Living With Chronic Pain Like Lady Gaga
- A new study has found that adults across the U.S. are developing cases of persistent chronic pain at higher rates than new cases of other conditions, like depression, diabetes, and high blood pressure.
- The National Institutes of Health surveyed more than 10,000 people between 2019 and 2020 and found that there were 52.4 new chronic cases per 1,000 persons each year.
- This important data shows that singer Lady Gaga, and other celebrities like singer Sinead O’Connor and actor Morgan Freeman, are not alone in their pain.
- Lady Gaga deals with fibromyalgia, a condition that causes pain all over the body, sleep problems, fatigue and often emotional and mental distress.
- According to John Hopkins Medicine, chronic pain is defined as “long-standing pain that persists beyond the usual recovery period or occurs along with a chronic health condition, such as arthritis.”
The new findings, from the National Institutes of Health (NIH) and published in the journal JAMA Network Open, surveyed more than 10,000 people between 2019 and 2020 and found that there were 52.4 new chronic cases per 1,000 persons each year.
Read MoreThis important data highlights the prevalence of chronic pain for the country and need for ways to help them manage it.
Coping With a Health Condition
“The onset of any chronic condition is a pivotal moment and early intervention can make a significant difference in the toll that the condition takes on the individual,” NCCIH director Helene M. Langevin, M.D., stated.
Lady Gaga’s Journey With Pain & How She Managed
This new study shows that 37-year-old actress and singer Lady Gaga, along with other famous people like singer Sinead O’Connor and actor Morgan Freeman, aren’t alone with the chronic pain they’ve been dealing with.
Lady Gaga, also known by her real name Stefani Joanne Angelina Germanotta, suffers from fibromyalgia, a condition that causes pain all over the body, sleep problems, fatigue and often emotional and mental distress.
The “Born This Way” singer announced her diagnosis on Twitter in 2017, writing, “In our documentary the #chronicillness #chronicpain I deal w/ is #Fibromyalgia I wish to help raise awareness & connect people who have it.
“Thought ice helped #Fibromyalgia. I was wrong & making it worse. Warm/Heat is better. Electric Heated Blanket, Infrared Sauna, Epsom Baths,” Lady Gaga added.
She opens up about her experience in her Netflix documentary, “Gaga: Five Foot Two,” which follows the superstar leading up to her Super Bowl performance.
“I'm fing strong and I can still be me, but it doesn't mean I'm not still in pain,” she said in the documentary.
“I get so irritated with people who don't believe fibromyalgia is real. For me, and I think for many others, it's really a cyclone of anxiety, depression, PTSD, trauma, and panic disorder, all of which sends the nervous system into overdrive, and then you have nerve pain as a result,” Lady Gaga told Vogue in 2018.
“People need to be more compassionate. Chronic pain is no joke. And it's every day waking up not knowing how you're going to feel.”
Despite her hardships, Lady Gaga admitted to Vogue that “it's getting better every day. Because now I have fantastic doctors who take care of me and are getting me show-ready.”
What Is Chronic Pain?
According to John Hopkins Medicine, Chronic pain is defined as “long standing pain that persists beyond the usual recovery period or occurs along with a chronic health condition, such as arthritis.”
“Chronic pain may be ‘on’ and ‘off’ or continuous. It may affect people to the point that they can’t work, eat properly, take part in physical activity, or enjoy life,” the medical institution says, dubbing this type of pain a
“major medical condition that can and should be treated.”
This type of pain could have many causes, either stemming from an injury or illness, or ongoing pain from something such as cancer or arthritis.
Chronic pain is usually treated well with symptom relief and support. If you’re experiencing a pain that doesn’t seem to go away, there are pain management programs that exist,
Pain management rehabilitation teams may be accessible in hospitals, rehab facilities, and pain clinics.
The following professionals are able to assist with pain treatment, depending on what the pain is: neurologists, orthopedists, anesthesiologists, oncologists, physiatrists, nurses, physical therapists, occupational therapists, psychologists, psychiatrists, social workers, case managers, and vocational counselors, John Hopkins explains.
Ways to manage pain could include:
- Over-the-counter (OTC) medicines, prescription pain medicines, and prescription antidepressants
- Heat and cold treatments
- Massage and whirlpool treatments
- Exercise
- Electrical stimulation
- Injection therapies
- Emotional and psychological support for pain (stress management, meditation, relaxation training, etc.)
- Surgery
- Acupuncture
If you’re experiencing chronic pain and are unsure how to feel better, make sure to talk with your doctor on what steps you should take for pain management.
How To Seek Help
While National Cancer Institute Chief of Surgery Dr. Steven Rosenberg specializes in cancer, his advice on pushing for multiple professional opinions can also apply to chronic pain sufferers.
As we highlight in several areas of SurvivorNet, highly respected doctors sometimes disagree on the right course of treatment, and advances in genetics and immunotherapy are creating new options. Also, in some instances, the specific course of treatment is not clear-cut.
That's even more reason why understanding the potential approaches to your disease is crucial.
Cancer Research Legend Urges Patients to Get Multiple Opinions
“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care, because finding a doctor who is up to the latest of information is important,” said Dr. Rosenberg.
“And it's always important to get other opinions so that you can make the best decisions for yourself in consultation with your care providers.”
A somewhat new pain treatment option is cannabis. Cancer patients all around the world talk about how beneficial cannabis is as an option for their treatment. Many of our doctors recognize the potential benefits of cannabis as a part of integrative therapy, but it's important to note, not as a cure in itself.
“Integrative therapy is when patients come to see me when they want to add alternative or complementary therapies to their conventional treatments,” says Dr. Junella Chin, an integrative cannabis specialist.
Marijuana can be a helpful tool in combating the negative side effects of both cancer and chemotherapy. It can help with nausea, loss of appetite, pain and depressed mood or anxiety.
"Medical cannabis, if you think about it, it's the only botanical medicine that can help nausea, increase appetite, decrease pain, and elevate mood," Dr. Chin told SurvivorNet, in a previous interview. She noted that a lot of people who are undergoing chemotherapy as part of their cancer treatment live in a state where medical marijuana is available and are using it for relief.
Some doctors will prescribe a generic version of marijuana, called Marinol, to treat these side effects. But Dr. Chin would rather use the real thing to help her patients. “That is much more effective in increasing appetite and decreasing pain for my cancer patients," she said.
Resources for People Facing Rare Diseases
With a rare diagnosis or chronic pain can come all sorts of feelings of anxiety, fear and loneliness. But it's important to know you're not alone. Below are some helpful resources for the many people affected by lesser-known or less-researched diseases.
Academic Centers and Comprehensive Care Centers
For some rare disease warriors, community centers provide great treatment options. But for people with rare conditions cancer or otherwise more specialized care may be required. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.
In a previous conversation with SurvivorNet, Dr. Kenneth Miller, director of outpatient oncology at the University of Maryland's comprehensive cancer center, explained what differentiates a “comprehensive cancer center” from other treatment providers.
Seeking Care at a Comprehensive Cancer Center
“Pretty much automatically, there's going to be a team approach [to your care],” Dr. Miller said. “Surgical oncology, medical oncology, radiation oncology, and all the support servicesand also wonderful pathology and radiology.”
Dr. Miller added that at a comprehensive cancer center, all of these different specialists work together as a team to help you find the best course of treatment for your specific kind of cancer.
"We call it a tumor boarda group to go through all the details of your case… so you get a group of very smart people coming up with a plan together that is hopefully optimal and gives you the best chance of doing well.”
Clinicaltrials.gov and the SurvivorNet Clinical Trial Finder
Another place to turn to when you've been diagnosed with a rare disease and you're considering experimental treatment or trying to find specialists is clinicaltrials.gov a database maintained by the U.S. government that compiles privately and publicly funded clinical trials conducted around the world. Clinical trials themselves are research studies that compare the most effective known treatment for a specific type or stage of a disease with a new approach.
Clinical Trials Can be Life-Saving for Some
Clinicaltrials.gov can help you explore possible treatment options by looking at trials that are actively recruiting. The site also provides the information of some of the most specialized doctors in a specific field since they often end up leading clinical trials that advance our understanding of diseases.
By searching your disease on Clinicaltrials.gov, you will usually come across a list of many studies. The lead researcher will be listed under the heading, "Investigators." Lead researchers in studies on rare diseases are typically doctors who have specialized in the study of that condition.
And if you'd prefer to search for clinical trials on a more user-friendly site, try SurvivorNet's new A.I. driven tool built on top of clinicaltrials.gov: the SurvivorNet Clinical Trial Finder. This tool is updated daily and gives users access to more than 100,000+ individual clinical trials to help them find treatment options.
To use the SurvivorNet Clinical Trial Finder, simply answer some basic questions using our custom-designed chat feature and we'll send customized clinical trial options within your region right to your email. In simplifying the search, we hope to offer multiple opportunities for clinical trial sponsors and clinical research organizations to engage with patients.
"Clinical trials are critical to the development of new therapies, and as we live through this extraordinary revolution in genomics, immunotherapy and targeted therapy, it's clear that one of the most pressing needs for patients, clinical trials sponsors, and researchers is simply a better way to find patients," SurvivorNet CEO Steve Alperin said. "Even one percent more people successfully enrolled in clinical trials can change the world."
Dr. Beth Karlan, a gynecologic oncologist with UCLA Health, previously told SurvivorNet that clinical trials can be play an important role for some patients' treatment, but they also serve a larger purpose.
"Clinical trials hopefully can benefit you, but is also providing very, very vital information to the whole scientific community about the effectiveness of these treatments," Dr. Karlan said. "We need everyone to be partners with us if we're ever going to truly cure cancer or prevent people from having to die from cancer."
That being said, it's important to remember that clinical trials aren't for everybody. And going into a study does not necessarily mean you'll receive better care than the standard treatment. You should always talk with your doctor(s) before getting involved in one. Some risks to consider are:
- The risk of harm and/or side effects due to experimental treatments
- Researchers may be unaware of some potential side effects for experimental treatments
- The treatment may not work for you, even if it has worked for others
PubMed
Similar to clinicaltrials.gov, PubMed is another place to turn if you're looking to research your rare disease. This website includes more than 33 million citations for biomedical literature from MEDLINE, life science journals and online books.
If you type in your disease, you'll see a list of studies and articles about the condition. You can even add a filter to only look at clinical trial information. By looking at the doctors associated with the published clinical trial results and other articles, you may be able to find doctors that specialize in research for your disease.
Newly-Developed Drugs
For those who've been recently diagnosed with a rare disease, we also want to highlight reasons for hope since there is something of a revolution going on in the development of drugs for rare diseases. The sequencing of the human genome has enabled doctors to take new approaches to treating some of these uncommon conditions. One step you may take after being diagnosed with a rare disease is looking into the drug companies developing drugs to treat your condition.
Compassionate Use and Off-Label Use
Drug companies may be able to help patients enroll in clinical trials, and in some rare cases, they may even be able to offer “compassionate use.” Compassionate drug use makes a new drug that has not been fully approved available to a patient facing a serious illness. This only typically happens when a patient has exhausted all other treatment options, but it is an important option to understand.
The "Right to Try" Controversy: When Should People be Given Experimental Drugs?
Similarly, researching drug companies may be a path to “off-label” drug use. Off-label drug use involves taking a drug that has been approved for treating one condition in the hopes that it may treat another condition that it has not yet been approved for.
Contributing: SurvivorNet Staff
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