You’ve probably read about fibromyalgia symptoms such as pain, fatigue and fibro fog, but the list of possible symptoms is far-reaching and body-wide. Those tiny lists don’t even begin to describe our experience! I put together this “monster list” of 60+ symptoms to let you know that you’renotalone! The list is adapted from one put together by fibromyalgia author Devin Starlanyl along with other research.
Knowing the full range of symptoms can help you track them, either to help your doctor reach a diagnosis or to help you identify triggers. It also helps to know you’re not the only person experiencing these!Some of the following are noted as overlapping conditions, which means they commonly occur with fibromyalgia but actually are conditions that need to be diagnosed and treated separately.
10 Ways To Show Someone With Chronic Pain That You Care – We have all been there, had a friend or loved one going through a hard time and we just are unsure what to do for them. We make the offer that if they need anything to let us know, but for whatever the reason, they don’t reach out. Having a friend or family member with chronic pain means there is a long-term need and we want to show we love and care for them and that they are not in this fight alone.
Here are 10 ways to show someone with chronic pain that you care written by someone with chronic pain:
1. The most important thing and way to show you care is being that listening ear when we need it. Unless we are asking for advice, don’t try to fix anything, please just listen. Sometimes we just want and need to vent.
2. Are you going to the store? Call us and ask if you can pick something up for us.
3. Ask if you can come over and clean our house or do some laundry. We may not want you to see our mess, but sometimes we need the extra help.
4. Make a meal or a few freezer meals we can use on our “bad days”. Pizza can get pretty old sometimes and when we don’t feel good enough to cook, we can just pop it in the oven and it’s the best thing ever!
5. Send us a text or mail us a thinking of you card and tell us why we are important to you or share a fun memory.
6. Plan a night in filled with movies, favorite foods, catch up time and memories. Just know we may have to cancel on you or even fall asleep during our “fun” time.
7. Sign us up for a subscription box – Chronically Ally or the Stay Strong Box is a monthly or bi-monthly box filled with items we can find both useful and inspiring.
8. Offer to take us to a doctor appointment or read up on our condition so you can understand what we are going through, but please don’t become a doctor to our condition or believe because one person ate some special food they are now cured. We just want you to understand.
9. Find something inspiring for us – A cute coffee mug with a fun saying, a picture we can look at everyday, a journal we can write in. Something that will remind us how strong we are and to keep going when we are having a hard time.
10. Flowers, plants, or scented candles are always a great gesture as long as none of these trigger headaches. Try looking into buying us a new comfy pair of pajamas or a lounge outfit. Maybe even a new robe or slippers.
Above all, showing someone with chronic pain that you care can come in lots of forms and we are so thankful you stay by our side and continue to show your love for us. Living with chronic pain is never easy, but knowing you’re here and care about us makes it that much easier.
Are you someone with chronic pain? How has someone shown you that they care? Please leave us a comment in the section below.
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Regular readers know I’m very skeptical about the claims of new drugs, especially those advertised on TV with a voice at the end of the commercial reading the side effects at the speed of a tobacco auctioneer (I always listen carefully for “death,” that ultimate side effect).
You’ll see no commercials for either Savella or Xyrem on TV, the first because its manufacturer, Forest Laboratories, doesn’t believe in direct-to-consumer ads. The FDA hasn’t yet approved Xyrem for fibromyalgia, though it will likely get an FDA blessing by year’s end. However, many fibromyalgia physicians are prescribing Xyrem off-label, informing their patients about the pending FDA status. The Xyrem story is especially interesting, I think, but let’s take a look at both drugs.
Used In Europe for Five Years
Savella (milnacipran) has been used in Europe for fibromyalgia for about five years with excellent results. Though they’re largely unaware of it, Europeans are guinea pigs for the American pharmaceutical industry, trying drugs before they’re approved here. Savella acts by raising brain levels of stress-buffering serotonin and a second neurotransmitter, norepinephrine, which is involved in focus and energy. Although milnacipran is a unique molecule, the effect is theoretically similar to combining an SSRI antidepressant (like Lexapro) with a psychostimulant (like the attention-deficit disorder med Adderall).
Normal discussions become problematic because that it feels like you are battling through mist to both process what you are hearing while at the same time attempting to define the proper reaction. You never knew as of not long ago that it really takes vitality to impart and be with individuals. You disappoint yourself as word memory comes up short you and you can’t define explain discussion.
Alongside the majority of this (and a heap of different symptoms I could specify) is the way that your mind and you’re thinking are as foggy as your body. You realize that feeling when it’s past your sleep time and you feel your brain attempting to close down for the night? How everything ends up plainly troublesome in the event that you are battling rest? Attempting to simply complete that part, watch the most recent 10 minutes of that film as your mind needs to rest… Now it feels like that constantly, every minute of the day as your brain is continually attempting to go down as you are attempting to motivate it to go up. Each waking minute is a fight.
Over the time this incurs significant and you begin saying no to things. The energy it takes even to prepare, drive places, get ready for things, turns out to be excessively, and you begin picking and pick what you can do in a day, or even in a week or month as things get worse.
You begin understanding that each action likewise requires recovery time, and one evening out may mean you require two days in bed a short time later.
Your world becomes smaller.
At first every one of the people in your life are supportive, yet over the time and you don’t show signs of improvement in your health, and you have seen this doctor, and that specialist and attempted each recommendation of each friends from acupuncture therapy, to massage, to “this astounding specialist that helped my friend who had a similar issue!” you have perused each article at any point sent to you on any condition that even sounds comparable, you have done insane option things you could never have thought you could ever attempt. Be that as it may, gradually friends begin to drop away, check in less and less, and quit welcoming you to things since they know you will simply say “no.”
Life proceeds onward without you and as the years pass by your reality gets littler and littler and littler until you discover you are separated from everyone else more often than not.
New Finding: New Daith Piercing relieves CM & Fibromyalgia Pain
So I am addressing you, “typical” individual, who I cherish and appreciate. When you see this incessantly sick individual productively posting, “needing consideration,” discussing what they are experiencing openly, and (here and there) going into TMI domain… realize this did not occur incidentally. This is a similar individual you know and love and they are past urgent to be the individual they once were.
They may post on the grounds that:
They need cooperation,
They need companionship,
They need to both hear and be listened,
They require a sounding piece,
They need to feel typical,
They would prefer not to vanish and be overlooked,
They need to have a look at regularity and online might be all they have,
They don’t see individuals much eye to eye so “Face”- book is their life.
Hear me now as I compose this for my wiped out siblings and sisters: Everyone needs individuals! When you are wiped out and segregated, online is your kin!
Keep in mind when I specified the jumbled place of your brain and your feelings brought about by both the physical and mental? This is the place you are currently. You may feel edgy and pitiful and forlorn. Since you don’t see individuals in person so much any longer you may contact your companions on the web; both your certifiable companions and your companions who you met in unending sickness gatherings and such.
I don’t trust we are free wheelers or attention seeker (few of us). I think we are individuals recently like you whose lives have changed and been molded by disease and conditions. All we need is to be typical and sound. We may pine for the seemingly insignificant details that a great many people underestimate, even simply going out for a stroll on a sunny day.
How I Describe Fibromyalgia to People Who Have Never Felt It
One all the more thing I need you to know: Worry about the constantly sick individuals who don’t post and rather remain calm. They might encounter everything the communicators are however disguising their agony as opposed to connecting.
It’s about having an outlet, as opposed to disguising everything. Seclusion, as opposed to connecting. Trustworthiness, as opposed to putting on a glad face. I have seen an excessive number of the “calm one’s” eulogies on the web. If it’s not too much trouble additionally know the uneasiness a man may experience on what to present and what not on post. It is so difficult to judge in light of the fact that (particularly) on an awful day, viewpoints might be topsy-turvey… and the responses from individuals can likewise differ enormously.
You get the constructive input from the ceaseless ailment group: “Thank you such a great amount for sharing, I am not the only one.” “So happy to hear someone else’s point of view.” “Thank you for being straightforward and pioneering a trail for others that will come behind you.” This people group bolsters you and your challenges as you bolster them. Furthermore, this is a sheltered and legit place to be crude and genuine in your seasons of torment.
In any case, you likewise may get the adverse responses of individuals think’s identity a busybody, or are tired of catching wind of your agony, or… (see list at start of post). So you may get the antagonistic criticism, or the stony hush of relatives, or the reprimands and evades of individuals who used to bolster you.
All things considered: why am I posting this? I will reveal to you it’s not for consideration or sensitivity. I need to give a voice to the quiet battling ones. I need to advocate for those whose families don’t trust them. I need to open a window into a world (I trust and ask) you will never encounter with the goal that you can have a superior comprehension of your debilitated companion or relative. So consider elegance and seeing first while experiencing somebody who has been battling for quite a while. We have such a long way to go from each other.
https://www.facebook.com/fibroandchronicpainnews/videos/1443233672413453/This is the Republished Version of Article.Originally written by Jennifer Steidl from The Mighty
When you are diagnosed with any chronic illness, a good doctor should tell you about the symptoms, inform you of the prognosis and offer ideas for treatment or management of the condition. However, fibromyalgia was formally recognized only a few decades ago, and many doctors are still unfamiliar with the illness and how to treat it. Furthermore, it is difficult to truly understand the physical and emotional symptoms a person with fibromyalgia experiences on a daily basis if you haven’t been through it yourself. This can make it hard for doctors to offer patients a full picture of what life with fibromyalgia might look like after diagnosis.
We asked our Mighty community to share some of the things doctors didn’t tell them about fibromyalgia. Let’s raise awareness and improve our understanding of the illness so doctors can better prepare their patients for the road ahead.
Here’s what the community told us:
1. “They don’t really understand fibro. It varies so much from person to person, and treatment plans are different for everyone, so there are lots of things doctors don’t know about this condition yet.”RELATED STORIES
2. “You [might] lose friends because you can’t go to every event you used to. But the friends you do keep are amazing and super understanding.”
3. “I actually had a great doctor when I was diagnosed because his wife has it as well. He told me the good, the bad and the ugly. He did also admit that most doctors including himself don’t fully understand it like they should.”
4. “They won’t [always] take other health issues seriously because ‘it’s probably just a symptom of fibromyalgia.’”
5. “There will be people who don’t believe/don’t care about your pain and exhaustion. You [might] have to hide the fact that you are even sick to protect yourself.”
6. “I have yet to have a doctor believe me. They always say I’m too young.”
7. “Most doctors don’t know enough about fibromyalgia to be able to treat it. They didn’t have answers as to why I have so many symptoms or how to manage them. I learned to keep up with current research to educate my doctors and be my own advocate. I learned to pace my activities, and rest when I needed. I learned to trust my instincts more, and not care about offending family, friends or providers with my answers and actions.”
8. “They don’t tell you about the emotions you will have to deal with every single day, the grief for the person you used to be, the guilt you’ll feel every time you let someone down and cancel plans, the fear of the future and the feeling of being a burden to your family. No one emotionally prepared me for life with fibro.”
9. “It affects everything. More than just your body. It will affect your social life, your work life, your love life, etc.”
10. “Every person responds to treatment differently. You have to become your own advocate and search out any and all treatments to see if they work for you.”
11. “They don’t tell you sensory overload is a thing and every sound, flashing light and smell can affect you on good days and bad.”
12. “Doctors don’t tell you how hard it will be to do everyday tasks.”
13. “They don’t tell you how likely you are to have other problems because you have fibromyalgia, such as irritable bowel syndrome (IBS), restless legs syndrome (RLS) or anxiety. They don’t realize how hard it is to have this illness.”
14. “Most won’t tell you to find a rheumatologist who specializes in chronic conditions like fibromyalgia; the specialists cost more to visit, but they are knowledgeable about the condition. Also, do your own research on the condition, symptoms and treatments. At the end of the day, you are your best advocate; empower yourself with knowledge any way you can.”
15. “You will never have good quality sleep and will always be tired. You will have a hard time focusing/concentrating on simple tasks which will seem overwhelming at best.”
16. “Meds don’t [always] work, but meditation, music therapy, art and sleep are your best friends!”
17. “I would constantly be questioned by everyone about the validity of my pain, my diagnosis and my treatment plan.”
18. “Some people can get better with natural remedies. Drugs are not the only way to go. I’m not saying natural remedies will cure you. But they can possibly help relieve your symptoms. This may require a total lifestyle overhaul. But anecdotal stories of improvement abound.”
19. “[They don’t prepare you for] the look of confusion and disappointment in your child’s eyes when you tell them you’re too tired or in pain to play with them.”
20. “What is a 10 today [might] be a seven tomorrow because that pain threshold – where you couldn’t possibly take anymore – it keeps shifting and it only goes up.”
21. “There’s a grieving period that differs for everyone… Grieving our former life, emotionally, physically and psychologically. Depression and anxiety happen and can exasperate flares. It is a life-changer, but not a life-ender. Take your time to grieve, then move forward. Find solid support and be honest with yourself and others. It will be OK.”
When a cervical disc starts losing hydration and stiffening, there are several ways in which neck pain and associated symptoms can develop. Here are the common ones.
Pain from a Degenerating Disc
Most people who have a disc tear do not experience pain from it. The exact reason is unknown, but most experts suspect it has something to do with how the disc’s innervation and pain sensory can vary from person to person. For example, some people might have nerves that naturally go deeper into the disc, while some people might simply have a higher threshold for sensing pain.
When a degenerating disc causes neck pain, it is likely from one or both of the following:
Discogenic pain. This pain occurs in the disc itself and can range from mild to severe. The disc’s gel-like interior, called the nucleus pulposus, contains proteins that can cause painful inflammation if they come in contact with nerves located in the outer layer of the disc.
In a healthy adult cervical disc, nerves only go into the outer third of the disc’s protective outer layer, called the annulus fibrosus. However, if the disc’s outer layer gets a tear, then nerves can start to grow deeper into the disc in an attempt to heal itself. The soft inner portion of the disc can leak into the outer rings and come into contact with the small nerves, which can become painful. Some studies have even shown nerves growing all the way into the center of the nucleus pulposus in a painful disc that had gone through significant degeneration.
Micro-motion instability. When the disc’s tough outer layer wears down and no longer provides adequate shock absorption and stability, the vertebrae above and below the disc may move more than usual and surrounding muscles can go into painful spasms in an attempt to limit that abnormal movement.
Pain from a degenerating disc can range anywhere from a dull ache to something so intense that it limits movement and activities. In most cases, the pain will subside within a few weeks or months as chemical inflammation of the disc material starts to subside, and/or the disc stabilizes into it new stable position.
Other Conditions Associated with a Degenerating Disc
Cervical degenerative disc disease is often present with other spinal conditions, either developing at the same time or in some cases one causes the other. Some common examples include:
Herniated Cervical Disc. A degenerating disc can have its nucleus wedge into tears in the annulus fibrosus. If the nucleus pulposus eventually passes through the annulus fibrosus, then the disc is considered herniated.
Conversely, a traumatic injury, such as a fall, or other issues could cause a herniated disc that eventually speeds up the disc’s degeneration and leads to cervical degenerative disc disease.
Cervical osteoarthritis. As the disc degenerates and the disc space within the vertebral column starts to collapse, the facet joints may abnormally move or sublux and cause wear of the cartilage, as well as develop bone spurs in the neck.
Cervical spinal stenosis. This condition occurs when there is a narrowing of the spinal canal (where the spinal cord runs through) or foramina (where the spinal nerve runs through), due to bone spurs, as described in the arthritis scenario above.
As an example, disc degeneration could eventually lead to osteoarthritis, which could eventually lead to spinal stenosis. For some patients, they are born with a congenital form of cervical stenosis and do not need to have disc degeneration to develop symptoms.
Cervical radiculopathy—symptoms of pain, tingling, numbness, and/or weakness radiating down the shoulder into the arm and hand—can result when one or more of the neck’s spinal roots becomes pinched or irritated. For example, a herniated disc or bone spur could pinch a nerve root in the C6-C7 segment that might cause weakness in the triceps and forearms, wrist drop, and altered sensation in the middle fingers or fingertips.
If the spinal cord at the neck level becomes compressed by spinal stenosis, such as from bone spurs or a disc bulge, then myelopathy can develop. Possible symptoms of pain, tingling, numbness, and/or weakness could be felt at that level in the neck and anywhere below. For example, a person could have tingling or weakness in the legs, balance problems, or even difficulty with bowel and bladder control.
It is important to get a medical evaluation if there are symptoms of myelopathy, as the condition may progress and without treatment it is possible to eventually develop paralysis of multiple limbs and body functions.
If pain and symptoms from cervical degenerative disc disease intensify, steps can be taken to help alleviate the problem. The first steps are usually self-care and/or non-surgical treatment options, and typically these will effectively manage the pain.
For neck pain stemming from cervical degenerative disc disease, a doctor will typically recommend one or a combination of the following treatment options:
Rest or lifestyle modification. Certain activities might be more painful for the neck, such as craning the neck forward to look at the computer monitor or a specific swimming stroke. Refraining from or modifying certain activities for a few days or weeks will usually reduce the pain. In addition, maintaining strong posture(instead of slouching while sitting or flexing the neck forward while driving, looking at a cell phone, etc) is recommended. Eating healthy, staying hydrated, and quitting smoking are also all beneficial for disc health.
Pain management with medication or injections. Over-the-counter pain relievers, such as acetaminophen (such as Tylenol), ibuprofen (such as Advil, Motrin), or others might be beneficial. If not, a stronger pain medication, such as oral steroids or muscle relaxants (such as Vicodin) may be prescribed. Other options could include an injection that delivers medication directly to a certain part of the neck, such as a cervical epidural steroid injection or a cervical facet injection.
Exercise and/or physical therapy. Most non-surgical treatment programs for neck pain will include some form of exercise and stretching. A physical therapist or other trained health professional can prescribe an exercise and stretching regimen that meets the specific needs of the patient. In general, increasing strength and flexibility in the neck can lower the risk for pain.
Manual manipulation. The cervical spine can be manually adjusted by a chiropractor or other qualified health professional in an effort to improve range of motion and/or reduce pain. Depending on the person’s symptoms, a physical exam and/or imaging study should be done prior to manual manipulation of the neck.
The above list does not include all treatment options for pain related to cervical degenerative disc disease. Many other options could be considered as well, such as massage therapy, electrical stimulation (TENS unit), bracing, or acupuncture.
Surgery to treat cervical degenerative disc disease is generally considered in two cases:
Neurological symptoms are present, such as persistent arm numbness and/or weakness, or trouble with walking or bowel control. If neurological symptoms are caused by cervical DDD there is a risk of permanent nerve damage, and surgery may be recommended to alleviate pressure on the nerve.
Chronic pain is severe and not adequately relieved after at least six months of non-surgical treatments, and daily activities become difficult. Better surgical results are predicted for patients with chronic pain coupled with other findings such as cervical instability, and/or radiculopathy.
The two most common types of surgery for cervical degenerative disc disease are:
Anterior cervical discectomy and fusion (ACDF). This procedure is done through the front of the neck and involves removing the problematic disc, decompression of the nerve root, and insertion of a bone graft or a metal cage device to help maintain or reestablish the normal height of the disc space.
If there are neurological symptoms from spinal cord compression, the surgery may also include removing part of a vertebra or widening the spinal canal to give more space for the spinal cord before the fusion is done.
Cervical artificial disc replacement. This surgery involves removing the problematic disc and replacing it with an artificial disc. The goal of this surgery is to preserve motion at that spinal level. Artificial disc replacement results may be better in patients with minimal arthritic changes to the posterior facets.
For relieving pressure on nerve roots and/or the spinal cord and thus reducing neurological symptoms like arm pain or weakness, neck surgery tends to have a good success rate—some estimates in literature are between 80% and 90%.4
However, neck surgery has a lower success rate for relieving pain that is only in the neck itself.4 If the disc space cannot be verified as the probable pain generator, it may be reasonable to avoid surgery and keep trying various types of non-surgical care to manage the pain.
Thank you for understanding my depression. This is the single most important thing you did that helped me survive. Having someone understand, even just slightly understand that depression is a real illness, means so much. You understood I wasn’t being “lazy,” “attention seeking” or “selfish,” like many people accuse those who are struggling with depression of being. You understood all of my actions and thoughts were out of my control.
Thank you for helping me with my daughter. Not being able to take care of myself was bad enough, but I had a little human being who needed me as well. I was unable to care for her because I couldn’t care for myself. You stepped in, above and beyond, to make sure she and I were both taken care of. You put us both above yourself without accusing me of being a bad mother or not loving her. You understood I was sick and I needed help for that period of time.
Thank you for letting me stay in bed all day when I couldn’t move and for bringing me toast and crackers to force feed me when I was unable to eat. Thank you for making me get up and shower because I needed that push, even though I was angry at you at the time. I know you were just helping me to get better.
Thank you for standing up for me when family and friends didn’t quite understand “what was wrong with me.” Many people will never understand that depression is out of a person’s control, but you did your best to try and make them understand what I was going through.
Thank you for never turning your back on me, even when the depression made me turn my back on everyone, including you. I isolated myself. In my head, it was what was best for you and everyone who loved me because I didn’t want you all to see me in the condition I was in. When I came out of isolation, you brought me in with open arms and kind words. I didn’t feel like I deserve that, but you did it.
Thank you for taking me to my doctor’s appointments, reminding me to take my medication and listening to me when I wanted to talk. Thank you for getting into bed with me and holding me as I cried for hours because that was exactly what I needed.
Thank you for never giving up on me, even though this depressive episode lasted 119 days. I am in recovery, and I still have “off” days, but you never gave up on me, even when I had given up on myself.
Mom, I couldn’t have survived this without you. I will be forever grateful for that. I know now to come to you as soon as I need to and not to hold everything in. I know you will always be there. I am so blessed to have you as my mom and number one supporter.
By CASEY ROSS @byCaseyRoss, MAX BLAU @maxblau, and KATE SHERIDAN @sheridan_kate,MARCH 7, 2017Illustration byMOLLY FERGUSON FOR STAT
They’re among the nation’s premier medical centers, at the leading edge of scientific research.
Yet hospitals affiliated with Yale, Duke, Johns Hopkins, and other top medical research centers also aggressively promote alternative therapies with little or no scientific backing. They offer “energy healing” to help treat multiple sclerosis, acupuncture for infertility, and homeopathic bee venom for fibromyalgia. A public forum hosted by the University of Florida’s hospital even promises to explain how herbal therapy can reverse Alzheimer’s. (It can’t.)
This embrace of alternative medicine has been building for years. But a STAT examination of 15 academic research centers across the US underscores just how deeply these therapies have become embedded in prestigious hospitals and medical schools.
Some hospitals have built luxurious, spa-like wellness centers to draw patients for spiritual healing, homeopathy, and more. And they’re promoting such treatments for a wide array of conditions, including depression, heart disease, cancer, and chronic pain. Duke even markets a pediatric program that suggests on its website that alternative medicine, including “detoxification programs” and “botanical medicines,” can help children with conditions ranging from autism to asthma to ADHD.
“We’ve become witch doctors,” said Dr. Steven Novella, a professor of neurology at the Yale School of Medicine and a longtime critic of alternative medicine.
STAT’s examination found a booming market for such therapies: The clinic at the University of California, San Francisco, is growing so fast, it’s bursting out of its space.
Just in the past year, the teaching hospital connected to the University of Florida began offering cancer patients consultations in homeopathy and traditional Chinese herbal medicine. Thomas Jefferson University in Philadelphia launched an institute whose offerings include intravenous vitamin and mineral therapies. And the University of Arizona, a pioneer in the field, received a $1 million gift to boost practitioner training in natural and spiritual healing techniques.
“[If a hospital is] offering treatment that’s based on fantasy, it undermines the credibility of the institution.”
STEVEN SALZBERG, JOHNS HOPKINS
Even as they count on these programs to bring in patients and revenue, several hospitals were reluctant to talk to STAT about why they’re lending their distinguished names to unproven therapies.
Duke Health declined repeated requests for interviews about its rapidly growing integrative medicine center, which charges patients $1,800 a year just for a basic membership, with acupuncture and other treatments billed separately.
MedStar Georgetown quietly edited its website, citing changes to its clinical offerings, after a reporter asked why it listed the energy healing practice of reiki as a therapy for blood cancer. Cleveland Clinic struggled to find anyone on its staff to defend the hospital’s energy medicine program, ultimately issuing a statement that it’s “responding to the needs of our patients and patient demand.”
The rise of alternative therapies has sparked tension in some hospitals, with doctors openly accusing their peers of peddling snake oil and undermining the credibility of their institutions.
By promoting such therapies, Novella said, physicians are forfeiting “any claim that we had to being a science-based profession.”
As for patients? They’re “being snookered,” he said.
Online promotions with little room for nuance
The counterargument: Modern medicine clearly can’t cure everyone. It fails a great many patients. So why not encourage them to try an ancient Indian remedy or a spiritual healing technique that’s unlikely to cause harm — and may provide some relief, if only from the placebo effect?
“Yes, as scientists, we want to be rigid. But me, as a physician, I want to find what’s best for a patient. Who am I to say that’s hogwash?” said Dr. Linda Lee.
A gastroenterologist, Lee runs the Johns Hopkins Integrative Medicine and Digestive Center, which offers acupuncture, massage therapy, and reiki — a therapy that the center’s website describes as laying on hands “to transmit Universal Life Energy” to the patient.
Lee and others who promote alternative therapies are careful to say that they can supplement — but can’t replace — conventional treatments. And they make a point of coordinating care with other doctors so that, for instance, patients don’t get prescribed herbal supplements that might interact badly with their chemotherapy.
“Yes, as scientists, we want to be rigid. But me, as a physician, I want to find what’s best for a patient. Who am I to say that’s hogwash?”
DR. LINDA LEE, JOHNS HOPKINS GASTROENTEROLOGIST
“Here at UF, we do not have alternative medicine. We do not have complementary medicine. We have integrative medicine,” said Dr. Irene Estores, medical director of the integrative medicine program at the University of Florida Shands Hospital in Gainesville, Fla.
But while those cautions may come through in the clinic, the hospitals also promote alternative medicine online — often, without any nuance.
Duke’s Integrative Medicine store, for instance, sells “Po Chai Pills” that are touted on the hospital’s website as a cure for everything from belching to hangovers to headaches. The site explains that taking a pill “harmonizes the stomach, stems counterflow ascent of stomach qi, dispels damp, dispels pathogenic factors, subdues yang, relieves pain.” None of that makes sense in modern biomedical terms.
Thomas Jefferson University Hospital’s website touts homeopathic bee venom as useful to relieve symptoms for arthritis, nerve pain, and other conditions. The site does tell patients that the biological mechanism for the treatment is “unexplained” but asserts that studies “have been published in medical journals showing homeopathic medicines may provide clinical benefit.”
Asked about the therapy, Dr. Daniel Monti, who directs the integrative health center, acknowledged that the data is “largely anecdotal,” and said the hospital offers the treatment only rarely, “when there are few other options.” But those caveats don’t come through on the website.
Novella gets alarmed when he sees top-tier hospitals backing therapies with scant evidence behind them. “Patients only want [alternative medicine] because they’re being told they should want it. They see a prestigious hospital is offering it, so they think it’s legitimate,” said Novella.
“The perpetuation of these practices is a victory of marketing over truth,” said Steven Salzberg, a biomedical engineer at Johns Hopkins who lectures in the medical school. If a hospital is “offering treatment that’s based on fantasy, it undermines the credibility of the institution.”
The debate burst into the public view earlier this year when the medical director of the Cleveland Clinic’s Wellness Institute — which markets a variety of alternative therapies — published an article raising discredited theories linking vaccines to autism.
Cleveland Clinic’s chief executive, Dr. Toby Cosgrove, disavowed the article. And the clinic told STAT last week that it will take down its online wellness store and stop selling homeopathy kits.
But Cosgrove has stood up for the general principle of offering alternative treatments.
“The old way of combating chronic disease hasn’t worked,” Cosgrove wrote in a column posted on the hospital’s website. “… We have heard from our patients that they want more than conventional medicine can offer.”
A booming market for ‘natural’ therapies
There’s no question that patients want alternative medicine. It’s a $37 billion-a-year business.
The typical American adult spent about $800 out of pocket in 2012 on dietary supplements and visits to alternative providers, such as naturopaths and acupuncturists, according to the federal Centers for Disease Control and Prevention.
Hospitals have taken note. A national consortium to promote integrative health now counts more than 70 academic centers and health systems as members, up from eight in 1999. Each year, four or five new programs join, said Dr. Leslie Mendoza Temple, the chair of the consortium’s policy working group.
In most cases, insurers won’t cover alternative therapies — there’s simply not enough evidence that they actually work — so patients pay out of pocket: $85 for acupuncture, $100 for reiki, $38 for pills made from thyme and oregano oils that promise to “harmonize digestive and respiratory function.”
To be sure, not all such integrative medicine clinics are big profit centers. Many are funded by philanthropists, and some hospitals say their programs operate at a loss — but are nonetheless essential to woo patients in a highly competitive marketplace. If they failed to offer “natural” therapies, some hospital executives fear they would lose a chance to attract patients who need more lucrative care, such as orthopedic surgeries or cancer treatments.
The integrative medicine center at Thomas Jefferson, for instance, is part of an “enterprise strategy for growth and development,” Monti said.
“The people running the hospitals are doctors, but they also have MBAs. They talk of patients as customers. Customers have demands. Your job is to sell them what they want,” said Arthur Caplan, a bioethicist at New York University’s medical school. Too often, he said, the attitude is, “We’re damn well going to do it if the guys down the street are doing it.”
“We’ve become witch doctors … [forfeiting] any claim that we had to be a science-based profession.”
DR. STEVEN NOVELLA, YALE SCHOOL OF MEDICINE
While most hospitals declined to give specific revenue figures, STAT found indications of rapid growth.
“We’re literally bursting. We have to convert office space to clinic exam rooms,” said Shelley Adler, who runs the Osher Center for Integrative Medicine at the University of California, San Francisco. It offers a wide range of services, including Chinese herbal medicine, massage therapy, and Ayurveda, an ancient healing system from India based on the belief that health results from a balance between the mind, body, and spirit.
The center is on pace to get more than 10,300 patient visits this fiscal year, up 37 percent from 2012. It’s expanding its clinical staff by a third.
The center’s membership count also jumped, up 25 percent to 885, Perlman said. If all members paid the list price, that would bring in more than $1 million a year just for primary care.
At the University of Pittsburgh’s Center for Integrative Medicine, meanwhile, “our volume pretty much has increased steadily, even when we’ve had recessions and financial downturns,” said Dr. Ronald Glick, the medical director. The center now treats about 8,000 patients a year.
Many hospitals have also expanded into more general “wellness” offerings, with classes in healthy cooking, tai chi, meditation, and art therapy. UCSF offers a $375 class on “cultivating emotional balance” (and a free class on “laughter yoga”). Mayo Clinic sells a $2,900 “signature experience,” which includes consultations with a wellness coach.
And the Benson-Henry Institute for Mind Body Medicine at Massachusetts General Hospital offers specialized stress management services to help patients deal with conditions including cancer, infertility, and menopause. John Henry, the owner of STAT, has contributed funding to the Benson-Henry Institute.
Wellness programs — which are designed to ease stress and encourage healthy behaviors — are seen by many clinicians and hospitals as key to slowing America’s epidemic of chronic disease. They don’t tend to draw sharp criticism, except for their cost.
It’s the alternative therapies promoted as a way to treat disease that raise eyebrows.
‘Energy healing’ takes root
Despite their deep wells of medical expertise, many top hospitals are offering to help treat serious medical problems with reiki — a practice based on the belief that lightly touching patients can unleash a cosmic energy flow that will heal them naturally.
STAT found that it is widely used by academic medical centers, including Johns Hopkins, Yale, the University of Pennsylvania, and Spaulding Rehabilitation Hospital, part of Partners HealthCare in Boston.
So, where’s the evidence supporting it?
There is none, according to a division of the National Institutes of Health that funds research into alternative medicines. It says the practice has not been shown to be useful for “any health-related purpose” — and adds that there is no scientific evidence that the “natural healing energy” it’s based on even exists.
Asked about the Cleveland Clinic’s promotion of reiki, Dr. Richard Lang, the recently named interim director of the clinic’s Wellness Institute, said he hadn’t had a chance to think about it. “I don’t know that I could give you a plus or minus on that,” he said. Lang served as a vice chair of the wellness institute for nearly a decade before taking the top post.
“[Hospital executives] talk of patients as customers. Customers have demands. Your job is to sell them what they want.”
ARTHUR CAPLAN, BIOETHICIST AT NEW YORK UNIVERSITY
Pressed for a more substantive answer, the clinic sent a statement saying it offers energy medicine as a complementary therapy, not as a replacement solution. But its website only briefly alludes to a patient’s broader “care team” in describing a “full range of emotional and physical issues” that can be treated with energy therapies, including autoimmune diseases, migraines, hormonal imbalances, and “cancer treatment support and recovery.”
Academic medical centers often boast that they’re more rigorous in evaluating alternative therapies — and weeding out scams — than a for-profit wellness center might be.
“The important thing about practicing in an academic center is that we must hold ourselves to certain standards,” said Estores, the medical director at the University of Florida’s integrative medicine clinic.
At the University of Pittsburgh, Glick echoed that sentiment: “We’re an academic institution … [so] we’re offering services that have greater evidence basis [and] scientific explanation.”
But that evidence isn’t always rigorous.
The University of Florida, for instance, is using Facebook to advertise an herbal medicine workshop for providers and the public that promises to answer questions including, “How can we stabilize or reverse Alzheimer’s disease?”
Asked about the evidence for that statement, Susan Marynowski, the herbalist presenting the workshop, cited several papers and a book chapter that she said showed herbs, in conjunction with lifestyle adjustments, could reverse Alzheimer’s-associated memory loss. However, at least two papers were small collections of case studies published in a journal with a reputation for less-than-rigorous review. (Marynowski said she knew the studies’ size and design limited the strength of their conclusions, but that she was not aware of the journal’s reputation.)
At Pittsburgh, the integrative medical center does take care to note on its website that alternative therapies “generally have not been subjected to the same level of research as standard medical approaches.”
But the site then goes on to promote dozens of treatments for everything from ADHD to whiplash, saying they have “appeared to be beneficial in this and other complementary medicine clinics.” (Glick noted that the body of research had grown since he wrote the caveat on the website in 2003.)
‘It’s not black and white’
Perhaps the most prevalent alternative treatment STAT found on offer is acupuncture. It’s promoted for more than a dozen conditions, including high blood pressure, sinus problems, infertility, migraines, and digestive irregularities.
A 3,000-year-old Chinese therapy, acupuncture is based on the belief that by stimulating certain points on the body, most often with needles, practitioners can unlock a natural healing energy that flows through the body’s “meridians.” Research suggests it helps with certain pain conditions and might help prevent migraine headaches — but it also suggests that the placebo effect may play an important role.
Its value in treating other conditions is uncertain, according to the NIH’s center on integrative medicine.
Several major insurers, including Aetna, Anthem, and regional Blue Cross Blue Shield affiliates, cover acupuncture as a treatment for chronic pain and nausea. But the Centers for Medicare and Medicaid Services won’t pay for acupuncture, dismissing the scientific evidence as insufficient.
Still, it’s important for physicians to keep an open mind, said Lang, the interim director of the Cleveland Clinic Wellness Institute.
He said, for example, that he used to avoid referring patients for acupuncture, until he saw the benefit it provided to some of them. “I have seen it work in some chronic pain situations,” said Lang. “It can be very helpful. If it doesn’t work, I don’t know that you’ve lost anything. If it does, you do get to a better place.”
“If it doesn’t work, I don’t know that you’ve lost anything. If it does, you do get to a better place.”
DR. RICHARD LANG, CLEVELAND CLINIC
And while the evidence of its efficacy is not ironclad, neither is the evidence for various pharmaceutical therapies that are routinely provided by hospitals and covered by insurance. Some of those solutions, such as opioids to treat pain, have resulted in addiction and harm to patients.
Advocates of alternative medicine say it’s difficult to test some alternative therapies through rigorous clinical trials, primarily because treatment techniques vary from patient to patient. (The federal government does, however, spend roughly $120 million a year to fund research through the NIH National Center for Complementary and Integrative Health.)
They note, too, that traditional doctors sometimes stray from proven treatments, for instance when they prescribe medicines off-label for conditions the drugs have not been approved to treat.
“We do use things that aren’t necessarily 100 percent evidence-based, but I would argue that’s also true within all of medicine,” said Dr. Jill Schneiderhan, co-director of the University of Michigan’s integrative family medicine program. “I feel like it’s not black and white.”
We asked members of the Buzzfeed Community who deal with chronic pain to share the little ways they take care of themselves. Here’s what they had to say.
FYI: These aren’t meant to be a substitute for medical advice; they’re tactics that have worked for others and might work for you, too. Be sure to check with your doctor before trying anything new for your chronic pain.
1.Prepare some YouTube or Spotify playlists for those inevitable times when you need a distraction from the pain.
2.Revamp your wardrobe with comfortable clothes.
3.Write down the activities you can do at different pain levels — both for yourself and others.
4.Wake up early so you can prepare for the day slowly.
5.Take up journaling so you have a place to vent.
6.Or open up to someone you trust, so that you don’t have to keep it all to yourself.
7.Embrace the magic of a really, really good bath.
8.Give yoga a try.
9.Exercise in the water for a lower-impact workout.
10.Use tennis balls or other tools to work your muscles at home.
11.Figure out the best ways to relax so you can keep your stress levels down.
12.See a doctor who specializes in pain management.
13.Stock up on all the heated things — pads, mattress toppers, jackets, car seats, whatever.
14.And invest in a blanket that will be your new best friend.
15.Utilize wheelchairs and other mobility aids when you need them.
16.Get comfortable saying “no” without beating yourself up.
17.Join a support group to connect with people who actually get it.
18.Pick up an artistic hobby that can serve as a distraction or self-care act.
19.Consider getting a pet.
20.Don’t get just any old massage — seek out one designed to help your pain.
21.Don’t be afraid to try more ~alternative~ treatment methods like acupuncture and cupping.
22.Try out a wearable unit for pain, like a TENS (Transcutaneous Electrical Nerve Stimulation) unit.
23.Ask other people with chronic pain for advice whenever you can.
24.Give yourself permission to ditch the brave “I’m okay” face.
A key region of our brain’s reward circuit can be rewired by chronic pain, according to a new study. Although only demonstrated in mouse models of disease so far, encouragingly the study found that a combination of two FDA-approved drugs was able to restore harmony in this region and reduce the animals’ symptoms. The discovery could therefore point us towards a new strategy for treating or perhaps even preventing chronic pain, a condition that affects around 20 percent of the global population.
The brain region this study was concerned with is called the nucleus accumbens (NAc), located in our basal forebrain. Whenever we engage in pleasurable activities, like eating, having sex, or taking drugs, a bundle of neurons that projects to the NAc fires, flooding this area with the chemical dopamine. It’s this response to rewarding behaviors that is the main reason the NAc has been implicated in addiction. But pleasure isn’t all the NAc is concerned with: It’s long been proposed to have an involvement in the representation of pain. For instance, studies have indicated that one of the NAc’s two main components, the shell, might be involved in the evaluation of impending pain.
Although a well-studied area of the brain, much research has neglected to examine how the NAc actually responds to pain, knowledge of which could potentially lead us down new treatment avenues. Researchers from Northwestern University in Illinois therefore decided to look into this further, using rodent models of neuropathic pain – chronic pain that’s normally associated with damage to the nervous system. These rodents were also engineered to produce red and green marker molecules in the neurons that make up the NAc’s pathways, so that changes could be monitored.
Described in Nature Neuroscience, the team found that following nerve injury, neurons in the rodents’ NAc became more excitable – basically easier to fire. Furthermore, the neurons displayed altered connectivity, showing stronger connections with other brain regions within just a few days following the injury that culminated in a chronic pain-like state.
“The study shows you can think of chronic pain as the brain getting addicted to pain,” study author A. Vania Apkarian said in a statement. “The brain circuit that has to do with addiction has gotten involved in the pain process itself.”
Connections between neurons become altered in the NAc following injury. nobeastsofierce/Shutterstock
Interestingly, the team actually found that this remodeling of the NAc was linked with a dip in dopamine levels, indicating that altered dopamine signaling is involved. A commonly used Parkinson’s drug, L-DOPA, works by boosting dopamine levels in the brain, so the team reasoned that this could be an effective way to reverse these changes. Indeed, when combined with a pain medication, a non-steroidal anti-inflammatory called naproxen, the injured animals stopped displaying behaviors of chronic pain. Additionally, a drug that stimulates dopamine neurons was also found to exert a similar effect.
“It is remarkable that by changing the activity of a single cell type in an emotional area of the brain, we can prevent the pain behavior,” study author Marco Martina said in the statement.
Perhaps unsurprisingly, these treatments were most effective when administered relatively soon after injury, so the team is now planning a clinical trial to see if similar regimens can help humans suffering from chronic pain. And that could be a significant development, given that most current therapies aren’t that effective.