More than 75 million Americans live in daily, debilitating pain. It causes psychological problems and can hurt your relationships with spouses, your children, and even co-workers. Read on to find out how one woman turned her personal quest for chronic pain management into a success story and created a national network to help others in agony...
Chronic pain can shatter your world. It can send you spiraling through anger, grief and depression. It can damage relationships, disrupt careers and wreck sex lives.
That’s what happened to Gwenn Herman, a Maryland clinical social worker whose life was turned upside-down in 1995 by a car accident. She felt fine at first, but a few hours later, white-hot pain surged from her shoulders to her neck and head, then spread throughout her body.
For years, pain crippled and consumed her.
“I understood what it was like to be helpless, fragile and vulnerable,’’ she writes in Making the Invisible Visible (Pain Connection), a chronic pain manual for health-care providers. “There wasn’t a day that I didn’t think of killing myself.’’
She tried neck surgery, a hip graft, cortisone injections, more than 40 different prescriptions and denervation, a procedure that destroys pain-causing nerves. The chronic pain treatment didn’t help much physically, and so did nothing to ease the psychological anguish.
Once she learned how to do her own chronic pain management, she formed a support group that meets monthly to offer others the emotional help and practical advice she’d found lacking in her own care.
That group grew into Pain Connection, a nonprofit center providing support groups, education and training.
In this exclusive interview, Herman explains why psychotherapy should be part of chronic pain management, and how people can cope with the life changes and stresses that come from hurting all the time.
If the pain is real and not in your mind, how does psychotherapy help?
Chronic pain affects every aspect of your life – physical, psychological, social and spiritual. And it affects everyone around you.
You go through a grief process because you can’t do things you used to.
Psychotherapy helps people identify what they’re feeling, explore those feelings and deal with the grief and losses. It normalizes the experience.
How does it normalize it?
Everything that people with chronic pain go through is normal [for them]. They’re not going crazy. [Psychotherapy] helps people realize it’s OK to feel this way and learn how to live again and enjoy their lives.
Did you have pain before your accident?
No, I didn’t know anything about chronic pain at all.
Did you see a doctor when you felt that first rush of pain?
Yes, they said I had whiplash and I’d be OK in 48 hours.
But you weren’t?
No, I was a complete mess. I couldn’t drive, work or take the kids anywhere. I couldn’t sleep at night. It felt like there was a knife in my neck.
Where did you seek chronic pain treatment?
I went to many doctors. I tried muscle relaxers, antidepressants and opioids. I had bad reactions to every medicine. One caused a seizure. I tried massage in the beginning, but it hurt too much.
I tried traction and acupuncture, but the pain was unbearable. A chiropractor said I was so bad that he didn’t want to touch me. He referred me to an orthopedist.
A year later, I had disc surgery and a hip graft.
Was that chronic pain management effective?
My neck pain went down a little. I had a temporary limp because of the graft.
How did all this affect you emotionally?
I completely lost my self-esteem and my whole sense of who I was.
I was waiting for other people to fix me. When it really hits you – that pain is part of your life – you go through a major identity crisis.
You need to figure out how to be more responsible for your treatment.
How did chronic pain affect your relationships?
I had horrible headaches, so I was very impatient with my kids. If they made noise, I would scream at them. So I felt a lot of guilt.
Sexual intimacy was also an issue. My husband couldn’t touch me because I was in so much pain.
I started slowly losing all my work friends. They thought I was malingering.
Did you try psychotherapy?
I went to two therapists. One had fibromyalgia and the other didn’t know anything about chronic pain. They allowed me to vent and cry, but didn’t teach me how to live.
How did you go from being a pain patient to working with other sufferers?
At one point, I found a support group, but all everyone talked about was suicide. I came out thinking, I just want to kill myself.
I decided that, if I ever got straightened out, I’m going to start my own support group.
Why a group for chronic pain management and not just individual therapy?
Pain makes you very isolated, but you don’t want to socialize because you don’t know how you’re going to react in certain situations – or how people will react to you.
The whole idea of a group is realizing you’re not alone.
What therapeutic approach works well for people with chronic pain?
Cognitive therapy. It teaches people how to rethink their pain.
How does someone “rethink” pain?
There’s a lot of negative thinking when you have chronic pain: I can’t do this. I’m worthless. No one knows what I’m going through.
Instead of saying you’re worthless, you look inside and find what’s worthwhile. It’s not just changing your thoughts but learning skills to help yourself – how to pace yourself, how to ask for what you need, how to look for warning signs of a flare up.
How does that work with chronic pain management?
[For example,] somebody might think, If I go shopping, I’m going to have a horrible headache. Cognitive therapy changes that to: I am going to go shopping, and here’s what I’m going to do to take care of myself.
So maybe you won’t go for five hours. You’ll go for a half hour. And you’ll take your ice pack. And if you do feel pain, it’s OK to stop.
Isn’t that simply giving in to the pain?
It’s accepting that your body has changed and that you need to change with it. You’re angry at your body for failing you, angry and resentful that everyone else’s life is going on and yours isn’t.
You’re often trying to do things when you really can’t. The majority of people I know were high-functioning people before pain came into their lives.
It sounds like this kind of psychotherapy is all about dealing with the here and now. Do patients have to dredge up the past?
If they’ve had a history of physical or sexual abuse or other trauma, it’s important to look at that. The vulnerability [of being in chronic pain] brings up old traumas and the pain can get intensified.
What other “mind” techniques help in chronic pain management?
Guided imagery, meditation and breathing techniques to get oxygen into the body are really important for dealing with stress.
The body can go into panic mode when pain flares up. People need to learn how to control pain, rather than have it control them.
When should patients seek psychological help?
It’s not considered chronic pain until you’ve had it for three or six months. But usually people don’t seek help for at least a year.
Why not?
You’re so busy going from one doctor to another, trying procedures and medicines. Usually people come after a lot of failures.
They haven’t failed – the medical model has. But life has deteriorated and they can’t cope anymore.
Should family members also get treatment?
It’s important, especially for children. They also go through life changes.
Because the pain is invisible, younger children especially don’t understand why you can’t take them out, cook dinner or are upset and yell at them.
They see other parents doing “normal” things. They feel they’re not worth doing things for – or that they caused the pain.
The first thing in therapy is to tell children it’s not their fault.
And spouses?
They take on a new role – maybe now they’re the caregiver, breadwinner – or have to take care of the kids.
They’re often angry at first. Some family members just don’t believe it. They think you’re lazy. They tell you to just forget about the pain.
There are a lot of emotions and stress on families.
How is your pain now?
Constant. It’s as low as a 4 or 5 on good days and it goes up to an 8 or 9 on bad days. It can be a really horrible headache, [or pain in] my neck or the back of my legs. But I’ve learned how to work with it.
How do you do that?
I pace myself. I plan out what I need to do and how much time I need to rest. I meditate daily. At work, I keep an ice pack [in a freezer].
Do you use alternative remedies for chronic pain management?
I use oils to soothe my muscles. An herbalist taught me to make a mixture of lavender, St. John’s Wort oil and aloe vera gel. I take vitamins and supplements – vitamin D to help with fatigue and muscle aches, magnesium citrate for pain, Melatonin and Ashwagandha [also known as Indian ginseng] to help with sleep, selenium for my thyroid function and immune system, and cod liver oil.
What do you do on bad days when the pain hits “9”?
Guided imagery. It’s amazing. I breathe and start thinking about an image.
If the pain is really intense, I imagine my healing breath going into the pain, calming it down and breaking it up. I sometimes imagine a waterfall washing it away. Or I imagine the pain on an eagle flying away or an opening in my head allowing it to escape.
The thing is to give the pain a pathway out of my body. If none of those work, I imagine a shot of Demerol.
For more expert advice and information, visit our Pain Management Health Center.
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MY ADVICE FOR CHRONIC PAIN, WHICH I LIVE IN CONSTANTLY DUE TO RSD/CRPS AND FIBROMYALGIA; IS TO STAY HAPPY AND BE COMPLETELY POSITIVE NO MATTER WHAT. JUST BECAUSE WERE IN PAIN, WE CAN STILL SMILE AND IT MAKES OUR BODIES FEEL BETTER WHEN YOUR MIND IS HAPPY. I FOUND SOME, SUPPORT GROUPS TO BE NEGATIVE AND I HAD TO STOP THEM. I CONTINUE TO SMILE AND STAY POSITIVE NO MATTER HOW MUCH PAIN I HAVE. IT HELPS TO BE HAPPY AND POSITIVE EVEN THROUGH ALL THE PAIN. P.S. I FIND EPIDURALS BY A GREAT DOCTOR, FREQUENTLY, TO BE MY BEST FRIEND...
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