Can anyone help me?

Discussion in 'Fibromyalgia Main Forum' started by debs4380, May 13, 2003.

  1. debs4380

    debs4380 New Member

    I've been dealing with fibromyalgia for a long time. I'm pretty sure I have chronic fatigue too. Plus depression. I just feel so hopeless and sad. I'm only 23, but I'm so limited compared to the other people my age. I'm in so much pain sometimes. It's especially been bad in my hands and wrists to the point I can't always use them. I'm just looking for some help and advice. Most doctors either don't help or just drug me with strong pain killers. I don't want to live my life this way. Any advice on treatments or a good book to read would help. I just feel like no one understands my pain and I'd love to talk to someone who does.

    Thanks
  2. JP

    JP New Member

    This stuff can get to you. There are a number of things one can do and it is an individual path. For me, reading can sink me a little deeper and I do read. I find help in staying as active as I am able and finding that daily balance. I can't go into the future much. I did read an interesting article in People Magazine. It's about chronic pain and I think many of us can relate to this story.

    You will find lots of support here. Take care, Jan

    People Magazine 5/5/03

    Mind Over Misery

    Left jab, right cross, left hook: Hannah Terrell pummels a punching bag in full-out fury, her red boxing gloves set off by a pink T-shirt and pearl earrings. No, this isn't a gym, and Terrell isn't training for a shot at Laila Ali. The Vanderbilt University sophomore is a patient at the Cleveland Clinic's Chronic Pain Rehabilitation Program, where hitting the big bag is part of her therapy — a way of purging half a lifetime's worth of anger and frustration. Since shattering her left ankle in a fall 10 years ago, Terrell, now 20, has endured five surgeries and physical anguish so punishing that she sometimes could not stand upright for more than a few minutes. Last fall "I was crying all the time," she says. "I skipped classes because I was knocked out by medications. My body was out of control."

    Her suffering is all too common, for Terrell is among millions of Americans tormented by chronic pain. A recent study published in the Clinical Journal of Pain shows that the majority of patients receive inadequate treatment. In part this is because all too few physicians are trained specifically in pain management. Even excellent doctors tend to regard pain as a byproduct of illness or injury; they try to treat it with drugs, from aspirin to opiates. "All of us would rather have someone take away our pain with an injection than be taught how to live with it," says Dr. Edward Covington, director of the Cleveland Clinic program. But meds often offer only brief or partial relief, and when prescribed improperly their side effects (ulcers from analgesics; dopiness from narcotics) can be nasty.

    Covington, 56, is helping to pioneer a more comprehensive — and, experts say, effective — approach. "Ed is a leader in his field," says Dr. Jeffrey D. Rome, medical director of pain rehabilitation at the Mayo Clinic in Rochester, Minn. The Cleveland program is one of a handful in the U.S. that attack intractable pain not only with carefully calibrated pharmaceuticals but also with exercise, biofeedback, self-hypnosis, psychological counseling and family therapy. That regimen is based on a growing body of research showing that pain is "intensely affected by emotions, fears and beliefs," says Covington, and that treating it as a mere symptom is not always enough. In chronic cases, says Covington, pain can cause permanent neurological changes. "Pain becomes an evolving, perpetuating problem," he explains. "A disease."
    That was certainly the case for Terrell. An athletic girl who loved field hockey, she was 10 when she plunged 15 ft. off a zip line — a backyard cable ride strung between two trees. Despite years of operations, nerve damage set in and her agony became unbearable. Painkillers (Celebrex and Percocet, among others) worked only intermittently. "Pain defined her, it ruled her life," says her mother, Sally, 45, a homemaker. By last fall the child-development major was falling behind in her classes and dropping out of campus social life. "I missed my old self," Terrell says. "I felt helpless."

    She discovered the Cleveland Clinic in December, after years of shuttling from specialist to specialist in several states. Told by a surgeon that she needed yet another operation, Terrell consulted a California pain counselor, who suggested that she try a new strategy — one available just a few miles from the Chagrin Falls, Ohio, home she shares with her mother and her father, Steve, 46, a financial consultant. "It was really my last resort," Terrell says. "I'd tried everything."

    So have most patients at the Cleveland Clinic's all-day program, which offers a three-to-four-week course to a dozen sufferers at a time. They learn that the mind-body phenomenon of pain can be modified by psychological or external events. An adrenaline rush, for example, can minimize pain. "That's what allows you to score a touchdown with a broken leg," says Covington, a psychiatrist and married father of three who got his medical degree at the University of Tennessee and came to the Cleveland Clinic in 1979. On the other hand, he notes, brain-imaging studies show that fear or anxiety increases pain. "Some areas of the brain reflect the sensory component — the 'ouch' factor," he says. "Others reflect emotional suffering."
    Covington "understands that you can't be in pain for any significant period and not become depressed or anxious," says Dr. Hubert Rosomoff, medical director of the University of Miami's pain rehab center. Former patients agree. Spinal fusion surgery had left Darlene Davis, 46, with severe pain in her limbs, back and head, forcing her to quit her nursing job. "I was so depressed, it was like living inside myself in a hellhole," she recalls. Thanks to Covington, Davis is working at her family's window company and now makes the clinic sound like Lourdes on Lake Erie. "A woman came in with a cane and dumped it the second day," she says. "A woman in a wheelchair was walking. But it isn't the physical transformations that are so amazing, it's the emotional ones. You see people become alive again."

    For Terrell that process was not easy. At Cleveland the staff pushed her to be more active — learning to put into practice the philosophy of "working through your pain." By the end of the first week she was jogging, swimming and lifting weights. "It wasn't that she did not have pain but that her pain didn't get worse once she started to work out," says physical therapist Maribeth Gibbon. "Her confidence in her body increased." Along with counseling, exercise helped her clear a major barrier: fear. "One of the most important things we do is send people to the gym, where they find themselves doing things they didn't think they could do," says Covington. "They think, 'Maybe I'm not quite as helpless as I thought I was.' "
    But during her second week Terrell suffered a setback during a session in which 50 ex-patients discussed how they managed their pain. The dispiriting word was "managed." Though many who spoke were upbeat ("I have such a desire for life that I did not have," said one woman who suffers from excruciating cluster headaches), the reality that their pain — and hers — might never disappear made Terrell slump lower and lower in her seat. A few hours later, in a family therapy session, she broke down. "My pain is not going to go away," she sobbed. "I can't deal with it."

    By the end of the third week, however, she had righted herself. And on Jan. 17 she was discharged to return to school. Covington prescribed a battery of medications — including an anti-depressant, two anti-epileptic drugs known to fight pain, and Ultram, an analgesic. But she was also assigned activities such as walking, yoga and relaxation exercises.
    "I'm still in pain, but when I find myself slipping back, I can catch myself and try to calm down," she says. "We talked in the program about how you have to allow yourself a bad day every once in a while." Now the good days are more frequent. Terrell regularly walks to class. Not only does she stand and schmooze at parties, but she has been known to dance. "It's nice," she says, "to feel a little bit more normal."
    — RICHARD JEROME
    — GIOVANNA BREU in Cleveland

  3. Princessraye

    Princessraye New Member

    Hi

    I know how you feel. Most people do not understand your pain but we do ! I hope you have at least one family member who understands, as much as healthy people can understand. They just do not know what it is like. My mom was always great about understanding but only because she has fibro and chronic fatigue also.

    I am 45 but got sick at 29. I know how sad it is to be so young and feel unable to keep up with and enjoy the same things as people your age. I still feel that way at my age.

    If you can, you may want to try a pain management clinic. The average DR. does not understand pain.
    Sadly, it is up to you to find someone to help you and that is hard when you feel so bad, hard to fight for yourself.

    I am not big on support groups but you may want to try to find one. Some people find them helpful, some do not.In your case it may be helpful just to find at least one person who is young and dealing with these problems , just to know you are not alone.

    If you are not allergic to apirin, try Salonpas pain patches. They are over the counter and inexpesnive. I cut them in half and put the on the most painful part of my hands.
    I have a lot of trouble writing so I know what hand pain is like.
    If you are looking for a non narcotic pain medicine you may want to try Bekstra. My friend takes it and it helps his hands the most. I can't take arthritis type drugs so I have no tried it.

    I wish there was more I could tell you. I do believe with you being only 23 you will see some improvements in treatment and maybe even a cure during your lifetime. But I know , that doesn't help either one of us right now.

    Take lots of deep breaths, try not to think this thing to death, find things that help you.
    We are here for you.







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