Pain Patients Speak Out at Public Forum

Pain Patients Speak Out at Public Forum

bigstock-American-Drugs-4379874“You can’t let the pain win!”

That’s what a young woman in her late 20’s battling pain from a number of auto- immune diseases told a community forum in Pasadena, California.

Arlene Grau, who has rheumatoid arthritis, migraines, fibromyalgia and lupus, was part of a panel sponsored by KPCC Southern California Public Radio for a forum on pain called “Invisible Suffering.”

(You can hear the audio replay of the forum here)

Grau, who is a mother of two young girls, was very candid why she was willing to share her story.

“Pain patients need to hear that we can’t let the illnesses change who we are,” said Grau, who estimates she’s been hospitalized ten times in the last year.

When an audience member said, “No one should have to hurt this much,” Grau said it was important not let her anger about the chronic pain she suffers overwhelm her.

“I have good days and I have bad days,” Grau told the audience. “Enjoy the good days.”

Grau was critical of doctors who have treated her in the past, saying that they didn’t listen. But she’s very happy with her physician now.

Grau also made the point that patients bear some responsibility in their treatment, and she emphasized the importance of telling your doctor everything.

“It’s best to be clear and honest with your physician.”

The panel was the brainchild of Jose Martinez, a reporter at KPCC who conceived of the pain forum because of his mother’s battle with rheumatoid arthritis. Martinez moderated the panel with Grau, Dr. Andrew Charles, professor of Neurology and Director of the Headache Research and Treatment Programs at UCLA’s David Geffen School of Medicine and Nancy Clifton-Hawkins who is a public health consultant in Southern California.

Grau’s frankness in talking about her pain, and how she deals with it was one of the highlights of the  session.

“I’ve always been a positive person,” she said,” but sometimes I just need to let it out. I will scream into my pillow, and sometimes it helps.”

Audience members, many of whom are chronic pain sufferers, shared their own stories. One spoke of the frustration she feels when people, even her loved ones, don’t really understand what she is going through.

“Someone might tell you, ‘hey you look good’ and it can actually irritate me because I don’t feel good,” said the woman who didn’t identify herself.

Grau, who can no longer drive after an auto accident this spring, told the audience she’s happy to be alive, to be a mother, husband and daughter and that she plans to continue to speak out so that people can learn more about people who suffer from chronic pain.

Authored by: Ed Coghlan

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As a child I had the regular kid illnesses but nothing serious until I turned 39. I am now 61 and in so much chronic and acute pain from a multitude of auto immune diseases. These diseases are all the result of stress. My body is attacking me, giving me these diseases because I can not shut off the stress. The stress is the product of one auto immune disease after another. When I read that Arlene Grau has multiple auto immune diseases it was the FIRST time I had heard of anyone having multiple problems with pain and she is coping. I am searching every where to find that healthy way to cope with pain. I now see a psychologist for pain management. All pain meds…every single type…will offer you only 45% pain relief. So how do we get rid of the rest of it?? My practitioner wants me to lose weight…which would help with many problems BUT I am in so much pain I can barely walk now. What am I to do?? HELP, SOS, HELP

Dennis Kinch

Terri Herring’s point is the answer to why so many people in pain cannot be positive. Pharmacy crawling is but one of many, many complicating circumstances not in their control. The recent opioid scare, the doctors who represent insurance companies, employers and pharmaceutical corporations, the insurance companies who falsify documents to cut you from their roles, the many losses we suffer, like jobs, money, recreation, friendships, people thinking we’re lazy and drug addicted, that we’re just “looking for an excuse not to work”. Plus the fact that we have had these illnesses for many years and expect them to be permanent. Is it any wonder we have such an uphill battle? Awareness is the first answer to acceptance of our situation, this I understand, but how do we get outside influences like the ones mentioned to try harder to get on the patient’s side and quit making an already tough situation unbearable.Arlene Grau is proof that we can find our true spirit again and overcome the depression inherent with chronic pain, our personal empowerment to find happiness and productivity. There is a way out of the Pain Cycle. It would really be nice if the rest of the medical system could get behind this goal: That every patient should be able to find peace and quality of life with their support. Right now it feels like the only ones on our side are fellow pain sufferers.

Terri Herring

Did anyone at this forum happen to mention the “pharmacy crawl” that many pain patients have been forced into for the last year? Pharmacies, particularly those in Fl, have been so targeted by the DEA that pharmacists are both terrified & refusing to fill pain medication prescriptions or are so limited in quantity per month that they cannot fill the need. This has forced legitimate patients who are already struggling with intense chronic pain to have to visit dozens of pharmacies until finding one that is either willing or able to fill their prescriptions for relief. Some have been thrown into withdrawal, some have committed suicide. It has become an epidemic of a humanitarium nature and it has got to stop.