). It is best to focus on consistency and progress without risking any injury that could happen during timed performance type testing. Ask, specifically, which areas of the body are chronically affected by the disease. This could include any joint in the body, not just the weight bearing joints. It is important that you discuss how the disease has affected your client and what limitations he or she lives with. Make sure to notate these areas and pay careful attention to consider their limitations when creating a work out. You may need to avoid using a set of joints during a workout and train around them from time to time.
Every person who lives with Autoimmune Arthritis different. While symptoms are similar in most patients, the degree of effect and pain tolerances may be quite different. Ask about previous work out regimes, if applicable, previous to their Autoimmune Arthritis disease onset. The typical age of onset for Autoimmune Arthritis patients is 7-9 in children and 20-40 in adults. Given they are not caused by lack of exercise or poor diet it is not uncommon to see patients who were formally involved in an aggressive fitness plan. Many of those affected by these diseases feel confused about exercise; it isn t easy to go from physically fit and active one year to incapable of the same routine the next. Simply suggesting milder exercises, which is often done with Degenerative Arthritis patients, may not be the answer. e. Keep in mind that you will need to assess your client before every work out. Autoimmune Arthritis diseases are inconsistent and ever-changing. The client could go from feeling well to completely unable to walk in a matter of hours. Always assess their condition before starting the work out. If you do not already, it may be beneficial to chart your clients starting point before every workout, then ask them prior to the next workout how their body reacted after the last session. f. Goals. Set attainable goals with your client so he/she feels accomplished. For example, use fewer reps in a set (example: sets of 8). That way, you can gradually add reps before adding more resistance in the client s training progression. Medications. Find out all the medications that your client takes and research their side effects. This will help you when prescribing cardiovascular exercise and target heart rate and if any of the medications are counterproductive to setting attainable goals. Typical medications include disease modifying agents such as methotrexate, prednisone, and biologic injections or infusions. Methotrexate Methotrexate is a form of chemotherapy. It is typically the first line of treatment recommended for those with an active disease. Usually taken once a week, this medication can have side effects such as headaches, nausea, and fatigue. It might be best to not train on the day your client takes their methotrexate. Biologics are genetically engineered proteins derived from human genes. They are designed to inhibit specific components of the immune system that play pivotal roles in fueling inflammation, which is a central feature of autoimmune arthritis diseases. The injections are typically taken weekly and infusions are monthly. While most patients do not have negative effects after taking these prescriptions, some do feel lethargic or fatigued- especially those who prefer the infusion therapy. Infusions must take place at a professional facility and usually take 4-6 hours to complete the appointment. Talk with your client about their use of these agents, as well as their ability to function the day of or day following the treatment. Prednisone is a steroid. It is fast acting and is usually prescribed to manage reoccurring flares of inflammation. It often causes weight gain and bloating. Therefore, if a client is on this treatment it may be difficult for them to lose weight or inches. Biologic Infusion
(Not as common) Antidepressants. Some patients take antidepressants to manage the psychological aspects of living day to day with a chronic illness. Antidepressants have been found to cause weight gain and other symptoms. Psychological Hurdles. Just like most people, a person with Autoimmune Arthritis wants to feel good about themselves. However, they are living with the extra challenge of dealing with an unpredictable disease. The unpredictable factors can range from young and/or unexpected disability to the inability to control when and how often and where in the body the attacks will occur. Many find they are no longer able to participate in the type of exercise they did prior to their disease. In addition, some of the medications can cause excessive weight gain. While you will want to help them see their own progress, just like you would any client, it may be more realistic to modify your expectations from more traditional programming. The Work Out Unlike Degenerative Arthritis, any joints in the body can be affected by Autoimmune Arthritis, whether weight bearing or otherwise. When the joints affected by Autoimmune Arthritis become tender the pain is similar to that of an injury, bruise, or sprain. It is important during the work out that you pay attention to your clients actions, such as how they are grabbing equipment, stepping onto and off from a machine, or if they suddenly start limping or protecting a particular body part. Most importantly to remember, listen. If they are telling you something hurts do not push them. Too much stress on an inflamed body part can result in a flare or physical damage. When to Exercise. Together, you and your client should discuss which days he/she typically feels the best to engage in exercise. Attempt to create a solid schedule based on known obstacles: a. Medication Day. Some patients experience nausea and fatigue the day medications are taken; others experience side effects the following day as well. Most medications are taken on the same day each week or month so planning around those days will be essential. b. Stiffness. Autoimmune Arthritis diseases typically cause a certain amount of rigidity. Most patients experience this early in the morning or after a period of inactivity. Morning work outs may not be optimal for all patients, yet others may find the stretching helps them better function during the day. c. A bad day. These diseases cause severe fatigue, muscle weakness, and lethargy. Unless your client is in pain, try to encourage them to attend the session, even if it is simply doing a series of stretching exercises. However, there may be occasions where the fatigue is too overwhelming, and is paired with a fever and/or flu like symptoms. Keeping an open communication with your client about this issue will help you to understand their limitations.
d. Inability to Finish. There are times when your client may not be able to finish their entire workout or they have to avoid using certain joints. Be ready for anything. Stay flexible. If they cannot finish their session with you, perhaps you can use the remaining time to prepare some at-home exercises that the client can do when she/he is feeling good but doesn t have an appointment scheduled with you. Use any remaining time to talk about goals, progress, meal planning, etc. Obstacles. If you have properly assessed your client prior to beginning a workout regime, you will know many of their physical limitations. However, there are some general issues you may encounter that you should consider prior to the work out. a. Grasp Limitations. It can be very hard to stretch the fingers wide or wrap them around something small like holding a free weight or the handle bars of machines. An option to use for exercises like overhead press or chest press might be to use soft touch medicine balls that come in varying weights. Stretching the hand wide around the ball may be easier for some clients or having the client hold one heavier ball with two hands allows the wrists to remain neutral and decreases the risk of the client dropping the balls. Another idea is to experiment with using weighted wrist or ankle weights. b. Locking Joints. Joints can freeze or lock at any time and for no reason. When this occurs, the entire body remains in motion other than the affected joint, which becomes intensely rigid. Because the body attempts to continue the movement for those brief seconds, the result is a sharp pain, often mimicking a fractured bone. The pain following could be temporary (lasting only a few minutes) or can evoke a flare in the joint that could last for hours or even days. If this happens during a workout assess the situation to determine if you should continue the workout, alter the course, or move to warm down stretching. c. Keep the Joints Warm. In Autoimmune Arthritis, there will be a number of joints affected throughout the body at any given time. Also, the joints your client claimed were inflamed at the start of the workout may not be the same joints that become inflamed during or after the workout. Continued movement is key to ensuring your clients joints do not lock. This is very important at the end of the workout, especially if your client is driving. Once accelerated movement stops and the body cools, this is prime time for an Autoimmune Arthritis patient to experience locking of the joints. If this happens while driving a car, for example if fingers cannot grab the wheel or feet cannot push the gas or brake, it becomes a dangerous situation. Please remind your client to keep moving and to keep their body warm until they are in a safe environment. Follow Up. An Autoimmune Arthritis patient may feel good during the workout, but flare afterwards or the following day. Prior to each session ask your client how their body responded after your last workout together. You may need to alter your plan accordingly.
Diet & Nutrition You can t go wrong by suggesting anyone eat more nutrient dense foods and decreasing the consumption of alcohol and processed foods like cakes, some snacks, and white bread. However, you should never suggest your client stop conventional medications and treat their Autoimmune Arthritis disease only with diet and nutrition. Autoimmune Arthritis diseases start at a cellular level, when the body mistakes healthy cells as sick, then attacks them. This attack results in severe internal inflammation, which in turn results in damage to the joints, tissues, and organs. So the inflammation is the RESULT of the disease; the cellular activity is the CAUSE. Treating the RESULT only, without addressing the CAUSE, can be dangerous and even life threatening. Your client should create a treatment plan for their Autoimmune Arthritis with a Rheumatologist. In saying this, diet can help with the inflammatory symptoms associated with Autoimmune Arthritis diseases. How much it can help depends on the individual patient. This will be determined on pre-existing dietary, food sensitivity issues, and allergies, if any, as well as the bodies predisposition to accepting diet therapy. In addition it will depend on ones individual body chemistry and their level of disease affect. However, there are many diet suggestions you can provide that can help lower inflammation, and in turn, may provide some relief for your client. In fact, those whose body chemistry responds well to diet may even experience significant changes in the way they feel. However, it must be reiterated that while concentrating on lowering the inflammation can relieve some symptoms of Autoimmune Arthritis, it is not addressing the cause of the underlying disease, which is the malfunctioning of cells. Even if a person feels better by lessening their inflammation levels, the disease can still be progressing. It is not only the medical community who stresses the importance of treating more than just the inflammation. The National Center for Complementary and Alternative Medicine also does not recommend treating these diseases with diet only, as stated in a 2009 publication (updated in 2012) about Rheumatoid Arthritis. It states, In general, there is not enough scientific evidence to prove that any complementary health approaches are beneficial for RA, and there are safety concerns about some of them. Some mind and body practices and dietary supplements may be beneficial additions to conventional RA treatments, but there is not enough evidence to draw conclusions. So while your client can benefit from your dietary recommendations, especially ones that focus on anti-inflammatory properties, avoid making suggestions relative to your clients medical treatment plan; leave that conversation for your client and their doctor.
Contributor Contact Information IFAA: info@ifautoimmunearthritis.org, www.facebook.com/ifautoimmunearthritis, Twitter @IFAArthritis Marie HIlferty: Rerehilferty@verizon.net References: All information was resourced from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), The International Foundation Autoimmune Arthritis (IFAA), and the National Center for Complementary and Alternative Medicine (NCCAM) Article Quoted: http://nccam.nih.gov/health/ra/getthefacts.htm