Chronic pain is increasingly rampant today. However, chronic pain and chronic diseases are often invisible. In many cases, there are no plasters, visible rashes, or nasal discharge involved. Those who suffer from chronic pain often appear “normal”, perhaps a little more fragile or sad than average. I suffered from chronic headaches for four and a half years and chronic hip pain for two and a half years. He often seemed depressed, disinterested and angry, when I was simply in pain. There were many days that I could not get out of bed. After a conversation, it became difficult at times. I lost a job because of my pain. I canceled plans and ignored friends. I felt misunderstood and alone. I was suffering. I know the answer was there and finally, I cured myself. However, at the moment I wanted to scream from the top of my lungs all the things that all chronic pain sufferers want me to know: 1. Just because you can not see it, does not mean that I am not in pain. 2. It’s not all in my head. 3. It’s not just the flu. It will not disappear in a week. 4. Please, never say, “Just do not think about it.” Being in constant pain is impossible. 5. Hugs can do magic. So they are good messages. I need to know you’re here for me. 6. Thank you for sharing the “magic cure” you have read online. Trust me, I’ve heard about it, and if it was relevant, I’ve tried it.
7. I am trying very hard to live a normal life. 8. I try my damned best not to cancel plans and never cancel plans if I had a choice. 9. I can not get out of it. 10. Some days are better, some days are worse. Some days I can even feel close to normal, other days I can not even get out of bed. 11. I worry about you. I want to know about your life and dreams. I want you to be happy and healthy. 12. My chronic pain is different from other people’s chronic pain. All diseases and pain symptoms are unique. Our experiences may differ, but we are all in pain and can relate to each other. 13. Please do not try to convince me to drink and “live a little”. All I want is to live a little, in fact, live a lot. A drink, however, is the last thing on my mind. 14. If I look depressed or bored, it means that I am really in tremendous pain and doing everything possible to look happy and normal. 15. I can not explain how chronic pain feels. However, I can not say, “You will know once you have it” because I would never want someone to feel so much suffering. 16. I need a lot of sleep. But sleep can be difficult with so much pain and often it still leaves me exhausted. 17. Just because I have chronic pain does not mean that I know how to handle it or live with it. 18. Sometimes I feel like I’m in a prison, living someone else’s life. 19. I still have interests, passions, goals, and dreams. 20. I do not want you to forget me. I do not want you to give up on me. 21. I have not given up on healing yet. Deep down I know there is (or will be) an answer out there.
Everyone has had a tough morning, there’s no question about that. Sometimes, it’s difficult to get out of bed. Occasionally, we all toss and turn and don’t get a refreshing rest. We wake up exhausted, grumpy, and feeling generally awful.
Now imagine waking up every morning feeling like you didn’t sleep even though you know you got your eight hours of sleep. You feel like absolute garbage, but if you’re like me, you work two jobs that are both very physically demanding. There aren’t enough coffees or energy drinks to make you feel like you’re actually awake.
This exhaustion is one you feel throughout your whole body, and you simply can’t shake it. Your muscles ache, occasionally you wake up with a headache that nags all day, and the pain meds simply won’t make it go away, and if they do work, it isn’t for long. The headache comes back, tenfold. But, you have to keep on pushing through. You have a job to do so you can continue to take care of yourself.
Sometimes, people will tell you, “You’re always tired!” which isn’t something you want or need to hear. You’re aware you’re always tired. But, it’s a part of your life with fibro. If you went out the night before because you were having a good day with your symptoms in check, that makes the exhaustion worse.
People will recommend supplements and other forms of treatment to help you rest, but it feels like you have tried it all. There isn’t enough sleep in the world to share this type of tiredness. I know for me, when I take melatonin supplements, they only make me feel worse in the morning. If I’ve taken melatonin for sleep, the next day I know I’m going to have to push harder to get through my day.
Mornings with fibro are rough. My body is constantly fighting this pain that won’t ease up. The pain can be incredibly consuming, and the pain owns my mornings. It takes me longer to get ready in the morning because not only am I waking up feeling like I just ran a marathon, but I’m fighting the brain fog, the pain, and the horrible overall fatigue.
Sometimes I’ll take a nap, but that doesn’t do much besides make me feel worse than I did when I got off work or left the gym. Most mornings, breakfast consists of some fruit and oatmeal, because I’m too fatigued to stand over a stove to make a full breakfast. Other mornings, I might be able to stick a frozen breakfast sandwich in the microwave and take it to go because getting ready took a little extra time and I can’t sit to have my oatmeal.
Mornings with fibro have taught me a lot about managing my time and keeping a set pace. I have learned (and am still learning) to ask for help when I need to, to slow down when I need to, and to never overdo anything. Mornings mean pain for me most days.
Mornings mean exhaustion that simply won’t leave, exhaustion that lingers in the background no matter what I do or where I am. But, mornings also mean a new day to continue to fight for myself and for people like me. Mornings might be tough with fibro, but I am stronger than fibromyalgia and bigger than fatigue.
Anger is a very common emotion, particularly for people suffering from fibromyalgia. It is a natural, human reaction and yet it doesn’t get an awful lot of attention as a side effect to chronic pain.
It’s one thing to accept our anger, but it’s another to let that anger consume us and let it impact our lives and the lives of others. It can be difficult to draw that line when you feel enraged by what you have lost and what has emerged in its place; you’ve been given a life that you didn’t plan and wouldn’t choose.
But, there are things you can do to keep your anger at bay and prevent it from encroaching on your life.
A friend of mine once told me I was the angriest person he knew. It became a bit of a running joke – we would meet up for drinks and before long I was ranting and he was mocking my anger. It was just the way it was.
A year later I was talking to a psychiatrist after yet another unsuccessful referral following a fibro flare–up, and I told him about my anger. He asked me to give him some examples of what made me angry.
As I went through the list he quietly listened, then asked: “What makes you think this is anger? You sound like an intelligent girl who’s ranting about the things that are important to her. What’s wrong with that?”
I suddenly felt like a weight had been lifted off my shoulders. I wasn’t weird and angry, I was normal and healthy. I’m sharing this story because there is a big difference between feeling angry and being an angry person. Don’t let the label consume you; recognize that you’re allowed a good rant from time to time. It’s necessary.
This might seem quite simple at first, but I think it’s important to get a good understanding of what makes you angry in the first place so that you can look at ways to control or avoid it in the future.
I’m not a doctor, but experience has taught me that there are often small triggers that can cause you to feel more angry than usual, and identifying these triggers can be a key step to overcoming negative emotions.
You can start by making notes or lists whenever you feel your anger developing, which will help you find patterns in your behavior. For example, you might think your anger stems from something broad, like having fibromyalgia, but as you start to take notes you will start to see the smaller triggers.
Perhaps it’s the patronizing way your partner talks to you when what you really need is strength and support, or perhaps it’s the fact telemarketers call you three times a day and you just can’t cope with another phone call. These small occurrences are part of a bigger issue, but they’re still a valid contributor to the anger you feel.
I’m a firm believer that if you don’t like something the way it is, you should make a change. Obviously, this has restrictions; I don’t like the fact I have fibromyalgia but I can’t change it. However, what I can change is the way I think about it and the way I choose to cope with it.
Having made notes and identified the things that trigger your anger, it’s time to start finding ways to address and avoid it. Taking the examples from above, if your partner’s behavior is causing your anger then you should tell them how you prefer to feel supported.
Taking control over your triggers can be a way of reducing the amount of anger you feel or the frequency with which you feel it.
As a person who is prone to ranting and raving, I don’t find it easy to connect to my inner calm. However, I know that it’s an essential coping strategy for fibromyalgia patients because it doesn’t just ease anger; it eases anxiety and depression and often reduces the frequency of flare-ups too.
The trick here is to make sure you find YOUR inner calm, not the calm that works for someone else. Annoyingly, this takes time and it means you have to put in some work, but it’s totally worth it. I spent a long time thinking that my inner calm could be found at the back of a meditation class or in the depths of a yoga retreat.
After three yoga classes and two attempts at meditation, I realized they were frustratingly slow and making me angry. Oh, the irony! I am sarcastic and impatient so meditation – try as I might – was just not for me. Some find their calm in a bath with relaxing candles, but I’m really more a shower girl so that didn’t work for me either.
It takes time to work out where to find your inner calm, but it’s a journey well worth taking because when you start to recognize the signs of anger you need to know there is somewhere you can go.
This is yet another common coping strategy for fibromyalgia sufferers in general, but it’s really important when it comes to managing your anger.
Often, when we get angry, we shout and become aggressive and intimidating. People stop listening to the words and just see the rage, so you need to make sure that you explain what makes you angry and what you’re doing to overcome it. This could be as easy as talking to your family, but if you really struggle to control your emotions then it may be helpful for you to seek professional help.
This could mean talking to your doctor or attending anger management classes, but there are also a number of mental health support groups and online forums that might give you the outlet you need to talk about your anger.
The important thing is to address your anger. Don’t push it away; the rage monster will lurk in the background and come back twice as angry.
“Widespread” means that it is all over the body. However, many people with fibromyalgia feel their pain in specific areas of their body, such as the lower back, neck, and shoulders.
“Tenderness” means that even a small amount of pressure can cause a lot of pain.
FMS affects more than 5 million people in the United States. That’s nearly 1 in every 60 Americans. Around 80-90% of those affected with FMS are women. These women are primarily between the ages of 35 and 55.
Research has shown that disordered sleep is a very prominent symptom in patients who have FMS. Around 75% of patients with FMS complain about their sleep. Studies show that treatment of sleep disturbances has had a positive effect on their FMS pain and symptoms during the day.
Even though sleep recording is not part of the routine evaluation, polysomnography may disclose primary sleep disorders in patients with FMS including insomnia, obstructive sleep apnea, and restless leg syndrome.
Insomnia is defined as the inability to get enough sleep to feel rested. Lack of sleep produces more pain and increased pain contributes to lack of sleep. FMS pain can make it difficult to go to sleep at night, cause frequent awakenings from sleep during the night, or make a person wake earlier than planned without being able to return to sleep. In this regard, the pain has both an effect on the quantity of sleep as well as the quality.
People experiencing pain are also much more sensitive to stress, which is another major perpetrator of sleep loss.
People in pain are also more likely to worry about getting enough sleep. They feel like they have less control over the amount and quality of sleep they get each night.
Sleep apnea is a potentially deadly sleep disorder in which breathing repeatedly stops and starts.
The incidence of sleep apnea in FMS patients was found to be 61% in men and 32% in women, according to a 2013 study published in Clinical and Experimental Rheumatology. A particular variant of sleep apnea called upper airway resistance syndrome is very common in women with fibromyalgia. Treating sleep-disordered breathing improves both pain and fatigue in fibromyalgia patients.
Restless leg syndrome is a neurological disorder characterized by throbbing, pulling, creeping, or other unpleasant sensations in the legs and an uncontrollable, and sometimes overwhelming, urge to move them.
The incidence of restless leg syndrome has been found to be in excess of 50% of those with FMS, as opposed to 7% of the general population. FMS patients experience improvement in their symptoms of fatigue and sleepiness when restless leg syndrome is treated.
If you believe that you may be suffering from FMS and have sleep-related issues, discuss your symptoms with your primary care provider or contact a sleep clinic for a sleep study.
At the Alaska Sleep Clinic, we help diagnose and treat hundreds of Alaskans every year with sleep disorders. Regular, quality sleep is one of the most important aspects of leading a healthy and happy life. Having an untreated sleep disorder such as insomnia, restless leg syndrome, or sleep apnea can not only hamper the quality of your daily life, it can worsen your FMS pain over time.
If you live in Alaska and want to receive a free sleep assessment from one of our certified sleep educators, click the link below and get on your way to sleeping restfully through the night.
When the two disorders meet in one person, life can become very difficult and painful. While there are treatments for both disorders, understanding their differences is important in helping you make sure that the source of your pain is diagnosed correctly as the treatments for each are radically different.
Regional Sympathetic Dystrophy Syndrome is a very rare disorder of the sympathetic nervous system. The symptom cluster for RSDS includes joint pain, nerve pain, muscle stiffness, difficulty sleeping, disorientation, changes in hair and nail growth, and discoloration of skin in patches.
It is also known as Complex Regional Pain Syndrome. There is no known cause for RSDS, although there is a recognized genetic component that has just been discovered. The treatment for RSDS included medication, painmanagement, nerve blocks, and disruptive surgery to kill nerves in a specific region of the body.
Anyone can develop RSDS, although it is more common in those who have had a family member who has had the disorder as well. It is thought that severe physical trauma and traumatic brain injury can also raise your risk of developing the syndrome. There is some slight evidence that those with fibromyalgia also may be at risk for developing the syndrome as well.
Fibromyalgia is a chronic disorder that is characterized by a cluster of symptoms that are most recognizable by the presence of pervasive muscle and joint pain, plus muscle stiffness.
Other symptoms may include sleep disturbances, IBS, depression, recurrent yeast infections, chronic cold and flu susceptibility, and cervical stenosis. It is a progressive disorder, but not a terminal disease.
It can develop any time after the age of 18, although there are some cases where children have developed fibromyalgia. It can occur in both men and women, although it is more frequently diagnosed in women. Symptoms are lifelong but tend to abate after menopause.
Diagnosing fibromyalgia has been very controversial over the years because it has lacked definitive tests and was based on patient reporting of symptoms.
Recently, two new findings may be leading to a series of tests – a blood test for fibromyalgia and a brain image scan for it too – that could wind up making diagnosis much easier.
Diagnosing RSDS has many of the same issues as fibromyalgia, but there are some extensive neuro-testing and observational symptoms that are unique to the disorder that can make it easier to spot.
That said, one of the difficulties in diagnosing RSDS is that many physicians are not familiar with the syndrome and therefore are less likely to perform the diagnostic tests.
There is a growing body of evidence that suggests that those with fibromyalgia may also be at a higher risk for reflex sympathetic dystrophy syndrome (RSDS).
It is thought that the stress of chronic pain and recurring instances of inflammation may lead to the type of sympathetic nervous system disruption that is experienced by those with RSDS.
Just having fibromyalgia does not mean that you will also acquire RSDS. The diet and lifestyle treatments, plus pain and anti-inflammatory medications used to treat fibromyalgia can very well help prevent the disorder-related trauma to the nerve system that would cause the syndrome to develop.
If you are diagnosed with both, you must talk to your doctor about possible courses of treatment.
If your doctor returns a diagnosis of both reflex sympathetic dystrophy syndrome (RSDS) and fibromyalgia you have to become very proactive in your care and treatment.
You and your physician are going to have to engage in a process of identifying which symptoms belong with which diagnosis in your disorders, and which are shared. This is essential in making sure that you are trying what will be the most effective form of treatment possible for relief.
Some of the more aggressive treatments for RSDS, such as nerve disabling, are not appropriate for handling pain related to fibromyalgia. While you are figuring out the best approach, it is known that for both diagnoses being proactive with lifestyle changes can help greatly.
Choose to learn more about the foods you should and should not eat to help control inflammation and other symptoms associated with both RSDS and fibromyalgia. Avoiding foods like the nightshade plants, and additives such as NutraSweet and aspartame are known to help reduce inflammation.
You also need to explore alternative treatments. Some of the treatments such as acupuncture have successfully relieved pain and inflammation for both conditions. Also, getting active is a must.
The more the joints and muscles move the more the body can heal itself and help you to manage pain by releasing appropriate pain-controlling hormones. You may need to go on prescribed pain medication in order to begin to build the habit of exercise.
Pain medication isn’t meant to take away your pain, it is meant to help lower your pain to a more tolerable level. Too much pain medication can cause even worse problems than the original disorder.
The best course of action is to take enough medication to make pain manageable so you can begin to get active again. Physical activity remains the best way to manage muscle, joint, and nerve pain.
Chronic pain,depression, and isolation are common triad. Make an effort to stay connected. Join support groups. Never give up. Chronic pain is something you can learn to live with and return to enjoying life too.
Pain is a complex phenomenon made up of physical, mental, and social components. At a basic level, the ability to perceive pain has helped people survive throughout the ages. Without feeling the uncomfortable sensation when you touch a stove, which causes you to remove your hand, the heat from the stove would end up causing far more damage to the cells in your hand, than it did before you felt the pain.
In essence, pain is the body’s way of letting you know something is wrong. However, it is when pain fails to subside, despite removing the initial cause, that it becomes pathologic, and known as chronic pain.
“The origins of chronic pain can be categorized into visceral (internal organs), somatic (skin and deep tissue), and neurogenic (nerves).”
Chronic pain can have a wide range of causes and can be associated with a number of different disease processes, thus the ability to diagnose chronic pain syndromes has been a widely debated topic within the medical community for many years.
Earlier this year, the American Pain Society, released a framework that attempts to account for all of the various factors that encompass chronic pain syndromes: physical, pathological, neurobiological, psychological, and social. Broadly speaking, however, the origins of chronic pain can be categorized into visceral (internal organs), somatic (skin and deep tissue), and neurogenic (nerves).
The Institute of Medicine reports that common chronic pain affects approximately 100 million American adults at a cost of $560-635 billion in direct medical treatment cost and lost productivity. However, while the impact of chronic pain is wide-reaching across the population, its effect on the individual person is unique; there is variation in the source(s), severity, duration, response to treatment, and psychological impact from person to person.
Given the variety in the spectrum of chronic pain, it is no wonder why clinicians at times find difficulty in helping patients manage their chronic pain. This difficulty in management has contributed in part to the wide range of therapies that are used to treat chronic pain, such as aspirin, ibuprofen, and other drugs which are classified broadly as non-steroidal anti-inflammatory drugs (NSAIDs) and can be purchased over over the counter.
These medications may work well for short-term relief of mild to moderate pain, but they can create side effects such as ulcers and potentially damage the liver when used continuously, such as in a chronic pain scenario. It is for these reasons that most clinicians avoid relying on this type of medication for long-term pain relief.
A more powerful alternative to NSAIDs is the opiates, such as morphine, oxycodone, codeine, and hydromorphone. The drugs have been well described in the scientific literature, and work by affecting the body’s natural opioid receptors to prevent the nerves responsible for sending pain signals from firing.
These medications have the ability to provide tremendous pain relief and provide clinicians the opportunity to perform life-saving therapies which would otherwise be impossible (e.g. surgery). However, in the treatment of chronic pain, opioid therapy by itself can become problematic for patients – the body begins to develop a tolerance to these medications, thus the dose required in order to get symptomatic relief continues to increase over time.
Additionally, the side effects of taking opioids (sedation, nausea, constipation, and potential respiratory depression and death) make physicians reluctant to continue to raise dosages for patients out of fear of causing dependence. This fear is not ill-conceived either; in 2007, the US Substance and Mental Health Services Administration declared that the dependence on and abuse of pharmaceutical medications is the fastest growing form of problematic substance use in America.
Recently, the argument has been made that the growing rate of prescription drug abuse in the first decade of the 21 century, has been the foundation for the emerging heroin epidemic which characterizes this decade. Due to the issue of tolerance and dependence on opioids, many physicians, supplement the therapy with anti-depressants, muscle relaxants, and additional interventions when treating patients with chronic pain in an attempt to provide relief.
The use of cannabis to treat chronic pain has had a long history, with written references of its use dating back to around 2700 B.C.E. The first records in the nineteenth century were recorded by the Irish doctor William B. O’Shaughnessy, who described the use of cannabis in the treatment of cholera, rabies, tetanus, menstrual cramps, and delirium tremens.
In modern times, significant research has been done around cannabis therapy in the treatment of chronic pain with very promising results.
“Medical cannabis is a very effective therapy for chronic pain patients because it affects people’s perception of pain, has the ability to mitigate the inflammatory process, and has been shown to affect voltage-gated sodium channels in nerves in a way similar to lidocaine.” – Dr. Mark Rabe
“Medical cannabis is a very effective therapy for chronic pain patients because it affects people’s perception of pain, has the ability to mitigate the inflammatory process, and has been shown to affect voltage-gated sodium channels in nerves in a way similar to lidocaine,” reports Dr. Mark Rabe, Medical Director of Centric Wellness, am integrative holistic healthcare practice in San Diego CA and Chairman of the Scientific Advisory Board at Medical Marijuana Sciences, Inc.
The ability of cannabis therapy to help relieve chronic pain on multiple fronts rests squarely in the cannabinoid receptors – cannabinoid receptor type-1 (CB1) and type-2 (CB2). Studies have shown that CB1 receptors are located all over the body, however, they have a particularly high concentration in the central nervous system in areas that control pain perception. CB2 receptors, on the other hand, are primarily located in areas of the body that control immune function, such as the spleen, white blood cells, and tonsils.
The fact that these receptors are found in the two major body systems responsible for producing the sensation of pain, the immune system and the nervous system is what gives cannabis its therapeutic relevance in the chronic pain space. Additionally, and importantly, there is a lack of cannabinoid receptors in the brainstem region, the area of the brain responsible for controlling breathing, thus the dangerous side effect of respiratory depression found with high dose opioid use is not a factor in cannabis therapy.
In practical application, cannabis therapy can be used in conjunction with other chronic pain therapies. In his clinical practice, Dr. Rabe reports, “We have many patients who come in on higher doses of opioid medications. Through using cannabis, in conjunction with other therapies, they are able to lower their daily opioid requirement.”
Numerous studies support these findings, including a 2011 study published in the Journal of Clinical Pharmacology and Therapeutics which showed that vaporizing cannabis increased the patient-reported analgesic effect of opioids, without altering plasma opioid levels. Moreover, there is an emerging body of research whose findings suggest cannabis can be used as an effective substitution therapy for patients with opiate abuse issues.
Overall, we are just at the beginning of our understanding of the possible therapeutic benefits associated with cannabis in the treatment of chronic pain. In addition to the wide range of possibilities in targeting CB1 and CB2 receptors, scientists are beginning to look at targets within the body’s endocannabinoid metabolic life cycle for potential opportunities for therapeutic intervention. Given the growing need for clinicians to transition away from an opiate–dependent treatment protocol for chronic pain, hopefully, these breakthroughs happen sooner rather than later. Naturally, the relaxation of government prohibition would go a long way towards supporting these efforts.
Having IC alone can impose a lot of restrictions on your lifestyle and, like fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), it’s linked to depression. Also, like FMS and ME/CFS, IC can be difficult to diagnose, treat and manage.
Some people have good luck with basic treatments and dietary changes, while others may need more intensive treatments or even surgery.
Interstitial cystitis (IC) is abdominal or pelvic pain related to your bladder getting full, often accompanied by other urinary symptoms, but with no infection or other obvious diseases. The cause of IC is unknown. Frequently, doctors misdiagnose it as a urinary tract infection, and most people have IC for about 4 years before they’re diagnosed correctly.
You’re most likely to develop IC in your 30s or 40s, but it’s also possible to get it earlier or later.
Why the overlap? Good question! Problem is, we don’t have an answer. Researchers are still trying to puzzle out the causes and underlying mechanisms of all these conditions, and until they can, we probably won’t understand why they overlap.
IC is diagnosed primarily based on symptoms. Before diagnosing IC, your doctor will need to rule out other possible causes of your symptoms. Tests include:
Urine cytology (for detecting cancer and inflammatory diseases in the urinary tract)
Video urodynamics (which shows how much urine it takes for you to feel the need to urinate)
To confirm an IC diagnosis, your doctor may perform a hydrodistention, in which your bladder is filled with water. That helps your doctor view your bladder walls for possible hemorrhages common in people with IC.
IC isn’t well recognized or easily diagnosed, so if you think you have it, mention it to your doctor.
There’s no cure for IC, and treatment needs to be tailored to the individual. It can take a lot of trial and error before you find the right combination of therapies and lifestyle changes.
Your doctor may prescribe one of the several medications for IC:
If you’re being treated for IC and FMS or ME/CFS, you should talk to your doctor and pharmacist about any possible drug interactions.
For instance, you shouldn’t take SSRI/SNRI-type antidepressants, which are common treatments for FMS and ME/CFS, with tricyclic antidepressants used for IC. Also, the FMS treatment Lyrica (pregabalin) doesn’t mix well with prescription pain medicines.
However, the tricyclic antidepressants prescribed for IC work well for some people with FMS or ME/CFS, and other IC treatments such as physical therapy and biofeedback may provide a cross-over benefit. You may also have food sensitivities that exacerbate more than one condition, so an elimination diet could really help you.
Because pain from other conditions can make FMS symptoms worse, you’ll really benefit from finding a good treatment regimen for IC.
Any one of these conditions is hard to live with, so when you have them in combination it can take a big toll on your life. Limitations imposed on your life by pain, fatigue, and urinating possibly dozens of times a day often can lead to depression, loss of social life, unemployment, and other problems.
It’s important to find and follow a treatment regimen that works for you, and to seek out support either from people in your life or support groups, online or in your community.
Here are more resources to help you learn about, manage, and live with IC:
Interstitial Cystitis Basics: Symptoms, Diagnosis & Treatment from Mary Kugler, R.N., Verywell.com Expert on Rare Diseases.
Interstitial Cystitis: Questions & Answers from Verywell.com Expert on Women’s Health, Tracee Cornforth
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.
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.
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 conditionsand another type that would be a temporary situation for need. And both should require a visit to the doctor confirming either situation.
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?
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!
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 Invisibleare 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?
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.
Fibromyalgia and myofascial pain syndrome often go together. Because of the frequent overlap and some similar symptoms, they’re often mistaken for the same condition and, as a result, people with both are sometimes only diagnosed with and treated for one.
In MPS, muscles and connective tissues (which make up the fascia) develop what’s called a trigger point (TrP). These are not the same as FMS tender points.
A trigger point is a small, hard knot that you can sometimes feel under your skin. The knot itself can be painful, especially when poked, but it often causes pain in another area, which is called referred pain.
Trigger points typically form as a result of trauma to the tissue. Experts don’t know why damage that heals normally in most people causes TrPs in others. However, studies suggest that muscle injury in some people leads to abnormalities where the nerve cells connect to muscle cells. This suggests MPS is a neuromuscular disease.
Why people with MPS frequently develop FMS isn’t yet clear, but a growing body of evidence shows that, in some people, chronic pain can make changes to the central nervous system, resulting in central sensitization. If theories are correct, early treatment of MPS may help prevent FMS.
Referred pain makes MPS especially hard to diagnose and treat. Typically, a doctor says, “Where does it hurt?” and then looks where you point. To treat MPS, you and your doctor need to examine your symptoms and figure out where your trigger points are.
Your doctor can find trigger points by feel or based on symptoms.
Tests such as magnetic resonance elastography and tissue biopsy may show abnormalities in TrPs, but their roles in diagnosing MPS still aren’t clear.
By contrast, no test or scan reveals abnormalities in the tissues where people with FMS experience pain.
Trigger-Point Injections: The doctor inserts a needle directly into a TrP or in several places around it to loosen up the taut bands. The doctor may inject a pain-relieving medication, such as corticosteroids or lidocaine. (Note: some doctors believe corticosteroids can exacerbate fibromyalgia symptoms.) When no medication is used, it’s called dry needling.
Acupuncture:Acupuncture is an ancient Chinese practice similar to dry needling. While studies of its use in MPS are limited they are promising, and many patients and practitioners report good results.
Physical Therapy: A special kind of therapy called spray-and-stretch is common for treating MPS. A physical therapist guides you through stretching exercises while spraying a numbing substance on your muscle. The therapist may also use certain massage techniques to loosen your muscles and TrPs. In addition, a therapist can work with you on factors such as poor posture that may contribute to MPS.
Medications: Common drugs for MPS include nonsteroidal anti-inflammatory drugs (NSAIDs) such as Aleve (naproxen) or ibuprofen-based drugs like Advil and Motrin, and tricyclic antidepressants such as amitriptyline, doxepin, and nortriptyline.
With significant differences in their symptoms, diagnostics, and treatment, it’s clear that fibromyalgia and myofascial pain syndrome are not the same conditions. However, it can be extremely difficult to determine which condition is causing which pain when a person has both of them.
By working both on your own and with your doctor and/or physical therapist, you may be able to figure out where you have trigger points and how best to treat them without exacerbating your fibromyalgia. Relieving the myofascial pain is likely to quiet your fibromyalgia symptoms, so you could well see a double benefit.
