9 tips for anyone newly diagnosed with fibromyalgia

You’ve been given a fibromyalgia diagnosis. Now what?

I know you’ve felt like crap for months – maybe even years. You’ve probably shuffled from doctor-to-doctor, trying to figure out why you’re in pain all the time and can barely pull yourself out of bed. You may even be relieved that you finally have a diagnosis. I know I was when I was diagnosed in 2014.

But looking back at my own fibromyalgia journey, one quote comes to mind again and again: I wish I knew then what I know now. So, today I’m sharing what I wish someone had told me when I was first diagnosed. I hope it lessens someone else’s struggle.

Tip #1 Don’t blindly accept your diagnosis

My first advice to anyone newly diagnosed with fibromyalgia is to question your diagnosis. Fibro is a diagnosis of exclusion, meaning all other possible medical conditions have to be ruled out by your physician. Are you sure he or she did that?

Too often physicians label someone with fibromyalgia because it’s the path of least resistance. They don’t know what’s wrong with you, and nothing obvious is showing up on your lab work, so it must be fibromyalgia, right?

But I would encourage you not to blindly accept your diagnosis. Here’s why: A Canadian study found that up to two-thirds of fibromyalgia patients have been misdiagnosed.

The implications of that are huge. That means millions of fibromyalgia sufferers are living with undiagnosed conditions, some of which are probably treatable!

Tip #2 Find a great doctor

I know some people live in localities where medical options are limited, but if you don’t fall into that category, please do not keep going to a doctor who disrespects you or isn’t capable or willing to help you.

I have heard so many physician horror stories over the years from my fellow fibro warriors – doctors who told them fibromyalgia doesn’t exist, who said it was all in their head, who overprescribed medications to the point of putting them in a drugged stupor, who told them they were just getting old or needed to lose weight.

If your physician has said or done any of the above things, then please find a new doctor (if you’re able)! Do not allow yourself to be abused! Do not allow your physician to invalidate your illness!

You are not making it up, and it is not all in your head. Never doubt that! Seek out a physician who believes in fibromyalgia, is highly knowledgeable about the complexities of this condition and is familiar with the latest research.

I will warn you: It’s hard to find a good fibro doctor. Expect to go from doctor-to-doctor for a while before you find the right one, but trust me, having the right doctor is worth the effort!

Tip #3 The “right doctor” probably isn’t your primary-care physician or rheumatologist

Medscape’s 2016 Physician Compensation Report found that doctors average around 15 minutes per patient visit. That’s barely long enough for the patient to rattle off their complaints and for the doctor to write a prescription to try to fix said complaints. That works if you’ve got something simple like the flu, but if you’re living with a complicated chronic illness like fibromyalgia, it’s just not going to cut it.

So, what’s the solution? Seek out medical providers who practice healthcare differently. I spent years going to various primary-care doctors and specialists. None of these doctors held the answers to helping me feel better from fibro. You know why? Because they all just looked at a piece of my health issues.

The only success I’ve ever had at reducing my symptoms has been when I worked with doctors who practice functional medicine. Functional medicine doctors take a more systematic, whole-body approach to healthcare. They understand that symptoms do not happen in a vacuum. Our chronic pain, digestive troubles, migraines, exhaustion and the myriad of other fibro symptoms we experience are all linked and should be treated as such.

In functional medicine, the goal is to restore overall health, not just treat symptoms with the latest pharmaceuticals. Functional medicine practitioners tend to utilize many more tools, such as lifestyle modifications, natural supplements and alternative therapies, than traditional doctors. If I was diagnosed today, I would go directly to the Institute of Functional Medicine website and try to find a local functional medicine doctor versed in fibromyalgia.

I know other fibro sufferers who have had good results with naturopaths, osteopathic doctors and even chiropractors. These kinds of medical providers tend to be more open-minded. That’s important because there is no magic pill for fibromyalgia (see tip #4), and you need a physician who isn’t afraid to experiment with emerging treatments (see tip #8).

I’m not implying all traditional physicians are inept and slaves to the pharmaceutical industry, but I am saying you have a better chance of improving your outcome if you work with a doctor who takes a comprehensive, holistic approach to treatment.

Tip #4 There is no magic pill
In the year after my diagnosis, I tried several of the usual fibro drugs, but none of them helped. They either didn’t work or turned me into a zombie.

When I actually looked at the research trial results of the three drugs approved by the U.S. Food and Drug Administration for fibromyalgia – Cymbalta, Lyrica and Savella – it was quickly obvious why they didn’t work for me. The truth is they don’t work very well for most fibro sufferers. For example, only about one-third of patients taking Cymbalta report at least a 50 percent reduction in pain, and that’s the most effective drug of the three!

These drugs do help some fibromyalgia patients, and I don’t discourage anyone from trying them, but for most of us there is no magic pill.

Tip #5 It’s going to take more than drugs to feel better

While researching, I occasionally run across so-called success stories featuring people who have either recovered completely from fibromyalgia or are successfully minimizing their symptoms. While reading their stories, I’ve discovered a pattern: Every single one of them used multiple modalities to feel better.

Dietary changes are almost always mentioned. They gave up sugar and processed foods and eat a whole foods-based diet. Many of them went dairy, soy and gluten-free.

They majorly overhauled their lifestyle. They meditate or do yoga or tai chi to calm their overactive nervous system. They do gentle walking or aquatic exercise to stay active. They regularly spend time outdoors. They learn to pace themselves. They’ve become experts at stress management.

Sometimes they used prescription drugs, but those were only a small piece of their overall treatment plan. In short, they took a more natural, lifestyle-based approach to treatment.

Tip #6 Do your own research

We all know doctors are extremely busy, and most of them don’t have time to stay up-to-date on the latest research and treatments for all of the conditions they encounter in any given day. So, please don’t rely exclusively on them for your healing!

Here’s the harsh reality: The minute you walk out of that examination room, they’re onto the next patient. They probably won’t think about you again until they see your face at the next appointment.

So, it falls to you to become your best health advocate. Get on the Internet and do your own research! Seek out information about new treatments or therapies, and take those to your next doctor’s appointment for discussion. Be proactive in the management of your symptoms by making those important lifestyle changes mentioned in tip #5.

Become an expert in your chronic health condition! I learned early on that I was never going to feel better if I exclusively relied on my doctors for answers. They just don’t have the time or attention span for that.

Tip #7 Connect with others with fibromyalgia

Fibro can be a lonely, miserable condition. Friends and loved ones may commiserate with your pain, but the truth is no one ever truly gets fibromyalgia until they get it themselves.

But there’s one group of people who will always understand your suffering: your fellow fibro warriors! Make an effort to connect with others who have fibromyalgia through local and/or online support groups.

You will learn so much from your fellow warriors! Many of them have been in the trenches with fibromyalgia for decades, and they know better than anyone what works to knock down the pain or how to shorten a flare of symptoms. They also understand all of the emotional stuff that comes with living with an unpredictable, life-sucking chronic illness.

Bonus tip: Local support groups are a great source for finding the best fibro doctor in your community.

Tip #8 Explore emerging treatments

Early on in my diagnosis, I was much more rigid about only using research-proven treatments. However, it didn’t take me long to realize that fibromyalgia research is in its infancy, and there is no one-size-fits-all treatment approach. One of fibro’s great mysteries is that what works for one of us doesn’t necessarily work for the rest of us.

Because of that, I’ve become much more open-minded about treatment. In some ways, I’ve become my own guinea pig. I’m not afraid to try new treatments – after careful research and talking with my doctor, of course! Some of the most effective tools in my current fibro-fighting arsenal would be considered fringe treatments, but they work for me, and that’s what matters.

I learn a ton from my fellow fibro warriors (see tip #7). They are an invaluable resource, and they’re often years ahead of researchers when it comes to natural or alternative treatments.

Tip #9 It’s up to you

A few days ago, someone in an online fibro support group said pain was her friend. Maybe I’m not spiritually evolved enough yet because I have no desire to get friendly with my pain.

But I do see chronic pain as a great teacher. In the wake of your diagnosis, you will learn so much about yourself, your loved ones and the medical community. Your strength will be tested – sometimes daily – and it will be up to you whether you handle that struggle with grace or despair.

Fibromyalgia will change you as a person. The choice is yours whether it’s for the better or worse, but you always have choice. Remember that.


Fibromyalgia Symptoms & Treatment

What is fibromyalgia?

Fibromyalgia (fye-bro-mye-AL-ja) is a disorder that causes aches and pain all over the body. People with fibromyalgia also have “tender points” throughout their bodies. Tender points are specific places on the neck, shoulders, back, hips, arms, and legs that hurt when pressure is put on them.


What are the symptoms of fibromyalgia?

In addition to pain, people with fibromyalgia could also have:

  • Cognitive and memory problems (sometimes called “fibro fog”)
  • Trouble sleeping
  • Morning stiffness
  • Headaches
  • Irritable bowel syndrome
  • Painful menstrual periods
  • Numbness or tingling of hands and feet
  • Restless legs syndrome
  • Temperature sensitivity
  • Sensitivity to loud noises or bright lights


How common is fibromyalgia? Who is mainly affected?

Fibromyalgia affects as many as 5 million Americans ages 18 and older. Most people with fibromyalgia are women (about 80 – 90 percent). However, men and children also can have the disorder. Most people are diagnosed during middle age.

Fibromyalgia can occur by itself, but people with certain other diseases, such as rheumatoid arthritis, lupus, and other types of arthritis, may be more likely to have it. Individuals who have a close relative with fibromyalgia are more likely to develop it themselves.


What causes fibromyalgia?

The causes of fibromyalgia are not known. Researchers think a number of factors might be involved. Fibromyalgia can occur on its own, but has also been linked to:

  • Having a family history of fibromyalgia
  • Being exposed to stressful or traumatic events, such as
    • Car accidents
    • Injuries to the body caused by performing the same action over and over again (called “repetitive” injuries)
    • Infections or illnesses
    • Being sent to war


How is fibromyalgia diagnosed?

People with fibromyalgia often see many doctors before being diagnosed. One reason for this may be that pain and fatige, the main symptoms of fibromyalgia, also are symptoms of many other conditions. Therefore, doctors often must rule out other possible causes of these symptoms before diagnosing fibromyalgia. Fibromyalgia cannot be found by a lab test.

A doctor who knows about fibromyalgia, however, can make a diagnosis based upon two criteria:

  1. A history of widespread pain lasting more than 3 months. Pain must be present in both the right and left sides of the body as well as above and below the waist.
  2. Presence of tender points. The body has 18 sites that are possible tender points. For fibromyalgia diagnosis a person must have 11 or more tender points. For a point to be “tender,” the patient must feel pain when pressure is put on the site. People who have fibromyalgia may feel pain at other sites, too, but those 18 sites on the body are used for diagnosis.

Your doctor may try to rule out other causes of your pain and fatigue. Testing for some of these things may make sense to you. For instance, you may find it reasonable that your doctor wants to rule out rheumatoid arthritis, since that disease also causes pain. Testing for other conditions — such as lupus, multiple sclerosis, or sleep apnea — may make less sense to you. But fibromyalgia can mimic or even overlap many other conditions. Talk with your doctor. He or she can help you understand what each test is for and how each test is part of making a final diagnosis.


This Tea Heals Fibromyalgia, Rheumatoid Arthritis, Hashimoto’s, Multiple Sclerosis, And More…

Thyme has been popular for centuries, and it has been commonly used to treat various ailments, from flu to epileptic seizures.

During the middle ages, people mixed thyme with lavender in equal amounts and sprinkled on the floors of churches to get rid of any unwanted odors. Moreover, it has also been used to heal wounds and prevent infections, and it was applied crushed on the affected areas.

Its volatile essential oils are high in antiviral, anti-rheumatic, antiseptic, anti-parasitic, and anti-fungal properties.

Its regular use will lower the viral load in the body, so it is excellent in the case of lupus, tinnitus, chronic fatigue syndrome, multiple sclerosis, fibromyalgia, vertigo, Hashimoto’s thyroiditis, and rheumatoid arthritis. All you need to do to treat these conditions is to drink thyme tea every morning.

Thyme is high in vitamins and minerals, including iron, potassium, and calcium, all of which are extremely beneficial for proper red blood cell formation, blood pressure regulation, and distribution of antioxidants in the body. It is also abundant in folic acid, B-complex vitamins, vitamin A, and C.

It also contains various  bioflavonoids and volatile oils, including thymol, an essential oil with potent antioxidant properties.

Furthermore, it has powerful cancer preventive properties, as it is rich in terpenoids such as rosmarinic and ursolic acids. Studies have shown that the regular intake of thyme raises the amount of DHA (docosahexaenoic acid, an omega-3 fatty acid) in the kidney, brain, and heart cell membranes.

The essential oils in thyme have strong expectorant and bronchial antispasmodic properties and are thus excellent in the treatment and prevention of:

  • gingivitis
  • laryngitis
  • asthma
  • throat infections
  • acute and chronic bronchitis
  • sore throats
  • coughs
  • inflammation of the mouth


8 Extraordinary Things You Need to Know About People With Chronic Illness

For those who do not have a chronic illness, I am going to share eight extraordinary things about people with chronic illness that you need to know. May this list encourage you to understand their plight and their incredible passion to live despite their struggling. May it open a new perspective for you to consider. May it help you understand what they endure. May it inspire you to appreciate the people in your life who have chronic illness — and tell them how much you admire them.

For those who are reading this list and you live a life of chronic illness —

This one’s for you.

1. People with chronic illness have a profound strength to manage life while in pain.

They have a relentless will to live, so they must dive deep into their reservoir of strength to mine more of it every single day they are faced with the challenges of their pain. They don’t give up, despite the debilitating symptoms they experience. They push through and grab hold of what they can to find fulfillment in every day. This type of endurance and perseverance proves to be an ongoing battle that can result in profound fortitude.

Reach out to them and acknowledge their incredible strength, would you?

2. People with chronic illness tend to have an astute awareness of other people’s pain.

Because they have endured their own difficult road of affliction, they may be more in tune to the people around them. They can have extraordinary empathy and compassion for others and a deep understanding of adversity and hardship, so they can truly appreciate someone else’s struggles. When someone is hurting, they are often the first to respond and console because they know the significance of having support.

3. People with chronic illness may have a unique perspective on life.

They are constantly challenged to find meaning and fulfillment within their own limitations, and they may celebrate simple things that others take for granted. They can have an exceptional admiration for life experiences, because they often live within the confines of their captivity — unable to live an active life. They may learn to look for the gifts in every day with great vigilance.

Reach out to them and tell them how you are inspired by their perspective, would you?

4. People with chronic illness often don’t tell people when they are struggling.

Because they are sick so often, they may not want to burden others regularly. They might struggle alone because they hate to make people feel uncomfortable or obligated in any way. Many times, you might notice they disappear for a time – they could miss regular events, social activities, or friends and family gatherings. This is often when they are trying to manage their symptoms and are too sick to do much else. Their disappearance sometimes goes unnoticed. This is quite possibly the hardest part of being chronically ill. They desperately want to join you.

5. People with chronic illness live a secret life of struggling.

They may not look sick at all, but underneath their appearance there is a person fighting fiercely to be well. They may fall apart as soon as they get home, after keeping the facade for hours wherever they were. They may have taken enough medicine just to get them through the day. They may mask their pain with smiles so others won’t notice their struggling. They likely don’t want to be seen as sick all the time, so they may try hard to present themselves as “OK”… and often, they are not.

Reach out to them and ask them how they’re really doing. Then listen, with empathy and love, would you?

6. People with chronic illness need you to check on them.

They often feel uncomfortable reaching out for help or support because they may feel people have more important things to do. Many are sure people are tired of hearing about their sickness/disease, so they stop telling their family and friends about their struggles. They hate what they are enduring, and wish things were different.

Reach out to them and assure them you are not tired of hearing about their struggles (and genuinely mean it). Ask them how you can help them, would you?

7. People with chronic illness can fail to follow through on commitments.

While they want so desperately to live a full life connecting with others and showing up when they say they will, people with chronic illness don’t have the privilege of knowing how they will feel each and every day. They may wish they could be more predictable, but their illness controls the outcome. If they fail you, please understand that they are more disappointed than you could ever be. They have to live with the anguish of letting you down on top of the physical pain they endure. All they have is hopeful intention and often it is met with utter defeat.

Reach out to them and tell them you absolutely understand and ask to reschedule for when they are feeling better, would you?

8. People with chronic illness need to know they are loved unconditionally, because you cannot place conditions on them.

While most of the world and the people in it operate on performance and productivity, many people who have chronic illness cannot measure their worth in this way. Some days, they may feel they are of no value because they couldn’t do anything productive besides manage their illness. They can feel useless and insignificant to the world around them. They must learn to love themselves without expectations, and you must, too.

Reach out to them and tell them how valuable they are, just as they are, would you?

People who endure long-suffering are in all of our lives. Let’s make sure we walk alongside them with the love and support they deserve.

Who has chronic illness in your life?

Make sure you reach out, and tell them they are something special, would you?

Christine’s book “Help and Hope While You’re Healing” can be found on Amazon.



Shared reading could help to ease chronic pain

Chronic pain affects millions of people in the United States, and it can severely interfere with everyday functioning. However, recent research suggests a new treatment strategy for the condition: shared reading.
Researchers suggest that shared reading could be better than CBT for alleviating chronic pain.

Shared reading is an interactive reading experience in which small groups of people gather to read short stories, poetry, and other literature aloud.

By using literature that triggers memories of experiences throughout life – such as childhood and relationships – researchers have found that shared reading might be a more effective strategy to help alleviate chronic pain than cognitive behavioral therapy (CBT).

Study leader Dr. Josie Billington, from the Centre for Research into Reading, Literature and Society at the University of Liverpool in the United Kingdom, and colleagues recently reported their results in the journal Medical Humanities.

Chronic pain – defined as any form of pain that lasts for at least 12 weeks – is estimated to affect around 100 million people in the U.S.

Low back pain, severe headache or migraine, and neck pain are the most common forms of pain, with back pain being the leading cause of disability in the U.S.

While there are a number of medications that can help with chronic pain management, they are not always effective. Patients are increasingly turning to non-pharmacological strategies, such as CBT, to help alleviate pain.

CBT is a form of talk therapy that aims to change the way people think and behave in order to better manage mental and physical issues. Studies have shown that the technique may be effective for chronic pain, but the results can be short-lived.

Shared reading ‘could be an alternative to CBT’ for chronic pain

For their research, Billington and colleagues wanted to compare shared reading with CBT for chronic pain, since shared reading is often used to help ease the symptoms of other chronic conditions, such as dementia.

Participants with severe chronic pain were recruited to the study. Some subjects completed 5 weeks of CBT, and parallel to this, the remaining subjects completed 22 weeks of shared reading. After 5 weeks, participants who completed CBT joined the shared reading group.

The shared reading strategy incorporated literature that was designed to prompt memories of relationships, family members, work, and other experiences that arise throughout a lifetime, as opposed to CBT, which focused on a single point in time at which the patient was affected by chronic pain.

Subjects were required to report pain severity and emotions before and after each intervention, and they also kept a diary, where they recorded their pain and emotions twice daily.

While CBT helped participants to “manage” their emotions using organized methods, the researchers found that shared reading helped patients to address painful emotions that might be contributing to their chronic pain.

Furthermore, the researchers found that pain severity and mood improved for up to 2 days following shared reading.

“Our study indicated that shared reading could potentially be an alternative to CBT in bringing into conscious awareness areas of emotional pain otherwise passively suffered by chronic pain patients.

The encouragement of greater confrontation and tolerance of emotional difficulty that sharing reading provides makes it valuable as a longer-term follow-up or adjunct to CBT’s concentration on short-term management of emotion.”

Dr. Josie Billington

While the findings show promise for shared reading as an alternative non-pharmacological approach for chronic pain management, the team says that further studies with larger sample sizes are warranted.


8 Home Remedies to Relieve Fibromyalgia

Fibromyalgia is a chronic condition also known as fibrositis. It is characterized by pain that is widespread. The condition is more common in women than men. The exact reason for the disease has not been determined. The possible causes of the disease are hormonal disturbances, brain or spinal cord trauma, viral infections, disturbed sleep patterns, stress, genetics, etc. There is no definitive treatment for fibromyalgia, but symptoms can be relieved with some treatment.

The symptoms of fibrositis can be relieved by using some home remedies. Here are some of the remedies you can use.

1. Ginger

Ginger is an excellent remedy for relieving pain and inflammation. There are a variety of ways in which you can consume ginger. You can include ginger in your daily meals or drink ginger tea. You can also make the mixture by mashing a piece of ginger, boil it in water and drink it twice a day.  If you want to add a little taste, then you can always add a little salt. Ginger can do wonders for people suffering from this condition.

2. Eat Anti-Inflammatory Nutrients

Inflammation is the cause of a lot of health problems. It can also cause pain in the muscles. You can relieve the pain by paying attention to your diet. Diet can have an enormous effect on living a pain-free life. There are certain food products such as red onion, green teas, broccoli, black teas, tomato, etc. that contain antioxidants, such as quercetin, which are useful in reducing inflammation.

The foods containing high levels of omega-3 fats are also good for naturally reducing inflammation. If you are using fish oil, then make sure that you buy the best quality oil because it will have a higher level of oxidants and lower mercury levels.

3. Camphor

Camphor helps in relieving pain because it can tighten the muscles. Reducing the pain helps in increasing the efficiency of the body. You can use the camphor oil and apply it on the muscles to reduce pain, or you can eat it in the form of coriander. You can consume it by including it in your meals.

4. Eat the Right Vegetables

Vegetables are highly nutritious, and they can also help in relieving symptoms of fibrosis. You should never forget to include green vegetables in your diet. Vegetables are an excellent choice for strengthening bones and muscles. You should increase the intake of pumpkins as well. Make green salads an essential part of meals, and you can always use lemon juice to make it tasty.

5. Drink More Liquids

The liquids made up of blended vegetables should also be a part of your diet, as it helps get rid of toxins. It cleans the body and helps in getting rid of any elements that may cause inflammation.

6. Invest Time in Exercising and Meditation

Stress and anxiety can exacerbate fibrosis, so it is important that you stay happy and relaxed. You can help in relaxing your mind by doing yoga and meditation. They are the best ways for dealing with symptoms such as fatigue, poor sleep, anxiety, poor memory, stiffness, depression and poor balance. Dedicating just a few minutes to yoga and meditation can make life easier for you.

7. Epsom Salt

You can also relieve pain by soaking the body in epsom salt. It is magnesium sulphate and, by immersing the body in it, it lets the body absorb magnesium. One causes of fibromyalgia may be due to a deficiency in magnesium. The epsom salt bath is the best way of relaxing muscles and relieving pain. You should do it at least three times a year, and you only need to soak the body for twenty minutes.

8. Massage

Massage therapy is an excellent way of keeping the body relaxed and improving the movement of joints. It is good for getting rid of stress, and it helps relieve pain. The massages most beneficial for fibrosis are manual lymph drainage therapy. You should seek a massage therapist who has experience dealing with people suffering from fibromyalgia.



Complex regional pain syndrome: a long overlooked condition

Complex regional pain syndrome (CRPS) is a debilitating condition that affects the limbs and can be induced by trauma or surgery. An article recently published in Burns & Trauma provides a comprehensive summary of this little known condition and gives an update on recent progress in treatment.

CRPS image full
Complex regional pain syndrome (CRPS) is a debilitating condition that has been studied since it was first described by Weir Mitchell in the 1860s. During the civil war, he had keenly observed a pattern of clinical signs and symptoms with much consistency, and termed it, rather innovatively, causalgia.

This is a condition, which we had come across in our formative years in medical school, but only recently did we see patients with this condition. Often, physicians found it difficult to characterize, which led to a late diagnosis. Furthermore, explaining to patients about the diagnosis proved equally challenging. In both instances, the ever-changing terminology and nosology of CRPS played a huge role.

Due to the multi- factorial nature of this condition, animal models that can simulate the disease process are lacking.

Over the years, the complex nature of CRPS has proved an enormous challenge for clinicians and researchers alike. Since the turn of the millennium, only two randomized, placebo-controlled trials have been conducted in the United States, both of which have demonstrated disappointing results. Due to the multi- factorial nature of this condition, animal models that can simulate the disease process are lacking, which is further compounded by our limited understanding of the mechanisms involved.

This has hindered the development of new therapies, leading clinicians to adopt a trial and error approach towards managing this syndrome. Hence, most studies evaluating novel approaches have been restricted to case series or small pilot studies. The recent declaration by the United States Food and Drug Administration of CRPS as an official disease has given us renewed hope, as this has been a catalyst for new drug development.

Recently, an article entitled “Complex Regional Pain Syndrome: A Recent Update” was published in Burns & Trauma, which provides a comprehensive summary of the latest developments in our understanding of CRPS. CRPS is now classified as Type I, which occurs due to noxious event in a disproportionate way in the absence of nerve injury. Meanwhile, Type II is characterized by a burning pain with features of allodynia and hyperpathia in the presence of nerve injury. Type I is more common, and can be attributed to differences in ethnic and socio-economic background.

Over the years, physicians have managed CRPS with physiotherapy and proper diet to alleviate the symptoms. Given the chronic pain the patients experience, many often seek psychiatric appointments to cope with the pain, and avoid long-term anxiety disorders. From a preventative perspective, the use of anti-oxidants is recommended by expert opinion. From our interactions with these patients, it became more evident that handling complications is as important as managing CRPS. A good example is the onset of osteoporosis, which compounds the pain these patients already experience and complicates both the diagnosis and treatment.

Given the chronic pain the patients experience, many often seek psychiatric appointments to cope with the pain.

Unraveling the complex pathophysiology of this condition enables us to develop better treatment methods. Although there has yet to be a successful treatment for CRPS to date, years of research have provided us with many valuable lessons and our understanding of this condition continues to grow. As with any pain-related condition, the patients are very diverse, in their presentation, underlying pathophysiology as well as their response to therapies employed. Hence, future work is still required to elucidate the subgroups of patients who would benefit the most from currently available treatment.

Given the complex nature of this syndrome, it is unlikely that targeting a specific mechanism will be effective. As with other chronic disorders, the future of CRPS treatment may lie in combination therapy and studies investigating this will be necessary. We hope that this update will serve its purpose well in updating the readers of the latest work on CRPS, and enable them to make informed decisions in their clinical approach.


Poor and less educated suffer the most from chronic pain

Poorer and less-educated older Americans are more like to suffer from chronic pain than those with greater wealth and more education, but the disparity between the two groups is much greater than previously thought, climbing as high as 370 percent in some categories, according to new research by a University at Buffalo medical sociologist.

The results, based on 12 years of data from more than 19,000 subjects aged 51 and over, excluding those diagnosed or treated for cancer, provide several kinds of bad news about chronic pain in the United States, according to Hanna Grol-Prokopczyk, an assistant professor of sociology at UB and the paper’s author, published in this month’s issue of the journal Pain.

Chronic pain levels are also rising by period and not just by age, meaning people who were in their 60s in 2010 reported more pain than people who were in their 60s in 1998. “There are a lot of pressures right now to reduce opioid prescription,” says Grol-Prokopczyk. “In part, this study should be a reminder that many people are legitimately suffering from pain. Health care providers shouldn’t assume that someone who shows up in their office complaining of pain is just trying to get an opioid prescription. “We have to remember that pain is a legitimate and widespread problem,” she says.

The study also serves as an argument for investing more into research for other treatments.

“We don’t have particularly good treatments for chronic pain. If opioids are to some extent being taken off the table, it becomes even more important to find other ways of addressing this big public health problem.”

Tens of millions of American adults experience chronic pain. A 2011 Institute of Medicine report (now the National Academy of Science Health and Medicine Division) noted that chronic pain affects more people and costs the economy more money than heart disease, cancer and diabetes combined. Yet most research on the condition has asked only whether people had chronic pain or did not.

Grol-Prokopczyk’s groundbreaking study is among the first to look beyond either the presence or absence of chronic pain to examine instead matters of degree, asking whether the pain was mild, moderate or severe. Her research, based on the Health and Retirement Study, which asked participants if they were “often troubled with pain,” also follows the same subjects over 12 years, as opposed to most studies that illuminate a particular point in time.

“I found that people with lower levels of education and wealth don’t just have more pain, they also have more severe pain,” she says. “I also looked at pain-related disability, meaning that pain is interfering with the ability to do normal work or household activities. And again, people with less wealth and education are more likely to experience this disability.”

People with the least education are 80 percent more likely to experience chronic pain than people with the most. Looking exclusively at severe pain, subjects who didn’t finish high school are 370 percent more likely to experience severe chronic pain than those with graduate degrees.

“If you’re looking at all pain — mild, moderate and severe combined — you do see a difference across socioeconomic groups. And other studies have shown that. But if you look at the most severe pain, which happens to be the pain most associated with disability and death, then the socioeconomically disadvantaged are much, much more likely to experience it.”

More research needs to be done to understand why pain is so unequally distributed in the population, but Grol-Prokopczyk says it’s critical to keep the high burden of pain in mind in this period of concern over the opioid epidemic.

“If we as a society decide that opioid analgesics are often too high risk as a treatment for chronic pain, then we need to invest in other effective treatments for chronic pain, and/or figure out how to prevent it in the first place,” she says.



17 of the Worst Symptoms of Fibromyalgia (and How People Deal With Them)

Fibromyalgia manifests itself in different ways for different patients, but most can agree that all the symptoms are life-altering. It’s not always clear how (or if) they can be treated, and the physical challenges can all too easily turn into emotional challenges as the things you used to do become more and more difficult.

We asked our Mighty community with fibromyalgia which symptoms they consider the worst and how they cope with them. If you’re experiencing these difficult symptoms as well, check out the strategies they use, and don’t forget that you aren’t alone in dealing with the hardships of fibromyalgia.

Here’s what the community told us:

1. “Never-ending fatigue. I’m still trying to figure out what helps, but so far, certain homeopathic medicines are working. My online support group helps tremendously! And there’s always Netflix. Cuddles from my cats help, too!”

2. “When I feel like I’m walking through quicksand. The only thing that helps is to take a break for a day and rest.”

3. “To me, the worst part of fibro isn’t the pain/stiffness or the constant fatigue, it’s my non-existent social life and constantly feeling alone/misunderstood. Even on the awful days, I always find some way to cope or I just lay in bed and whine to my pets. But it’s hard to find a way to ‘cope’ with the loneliness and the depression that follows it.”

4. “The worst is the joint stiffness and joint pain I get, the nausea, and being tired all day and then not being able to sleep at night. I’m a huge fan of the heating pad, and keeping hydrated, and taking my days one day at a time.”

5. “The whole body stiffness as if you’ve worked every bone in your body the day before. No way to deal with the pain, but working out does help…. lessens some of the stiffness. I really notice it more when I don’t do cardio. I tell my family I work out to lose weight, which is true, but it’s more so to help with the stiffness.”

6. “When something always hurts, it’s hard to focus. When you never get good sleep, getting through a work day without a nap is incredibly difficult. I use essential oils to help with both. I make sure I get the best sleep that I can and rest when I can.”

7. “Pain in every part of my body! Some days it even hurts to breath. I pamper myself on those days and do only what is necessary. I save a book I know I will get lost in reading, have a few naps, and try to relax my tight muscles to minimize the pain. I cuddle and pet my dogs a lot, too. I live by myself in the Minnesota up-north woods far away from the noise and stress of living in a city. The quiet and solitude help keep me relaxed.”

8. “For me it’s the cognitive issues. I can hide the pain, but when I can’t form words or get lost in familiar places and see the look of pity on faces of others, I want to cry. I used to be confident and outgoing. Now I just want to hide away.”

9. “Worst symptoms for me are the random hand twitches. I deal with them by making jokes.”

10. “Not having an internal thermostat. I’m rarely just a comfortable temp. Always hot or freezing! I try to dress with layers and know where fans and fresh air are when possible!”

11. “Waking up achy like I hiked 20 miles, feeling like I didn’t sleep at all, and feeling like my head is stuck in the fog. It feels like I’m jet-lagged all the time, walking through quicksand with the body aches of the flu… I try to have a positive attitude about the good parts of my life and manage the best I can.”

12. “The inconsistency. One day you may be feeling relatively good and the next day you are unable to get out of bed. Fibro doesn’t care if you have things to do that day; if it is a bad pain day, it is a bad pain day.”

13. “The worst symptom would have to be my loss of self. I worked hard for the life I had. I was happy. But now I feel like such a burden. No matter how positive I am or how much I smile, I struggle with the constant removal of independence. I’m not sure how to love or even like what I’ve become. I do have amazing support from my partner, and I appreciate it it more than he will ever know. Time together will make a difference. So will finding new happy moments and places.”

14. “The worst symptom is a specific kind of pain; it feels as though I’m being stabbed, in random order, with a red-hot electrified knife all over my body. There’s no relief. All I can do is rub my feet/hands/legs/arms, curl up in a ball and wait for it to pass.”

15. “I have good days and bad days, but on the bad days it feels like every joint in my body is screaming. On those days I take a nice long epson salt bath with bubbles and calm music; it always helps.”

16. “Fibromyalgia flare-ups are the worst. The pain is unbearable and it is felt in every joint, every muscle, every nerve. The fatigue is overwhelming, and sleep is often kept to a minimum since the pain is so severe. Flare-ups happen because of stress, weather, overexertion, and unfortunately, sometimes there’s no reason at all.”

17. “Feeling alone. I have found a great online community, and I cherish the couple understanding friends I have.”




To the Person Who Told Me Fibromyalgia Doesn’t Exist

I may not be able to explain what fibromyalgia is. I’ve heard it’s a muscular thing, a nervous system thing and a genetic thing. But for me, it’s a real thing.

I’ve been dealing with it for the past four years when the symptoms started a few months after my first depressive episode. All of the sudden, at 18, I was exhausted. I had no energy, I found myself sleeping more often and keeping up with life and daily activities were way too much for me.

If I went out one night, I had to spend the rest of the weekend recovering from the exhaustion that it caused. I could sleep for 12 hours and still feel like I’ve been sleep deprived for three months.

And the fatigue — oh, the fatigue. Have you ever felt tired after taking a shower? I have. You can’t imagine how much energy you need to stand up on the shower while using your arms to apply shampoo and wash it all off. It’s an immense effort.

When the shower is finally over, you have to decide what to clothes to wear and put them on. But you’re exhausted, like you just ran 50 marathons. So you just sit on your bed, looking at your closet and wishing tiny fairies would pick up your clothes and dress you while you just rest there.

Clear? OK, let’s continue because we’re far from being over.

Imagine having your skin covered in dark, purple bruises. They’re the kind you get when trip over a desk, and they hurt just by touching them. Yep, those. Now imagine one little kid per bruise, touching it, poking it and pressing it with a tiny but strong little finger — all day long and all over your body.

In addition, imagine your body covered in needles that randomly pressed into your skin. It makes you feel like you have a thorn somewhere in your muscles. As every part of your body is in pain, but you can’t locate the pain, and you aren’t comfortable in any position. Your legs can’t stand being up for a long time, but when you sit down, your back hurts. And when you lie down, your arms hurt.

I forgot the stiffness. Your muscles feel like they were replaced by concrete overnight, and you can barely move. And it hurts. So you have to use your magic gadgets — a cane in my case or a wheelchair for others.

Amazing, I know.

Let’s continue to the cognitive part. In addition to all of that, you start forgetting things. You forget where you are, what you were going to do or what you just said. You have trouble concentrating and your memory sucks.

How could I forget to mention fibromyalgia’s BFFs: depression and anxiety? And this story cannot end without mentioning dry mouth, the swelling of legs and feet, migraines, oversensitivity to light and sound, body temperature issues, horrible menstrual pains, restless legs syndrome and digestive problems. And that’s it for now (that’s all I can remember, anyway).

Sometimes — most of the time, to be honest — you get all of the symptoms together. And there’s no cure for it. None. You can use palliative care in order to live your life in the most “normal” and “functional” way.

So to the person who told me fibromyalgia doesn’t exist, the next time you judge a condition you know nothing about, try talking to the people who live with it daily. More research may be needed for fibromyalgia, but it does exist. I live with it the best way I can, and while I’ll have awesome days when I forget most of the symptoms, there are days in which getting out of bed is physically impossible.

I’m lucky enough to be able to live my life in the most functional way I can by walking with a cane every now and then and canceling plans when needed. But I know people whose lives have been completely impacted by fibromyalgia.

So please, before you say fibromyalgia doesn’t exist, think about having all of these symptoms for just one day.