…”If I say "My aching bones" … when I get up, people laugh because they think it's a joke. Or when I say I'm not able to lift something heavy they look at my strong build and say "Yeah, right!" I feel completely guilty asking for help out to my car with groceries. I would like to get a disabled parking permit but I see the way people stare at me in disgust when I park in one on occasion”
The world seems to accommodate the fully functional, the young and the healthy. In this millennium, it seems that people are dedicated to living and working at hyper speed. We are precocious in a age-denying and defying world. We are having the experiences that are usually associated with senior citizenship. Try to keep a sense of humor; you are going to need it. This is a good time to remember that guilt for being the way we are is useless and draining; the insensitive and the unfeeling are not likely to be sharing our capacity for guilt. Try to remind yourself that you are not the problem. And besides, you at least can fully appreciate “stopping to smell the roses” (if you aren’t allergic to them.)
Pain Control –Taming a formidable foe
The biggest challenge we face is pain control. Understanding pain control is not easy and it is a complicated and very political issue in this country. Most of us expect to feel some pain; human life conditions us to it. But, we need to have an understanding of when the pain is beyond the norm. Equally we need to have realistic expectations of the benefits of various pain management techniques and medications.
In broad terms, the types of pain are:
Acute pain, Patients and physicians are comfortable dealing with acute pain, which follow injury or surgery. Injury leads to inflammation and changes within the central nervous system.
Chronic malignant pain, This is the pain found in the terminally ill, patients with Cancer, AIDS and those near death.
And chronic nonmalignant pain—this type of pain is pain that has lasted 3 or more months. It may occur every day or it may be intermittent; it can be dull or piercing it may occur in one or two parts of the body or be widespread. It can be debilitating and fatiguing. This last type of pain is the one that most of us deal with. The origin is less clear and many physicians have a hard time identifying the causes of such pain; this is particularly true FMS, CFIDS and MCS patients.
Chronic pain has a tremendous effect on our lives and lifestyle, it also is said to have a tremendous impact on the US economy in terms of cost: $40 billion per year. However, despite the tremendous cost of pain, it is questionable that the 50 million Americans dealing with chronic pain are getting adequate pain relief. Chronic pain can cause insomnia, hypertension, and heart problems, loss of concentration. Chronic pain is associated with increased caffeine, nicotine and alcohol use.
As patients, and as advocates, most of us wonder, “Can chronic pain be 100 percent eliminated?”
Probably not, but with a combination of techniques we can lower the amount and severity of the pain we have and regain some functioning. Any lowering of pain may allow us improved interactions with our loved ones and friends or the pursuit of much loved activities that we have neglected because of pain. Patients and their physicians are familiar with acute pain or pain caused by injury. Injury leads to inflammation and changes within the central nervous system. Pain signals are sent to the brain. The brain in turn signals the muscles, causing a reflex muscle spasm. These changes protect the injured area.
The types of pain relief are varied and I would like to mention as many as I know including complementary or alternative medicines techniques.
Medications:
Acetaminophen (Tylenol)—mildy effective, long-term affects include liver damage.
Aspirin –most effective on inflammation or acute pain, some gastro-intestinal affects.
Non-steroidal anti-inflammatory drugs called NSAIDs; examples include Motrin, naprosyn, Relafen, Daypro…) this class of medications has many GI side affects and are excreted through the kidneys. NSAIDs can place a strain on kidneys.
Cox 2- inhibitors are recent to the market. These drubs such as Vioxx and Celebrex were supposed to promise pain relief with out the gastric upset. Side effects of vioxx are hotly debated, there is evidence of some GI bleed in the elderly, and the fluid retention associated with Vioxx is also problematic. These medications are expensive. Now there is a suggestion that Cox-2 class of drugs may have a negative impact on heart reflex, a report from the University of Pennsylvania medical center suggests that for a minority of patients this class of drugs may increase risks of thrombosis
Anti depressants are sometimes used for pain treatment, but are they effective? I found literature arguing that Paxil and Zoloft helped ease pain and equal literature that they did not. There are some serious law suites against the makers of Paxil and one filed in August 2001: alleges "severe withdrawal reactions" after taking the anti-depressant Paxil …The complaint against pharmaceutical giant GlaxoSmithKline, which produces Paxil, alleges that the drug "is more addictive" and "has a greater tendency to induce physical and physiological dependency" than other anti-depressants.” (CNN reports)
Anti epileptic drugs are used for pain also. These include: tegretol, Neurontin, and Mexitil, which are thought to be affective in treating diabetic neuropathies, and neuralgia. Many FMS patients use neurontin with varying degrees of success. But the side effects are considerable: weight gain, nausea, and rectal bleeding are a few that have been reported to me.
On all of the medications I have mentioned, I have read studies touting their effectiveness and others denying their efficacy.
Opioid medications are hotly debated and this is a subject the shorter acting opiod medications are generally morphine and some codeine based compounds. With shorter acting medications more frequent dosing is necessary. The longer term or time-release medications are usually those that require the patient take them once or twice a day. The most popular of these is Oxycontin that has been the subject of monumental controversy in the past year. Patients who approach a doctor and ask for an opioid medication early in treatment are likely to be turned down or meet with derision.
There are a number of supplements that are said to help with FMS, CFIDS and MPS symptoms: I am not going to talk about them for long because most patients are well read and well versed on this subject. I would remind everyone that herbal and mineral supplements do interact with medications and that you should always be aware of possible interactions.
There are a variety of Therapies, massage, physical, behavior etc. Physical therapy, focus on reconditioning (such as a walking program), stretching exercises and pain reducing modalities (such as heat, ice, distraction techniques and oscillatory movements).
Occupational therapy should focus on proper body mechanics, and should help the patient return to more normal levels of activity in household chores, work and leisure.
Massage therapy, is comforting and particularly useful to burn victims but less so to people with undefined back and spine problems. On the other hand it is said to promote muscle relaxation and restful sleep and for someone with insomnia, any sleep gains are important. Even temporary well being is important and proper insurance reimbursement for massage therapy is something that we should consider advocating for.
Under the heading of Alternative/Complementary care, there are many different things to try. I have tried many different things and spent thousands of dollars attempts to feel better.
Magnets—I am not alone in finding no help here; there is also no evidence to support claims made for magnets, just anecdotal statements.
Breathing techniques, these are effective in childbirth and for nausea but less so for pain.
Acupuncture —Based on moderating and balancing the Qi (chee) energy flows with in our body. More and more insurance companies are paying for a defined course of acupuncture when prescribed by a doctor.
Cognitive Behavior Therapy, Meditation, Relaxation Techniques are well thought of in the era of managed care. They are inexpensive; involve little physician intervention or treatment and can be taught to patients easily. Tapes and books can be supplied on the techniques placing the responsibility on the patient to do they best they can to manage their pain.
CBT is frequently mentioned for CFIDS, MPS, and FMS patients. Gulf War Syndrome patients are also frequently prescribed this treatment. It was initiated by Aaron Beck, MD, to treat depression, and has shown success in dealing with patients with severe anxiety dilemmas. It has also been employed to treat a variety of psychiatric problems such as anger management and phobias. The premise in cognitive therapy is that our thoughts, beliefs and biases influence our emotions and the intensity of our emotions influences how we approach any problem or dilemma we have.
I have personally felt at times that CBT is a catchall phrase for FMS, CFIDS, MCS and Myofascial pain patients. It seems at time to be based on the “Little Engine That Could” therapy” for dealing with pain. While there is something to be said for not approaching our days in a negative frame of mind, are CBT techniques sufficient for coping with pain. I believe that while CBT can help us feel better about ourselves and the fact we deal with chronic pain, it does not eliminate pain. It can reduce the anxiety that we approach the problem of living with pain and it can help feel less negative about ourselves and the fact that we are in pain. It might even help us continue to adapt the way we live and approach life, but it is not a pain control technique in and of itself.
Relaxation/meditation: Relaxation techniques are supposed to lead to declines in blood pressure and slow the heart rate. In it’s a 1990 report, the Agency for Health Care Policy and Research (AHCPR) rated the evidence that relaxation techniques alleviate pain in a variety of medical conditions as "strong." The relaxation state, similar to meditation, is encouraged when the patient focuses on the repetition of a word or phrase while maintaining a passive attitude toward intrusive thoughts and returning to the object of focus. It may take 10 to 20 minutes to achieve the desired state. Stress and pain often lessen, but this technique for anyone who is working, or running a household may not be realistic. Anecdotes from patients indicate that when in severe pain, they have difficulty adequately relaxing to implement these methods.
Hypnosis: A recent review of hypnosis in the treatment of patients in palliative care programs called the technique "useful, neglected, available." Hypnosis may be a helpful in use with other therapies by producing relaxation, improving sleep disorders, and reducing pain and emotional responses to pain. Evidence of effectiveness is often anecdotal.
TENS this approach, considered a mainstream physical therapy technique by some physicians, uses low levels of electricity to interfere with pain signals to the brain. It has proved most beneficial for patients with acute joint or lower backs pain. However, patients with certain neurological problems can be intolerant of this type of treatment.
TENS units have been reported to successfully treat pain in patients with diabetic neuropathy, and severe muscle spasms. Beneficial results of this technique may wane with continued use, but some patients have been helped for years. Patients with pacemakers or other implanted metal objects are not good candidates for TENS
Exercise one of the most touted treatments for CFIDS/ME and FMS is supposed to bring endorphin release. My experience in the past year has been a somewhat humorous and painful search for endorphins. I exercise regularly and took up a program to do this a year ago when I heard a physician at a conference state that exercise would bring endorphin release. I have busted my considerable butt exercise would bring endorphin release. I have busted my considerable butt exercising 4 or 5 times a week for 8 months, and I am still waiting for my endorphins, and I am still a generously proportioned plus size woman. Apparently, I am not alone in eschewing the benefits of exercising…. (Don’t get me wrong, I have great legs and biceps like Xena the Warrior princess; however, that was not the result I was hoping to achieve.) at the Department of Internal Medicine, University Hospital Maastricht, in The Netherlands, 143 patients were studied. The conclusion: “In terms of training intensity and maximal heart rates, the high impact fitness intervention had a low impact benefit. Therefore effectiveness of high impact physical fitness training cannot be demonstrated. Thus compared to usual care, the fitness training (i.e., low impact) and biofeedback training had no clear beneficial effects on objective or subjective patient outcomes in patients with FM.”.
I have consistently found that the 3 best endorphin-releasing activities are laughter, sex, and falling in love. Falling in love frequently is rough on the psyche and can greatly interfere in any relationship you already have; however laughter is something you can do every day and should do as often as possible. Rent a funny movie; buy a previewed copy of it if you can. Keep it nearby to help you beat the blues. There is a great deal of truth in the saying that “Laughter is the best medicine.”
Sex, I will leave to your discretion, but I will remind you that it beats 30 minutes on a treadmill and will make your husband or partner a lot happier than watching you exercise.
I had intended to talk more about Oxycontin but due to time constraints was unable; I am currently preparing an article on the “Politics of pain control.”
Copyright, 2002, Anne-Marie Vidal
