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To YOGA or not to YOGA?

Yoga for Managing the Chronic Pain of Fibromyalgia: A Study

ImmuneSupport.com

10-06-2004 By Ginger G. Wood MPT, ATC, RYT

Abstract

Purpose: To examine an 18 month period of yoga therapy on a single subject suffering from chronic pain, specifically fibromyalgia, and to determine how and what measures are needed to report improvement. Improvements documented over a specific time period in a controlled setting can further underscore the case for using yoga as a sole means for managing fibromyalgia & chronic pain and also provide a background to establish a working dialogue with “western” medicine practitioners.

Study Design: Using case-study research methods, an 18-month period of gentle Iyengar based Yoga was implemented 1-2x/week in a woman suffering from fibromyalgia and chronic pain.

Findings: The findings showed that the student steadily improved in many measures, including pain, body awareness, medications dose/type, body weight, cholesterol, hypertension, bone density, and subjective quality of life measures (increased confidence, improved body image).

Conclusions: As yoga therapists, we have a professional obligation to document the changes & improvements our yoga students are experiencing during a controlled yoga studio environment. Collecting this information is vital to encourage an open dialogue between western & eastern medicine. The information collected during this study is positive evidence that could assist in the future development of chronic pain management with yoga therapy. Future case studies and research should include more diverse populations of chronic pain sufferers as well as the use of tools which quantify a student’s intangible concerns and complaints (i.e., pain, quality of life, psychological health, emotional health, ease of daily activity completion, etc.).

Chronic Pain & Yoga – Telling our Story

As yoga therapists we see many students come to yoga seeking relief from pain. Likewise, we may have sought the same end when we first came to yoga. For the 50 million Americans who suffer from pain every year, relief may be sought for mental, emotional, psychological, social, & spiritual hurt or pain, not simply the physical.(1)

Treatments can include painkillers, injections, anti-inflammatories, electrical stimulation, ultrasound, massage, physical therapy, manual therapy – all with varying levels of success. The emotional and mental stress can be as painful and debilitating as the physical condition. The existing chronic pain then becomes complicated with the additional distress, leading to the depletion of the immune and nervous system resources. Further compounding the problem with each exacerbation is the subsequent declining ability of the body to deal with neurological pain perception thus, leading to increased perception of and decreased tolerance of pain.(5)

Even more confusing and frustrating with the situation of chronic pain is that symptoms can widely vary, be diffuse, and can constantly change.(4) The signs & symptoms of fibromyalgia, a chronic pain condition characterized by inflammation of & tender points surrounding the joints and muscles of the body can begin with generalized, global pain, fatigue, muscle tender & trigger points, muscle twitching, & spasms.(15)

Some victims of this syndrome may experience localized pain in addition to the global pain. Starting with the head and working towards the feet, any or all joints can suffer from the following symptoms: headaches & sensitivity to light &/or sound, vision changes, numbness or burning in the face or extremities, chest & costal (rib) pain, neuropathies in the hands & feet causing weakness, & balance problems.(5)

Fibromyalgia can also affect other systems of the body. Oftentimes, osteoarthritis, rheumatoid arthritis, irritable bowel syndrome, &/or chronic fatigue syndrome can accompany fibromyalgia. Lastly, the classic symptom of fibromyalgia is lack of REM or deep sleep, which creates serotonin imbalance and can be responsible for depression, impaired memory, &/or anxiety. 5 The course of fibromyalgia ranges from mild & minimally involved to severe and completely debilitating. (4)

Unfortunately, our health care system does not allow for more than “acute” treatment of pain. 2 Once someone is deemed “chronic”, there is a burden put on patients to “prove” they are in pain.(2) This proved to be true for the woman in this case study, who over a 30 year time span, did not hear of yoga as a treatment method even one time. Yoga is one of the oldest pathways to holistic health and wellness; yet there are still few western health care practitioners who embrace yoga or are even familiar with its plethora of benefits.

Experienced yogis & yoga practitioners know that yoga can address problems in every system of the body to effectively manage pain, and for the case study that follows here, 18 months of documented evidence further strengthens the case for successfully managing chronic pain syndromes with yoga therapy.

As yoga therapists & professionals, we have an obligation to establish a successful dialogue with other health care professionals. This may seem like a daunting task, but by recording & sharing the following basic information with others, we can all work to make yoga more accessible. More than that, I encourage you to begin collaboration with a health care professional to determine what would be helpful for their patient population. In reality, this is not a difficult task.

There are many different types of health care practitioners whose patients would benefit from yoga. physical therapists, primary care physicians, neurologists, chronic pain treatment centers, ob/gyns, psychologists/psychiatrists, even your athletic trainers at local high schools & universities. Bringing yoga to as many people possible is our job, not theirs.

Her Story

61 year old ST (fictitious initials) has suffered from fibromyalgia since 1980, when at 38, she learned she had “fibrositis” (fibrositis was the early name given to fibromyalgia). At the time, she had no idea what fibromyalgia was, other than it was to blame for her daily pain and fatigue.

ST slowly retreated from the activities she once enjoyed as her pain worsened. She was gaining weight because while she was trying to “avoid pain”, she was “avoiding all activity”. Her medical history became increasingly more complicated as her daily activities were kept to a bare minimum.

ST’s family and ST herself began to notice the physical & emotional separation that began to occur as the pain & overwhelming fatigue consumed her. Her previous life was a very healthy & active one. Now, she was feeling it turn into a nightmarish twilight zone like medical history that included type II diabetes, polycystic ovarian disease, hyperlipedemia, hypertension, right rotator cuff tear & impingement syndrome, osteoarthritis of the hands, atherosclerosis of the right hand posing as carpel tunnel syndrome, costochondritis, and finally in 1990 a radical mastectomy from breast cancer.

ST suffered in every way imaginable. Some days, “I could not even get out of bed”. “I was scared to move, because I was scared of hurting. So I didn’t move, the pain would increase anyway, and I further retreated into a life of fear & confusion.” ST came into my office – for yoga – after 23 years of pain. She had a laundry list of medications, & repeated unsuccessful attempts at “pain management”. Fortunately, her motivation level was high.

Unfortunately, ST was angry, addicted to her pain & dependent on her ever growing list of medications. ST only decided to try yoga because she had finally gotten “mad” enough to do something about her debilitating pain & fatigue. ST’s doctors had never offered any detailed advice further than “get out & exercise, eat less, and relax”. Furthermore, yoga had never been offered as a treatment option. (the reason for establishing a rapport with other professionals, and for documenting the effects of yoga practice).

Hence, the purpose of this case study is to increase awareness of the importance of case documentation, to provide a possible framework for case study documentation, and to encourage the yoga community to become involved in this necessary work.

ST dedicated herself wholly to yoga study, determined to break out of the cycle of pain and her shell of separation from her family & her old life. For the next 18 months, 1-2 times a week, ST participated in 60 minute individual yoga sessions. “Yoga is the only exercise or treatment that has ever worked – I no longer fear movement, I lost weight and have maintained an ideal weight, and my doctors are amazed that my medical condition is continuing to improve, despite my age.”

Methods

61 year old white female was started in a 1-2 times/weekly, 60 minute Iyengar based yoga program. She began with fibromyalgia, chronic neck and low back pain, type II diabetes, and was a complete novice to yoga.

Data Collection & Analysis

An ongoing evaluation was initiated on 6/28/02, documentation was maintained for each visit, noting specific asanas, pranayama, or any other techniques used. Medical records including quantitative analysis were also obtained, covering a period of 18 months. The following measures were taken prior to, during, and at the conclusion of the program: body weight, height, cholesterol, pain reports from every affected area, medications and dosage, triglyceride levels, BP, bone density reports, & glucose levels.

Findings:

As the data was reviewed, the measure of ST’s success was directly proportional to her involvement in yoga. ST underwent no other type of exercise during the 18 month period.

Condition Before After
Weight 181 145
Height 5’4” 5’4 ½’
Blood Pressure 134/74
Body Mass Index 31.1 24.9
Less than 18.5 Underweight
18.5-24.9 Healthy Range
24.9-30 Overweight
> 30 Obesity

Medication:
Blood pressure (Avopro)
Ant-depressive for serotonin balance (Imiprimine)
Fibromyalgia (Trazadone)
Reflux (Ranitidine)
Cholesterol (Lipitor)
Depression (Prozac)
Diabetes (Metformin)
Anxiety (Clonipin)
Arthritis/Pain (NSAIDS) “MD’ s report: Diabetes now under excellent control, and her fibromyalgia is basically gone.”

Blood Pressure (Avopro)
Anti-depressive for serotonin balance (Imiprimine-25 mg)
Diabetes (Metformin)

Cholesterol: 226
HDL 39
LDL 154 170
HDL 48 (Normal 45-100)
LDL 99 (Normal 0-130)
Triglycerides 289.9 116
Bone Density Scan 2000/11 1.087 gm/cm2 (Osteopenia lumbar spine) 2002/12 (after 6 months of yoga)
1.137 gm/cm2 (within normal range, no evidence of osteopenia) 4.6% change
*Physical Pain Manifestation: Cervical Spine

Costochondritis

Lumbar Spine

Glenohumeral (shoulder) joint
Measured worst/least
6/10 constant
10/10 worst
4/10 least
10/10 worst
8/10 least
10/10 worst
5/10 least

10/10 constant, had an MRI which diagnosed a right rotator cuff tear. “I was a surgical candidate for rotator cuff repair.” Measures current 0/10

0/10 –the only time I have pain is when I fail to practice good body mechanics or posture

0/10 present – the only time I have shoulder pain is when the weather gets very cold, which flares up my arthritis, or when I use poor lifting mechanics.

Thenar (thumb) imminence, wrist 8/10 constant, unable to bear any weight on the wrists, especially the right side; she had a rare discovery of atherosclerosis in the arteries supplying the right hand, which required microsurgery; the symptoms masked themselves as carpal tunnel syndrome for so long that the thenar & hypothenar imminences (pad of the palm at the thumb and 5th digit) had completely flattened from severe atrophy; she could not write with her right hand on some days, and spent 2 years in intermittent casts and/or splints prior to her yoga work. 4/10 , persisting secondary to the severe nature of her condition resulting from remaining weakness & hypomobility, which is on a weekly basis, still showing improvement.

Treadmill Stress Test

Could not complete test. Could not complete shopping errands or yoga session without fatigue & exhaustion Completed, and MD reported she was in much better CV shape than 12/01 and stated “whatever you have been doing, keep doing it.”

No difficulty completing activities of daily living, recreational activities, or yoga program.

*6/28/02 – pain globally – bilateral wrists, bilateral shoulders, cervical spine, lumbar spine, fingers, ribs, sternum, chest
*2/17/03 - ST reports I have no pain when I do yoga, but if I have any break from it at all, the pain comes back.” “I must do yoga regularly”.

Progression of yoga therapy:

Months 1-4 Asana:

ST started with extremely gentle restorative asanas & breath awareness. At the start of treatment, the subject was unable to tolerate any weight-bearing through the upper extremities without 10/10 pain through the right shoulder and bilateral wrists and hands.

Supine, prone, 4 point posture, and chair modified asanas were introduce first such as apanasana (knees to chest), supta padangusthasana (hand to big toe) with strap, dvipada pitham (bridge), setu bandhasana (bridge), baby bhujangasana (cobra) , shalabasana (locust) with palms upturned secondary to severe forearm restriction, ardha dhanurasana (1/2 bow) with tactile assistance and strap, (full dhanurasana without strap was accomplished by end of month 4), balasana (childs pose) with head on blanket and arms at side, cat (chakravakasana)/cow with blocks under hands, adhomukha svasana (downward facing dog) at the wall or with a chair, and savasana (corpse) with bolster under knees.

ST continued to practice supine and prone asanas prior to warm up vinyasas for 4 months before her flexibility was increased enough to progress to traditional sun salutations. Shoulder openers were also introduced and included garudasana (eagle arms) and gombukanasa (cow arms) as well as 2 variations of openers I created.(3, 6, 8, 10, 13, 16, 22).

Months 5-8

Asana progression took place after 4 months to include standing and seated postures, in addition to those cited above: tadasana (mountain), uttanasana (forward standing bend), ardha chandrasana (standing ½ moon), utkatasana (chair), modified surya namaskar (which followed a modified vinyasa warm-up [chakravakasana/cow, adhomukha svanasana, astang pranam, bhujangasana, balasana] but preceded the above asanas.

Also included were virabhadrasana I and II (warrior I, II), trikonasana (triangle), utthita parsvakonasana (extended side angle), and vrkasana (tree). Seated asanas included suhkasana (easy seated pose), dandasana (staff), paschimotanasana (forward seated bend), chatushpada pitham (tabletop), janu sirsasana (head to knee), marichyasana (seated twist), ardha matsyendrasana (1/2 lord of the fishes) & navasana (boat). After 12 months - the existing postures were much improved. ST no longer needed blankets for asana practice. (6, 8, 10, 13, 14, 22)

Months 9-12

All postures progressed and only needed a single blanket as a prop for seated postures; no props were needed for shoulder openers; Hamstring length had normalized at 90 degrees of straight leg raise; Hip flexors were of normal length as well.

Asanas added:

Noose posture, pavritta uhttita parsvakonasana (prayer twist), extended leg stretch, static plank, chataranga from knees, ardha padmasana (½ lotus), adhomuhka svanasana (downdog) honoring normal spinal curves; forward bending asanas without props.(8, 10, 11) Months 13-18

10 surya namaskar (sun salutations) completed; setu bandhasana (balancing unilaterally), matsyasana (fish); initiation of halasana (plow)(8, 10, 11)

Pranayama, Mudras, & Bandhas:

Initial breath awareness work was practiced for 6 months and included abdomino-diaphragmatic breath (coulter). Jalandhara bandha was immediately introduced, as was uddiyanda bandha. After 6 months, ST was able to demonstrate thoraco-diaphragmatic breath without anxiety; however, she was unable to maintain the breath during asana & pranayama practice. After 4 months, nadi shodana (alternate nostril breath) was introduced, however, a deviated septum made practice very difficult and in early stages, elicited panic symptoms. Ujyaii breath was introduced most recently when valsalva was no longer observed in asana practice. Mula bandha was the last bandha introduced. Mudras introduced throughout were: anjali & jnana.(6, 9, 10, 11, 12, 14, 16, 17, 22)

Discussion

I know what I’m doing and what it’s done for me – People ask me all the time “I can’t believe what a turn around you have experienced, and with having diabetes, fibromyalgia….I can’t believe in doesn’t bother you?” I tell them “no, as long as I stick with yoga”. “It makes me feel so good when people notice how good I feel on the inside”. “my outer appearance has come in second compared to how I feel.”

Quality of life & Shifts in personality

“I am a lot happier, because I can get out and do something. I didn’t go out before, because everything affected my pain – it was either too cold, too hot, too damp, or too early, or too late for my body. Now I know I can go out and do anything I want because I have overcome only paying attention to the physical aspects of my body – now I look at myself as a whole person. In fact, I can honestly say yoga has taught me to look at the whole world differently now.”

Body Awareness

“After I had breast cancer, I wouldn’t stand up straight, I would kind of lean over to the side of the mastectomy, I would avoid mirrors – out of feeling vulnerable and disfigured. After these 18 months of yoga, I actually watch myself and my posture constantly. I wear fitted clothing year round with confidence and I no longer lean over and hide. Before, I wasn’t even aware of where I was in space, now I walk tall and with positive self worth.”

Motivators

“After 18 months of yoga practice, I know the word “boredom” does not exist in yoga, because yoga isn’t a simple exercise program. There is no repetition & mindless movement. Yoga is never work for me, it is totally relaxing & energizing, and always enlightening. I never know what we will be addressing in a yoga session, and I always look forward to the challenge. I reached a turning point in my life when I realized that saying yoga was just exercise was like saying a short term diet is the answer to proper lifelong nutrition. Just like you don’t “diet”, you change your eating habits, you don’t “just exercise” in yoga, you change your movement habits throughout every system of your body.”

Deepening relationships

In ST’s words, which many yoga patients can agree with, she says, “.this is the ONLY type of exercise I’ve ever stuck with (or enjoyed) in my life because it doesn’t hurt me. Most importantly, the practice gives me peace. I can focus more clearly and my friends and family clearly feel (and not just see) the difference when they are around me. Yoga teaches me the difference between pain & soreness, between injury & conditioning of the body.

Sometimes I used to think I was having a heart attack because of the severe chest, neck, and arm pain, and the anxiety & sheer panic that goes with it. Now I know the difference between pain, disuse soreness, and the occasional arthritic ache - because of the keen body awareness yoga has given me. I’m in tune with my body now, and what’s most important is - I listen to it. Mentally, physically, emotionally, socially, spiritually - yoga has transformed me and now I am a whole person.

Yoga nourishes my body & mind, teaches me to honor my limits and the same time challenge them. Coming from someone who suffered for 23 years and now is pain free, I want you to have hope, because yoga can work for you too. I used to have pain of no less than 5/10 on the pain scale everyday of my life, most days it was 8/10, and some days I couldn’t even get out of bed. ST’s exact words ring very true, “Yoga worked for me, and it can work for you, if you are studying under the direct guidance of an experienced instructor.”

The sheer numbers of chronic pain in Americans (1 out of every 3 suffer from a chronic joint problem or arthritis, according to the Centers for Disease Control, Atlanta, GA) underscores the important of spreading the word about yoga therapy. Geeta Iyengar in her textbook Yoga – A Gem for Women, states “yoga can be done by all at any age. It is particularly beneficial to those over 40 when the recuperative power of the body is declining and resistance to illness is weakened”.

Leon Chaitow, in his book Conquer Pain the Natural Way, states “yoga is more than simply an exercise system, it benefits the whole body in so many ways...the regular practice of yoga brings about improvements in every system of the body.”

The documented improvements seen in ST correlate with the benefits of yoga found in other cases & studies as well.(16, 18, 19 )

Conclusions

Findings from this study indicate a further need for research to underscore the potential positive impact for use of yoga in the management of chronic pain & fibromyalgia. The question remains then, How do we establish a more successful dialog with western health care practitioners?

First, consider the language that is used in yoga – it is very poetically powerful and all encompassing. However, from the “western practitioner’s” frame of reference, “yogic” language is not understood, and therefore is often shunned. Speaking on the eastern behalf, I prefer yogic language – you actually learn more about yourself. Speaking on the western behalf, there is great power of persuasion in being able to objectively measure improvement in a student’s progress. A yogi can “feel” the difference, but unless they can explain why & how, their knowledge cannot benefit the community.

There is a solution within the yoga realm for solving this western conundrum – journaling. Documentation, as it is in western medicine, is the method for proving how point A to point B was traversed. The yoga therapist’s journal can be that vehicle for arriving at destination B – consider these guidelines.

1. Note the duration of practice, date, and intensity. Also note any subjective feelings your student may have – joy, sorrow, pain, fear, frustration.

2. Note the asanas or vinyasas as well as pranayama or breath awareness you instruct.

3. Note your focus or intent for the session that day. You may not start out with a goal, but the student’s mental and physical condition reveal themselves to you during the course of a practice, which should guide your progression. Note that.

4. Note any chakras, bandhas, drishtis, or koshas you may be including as part of your therapy.

5. Note their reaction and tolerance to the practice. Did any pain arise or resolve? Were some asanas modified or discontinued? Was a chakra noted to be more in balance after practice?

6. Note what direction future sessions might take. Include your goals or your students' wishes. What specific limb of yoga should be addressed next time?

An example, from ST’s chart, is one you may use as a guide:

11/13/02
Prior to session: not sore at all, feel great, mentally strong & positive.

During: started with 2 warm up vinyasas (cat/cow/adhomukha svanasana/astang pranam/bhujangasana/balasana), progressed to shoulder openers (shoulder opener of my own creation using strap/gombhukanasan arms/garudasana arms), emphasizing prevention of elbow hyperextension, then hip openers in kneeling lunge; 2 surya namaskar A’s, modified using 4 point stance to transition in/out of adhomukha svanasana and utthanasana; flow virabadrasana I,II, prasarita paddotanasana, seated and standing, navasana 3 times, dhanurasana, ardha urdhva dhanurasana, dolphin prep. (only dropping to 1 forearm and pressing back up), ardha padmasana.

Post session: tolerated very well without complaints; client is almost ready for surya namaskar with full step back to adhomukha svanasana; focus on breath remaining calm and normal during all poses; no valsalva observed during 60 minute session.

Future: emphasize breath awareness

All of these considerations were part of my yoga therapy with ST. I carefully monitored all of her bony landmarks and soft tissue responses during pose/repose in order to prescribe asanas, pranayama, and mediation. ST now lives her life pain-free, and with daily determination not to return her previous life of chronic pain. She is a motivator for all those who currently suffer from a chronic pain condition, and offers hope for renewal. Every chronic pain sufferer is an individual and yoga programs must always reflect their individual deficits and pain manifestations.

However, common threads do emerge from the lives of chronic pain suffers. This study serves to identify some of those common threads which may serve to contribute to the tapestry of current chronic pain management. For those who suffer, body awareness & control of the breath is paramount. Only by nurturing body awareness, can a person understand & care for their body. The practice and study of yoga serves to cultivate that appreciation for the body, in its broken and whole forms, and to teach its students to embrace the entire experience.

Finally, a single case such as this would be in vain if it did not spur other therapists to follow in similar order. It is imperative that we establish and furthermore maintain, a rapport with the “western” medical community. Sacrifice a small portion of your time, weekly or monthly, in order to speak with physicians, their assistants, physical therapists, psychologists, and the like. Invite western practitioners into your studio, offer free class(es) for them &/or their employees, offer an open house, &/or send out a quarterly newsletter to enlighten them on yoga’s far stretching benefits, including any group therapies or specialty classes you offer.

Speaking on group therapies, western health care has become incredibly cost prohibitive, and group therapies can offer an inexpensive, safe, and extremely beneficial method for long term exercise programming. Lastly, you may look to write a local column in your newspaper on a monthly basis as I have done for several years now– outlining the many benefits of yoga and yoga therapies. Most importantly, you must be prepared to speak their language and to intelligently state the benefits of yoga, as well as potentially answer questions that will require you “navigate the sometimes hazardous waters between therapy and religion”, as Georg Feurstein states in his 1998 article titled “Yoga and Yoga Therapy.”

You may be ready to answer those difficult questions now, but what questions & concerns will you ask of western health care professionals? Consider these: 1.What kind of patients do you see? Are any of them (how many) considered chronic pain patients? How many low back and neck pain, shoulder pain, or arthritis patients do you see (this being an opportune time to review yoga’s benefits)? May I offer a free session to you or a free group session for your staff to show you some of the yoga therapies I use to manage these conditions? More often than not, the staff is who will send potential students your way, not the physicians themselves.

I offer these simple questions to gently nudge you to think outside of your own studio or facility. We must engage the western world of medicine professionally, intelligently, and with only the purest of intentions. It is my hope that we will all be spurred to take a definitive course of action, thus serving to shine the healing light of yoga the world over.

 

 

 

 



Autoimmune Diseases in Women Mixed Conective Tissue Disease
American Autoimmune
Related Diseases Association


Autoimmune Disease in Women      

                                                                                                                                                   THE FACTS!!


Autoimmune Disease
      The term "autoimmune disease" refers to a varied group of more than 80 serious, chronic illnesses that involve almost every human organ system. It includes diseases of the nervous, gastrointestinal, and endocrine systems as well as skin and other connective tissues, eyes blood, and blood vessel. In all of these diseases, the underlying problem is similar--the body's immune system becomes misdirected, attacking the very organs it was designed to protect.

Table I
Female:Male Ratios
in Autoimmune Diseases
Hashimoto's disease/hypothyroiditis 50:1
Systemic lupus erythematosus 9:1
Sjogren's syndrome 9:1
Antiphospholipid syndrome 9:1
Primary biliary cirrhosis 9:1
Mixed connective tissue disease 8:1
Chronic active hepatitis 8:1
Graves' disease/hyperthyroiditis 7:1
Rheumatoid arthritis 4:1
Scleroderma 3:1
Myasthenia gravis 2:1
Multiple sclerosis 2:1
Chronic idiopathic thrombo-
cytopenic purpura
2:1
A Women's Issue

      For reasons we do not understand, about 75 percent of autoimmune diseases occur in women, most frequently during the childbearing years. Table I(left) lists the female-to-male ratios in autoimmune diseases. Hormones are thought to play a role, because some autoimmune illnesses occur more frequently after menopause, others suddenly improve during pregnancy, with flare-ups occurring after delivery, while still others will get worse during pregnancy.

      Autoimmune diseases also seem to have a genetic component, but, mysteriously, they can cluster in families as different illnesses. For example, a mother may have lupus erythematosus; her daughter, diabetes; her grandmother, rheumatoid arthritis. Research is shedding light on genetic as well as hormonal and environmental risk factors that contribute to the causes of these diseases.

      Individually, autoimmune diseases are not very common, with the exception of thyroid disease, diabetes, and systemic lupus erythematosus (SLE). However, taken as a whole, they represent the fourth-largest cause of disability among women in the United States.

A Need For Knowledge

      Autoimmune diseases remain among the most poorly understood and poorly recognized of any category of illnesses. Individual diseases range from the benign to the severe. Symptoms vary widely, notably from one illness to another, but even within the same disease. And because the diseases affect multiple body systems, their symptoms are often misleading, which hinders accurate diagnosis. To help women live longer, healthier lives, a better understanding of these diseases is needed, as well as providing early diagnosis and treatment.

Major Autoimmune Diseases

Connective Tissue Diseases

Systemic Lupus Erythematosus (SLE)

     An inflammation of the connective tissues, SLE can afflict every organ system. It is up to nine times more common in women than men and strikes black women three times as often as white women. The condition is aggravated by sunlight.

      Symptoms: Fever, weight loss, hair loss, moth and nose sores, malaise, fatigue, seizures and symptoms of mental illness. Ninety percent of patients experience joint inflammation similar to rheumatoid arthritis. Fifty percent develop a classic "butterfly" rash on the nose and cheeks. Raynaud's phenomenon (extreme sensitivity to cold in the hands and feet) appears in about 20 percent of people with SLE.

      Treatment: Anti-inflammatory drugs can help control arthritis symptoms; skin lesions may respond to topical treatment such as corticosteroid creams. Oral steroids, such as prednisone, are used for the systemic symptoms. Wearing protective clothing and sunscreen when outdoors is recommended.


Rheumatoid Arthritis

      Rheumatoid arthritis is a systemic disorder in which immune cells attack and inflame the membrane around joints. It also can affect the heart, lungs, and eyes. Of the estimated 2.1 million Americans with rheumatoid arthritis, approximately 1.5 million (71 percent) are women.

Symptoms: Inflamed and/or deformed joints, loss of strength, swelling, pain.

Treatment: Rest and exercise; anti-inflammatory drugs when necessary.


Systemic Sclerosos (Scleroderma)

      Scleroderma is an activations of immune cells which produces scar tissue in the skin, internal organs, and small blood vessels. It affects women three times more often than men overall, but increases to a rate 15 times greater for women during childbearing years, and appears to be more common among black women.

     Symptoms: In most patients, the first symptoms are Raynaud's phenomenon and swelling and puffiness of the fingers or hands. Skin thickening follows a few months later. Other symptoms include skin ulcers on the fingers, joint stiffness in the hands, pain , sore throat, and diarrhea.

      Treatment: The drug D-penicillamine has been shown to decrease skin thickening. Symptoms involving other organs such as the kidneys, esophagus, intestines, and blood vessels are treated individually.


Sjogren's Syndrome

      Sjögren's syndrome (also called Sjögren's disease) is a chronic, slowly progressing inability to secrete saliva and tears. It can occur alone or with rheumatoid arthritis, scleroderma, or systemic lupus erythematosus. Nine out of 10 cases occur in women, most often at or around mid-life.

Symptoms: Dryness of the eyes and mouth, swollen neck glands, difficulty swallowing or talking, unusual tastes or smells, thirst, tongue ulcers, and severe dental caries.

Treatment: Interventions to keep the mouth and eyes moist include drinking a lot of fluids and using eye drops, as well as good oral hygiene and eye care.

Neuromuscular Diseases

Multiple Sclerosos (MS)

      A disease of the central nervous system that usually first appears between the ages of 20 and 40, and affects women twice as often as men. MS is the leading cause of disability among young adults.

Symptoms: Numbness, weakness, tingling or paralysis in one or more limbs, impaired vision and eye pain, tremor, lack of coordination or unsteady gait and rapid involuntary eye movement. A history of at least two episodes of a cluster of symptoms is necessary for a diagnosis of MS. Because MS affects the central nervous system, symptoms may be misdiagnosed as mental illness.

Treatment: The drug baclofen is used to suppress muscle spasticity, and corticosteroids help reduce inflammation. Interferons also are being used to treat this disease.


Myasthenis Gravis

      This is a chronic autoimmune disorder characterized by gradual muscle weakness, often appearing first in the face.

Symptoms: Drooping eyelids, double vision, and difficulty breathing, talking, chewing, and swallowing.

Treatment: The drug edrophonium along with daily rest periods can improve muscle strength.


Guillain-Barre Syndrome

     Guillain-Barré syndrome is an acute illness that causes severe nerve damage. Two-thirds of all cases occur after a viral infection.

Symptoms: Tingling in the fingers and toes, general muscle weakness, difficulty breathing, and, in severe cases, paralysis.

Treatment: Supportive care until the condition is stabilized, then rehabilitation therapy combined with whirlpool baths to relieve pain and facilitate retraining of movements. A process called plasmapheresis, which removes plasma and nerve-damaging antibodies from the blood, is used during the first few weeks after a severe attack and may improve the chance of a full recovery.

Endocrine Diseases

Hashimoto's Thryoiditis

      Hashimoto's Thyroiditis is a type of autoimmune disease in which the immune system destroys the thyroid, the gland that helps set the rate of metabolism. It attacks women 50 times more often than men.

Symptoms: Low levels of thyroid hormone cause mental and physical slowing, greater sensitivity to cold, weight gain, coarsening of the skin, and goiter (a swelling of the neck due to an enlarged thyroid gland).

Treatment: Thyroid hormone replacement therapy.


Grave's Disease

     Graves' disease is one of the most common autoimmune diseases, affecting 13 million people and targeting women seven times as often as men.. Patients with Graves' disease produce an excessive amount of thyroid hormone.

Symptoms: Weight loss due to increased energy expenditure; increased appetite, heart rate, and blood pressure; tremors, nervousness and sweating; frequent bowel movements.

Treatment: Antithyroid drug therapy or removal of the thyroid gland surgically or by radioiodine.


Insulin-Dependent (Type 1) Diabetes

      Type 1 diabetes is caused by too little insulin production in the pancreas, and usually occurs in children and young adults, but it can occur at any age.

Symptoms: Increased thirst, increased urination, weight loss, fatigue, nausea, vomiting, frequent infections.

Treatment: Monitoring of diet and insulin.

Gastrointestinal Diseases

Inflammatory Bowel Disease

Inflammatory bowel disease describes two autoimmune disorder of the small intestine--Crohn's disease and ulcerative colitis.

Symptoms of Crohn's disease: Persistent diarrhea, abdominal pain, fever, and general fatigue.

Symptoms of ulcerative colitis: Bloody diarrhea, pain, urgent bowel movements, joint pains, and skin lesions.

In both diseases, there is a risk of significant weight loss and malnutrition.

Treatment: Antidiarrheal pills or bulk formers for mild cases. For more serious cases, anti-inflammatory drugs are effective. Corticosteroids are reserved for acute flare-ups of these diseases. In some cases, surgery may be required to remove obstructions or repair perforation of the colon.

Other Autoimmune Diseases

Vasculitis Syndeomes

This is a broad and heterogeneous group of diseases characterized by inflammation and damage to the blood vessels, thought to be brought on by an autoimmune response. Any type, size, and location of blood vessel may be involved. Vasculitis may occur alone or in combination with other diseases, and may be confined to one organ or involve several organ systems.


Hematologic Autoimmune Diseases

      Blood also can be affected by autoimmune disorder. In autoimmune hemolytic anemia, red blood cells are prematurely destroyed by antibodies. Other autoimmune diseases of the blood include autoimmune thrombocytopenic purpura and autoimmune neutropenia.


Autoimmune Skin Diseases

      The skin frequently gives the first sign that an autoimmune diseases is present. In many of the diseases mentioned, the skin is only peripherally involved, but in others, the skin is the primary site of the disease. One of the foremost is psoriasis, a common skin disease that results from a malfunction in the life cycle of skin cells. The process of skin cell production that normally takes about a month is speeded up to several days, resulting in a build-up of thick scales.

SUMMARY

     Autoimmune diseases run the gamut from mild to disabling and potentially life threatening. Nearly all affect women at far greater rates than men. The question before the scientific community is "why?" We have come a long way in the diagnosis and treatment of autoimmune disease. But more work is needed, especially in the areas of discovering the causes and developing more effective treatments and prevention strategies.

     The U.S. Public Health Service's (PHS) Office on Women's Health in the Department of Health and Human Services, was established to redress the inequities in research, health services, and education that have placed the health of American women at risk. Its mission is to direct, stimulate, and coordinate women's health research, health care services, and public and health care professional education and training across the Public Health Service agencies and to collaborate with other government organizations, foundations, private industry, consumer and health care professional groups to advance women's health. The focal point for women's health activities in the Department of Health and Human Services, the PHS Office on Women's Health is working to improve the health of American women in this decade and beyond into the 21st century.

     The programs and activities in autoimmune diseases of the PHS Office on Women's Health, joined with initiatives and programs across the agencies and office of the Department of Health and Human Services, are providing a solid foundation from which to increase knowledge about autoimmune disorders in women.

For more information on autoimmune diseases, contact:
American Autoimmune Related Diseases Association
22100 Gratiot Ave
E. Detroit, MI 48021
Phone: (586)776-3900



 


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