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Tag: Chronic Disease

Understand chronic diseases, their causes, common symptoms, and effective management strategies to improve long-term health and quality of life.

When Chronic Pain Leads to ‘Appointment Fatigue’
Breaking the Cycle of Appointment Fatigue in Chronic Pain Management

Living with chronic pain means navigating a constant balancing act—managing symptoms, medications, work, relationships, and self-care. At the core of this juggling act lies an unspoken burden many patients face: appointment fatigue. This term refers to the emotional, mental, and physical exhaustion that comes from attending endless medical appointments, undergoing tests, meeting new specialists, and often, repeating the same explanations of symptoms without seeing long-term improvement.

For individuals dealing with persistent pain, medical visits become a routine, yet their frequency can slowly wear down one’s motivation and hope. What begins as a path to healing may transform into a cycle of burnout, disillusionment, and disengagement from healthcare altogether.

This article dives deep into the phenomenon of appointment fatigue, what causes it, how it impacts chronic pain sufferers, and how patients can reclaim their autonomy in the face of healthcare overload.

Understanding Appointment Fatigue in the Context of Chronic Pain

Chronic pain is not simply a lingering ache. It is a long-term condition that can stem from various sources including autoimmune diseases, nerve damage, past injuries, fibromyalgia, and musculoskeletal disorders. Unlike acute pain that resolves with treatment, chronic pain persists beyond the typical healing window and often requires ongoing care from multiple providers.

As a result, patients may attend appointments with:
- Primary care physicians
- Pain specialists
- Physical therapists
- Psychologists
- Rheumatologists
- Occupational therapists
Each of these visits involves waiting times, transportation planning, paperwork, billing concerns, and sometimes disappointing news. The repetitive nature of these experiences, coupled with limited improvements or inconsistent care, builds up over time. This accumulation can give rise to a deep sense of frustration, helplessness, and a strong desire to simply stop showing up.

Common Signs That Indicate Appointment Fatigue

Recognizing appointment fatigue early can prevent further deterioration in one’s healthcare engagement. Some common signs include:
- Canceling or rescheduling appointments frequently, even when not sick or physically unable
- Feeling dread, anxiety, or anger when thinking about medical visits
- Becoming emotionally numb or indifferent during consultations
- Not following through with referrals, tests, or treatment plans
- Avoiding contact with healthcare providers or clinics altogether
- Declining in health due to untreated symptoms or complications
It’s important to understand that appointment fatigue is not laziness or irresponsibility. It is a valid response to an overextended emotional bandwidth in an already stressful healthcare experience.

The Emotional Toll of Navigating a Fragmented Healthcare System

For chronic pain sufferers, the road to diagnosis and treatment is rarely straightforward. Often, it involves seeing multiple specialists who may offer conflicting advice. Patients may be forced to re-explain their pain journey at every appointment, recount failed treatments, or defend their need for pain management, especially amid growing stigma around opioid use.

All of this contributes to a feeling of being unheard, unvalidated, and overly medicalized. Instead of feeling supported, patients may feel reduced to a list of symptoms on a chart. This emotional toll erodes trust and contributes to appointment fatigue.

Financial and Logistical Strains Amplify the Burden

The cost of chronic pain management is another contributor. Even with insurance, copays, transportation costs, unpaid time off work, and prescription expenses add up quickly. If appointments don’t deliver tangible results, the perceived cost-benefit ratio becomes unfavorable. Patients begin to question, is this really worth it?

Logistical hurdles like coordinating care between specialists, scheduling appointments months in advance, and finding available practitioners who truly listen can become overwhelming. These tasks consume energy that patients would rather use for daily life or symptom management.

Healthcare Inequities Worsen the Experience for Some

Those from marginalized communities may experience even deeper levels of fatigue due to systemic barriers. Language differences, implicit bias from healthcare providers, lack of nearby specialists, or financial instability can all lead to fewer options and worse experiences. Appointment fatigue for these individuals often includes an additional layer of distrust or previous medical trauma, further discouraging engagement.

How to Cope and Break Free from Appointment Fatigue

While appointment fatigue is real and challenging, it doesn’t have to become a permanent obstacle. There are steps chronic pain patients can take to regain control over their healthcare experience.

Prioritize Appointments Based on Value

Not every follow-up is essential. Patients can work with a trusted provider to identify which appointments are crucial and which can be delayed, reduced in frequency, or combined. Prioritizing value over volume gives patients more control over their time and energy.

Set Clear Goals for Each Visit

Approaching appointments with a purpose can help reduce frustration. Write down specific questions, concerns, or goals beforehand. If possible, share these in advance with your provider to focus the conversation and avoid wasted time.

Use Telehealth When Available

Virtual appointments eliminate travel time, reduce scheduling stress, and may be more manageable on bad pain days. While not ideal for every visit, they are a helpful tool for routine check-ins or medication management.

Track Symptoms and Share Concisely

Using pain journals or digital symptom trackers can streamline communication during visits. When providers see patterns and progress laid out clearly, appointments tend to be more productive and less repetitive.

Build a Core Care Team You Trust

Rather than relying on multiple specialists, try to work closely with a few key providers who understand your history and goals. A coordinated team reduces duplication and provides more personalized care.

Take Mental Health Seriously

Psychological support is vital. Seeing a therapist familiar with chronic illness can help process the emotional exhaustion that feeds appointment fatigue. Therapy can also provide strategies for setting boundaries and communicating more effectively with medical professionals.

Reclaiming Your Voice in a Complex System

Chronic pain does not just impact the body; it infiltrates every aspect of a person’s life. When medical care starts feeling more like a burden than a support system, it’s a sign that the balance needs to be restored. Patients have every right to advocate for themselves, to ask for care that meets their needs, and to opt out of what is not serving them.

This might mean switching providers, taking breaks between appointments, or even re-evaluating which symptoms need professional management versus home care. The most important thing is for patients to feel like active participants, not just subjects of an endless medical routine.

Frequently Asked Questions

1. What is appointment fatigue?
Appointment fatigue refers to the mental and emotional exhaustion experienced from attending frequent medical appointments, particularly when managing chronic illnesses like chronic pain.

2. Is appointment fatigue common among chronic pain patients?
Yes. Many people with chronic conditions report feeling overwhelmed by the frequency and burden of medical visits, especially when results are minimal or progress is slow.

3. Can appointment fatigue lead to worse health outcomes?
Avoiding or skipping appointments can result in missed diagnoses, unmanaged symptoms, or complications, potentially worsening a patient’s condition over time.

4. How can I talk to my doctor about appointment fatigue?
Be honest and specific. Explain how the frequency of visits impacts your life and ask whether some appointments can be spaced out or handled differently, such as via telehealth.

5. Are there ways to manage my care with fewer appointments?
Yes. Coordinating care through a central provider, using digital symptom logs, and setting clear health goals can reduce the need for frequent appointments.

6. Should I feel guilty for needing a break from medical visits?
Absolutely not. Taking a step back to recover emotionally and mentally is valid and may ultimately improve your engagement and outcomes in the long term.

Conclusion

Appointment fatigue is a real and often overlooked side effect of managing chronic pain. It affects motivation, emotional well-being, and the overall healthcare journey. Understanding this phenomenon allows patients to take proactive steps toward regaining control, creating more meaningful medical interactions, and protecting their energy for healing. Empowerment begins when patients recognize they are not just their symptoms—they are people who deserve respect, rest, and choices in how they pursue wellness.

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12/12/2023
How Dare You Judge my Handicap Sticker
Having to go to appointments with my doctor here in Rhode Island, so we can again fill out the form for the state to confirm that I still qualify for a handicap sticker for me, causes a humiliating and heartbreaking feeling to have to be reminded that I have two incurable conditions. And yet, I have to get that signature to confirm that I am still dealing with this future.

And then, when I am not in a wheelchair, thus appearing normal, I also have to deal with those of you out there who feel so free to judge people like me, despite possessing no knowledge of conditions that require the need for this. So many jump to the conclusion that I probably do not deserve any special compensation.

So what has brought this judgment by others towards those of us with the handicap placard? It reminds me of the unpleasant memories back in elementary school where one classmate would do something stupid, the teacher would ask who was responsible, not one would rat on that person nor would the person give themselves up.

The result would be the entire class had to face the punishment. It always stuck with me that punishing the many for the sins of a few as being overly punitive and unfair, and here we are now as grown-ups still facing that type of attitude. Thanks to those few out there, that have abused a handicap placard, you have given the green light for other people to assume that if we look normal, then we must have no need for these limited privileges.

I think most of the abuse comes from individuals somehow obtaining a family member’s card and using it like their own. I agree that is wrong but it should not reflect on the legitimacy of those of us who need this capacity to park close to stores or businesses in which walking a significant distance presents an obstacle. It doesn’t delete the majority of us that truly need this ability to park close to be able to enter a store.

Also, some states make it much easier to abuse the placard. Talking with people from other states, I realize that each state has different requirements to obtain a handicap placard. For instance in California, all you need is a note from your doctor and when it expires, you just reapply.

So we clearly need to make the process of obtaining the placard more uniform across the country and also seriously consider two types – one that doesn’t expire for those of us with permanent incurable conditions and another type that would be a temporary situation for need. And both should require a visit to the doctor confirming either situation.

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So, let me share just a few stories of disabled people that have been approached with judgment and what they are facing daily with their conditions:
- A person living with Ehlers-Danlos Syndrome, a painful incurable connective tissue defect you are born with. This individual endured over twenty surgeries, many on the legs, to only be judged as they walked into a store, for the first time, instead of using the wheelchair they lived in for four years thanks to numerous surgical leg repairs and long hours of physical therapy. Instead of the joy of this hard earned accomplishment, this person was judged from using a placard by a person that didn’t see a wheelchair so therefore there must be no need for a sticker?
- An MS patient returning to their car, walking proudly but with tremendous strength and caution to then being reamed for taking the space away from a “real person” needing this help. Would someone like to walk in their shoes to the terror and horror this condition can cause to their lives and body?
- The cancer patient that comes to the car to a note on the windshield that they are being rude for taking up a space. This person is terminal, lost their hair and facing frequent chemo treatments leaving them weak. And someone else gets to judge their need instead of their doctor?
- Then there is the woman with Turner’s syndrome gets approached in a parking lot of a mall for “abusing her placard” – this woman faces daily issues with hearing loss, fatigue and the threat of an aortic dissection and then gets judged like this?
- Or how about a woman not able to walk far due to her medical issues that wrote to me: “Truly, I have put off getting my plaque because i don’t have the patience to be nice when a complete stranger comes up to me to berate me. And, i just don’t want that experience.” How sad is that that judgement being done by others is going far enough to prevent this person, who deserves this help, to not want to go through the process for fear of the possible judgement. You may say, why would she do that to herself, but trust me, when you live with a life altering disability, you don’t always have the determination and strength to keep fighting the injustices you face. It can take all the starch you have in your body to just get through your day.
- And just reported today, a young college woman, upon arriving to campus parking, was interrogated by a security guard. He asked her whether she was using a placard that “belonged to someone else, or it’s not your grandmother’s, right? And if I look up your information, I’m going to find YOUR name?” She responded “yes, it’s my placard. I have chronic illnesses” Walking away from this insult, she was almost late for class and on the verge of unnecessary stress overload. This young woman lives with a life in an out of a wheelchair, tubes, pump bags, copes with not only chronic pain and fatigue from CRPS, joint hypermobility syndrome, mitochondrial dysfunction and dysautonomia. And here that one day she was able to attend without the wheelchair, she had to face and be confronted by this cruel judgement!
Tips for Those that Tend to Judge Others:
- You should never judge a book by its cover, ever!
- Don’t approach someone with rude comments – you are most likely attacking the person that truly needs this card. It is threatening and emotionally hurtful. You have no idea what they have been through and am going to continue to go through. Believe me, you don’t dream of having this card hanging on your car to look cool!
- Just because someone doesn’t look handicapped, does not mean they are not dealing with a difficult condition. The words Invisible are used for a reason – you and I can’t see inside someone to truly understand what they are facing.
- Your lack of understanding makes you a discriminating person who needs to learn to have an open mind when it comes to people living with disabilities. Just because you can’t see what is wrong doesn’t mean it isn’t there.
- Do you realize all you do in life is being observed by your children or even grandchildren. We should be teaching our children to never judge others and be accepting of others, no matter their race, religion or disability! Where do you fit in?
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Tips for those that need to use a handicap sticker:
- Although it is terribly hurtful to be approach, try hard to be the bigger person and try to see if you can use this uncomfortable moment to educate them, although you owe them nothing.
- Consider putting a small list of some of the things you face with your condition on the windshield to be read while you are not there to educate them.
- Consider having in the car a small card about your condition you can hand to them and then walk away if talking is not in order
- Do not get into it with them and if need be, report them either to the store staff or even the police if you feel you are not safe.
- Remember, as much as it hurts and angers you, try to remember they are the people with problems – they are hurtful, discriminating and setting a terrible example of humanity and I bet you would rather deal with what you are facing then live in their shoes and be that person.
- If you get lucky with your health and no longer need the placard, then be the better person and return it to help keep the need appropriate and not abused!
The intent of this article is to inform and educate in an effort to attempt to begin a process of examining our collective attitudes toward the handicapped with the goal of increased public understanding of the challenges faced by the truly handicapped. You can’t judge a book by its cover. Many people live with invisible illnesses. Why not turn this around and believe what a person tells you, trust first, instead of jumping to judgment. With my condition Ehlers-Danlos syndrome, I can be walking a short distance one day and then be back to a wheelchair for some days, depending on sub luxing of the hips, tibia, and fibula. It is heartbreaking when things slip backward, and then to have to add your judgment too?

Let’s try to be kinder, more tolerant, and work towards becoming an understanding society.

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12/12/2023
If You’ve Ever Been Called Overly-Emotional Or Too Sensitive, This Is For You

Emotional: a word used often nowadays to insult someone for their sensitivity towards a multitude of things. If you cry happy tears, you’re emotional. If you express (even if it’s in a healthy way) that something is bothering you, you’re sensitive. If your hormones are in a funk and you just happen to be sad one day, you’re emotional AND sensitive.

Let me tell you something that goes against everything people have probably ever told you. Being emotional and being sensitive are very, very good things. It’s a gift. Your ability to empathize, sympathize and sensitize yourself to your own situation and to others’ situations is a true gift that many people don’t possess, therefore many people do not understand.

Never let someone’s negativity towards this gift of yours get you down. We are all guilty of bashing something that is unfamiliar to us: something that is different. But take pride in knowing God granted this special gift to you because He believes you will use it to make a difference someday, somehow.

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This gift of yours was meant to be utilized. It would not be a part of you if you were not meant to use it. Because of this gift, you will change someone’s life someday. You might be the only person that takes a little extra time to listen to someone’s struggle when the rest of the world turns their backs.

In a world where a six-figure income is a significant determinant in the career someone pursues, you might be one of the few who decides to donate your time for no income at all. You might be the first friend someone thinks to call when they get good news, simply because they know you will be happy for them. You might be an incredible mother who takes too much time to nurture and raise beautiful children who will one day change the world.

To feel everything with every single part of your being is a truly wonderful thing. You love harder. You smile bigger. You feel more. What a beautiful thing! Could you imagine being the opposite of these things? Insensitive and emotionless?? Both are unhealthy, both aren’t nearly as satisfying, and neither will get you anywhere worth going in life.

Imagine how much richer your life is because you love others so hard. It might mean more heartache, but the reward is always worth the risk. Imagine how much richer your life is because you are overly appreciative of the beauty a simple sunset brings. Imagine how much richer your life is because you can be moved to tears by the lessons of someone else’s story.

Embrace every part of who you are and be just that 100%. There will be people who criticize you for the size of your heart. Feel sorry for them. There are people who are dishonest. There are people who are manipulative. There are people who are downright malicious. And the one thing people say to put you down is “you feel too much.” Hmm.

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12/12/2023
Fibromyalgia Supplements | A Miracle Thyme Tea Reliefs Fibromyalgia and Chronic Fatigues

Thyme is an herb from the mint family. This is a truly ancient herb, used by the Egyptians, Greeks, and Romans for ceremonial and ritualistic purposes. Through the Middle Ages where it was also used for religious and medicinal reasons. It is an incredibly potent yet simple herb affecting multiple systems in the body and capable of treating dozens of diseases. It contains one of the strongest antioxidants known and is proven to kill 98% of breast cancer cells.

Thyme contains thymol which is a natural antiseptic, antibacterial, and an expectorant, making this tea with honey and lemon a delicious remedy for all of you suffering from sore throats and coughs.

Wild thyme tea is recommended for cough, hangover, flu, and sore throat. Thyme has primarily been used for respiratory ailments for its infection-fighting and cough suppressive qualities. Thyme honey is ideal for sweetening herb teas. Blend thyme with nettle for allergies and mints for colds and congestion. It is also help’s if you have fibromyalgia, rheumatoid arthritis, lupus & multiple sclerosis.

Thyme Tea Recipe

Ingredients:

-1c Boiling Water
-1tbs dry or 1T fresh Thyme
-1tbs dry or 1T fresh sage
-1-1 Ginger slices
-Honey to taste

Directions:
-Warm your teacup with hot water.
-Pour away the water.
-Put herbs in the cup. Add fresh boiling water and cover.
-Leave to steep 3 to 5 minutes. Add more herbs for a stronger flavor.
-Steeping too long will make the tea bitter. Use Honey or a natural herbal sweetener like Stevia.
-Add ginger slices and/or lemon slices if desired.

Other Health Benefits Of Thyme

-Lower Blood Pressure
-Boost your Immunity
-Boost your Mood
-Improves bone health
-Antioxidant Capacity
-Immune System
-Anti-fungal Ability

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11/16/2023
CFS | Light and Noise Sensitivity in Chronic Fatigue Syndrome
Light and noise sensitivity in fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) have been scientifically established since the early 1990s, but they’re still underrecognized and rarely make symptoms lists. Rest assured that you’re not alone in experiencing this symptom!

When I used to take my kids to daycare, some mornings the noise would hit me like a brick wall. In an instant, I’d have pain, nausea, dizziness, trembling, and a looming panic attack.

More than once, I had to call in sick as a result of it. I’ve had similar experiences with bright or flashing lights, or with visual chaos in general.

Causes

We don’t know the causes of light and noise sensitivity, but they’re often called “generalized hypervigilance.” That means our bodies are constantly on high alert. It’s also a symptom of post-traumatic stress disorder.

Hypervigilance is beneficial for people in potentially dangerous situations, such as soldiers or police officers, because it speeds up to several processes and helps with crisis response.

In FMS and ME/CFS, however, hypervigilance overwhelms us. We don’t know why, but possibilities include:
- Nervous system abnormalities
- Stress-system (HPA axis) problems
- Neurotransmitter dysregulation
- Blood pressure irregularities
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Symptoms of Generalized Hypervigilance

Common symptoms of hypervigilance include:
- Anxiety
- Rapid heartbeat
- Trembling
- Rapid or labored breathing
- Sweating
- Irritability
- Fatigue
- Sleep disturbances
Treatments

So far, we don’t have research showing that specific treatments alleviate light and noise sensitivity in FMS and ME/CFS.

In people with PTSD, treatment for the anxiety related to generalized hypervigilance can include mental-health counseling and medications, especially antidepressants.

Supplements for anxiety and stress may help you cope better with light and noise sensitivity as well. Some people also benefit from treatments such as massage or acupuncture.

Coping

Light and noise sensitivity can have a huge impact on your life. You may avoid certain situations and even fear them, which increases anxiety. It can also contribute to social isolation, which is common in people with FMS or ME/CFS and can worsen depression.

Some work environments are difficult to endure. I used to be a television news producer, which meant sitting under a lighting grid in a room with dozens of TVs and ringing phones. I went from thriving in the chaos to having regular anxiety attacks. I decided to leave the job. Other people may be able to get reasonable accommodation to lessen the impact of this symptom.

You might be able to eliminate or avoid many sources of excess noise and light, but you probably can’t eliminate all of them. Several simple things can help you deal with light and noise sensitivity in your daily life:
- Sunglasses are a must outside.
- If fluorescent lights bother you, lightly tinted sunglasses or a hat with a brim may help.
- In a noisy environment, earplugs or listening to music on headphones may help some people.
- Deep breathing and other relaxation techniques can help you get through episodes of sensory overload due to light and noise.
- Teach your family and friends about the impact that light and noise have on you so they understand your requests to turn off lights or turn down the volume.
- If your computer screen bothers you, try adjusting the brightness and contrast.
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11/15/2023
Researchers Find Main Source Of Pain In Blood Vessels

Are you experiencing constant muscle pain and fatigue? There is a good chance that you are suffering from fibromyalgia. As many as 5 million Americans that are aged 18 or older are affected by it. Women are the primary targets of this chronic disease, affecting up to 90% of them, and it’s very hard to treat.

For many years, research has pointed to this pain and fatigue just being “in the patient’s head.” It’s been characterized as a psychosomatic disorder, which means that it’s caused by mental factors that attribute to a person’s imagination.

Many people complain about pain in their neck, shoulders, back, and legs. But no research has been able to pinpoint what is causing this pain. Until now! Recent research has finally determined that this pain is in fact not just an imagination, but actually caused by a sensory nerve in blood vessels found in the palms!

Scientists at Integrated Tissue Dynamics were responsible for the study. They found that the fibres that were supposed to be only responsible for the blood flow in the skin are also responsible for sensing touch and pain.

In order to be sure about their findings, the team conducted a second study to see if they could locate any pathology in the blood vessels that could also contribute. After analyzing skin samples they collected from women who suffered from fibromyalgia, they discovered that there was a large increase in sensory fibres at certain sites within blood vessels of the skin.

These nerves are part of the arteriole-venule shunts, which are responsible for heat regulation in our body by controlling the blood flow in our blood vessels. In warm conditions, the shunts shut down which forces blood into the skin surface so it can be released.

In cold conditions, the shunts open up and allow the veins to conserve heat, thus our hands and feet become cold.

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The lead scientist on the study, Dr. Albrecht, explains that this excess sensory innovation may be because of painful hands that fibromyalgia patients experience.

“Since the sensory fibres are responsible for opening the shunts, they would become particularly active during cold conditions, which are very bothersome times for fibromyalgia patients.”

The research team also came to another conclusion; they explain that our hands and feet usually contain more blood than they needed, so they’re used as reservoirs for blood which can be delivered throughout the body. Because of the pathology that occurs in these shuts, the blood flow is usually mismanaged.

President of Integrated Tissue Dynamics, Dr. Rice, elaborated on their findings, “The pathology discovered among these shunts in the hands could be interfering with blood flow to the muscles throughout the body. This mismanaged blood flow could be the root cause of muscle pain and achiness and the sense of fatigue that fibromyalgia patients experience.”

These findings are a step in the right direction for those suffering from fibromyalgia; it offers a proper treatment instead of the usual painkillers and antidepressants.

So if you’re suffering from fibromyalgia, or know someone that is, it’s good to finally know that you’re not crazy, and you can certainly be sure that fibromyalgia is real!

Causes of Fibromyalgia: Doctors are not completely sure of what actually causes a person to get fibromyalgia, a variety of factors may work together.

Genetics: In most cases, fibromyalgia runs in the family, so there could be a certain genetic mutation that can cause you to be more susceptible to the disorder.

Infections: Certain illnesses have the ability to trigger fibromyalgia.

Physical or Emotional Trauma: Fibromyalgia can sometimes be triggered by physical trauma, like a severe car accident. Psychological stress can also be a triggering factor as well.

Just because there is a new breakthrough that has discovered what might cause the pain for fibromyalgia patients, doesn’t mean that they should stop doing certain things that keep it from acting up. You need to continue taking care of yourself and layout a program that helps with that.

You should first try and reduce the amount of stress in your life. This could mean putting some time aside to just relax. Getting enough sleep is another key point. Since fatigue is one of the main characteristics, getting enough sleep is essential. Also, you should try and exercise regularly. It may hurt at first but it will eventually reduce the pain significantly.

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10/31/2023
Wearable Tech Emerging For Chronic Pain Relief

The opioid crisis has revealed another real ongoing problem: a lot of people have chronic pain. For example, Lady Gaga recently revealed that she suffers from fibromyalgia, a chronic pain condition that the Centers for Disease Control and Prevention (CDC) says afflicts 4 million people (or 2% of the adult population). This number may actually be an underestimate because determining the real number of people that have fibromyalgia can be a pain.

Fibromyalgia is frequently underdiagnosed or misdiagnosed. Many people, including doctors, are not fully aware of the condition. People may try to maintain a “Poker Face” when afflicted with the symptoms of fibromyalgia, such as pain and stiffness throughout their body, fatigue, depression, anxiety, difficulties sleeping, memory problems, and headaches. Or they may attribute the symptoms to something else. Also, until the FM/a Test was approved by the U.S. Federal Drug Administration (FDA) in 2012, no simple test for fibromyalgia was available.

The Netflix documentary ‘Gaga: Five Foot Two‘ revealed Lady Gag’s struggles with fibromyalgia. Here Lady Gaga is pictured during the premiere during the film’s premiere at the 2017 Toronto International Film Festival.

While fibromyalgia is certainly not the only reason someone may be started on opioids, a publication in the Journal of Clinical Rheumatology discussed how fibromyalgia has contributed to the increase in opioid medication prescriptions since 2004. Opioid medications, if you haven’t heard, can be quite addictive and lead to the use of other drugs like heroin. Therefore, there is an urgent need for more alternatives to opioid medications to help manage chronic pain.

Enter the wearable movement. While some wearables may seem unnecessary (e.g., the No More Woof headset supposedly translates dog barks into English so that you can know when your dog is saying “what an idiot”), wearable technology for pain relief is an intriguing emerging area.

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It may sound a bit like a late-night infomercial or something from a mystical healer: wear this band around your leg to decrease the pain throughout your whole body. But there is real scientific reasoning behind devices such as NeuroMetrix’s Quell that received U.S. Food and Drug Administration approval for over-the-counter use in July 2014.

The Quell device is a band that looks a bit like a blood pressure cuff that you wear around your upper calf. The device does not utilize any medications but instead generates electric signals that stimulate your body to produce naturally occurring substances (endogenous opioids) that can then inhibit nerve signals that lead to feeling pain. In other words, the device helps activate your body’s natural system for regulating pain.

Shai N. Gozani, M.D., Ph.D., Founder and CEO of NeuroMetrix, Inc. explained that “fibromyalgia is believed to result from problems with the central nervous system. There is no injury per se in the peripheral nerves. The balance between positive and negative signals regulating the pain neurons may be off. The nerve signals that inhibit pain signals may be decreased. The Quell device can help boost this part of the system.”

Of course, you don’t just put on the band and presto your pain disappears. As Dr. Gozani related, you typically have to wear the device for a week or two before noticing the reduction in pain. Typically, people will wear the band for 6 to 8 hours a day. The device periodically cycles on and off and can also collect information on your activity and pain levels to help you adjust the device and manage your pain. The device offers the option of tapping into the Quell Health Cloud, which stores data on the usage, sleep, pain levels, and activity for many different users and thus can provide analysis that can in turn help with pain management.

Neurometrix reported that Quell contributed $3.0M out of NeuroMetrix’s $4.3M in revenue in the second quarter of 2017 and that they shipped their 100,000th Quell device in July 2017. Quell device shipments in the second quarter of this year were almost ten times what they were in the second quarter two years prior.

There are certainly many advantages of replacing medications with wearables. For example, addiction is less of an issue (e.g., wearing many bands all over your body probably won’t help). Finding and using ways to stimulate and modulate your body’s pain regulating mechanisms is certainly not a new approach to pain control. This is the basis of transcutaneous electrical nerve stimulation (TENS) and some physical therapy and alternative medicine approaches such as needling.

But developing wearables so that you can go about your daily activities while receiving non-medication pain treatments is new and opens up a whole new avenue of potential ways to manage pain. Furthermore, having such devices interface with digital platforms could help better track pain management, combine treatments, generate data to provide scientific insights, and interface with other types of wearables. Who knows, someday maybe your dog can help you more with your pain management.

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10/29/2023
Tom Petty’s Cause of Death: Accidental Overdose Medication Opioid Chronic Pain

After months of speculation, a medical examiner has ruled that Tom Petty died of an accidental overdose, according to a statement from the Los Angeles County Medical Examiner. The Hall of Fame musician had taken several pain medications, including Fentanyl, oxycodone, and generic Xanax. Other medications included generic Restoril (a sleep aid) and generic Celexa (which treats depression).

The Heartbreakers, Bruce Springsteen, Stevie Nicks, and more pay tribute to a genius craftsman who never stopped believing in the power of rock & roll

The coroner’s office listed Petty’s official cause of death as “multisystem organ failure due to resuscitated cardiopulmonary arrest due to mixed drug toxicity,” noting the singer suffered from coronary artery atherosclerosis and emphysema.

Petty had been prescribed the drugs to treat emphysema, knee issues, and a fractured hip, his family said in a statement accompanying the results. Petty’s coronary artery disease had been a persistent problem throughout his final tour.

“Despite this painful injury, he insisted on keeping his commitment to his fans and he toured for 53 dates with a fractured hip and, as he did, it worsened to a more serious injury,” Petty’s wife Dana and daughter Adria wrote in the statement. “On the day he died, he was informed his hip had graduated to a full-on break and it is our feeling that the pain was simply unbearable and was the cause for his overuse of medication.”

Petty was found unconscious and not breathing at his Malibu home on October 2nd. He was rushed to a hospital where he was placed on life support. Although he had a pulse, doctors found no brain activity when he arrived and the decision was made to pull life support. He died hours later.

The singer had recently completed a 40th-anniversary tour with his band, the Heartbreakers. It was intended to be his “last trip around the country,” though he told Rolling Stone he wasn’t going to stop playing. “I need something to do, or I tend to be a nuisance around the house,” he said.

Petty said he’d experimented with cocaine over the years (“[It] was never a good look,” he told Men’s Journal) and drinking (“I didn’t like the taste or the buzz,” he said). But it was in the late Nineties, when he was in his late 40s and two decades after he’d become a superstar, that he developed an addiction to heroin after a bitter divorce from his first wife. “Tried to go cold turkey, and that wouldn’t work,” he said in author Warren Zanes’ book Petty: The Biography. “It’s an ugly fucking thing.” He sought out treatment for his addiction and remarried in 2001.

“Using heroin went against my grain,” Petty said in the book. “I didn’t want to be enslaved to anything. So I was always trying to figure out how to do less, and then that wouldn’t work. Tried to go cold turkey, and that wouldn’t work. It’s an ugly fucking thing.”

Since his death, several artists have paid tribute to Petty onstage. Country artist Jason Aldean dedicated some of his time as the musical guest on Saturday Night Live to sing “I Won’t Back Down.” Bob Dylan performed Petty’s “Learning to Fly” at a concert in Broomfield, Colorado. And Dave Matthews, Emmylou Harris, and others sang “Refugee” at a benefit show in Seattle. Petty’s Greatest Hits album subsequently made it to the Number Two spot on the Billboard chart after his death.

He was laid to rest on October 16th at a private service in Pacific Palisades, California.

Petty’s family said they hope the musician’s death leads to a broader understanding of the opioid crisis. “As a family, we recognize this report may spark a further discussion on the opioid crisis and we feel that it is a healthy and necessary discussion and we hope in some way this report can save lives,” they wrote. “Many people who overdose begin with a legitimate injury or simply do not understand the potency and deadly nature of these medications.”

Full Statement from Dana and Adria Petty

Our family sat together this morning with the medical examiner – coroner’s office and we were informed of their final analysis that Tom Petty passed away due to an accidental drug overdose as a result of taking a variety of medications.

Unfortunately, Tom’s body suffered from many serious ailments including emphysema, knee problems, and most significantly a fractured hip.

Despite this painful injury he insisted on keeping his commitment to his fans and he toured for 53 dates with a fractured hip and, as he did, it worsened to a more serious injury.

On the day he died he was informed his hip had graduated to a full-on break and it is our feeling that the pain was simply unbearable and was the cause for his overuse of medication.

We knew before the report was shared with us that he was prescribed various pain medications for a multitude of issues including fentanyl patches and we feel confident that this was, as the coroner found, an unfortunate accident.

As a family, we recognize this report may spark a further discussion on the opioid crisis and we feel that it is a healthy and necessary discussion and we hope in some way this report can save lives. Many people who overdose begin with a legitimate injury or simply do not understand the potency and deadly nature of these medications.

On a positive note we now know for certain he went painlessly and beautifully exhausted after doing what he loved the most, for one last time, performing live with his unmatchable rock band for his loyal fans on the biggest tour of his 40 plus year career. He was extremely proud of that achievement in the days before he passed.

We continue to mourn with you and marvel at Tom Petty and the Heartbreaker’s incredible positive impact on music and the world. And we thank you all for your love and support over the last months.

Thank you also for respecting the memory of a man who was truly great during his time on this planet both publicly and privately.

We would be grateful if you could respect the privacy of the entire Heartbreaker family during this difficult time.

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10/23/2023
BLUE BADGE PARKING PERMITS TO BE ROLLED OUT TO PEOPLE WITH HIDDEN DISABILITIES, GOVERNMENT PROPOSES

People with hidden disabilities could soon be entitled to blue badge parking permits under Department for Transport (DfT) plans. The Government said the proposals would make it easier for people with conditions such as dementia, Fibromyalgia, Lupus, and autism to travel to work, socialize, and access shops and services.

It is hoped the move – which would be the biggest change to the blue badge scheme since it was introduced in 1970 – would help create parity in the treatment of physical and mental health.

The DfT said councils have different interpretations of existing rules with only some recognizing hidden disabilities.

The new policy is designed to provide “clear and consistent” guidelines. Around 2.4 million disabled people in England have a blue badge.

This enables them to park free of charge in pay and display bays and for up to three hours on yellow lines, while in London they exempt holders from having to pay the congestion charge.

Around three out of four blue badge holders say they would go out less often if they did not have one, according to the DfT.

Transport minister Jesse Norman said: “Blue badges give people with disabilities the freedom to get jobs, see friends or go to the shops with as much ease as possible.

“We want to try to extend this to people with invisible disabilities, so they can enjoy the freedom to get out and about, where and when they want.”

The changes being put to an eight-week public consultation also include blue badge assessments being carried out by a greater variety of healthcare professionals who can spot if mental health is causing mobility issues.

Sarah Lambert, head of policy at the National Autistic Society, welcomed the proposal and said amending parking permit access could be “a lifeline” for many autistic people, who often do not qualify under current regulations.

Autistic people can suffer anxiety from not being able to park in a predictable place close to their destination, and some can “experience too much information” from the environment around them on public transport, Ms. Lambert said.

“We hope the Government will make this important change and we look forward to working with them to make sure that autistic people and their families benefit.”

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10/22/2023
Chronic Pain Patient Abandoned by Doctor Dies

This will be the first Christmas that Tammi Hale spends without her husband Doug in over 30 years.

The 53-year old Vermont man, who suffered chronic pain from interstitial cystitis, committed suicide in October after his doctor abruptly cut him off from opioid pain medication.

“His primary care provider kept trying to wean him off his opioid therapy, which worked at higher doses,” says Tammi. “My husband ran out (of medication) early a few times, so the doctor cut him off completely one day. Six weeks later he took his life as no medical establishment would treat his chronic pain.”

We’re telling Doug Hale’s story, as we have those of other pain patients who’ve committed suicide because their deaths have been ignored or lost in the public debate over the nation’s so-called opioid epidemic. Patients who were safely taking high doses of opioids for years are suddenly being cut off or tapered to lower doses. Some are being abandoned by their doctors.

“I believe it will get worse with time. The docs are simply more interested in not risking their licenses than in treating chronic pain,” Tammi wrote to Pain News Network in a series of emails about her husband’s death.

Depression and suicidal thoughts are common for many people living with chronic pain and illness. According to a recent survey of over a thousand pain patients, nearly half have contemplated suicide.

But the problem appears to have grown worse as physicians comply with the “voluntary” prescribing guidelines released in March by the Centers for Disease Control and Prevention, which have been adopted as law in several states. Many doctors now fear prosecution and loss of their medical licenses if they overprescribe opioids. Some have chosen not to prescribe them at all.

While federal and state authorities track the number of drug overdose deaths, no one seems to be following the number of patients who are dying by suicide or from cascading medical problems caused by untreated chronic pain. Some in the pain community call this “passive genocide.” Tammi Hale compares it to the Holocaust.

“The Nazis eliminated the sick and the weak first, right? Makes you wonder,” she says. “I realize my comments are harsh, but I believe the public needs to be aware of the dangers any one of us could be facing with this silent epidemic.”

Doctor Insisted on Weaning

Doug Hale began facing a life with intractable chronic pain in 1999 after a surgery left him with interstitial cystitis, a painful inflammation of the bladder. According to his wife, Doug tried physical therapy, antidepressants, epidurals, nerve blocks, TENS, cognitive behavioral therapy, and several different medications before finally turning to opioids for pain relief. High doses of methadone and oxycodone for breakthrough pain were found to be effective.

But a few years ago, Doug’s primary care provider (PCP) started urging him to wean to a lower dose.

“The PCP insisted on weaning. Although Doug clearly had documented malabsorption issues, the PCP persisted on weaning. The pressure to wean was unbelievable,” says Tammi.

“It came to a head in May of 2016. The PCP gave Doug one month to wean completely from 120mg/day of methadone and 20 mg/day of oxy. We knew this was impossible.”

Tammi says Doug checked himself into a 7-day detox program, where he was weaned to 40 mg of methadone a day. The doctor agreed to prescribe that amount, but it was not enough to relieve Doug’s pain. He started taking extra doses.

“He ran out a week early in late August. The PCP abandoned Doug, stating ‘I’m not going to risk my license for you. The methadone clinic can deal with you.’”

But the methadone clinic refused to treat Doug because they saw him as a chronic pain patient, not as an addict. “Had he turned to street drugs they could have treated him, but because he didn’t break the rules they couldn’t help,” Tammi explained.

Doug tried to detox at home, which Tammi calls a “brutal” experience. On October 10th, after being turned down by other healthcare providers, Doug went to his former doctor one last time to beg for help and was refused. The doctor said again that he didn’t want to risk his license.

“Doug left the office still thrashing in pain and despondent,” Tammi recalls. “The next day, my dear, sweet thoughtful husband of 32 years; a father, son, brother, uncle, and friend, well-loved by many, dragged a chair to a remote spot in our back yard. A spot we could not see from the house, the road, or by the neighbors.

“He shot himself in the head to escape his pain. He made sure we could still live in our home and not be plagued by gruesome memories. I just wish the medical establishment had an ounce of the compassion that he did.”

“Can’t take the chronic pain anymore. No one except my wife has helped me. The doctors are mostly puppets trying to lower expenses.”— Doug Hale

“Can’t take the chronic pain anymore. No one except my wife has helped me,” Doug wrote in a suicide note. “The doctors are mostly puppets trying to lower expenses, and (do not accept) any responsibility. Besides people will die and doctors have seen it all. So why help me.”

Tammi says she has been comforted by an outpouring of love and support from her family, friends, and community. Doug’s suicide surprised many.

“Doug did make vague references about suicide during the summer due to the desperation and pain. He was just such a tough guy, he survived so much that my reaction, and others after the fact, was no. Not Doug. He’s like the bionic man. Too much of a warrior to give up,” said Tammi.

“At his memorial, so many people commented on what an inspiration he was to them. To graciously bear the path of pain and his never-give-up attitude made them reevaluate their own daily issues. I guess you could say his legacy was love and to never quit.”

Tammi consulted with a medical malpractice attorney after Doug’s death, who told her the chances of winning a lawsuit against the doctor were slim. The cost of legal action would have also been prohibitive, after so many years of dealing with Doug’s medical expenses.

Tammi and Doug may never get their day in court, but she is determined to share his story in the hope that patients, doctors, and regulators learn from it.

“My promise to him was to share with others. He was thrown away like a piece of trash, but his life and the life of all humans are precious. All patients deserve to be treated respectfully,” she wrote. “Hopefully some changes will come in time before the holocaust grows too much larger.”

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10/19/2023