Arthritis Pain Varies Widely Across States

By Pat Anson, PNN Editor

People living in West Virginia are three times more likely to have moderate or severe joint pain from arthritis than those in Minnesota, according to a comprehensive new study that highlights how disparities in education and access to social services contribute to chronic pain.

“Very little research has examined the geography of chronic pain, and virtually none has examined the role of state-level policies in shaping pain prevalence,” says co-author Hanna Grol-Prokopczyk, PhD, an associate professor of sociology at the University of Buffalo. “We were excited to identify state characteristics that reduce residents’ risk of pain.”

Grol-Prokopczyk and her colleagues looked at data for over 400,000 adults who participated in the 2017 Behavioral Risk Factor Surveillance System, along with data from all 50 states on social assistance and anti-poverty programs such as the Earned Income Tax Credit, Medicaid and Supplemental Nutrition Assistance Program (SNAP), more commonly known as food stamps.

Their findings, published in the journal PAIN,  show the risk of joint pain was significantly higher in states in Appalachia, the Mississippi Valley and the South, compared to states in the Upper Midwest and West.

Nearly one in four adults in West Virginia (23.1%), Alabama (21.6%) and Arkansas (21.4%) had moderate to severe joint pain. States with the lowest risk of joint pain are Minnesota (6.9%), Hawaii (7.5%) and Utah (7.7%).

SOURCE: PAIN

Digging deeper into the data, researchers found that educational disparities are also associated with pain frequency. People who did not complete high school in West Virginia (31.1%), Arkansas (29.7%) and Alabama (28.3%) were far more likely to have joint pain compared to those with bachelor degrees in California (8.8%), Nevada (9.8%) and Utah (10.1%).

People with less education are more likely to have blue-collar jobs requiring manual labor that may contribute to joint pain. They also have lower incomes and less access to healthcare.

“Education can function as a ‘personal firewall’ that protects more highly educated people from undesirable state-level contexts, while increasing the vulnerability of less educated individuals,” said first author Rui Huang, a sociology PhD student in the UB College of Arts and Sciences.

Researchers also found that states with higher levels of SNAP benefits, social support and community health services had lower levels of pain frequency.

“The increase in the generosity of SNAP benefits could potentially alleviate pain by promoting healthier eating habits and alleviating the life stress associated with food insecurity,” says Huang. “Social factors such as conflict, isolation and devaluation are also among the ‘social threats’ that can lead to physical reactions such as inflammation and immune system changes.”

Previous studies at the University of Buffalo have found that gender, poverty and education play a role in pain frequency and that the overall prevalence of pain is increasing in the United States, affecting virtually every age group, sex, ethnicity and demographic.

Older Adults Look Beyond Western Medicine for Help With Joint Pain

By Pat Anson, PNN Editor

Most older Americans use over-the-counter pain medication and exercise to manage their joint pain, according to a large new survey of adults over age 50. Marijuana, opioids and non-steroidal anti-inflammatory drugs (NSAIDs) were rated the most effective pain relievers among those who used them.

The survey of 2,277 adults aged 50 to 80 was conducted online and over the phone early this year as part of the University of Michigan’s National Poll on Healthy Aging. It found that many older adults looked beyond conventional Western medicine for help with their joint pain, but few talked to their doctors about it.

Eight out of ten people (80%) with joint pain said they were confident they could manage it on their own. The survey found that two-thirds (66%) used over-the-counter pain relievers such as NSAID’s or acetaminophen.

The vast majority (89%) also used non-pharmacologic treatments to manage their symptoms, including exercise (64%), massage (26%), physical therapy (24%), splints or braces (13%), and acupuncture or acupressure (5%).

One in four (26%) said they take supplements, such as glucosamine, chondroitin and turmeric, while 11% use cannabidiol (CBD) products and 9% use marijuana.

Only a minority use prescription-based treatments, such as non-opioid pain relievers (18%), steroid joint injections (19%), oral steroids (14%), opioids (14%) and disease-modifying anti-rheumatic drugs (4%).

NATIONAL POLL ON HEALTHY AGING

“There are sizable risks associated with many of these treatment options, especially when taken long-term or in combination with other drugs. Yet 60 percent of those taking two or more substances for their joint pain said their health care provider hadn’t talked with them about risks, or they couldn’t recall if they had,” said Beth Wallace, MD, Assistant Professor of Internal Medicine at Michigan Medicine and a staff rheumatologist at the VA Ann Arbor Healthcare System.

“This suggests a pressing need for providers to talk with their patients about how to manage their joint pain, and what interactions and long-term risks might arise if they use medications to do so.”

Both NSAIDs and oral steroids have health risks, especially for older adults. Chronic NSAID use can worsen medical conditions such as hypertension, kidney disease, gastrointestinal bleeding and cardiovascular disease. Short-term use of oral steroids is associated with similar problems, as well as increased risk of developing diabetes, cataracts, insomnia, depression, and anxiety.

The risks are even greater if NSAIDs and oral steroids are taken together. Despite this, about one in four older adults taking oral steroids for joint pain said they had not discussed the potential risks with their provider.

Joint pain is common among older adults, including those who have not been formally diagnosed with arthritis. Nearly half of those surveyed reported joint pain that limited their daily activities, but few rated their symptoms as severe and most regarded joint pain as a normal part of aging.

Those with severe joint pain were somewhat fatalistic about it, with nearly half (49%) agreeing with the statement that “there is nothing a person with arthritis or joint pain can do to make their symptoms better.” Only 10% of those with mild joint pain agreed there was nothing they could do about it.

“Older adults with fair or poor physical or mental health were much more likely to agree with the statement that there’s nothing that someone with joint pain can do to ease their symptoms, which we now know to be untrue. Health providers need to raise the topic of joint pain with their older patients, and help them make a plan for care that might work for them,” said poll director Preeti Malani, MD, a Michigan Medicine physician who specializes in geriatrics and infectious diseases.

Lyme Disease Cases Soar in U.S.

By Pat Anson, PNN Editor

Diagnoses of Lyme disease in the United States have soared over the past 15 years, primarily in rural areas in the Northeast, according to a new analysis of private insurance claims by FAIR Health, a nonprofit that tracks healthcare costs and insurance trends.   

Lyme disease is a bacterial illness spread by ticks. Left untreated, it can lead to chronic fatigue, muscle and joint pain, cognitive issues and other long-term symptoms that are often misdiagnosed as fibromyalgia, neuropathy or autoimmune disorders.

In its analysis of over 36 billion insurance claims from 2007 to 2021, FAIR Health said that claims with a Lyme disease diagnosis rose 357 percent in rural areas and 65 percent in urban areas. The highest rates of Lyme disease were in New Jersey, Vermont, Maine, Rhode Island and Connecticut.

“Lyme disease remains a growing public health concern. FAIR Health will continue to use its repository of claims data to provide actionable and relevant insights to healthcare stakeholders seeking to better understand the ongoing rise of Lyme disease cases,” FAIR Health President Robin Gelburd said in a press release.

The FAIR Health study found that malaise, fatigue and soft-tissue-related symptoms were significantly more common in Lyme patients than in the overall patient population.

Other early symptoms of Lyme disease include fever, chills, headache, and swollen lymph nodes. A delayed rash often appears at the site of the tick bite. The rash grows in size and sometimes resembles a bulls-eye.

Although Lyme disease is treatable with antibiotics, some patients develop long-term symptoms known as Lyme disease syndrome or chronic Lyme disease.

About 30,000 Lyme cases are reported annually by state health departments. The CDC estimates the actual number of cases is probably much higher and that about 300,000 Americans may become infected every year.

Most reported cases of Lyme disease occur in the Northeast, mid-Atlantic and upper Midwest, especially during the summer months when more people spend time outdoors. Recent studies show Lyme is spreading to neighboring states and is no longer just a seasonal disease, possibly due to the effects of climate change.

The Hidden Benefits of Glucosamine

By Pat Anson, PNN Editor

Do you take glucosamine supplements to reduce joint pain and stiffness? You’re not alone if you do. According to a 2007 survey, nearly 20 percent of U.S. adults take glucosamine to prevent or treat pain from osteoarthritis, back pain and other conditions.

The evidence to support the use of glucosamine for joint pain is thin, but a large new study in The BMJ suggests regular use of the supplement can reduce the risk of cardiovascular disease.

Researchers at Tulane University analyzed 7 years of extensive health data for almost half a million adults aged 40 to 69 enrolled in the UK Biobank study. Those who regularly took glucosamine were about 15% less likely to develop heart disease or have a stroke.

Glucosamine occurs naturally in the fluid around joints and plays an importantly role in building cartilage. Glucosamine is extracted from shellfish and is often combined in supplements with chondroitin, a similar substance that is also found in joints.

People who took glucosamine in the BMJ study were more likely to be women, older, more physically active, have healthier diets and take other supplements.

Over the course of seven years, 2.2% of those who did not use glucosamine had a heart attack or stroke, compared to 2.0% of people who did use glucosamine. People who used glucosamine were also less likely to die from a heart attack or stroke, 0.5% vs. 0.7% of those who didn’t use the supplement.

The difference doesn’t appear to be significant, but when adjusted for risk and other factors, it means that glucosamine users had a 22% lower risk of dying from a heart attack or stroke.

For smokers, the benefits of regular glucosamine use were even greater. They had 37% less risk of having coronary heart disease compared to smokers who didn’t use the supplements.

Researchers didn’t establish the reason why glucosamine lowers the risk of cardiovascular disease (CVD), but they believe the supplements help reduce inflammation – one of the main factors involved in the development of heart disease, as well as chronic pain.

“Several potential mechanisms could explain the observed protective relation between glucosamine use and CVD diseases. In the National Health and Nutrition Examination Survey (NHANES) study, regular use of glucosamine was associated with a statistically significant reduction in C reactive protein concentrations, which is a marker for systemic inflammation,” researchers reported. “Other mechanisms might also be involved, and future investigations are needed to explore the functional roles of glucosamine in cardiovascular health.”

The UK’s National Health Service (NHS) downplayed the study findings, pointing out the cardiovascular benefits of glucosamine are “quite small.”

“If you want to reduce your risk of having a heart attack or stroke, it would be much better to concentrate on living a healthy lifestyle, rather than paying for glucosamine supplements,” the NHS said.

Wear, Tear & Care: Rating Omron's Avail TENS Unit

By Jennifer Kilgore, Columnist

I don’t use TENS units very often. Since I wear the Quell on a daily basis, it usually seems superfluous -- unless I’m having a very bad day.

Then my TENS unit makes an appearance, wires snaking under my shirt and sticky pads placed wherever I can get them. The power pack is latched to my pants, and the result is that I feel like a moron. Even if there is nobody at home to witness my treatment, I become self-conscious. My cat has an opinion, I’m sure.

That’s why I was excited to try the Omron Avail TENS device. It’s wireless, has two large pads, and can be controlled from my phone. There’s no bulky battery pack to wear on my belt, no wires tangling me, and the pads themselves are larger than the unit I currently have. The coverage of more bodily real estate is always a winner for me.

The Avail TENS is a wearable electrotherapy device that is designed to alleviate chronic muscle and joint pain. It has various pre-programmed settings designed for the shoulder, arm, back or leg; as well as modes that include both TENS and microcurrent, the latter of which applies electrical stimulation that one can hardly feel. The TENS modes are much stronger in sensation.

IMAGE COURTESY OF OMRON

I actually didn’t know that microcurrents were used in pain relief -- I thought they only applied to anti-aging treatments at spas. However, this therapy mimics the body’s natural currents, which are believed to restore normal frequencies within cells.

I don’t know how well the microcurrent mode works yet, because I still experienced pain when I tried it.  I imagine it takes some getting used to and that benefits accrue over time. However, the TENS mode works wonderfully, and having such large pads means that I can get more coverage.

Treatment sessions run between 30 and 60 minutes, depending on the mode chosen. You can also set sessions to run indefinitely. To charge the sensors, they must be placed on a special charging box that comes with the device. I’ve managed to use it multiple times now after the initial charge.

IMAGE COURTESY OF OMRON

It is very easy to set up and use, as most of it is intuitive for a chronic pain patient. The device must be paired with your smartphone, and the app is fairly straightforward. The only thing that kept happening to me was that the pads would unlink with the app because I kept pressing the power button on the pads by mistake -- for instance, when I leaned back on a couch.

The pads stay on well. The "help” section of the app states I can use them up to 30 times, and replacement pads range from $12.75 to $19.99. I might resort to using athletic tape to keep them on longer, as I do with normal TENS pads. I know that isn’t advised, but I want these pads to last as long as possible.

So far, my only complaint is the slight bulkiness of the pad itself. Having a wireless device means that a sensor must be placed on the pad, which ties it to the app. These blink in orange or green lights, which are even visible from underneath two shirts. Granted, clothing manufacturers have been making clothing thinner and thinner so you are required to buy more clothes, so maybe that’s not Omron’s fault. There’s even a name for this clothing phenomenon: “planned obsolescence.”

Additionally, since my problem areas are on my back, sitting in a chair can be awkward. The pads stick out and rub against the seat, which turned them off once or twice. I don’t think the unit is meant to be worn all day, though, unless one plans to use microcurrents alone. The company only recommends that three TENS treatment sessions be completed on a daily basis.

My overall impression is a good one. I like the device, and I think it works well. It controls my pain when I use the TENS settings. I just wish the sensors on the pads were thinner -- that would help my back-pained compatriots (and me) when leaning back into a chair. That seems like a small complaint for such a device, though.

The Omron Avail is currently on sale for $159.99 (normally retails at $199.99). 

Jennifer Kain Kilgore is an attorney editor for both Enjuris.com and the Association of International Law Firm Networks. She has chronic back and neck pain after two car accidents.

Jennifer receives products or services mentioned in her reviews for free from the manufacturer. She only mentions those that she uses personally and believes will be good for readers. You can read more about Jennifer on her blog, Wear, Tear, & Care.  

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Why Does Menopause Worsen Rheumatoid Arthritis?

By Pat Anson, Editor

A large new study is confirming what many women with rheumatoid arthritis (RA) already know – menopause and hormonal changes can significantly worsen their pain and other symptoms. But it's not clear why that happens.

Researchers at the University of Nebraska Medical Center enrolled over 8,000 women with RA – both young and old -- in their observational study. They found that post-menopausal women with RA had a significant increase in the level and rate of functional physical decline. Menopause was also associated with a worsening progression of the disease.

RA is a chronic and disabling autoimmune disease in which the body’s own defenses attack joint tissues, causing pain, inflammation and joint erosion. Women experience RA at a rate three times greater than men, have more severe symptoms and increased disability.

Previous studies have shown that women with RA experience changes in their disease during reproductive and hormonal changes. During pregnancy, women are less likely to develop RA, yet the disease is more likely to progress and flare during the post-partum period. Similarly, women who experience early menopause are more likely to develop RA compared to those who experience normal or late menopause.

Hormone levels of estrogen increase during pregnancy and decline during menopause – but the association with RA is not fully understood.

"Further study is needed as to why women with rheumatoid arthritis are suffering a greater decline in function after menopause," said the study's lead author, Elizabeth Mollard, PhD, an assistant professor in the College of Nursing at the University of Nebraska Medical Center.

"Not only is this decline causing suffering for women, it is costly to both individuals and the healthcare system as a whole. Research is specifically needed on the mechanism connecting these variables with the eventual goal of identifying interventions that can maintain or improve function in postmenopausal women with rheumatoid arthritis."

The study is published in the journal Rheumatology.

RA affects about 1.3 million Americans and about one percent of the global population. Until the late 1990s, one in three RA patients were permanently disabled within five years of disease onset.

Although there are still no cures for RA, in recent years there has been significant improvement in treatment, with disease control now possible for many patients who receive biologic drugs. Those treatments are expensive, with some biologic therapies costing $25,000 a year.

9 Holistic Approaches to Relieve Joint Pain

By Nicole Noel, Guest Columnist

Whatever your ailment may be, holistic medicine has an answer.

A therapeutic method that dates back to early civilizations, holistic medicine takes into account the mind, body, emotions and spirit -- with the aim of helping patients achieve or restore proper balance in life and prevent or heal a range of conditions, including musculoskeletal pain. Holistic treatments offer a ray of hope for many patients suffering from arthritis, osteoporosis, fibromyalgia and other conditions that cause joint pain.

Not all alternative medicine is created equal, and some natural healing methods will produce better and quicker results. If you want to treat arthritis and other joint aches with holistic treatments, here are a few natural pain relievers you can try.

1. Tai Chi

A low-impact activity that can increase range of motion and strengthen joints and surrounding muscle tissue, tai chi is an ancient physical and spiritual practice that can help arthritis patients soldier through their pain.

According to a 2013 study, tai chi can relieve pain, stiffness, and other side-effects of osteoarthritis. In addition to pain relief, tai chi can help improve range of motion and alleviate joint pain for people living with fibromyalgia and rheumatoid arthritis.

2. Yoga

Another ancient technique which promotes natural healing, yoga is perfect for individuals suffering from lower back and joint pain. Gentle stretches and poses opening the joints can help prevent and alleviate chronic soreness in the shoulders, hips, and knees.

A form of yoga called mudras utilizes a series of hand gestures to increase energy, and improve mood and concentration.

3. Massage

An invigorating massage with warm essential oil can help many conditions, and joint pain is one of them.

By enhancing blood flow, relaxing the muscle tissue and soothing inflammation, a well-timed massage can ease joint stiffness and increase range of motion in individuals suffering from arthritis, fibromyalgia, and osteoporosis.

4. Acupuncture

A 2013 review of medical studies has shown that acupuncture can help relieve musculoskeletal pain caused by fibromyalgia. By activating the body’s natural pain relief system and stimulating the nerves, muscles and connective tissue, acupuncture can relieve joint aches for people who are resistant to other holistic pain relief techniques.

A 2010 study found that acupuncture can also be a beneficial for peripheral joint osteoarthritis.

5. Diet Changes

An apple a day may or may not keep the doctor away, but a custom-tailored diet can help you with joint pain. Nutritional tweaks can begin with increased intake of chondroitin sulfate, glucosamine, and Omega 3 fatty acids, which can reduce joint pain in arthritis and osteoporosis patients.

To ease joint problems, your pantry should be stocked with foods that promote healing and reduce inflammation, such as onions, carrots, and flaxseed. Herbs and spices such as turmeric (curcumin) and cayenne pepper can also help with pain relief.

6. Aromatherapy

If you think pain relief can’t smell good, you’re mistaken. Studies have shown that peppermint and eucalyptus oil can reduce swelling, pain and discomfort in patients with inflamed joints. For joint soreness and stiffness caused by arthritis, aromatherapy experts recommend regular application of myrrh, turmeric, orange, or frankincense oil to ease inflammation and pain, and to increase range of motion.

You can also combine aromatherapy with heat and cold treatments.  Be sure to keep the tender joints elevated during treatment to reduce swelling.

7. Spa Treatments

Few things can beat the appeal of a full-scale spa experience. If you’re suffering from knee, hip, shoulder or elbow pain and other holistic methods haven’t helped, try balneotherapy, which combines aqua massage with deep soaks in heated mineral water and medicinal mud baths.

One study found that balneotherapy significantly reduced knee and back pain in older adults.

8. Aquatic Sports

If you don’t want to immerse yourself in mud, you can supplement your holistic pain therapy with water aerobics, swimming, aqua jogging or aqua spinning. According to a 2014 study, water exercises can ease pain and improve joint function for osteoarthritis patients.

Additionally, a 2015 study found that aquatic circuit training can help relieve knee pain in cases of progressed osteoarthritis.

9. Capsaicin cream

Another natural treatment for joint pain and stiffness is homemade capsaicin cream, which can help reduce swelling and increase range of motion. To stay on the safe side, you should be careful when handling hot peppers when preparing the cream, and avoid using it on sensitive and damaged skin.

As our bodies age, joint pain can become a chronic. If you don’t want to take your chances with conventional pharmaceuticals, you can always turn to holistic medicine for answers and help. When musculoskeletal pain hits home, one or more of these holistic treatments can help.

Nicole Noel is a lifestyle blogger who is passionate about yoga and healthy living. She enjoys sharing her experiences and ideas on how to lead a happy and healthy life. If you want to read more from Nicole, you can find her on Twitter and Facebook.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Study Finds Rain Not Linked to Joint Pain

By Pat Anson, Editor

The debate over weather’s influence on pain is heating up again, with the release of a new study that showed warmer temperatures -- not rainy conditions -- are associated with an increase in online searches about joint pain.

The apparent increase in knee and hip pain may be due to increased outdoor physical activity, according to researchers who reported their findings in PLOS ONE.

Investigators used Google Trends to analyze how often people used Google’s search engine to look up words and phrases associated with hip pain, knee pain and arthritis. Then they compared the results with local weather conditions at 45 U.S. cities. The weather data included temperature, precipitation, relative humidity and barometric pressure - conditions previously associated with increases in musculoskeletal pain.

Researchers found that as temperatures rose, Google searches about knee and hip pain rose steadily, too. But knee-pain searches peaked at 73 degrees Fahrenheit and became less frequent at higher temperatures. And searches for hip-pain peaked at 83 degrees and then tailed off.

Surprisingly, rain actually dampened search volumes for both knee and hip pain.

"We were surprised by how consistent the results were throughout the range of temperatures in cities across the country," said Scott Telfer, a researcher in orthopedics and sports medicine at the University of Washington School of Medicine.

Searches about arthritis, which was the study's main impetus, had no correlation with weather conditions.

"You hear people with arthritis say they can tell when the weather is changing," he said. "But with past studies there's only been vague associations, nothing very concrete, and our findings align with those."

What do the findings mean?

Because knee and hip-pain searches increased until it grew warm, and rainy days tended to slightly reduce searches for hip and knee pain, the researchers speculate that changes in outdoor physical activity may be primarily responsible for those searches.

"What we think is much more likely explanation is the fact that people are more active on nice days, so more prone to have overuse and acute injuries from that and to search online for relevant information,” Telfer said, adding that web searches are often the first response people have to health symptoms.

Researchers in Australia recently reported that cold, rainy weather has no impact on symptoms associated with back pain or osteoarthritis. Warmer temperatures did slightly increase the chances of lower back pain, but the amount of the increase was not considered clinically important. 

A previous study on back pain and weather by The George Institute for Global Health had similar findings, but received widespread criticism from the public, a sign of just how certain many people are that weather affects how much pain they feel.

“I know it is going to rain or have a thunderstorm before the weather person announces it on the news,” says Denee Hand, who suffers back pain from arachnoiditis, a chronic inflammation of the spinal membrane. She says the pain spreads down to her toes when the weather changes. 

“It is like my nervous system and muscles react to the coming weather and finally I get pain that feels like the tops of both my feet are being crushed,” she said in an email to PNN. “I have compression of the spinal cord with nerve damage to my nerves from the scar tissue and when the weather changes the scar tissue presses down against the damaged nerves.”

Researchers at the University of Manchester recently ended a study involving thousands of people who used smartphone apps to report their pain levels, giving investigators the ability to compare the pain data with real-time local weather. Researchers are now analyzing the database compiled over the last 15 months and will release their results next spring.

My Wife Had Ehlers-Danlos and Didn’t Know It

By John Ferman, Guest Columnist

We were married for 41 years.  You’d think after all of that time you would know everything there was to know about a person.

I knew Carol as a loving wife who would do anything she could for the kids and the family. She was a social worker and very concerned about the comfort of others. She didn’t complain and didn’t want others to worry about her.

Carol’s symptoms started shortly after we were married in 1967.  Carol was very energetic, had just graduated with a master’s degree in guidance and counseling, and was anxious to start her new career. She also was somewhat of a “perfectionist” who wanted to keep the house clean and organized, but started to develop some pains as a result.

I remember attending Lamaze classes in 1969, when she was pregnant with our first daughter. The instructor commented on how “flexible” Carol seemed to be during the exercises. Our first daughter Deborah was 4 weeks premature and the second daughter Deanna was 7 weeks premature. We joked that if she got pregnant again we would have to carry around a basket to be ready for the next one.

CAROL FERMAN

Carol’s joint pain got more severe in the 1980’s. She was the first director of a new crisis hotline in the Cleveland, Ohio area and was working unusually long hours.  With all of the mental and physical stresses she was going to a chiropractor monthly and then weekly.  She was also getting massages on a regular basis.

Initially, Carol’s neck, back and shoulders were the major issues. The doctors did not seem to understand her pain and could only recommend ointments and pain medication.  It did not seem to help. She was diagnosed with Thoracic Outlet Syndrome, TMJ and maybe fibromyalgia, but they were not sure. 

I was taking over the household tasks of cleaning, doing the dishes and the laundry.  Some family members commented that they thought Carol “looked perfectly okay” but was weak, lazy and taking advantage of my help. I knew there was a problem with her pain but I did not know what it was or what else to do to help.  

In addition, Carol had severe allergies, IBS symptoms and an extremely sensitive stomach, so she avoided certain foods, spices, and medications. Her allergies often limited where we went for social activities and even restricted purchasing certain items if they had chemical smells, dust, or cigarette odors.

She had flat feet and was prescribed orthotics. Her feet always hurt and finding comfortable shoes was challenging.  She had very sensitive hearing and was a very light sleeper. The slightest noise would wake her.  Pain and disturbed sleep meant she always woke up exhausted!

Carol would describe affected parts of her body as shifted, twisted, crooked, and her favorite word "discombobulated" (meaning everything was zig-zag and out-of-whack). Her pain was achy and throbbing, and she also had episodes of radiating pain, stabbing, pinched nerves and numbness. She would say things like, "I will hurt myself if I reach or stretch for that item, or if I bend that way or if I twist my body."

She had a lot of extra pain if she tried to carry something that was awkward or too heavy. My daughters could carry heavier items than my wife, and the kids and I did a lot of the fetching, carrying and cleaning for her. I made most of the meals and got the kids off to school.

As a result of her non-restorative sleep and pain, Carol was often in bed until the kids got off the bus from school. The girls would run upstairs to the bedroom, eager to spend some quality time with mom, as she was getting out of bed in the middle of the day. The girls remember it as a special time. Moments like these with her girls gave her some comfort and support, but the girls were sometimes embarrassed. They could not tell anyone that their mother was in bed all day.

Carol’s muscles were always tight, and she often described her pain as if "one part of her body was pulling at another.” The only exercise she could tolerate was very slow walking. She loved walking at sunset in the park.

She had pain driving a car and searched extensively to find the most comfortable car so she could remain independent. It was very stressful for her to be a passenger in a car. She would try to brace herself for the starts, stops, bumps, and turns.  If I was driving, she would request alternate routes for straighter roads. We would sometimes go 3 or 4 miles out of our way to find a smooth straight road for her to travel on.

We didn’t know at the time that these were telltale symptoms of Ehlers-Danlos Syndrome (EDS).

Carol was very discouraged that the doctors did not believe her and she stopped telling them about her pain because the tests came back “normal” and there was no treatment or even a reason for her pain. They just told her she was overly-sensitive, exaggerating, or “it’s all in your head.” 

It really bothered her that her medical records said all those bad things about her "mental state.”  She tried at times, in vain, to get the records changed. She knew that when she was depressed, it was due to fatigue, lack of sleep and pain. Not because she was making up things to be sad about.

She could only sustain working for a few more years part time, and then it got to be too much for her physically.

We continued to play out that very difficult lifestyle until Carol was diagnosed with breast cancer in 2002. The continuing pains, surgeries and chemotherapy took their toll on her and she had a major struggle with clinical depression.  She was on so many medications that they masked many of the symptoms.

Carol passed away in 2008 of breast cancer as a result of some prescribed medication, the same year my daughter Deanna was diagnosed with EDS.  In her early 20’s, Deanna developed many of the same symptoms and pain as her mom. They often talked about the similarities and offered each other comfort and understanding.

EDS is a genetic defect in collagen protein -- the “glue” that supports and holds the body together. It causes chronic pain, joint hyper-mobility (double-jointedness and fragile joints) and affects multiple other body systems. There is no fix -- no medicine or surgery -- that resolves this condition. However, it is important that EDS be diagnosed and managed, so that symptoms can be controlled and appropriate preventive measures can be taken.

If only someone had told Carol about EDS. It would have saved both mother and daughter much suffering, loneliness and judgment.  I don't have room in this article for all the details about how undiagnosed EDS harmed my wife and daughter's lives.  Just believe me when I say emphatically that if they had known about EDS, their lives would have been dramatically different!

DEANNA HAMM

Ehlers-Danlos Syndrome is not rare. It is rarely diagnosed.  It is estimated that EDS affects more than 1 in 5,000 people worldwide, but only 5% are correctly diagnosed with one of the 6 major forms of EDS.  In the United States alone, 650,000 sufferers go undiagnosed every year due to physician mistakes or lack of knowledge about the condition.

Many afflicted with EDS - and the people who care for them – don’t know where to turn for information, advice and help with issues such as treatments, therapies, practitioners and products to assist in managing the symptoms. The majority of those who are undiagnosed do not know this disorder exists and are left on their own, struggling to find a reason and a name for the pain and suffering they are experiencing. They suffer for many years and die – never knowing why they had the pain.

Tell someone about EDS today and every day. I do! You could improve a life or even save one!

John Ferman and his daughter Deanna Hamm are co–founders of EDS Awareness, a non-profit online resource for the Ehlers Danlos Syndrome community. John is a full time volunteer managing the program. Deanna is a pre-med graduate with Hypermobile EDS. She leads the Cleveland Ohio EDS Support Group.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.