Dear Listfriends, Dr. Lieberman has written a new book, soon to be published, and has provided the following exerpt. In light of the recent conversations on pain, it is good to know that a leading specialist acknowledges and addresses this issue. -------------------- dear friends the following is an excerpt from my book on parkinson disease i would appreciate any comments Parkinson Disease (1) Introduction It’s said, “Pain and PD don’t go together.” And when pain appears, its said to be something else, “arthritis, bursitis, a “bad back”, a “frozen shoulder,” fibromyalgia, a “pinched nerve,”a sprained muscle, or nerves.” But pain is part of PD, and it has many forms. In Chapter 1 you met Melvin, the state senator who’s PD started with shoulder pain, pain his doctor’s attributed to an old football injury. He was treated with anti-inflammatory drugs, arthritis drugs, acupuncture, exercise, massage, and pain killer to no avail. It wasn’t until Melvin was diagnosed with PD, and his pain disappeared on Sinemet, that it was attributed, correctly to PD. In Chapter 5 you learned about discomfort of Restless Legs, a condition associated with PD. And you learned about the cramping pain of dystonia: neck pain, leg pain, and arm pain. How common is pain is PD? In my own experience 50% of people with PD at one time complain of pain, and in perhaps 50% of them, 25% of all people with PD, the pain is related to PD and not something else. The pain’s related to PD, if it fits a pattern, if it’s worse where PD’s worse, if it’s relieved by PD drugs such as Sinemet plus Comtan, if there’s no other cause. (2) The Pain of Rigidity In the beginning, before you’re diagnosed with PD, like Melvin you may complain of a dull pain, like a sprain. The pain may be described as aching, gnawing, or nagging. The pain is usually confined to a shoulder, the neck, the back, or a hip. These are either major weight bearing regions (the back, the hip). Or they’re pivots around which multi- directional movements occur: side-to-side, up-and-down, back-and-forth, around-and-around. These pivots are the shoulder, the neck, and to a lesser degree the hip. The elbows and knees are pivots, but uni-directional movements: back-and-forth (flexion and extension). This pain is probably related to the rigidity of PD which results in the muscles becoming stiffer, “less elastic”, harder and more painful for them to move. This type of pain “magically” disappears when Sinemet plus Comtan or a dopamine agonist is started. (3) The Pain of Dystonia Before you’re diagnosed, you may complain of a pain different from Melvin. The pain may be described as cramping, sharp, stabbing, or throbbing. It’s more intense than Melvin’s pain. The pain is usually confined to one or both calves, or forearms, or thighs, or upper arms. This pain is probably related to the dystonia of PD which results in the muscles becoming hard. This pain also magically disappears when Sinemet plus Comtan or a dopamine agonist is started. Dystonia is different from rigidity. Although both make the muscles hard, in rigidity the hardness results from the muscles becoming “less elastic”, whereas in dystonia it results from the muscles contracting without relaxing. You may not be able to tell or describe the difference, but a neurologist with an EMG (an electromyogram, “a cardiogram of the muscle) can. Dystonia of the calves, forearms, thigh, or upper arms, may be an early symptom of PD usually in people below age 40 years. It may appear in PD people who are on Sinemet. Usually it appears as Sinemet “wears off,” typically in the early morning when Sinemet levels are low. This is called an “off dystonia.” It’s worse on the side more affected by PD. It’s is treated by adding Comtan or a dopamine agonist to prolong Sinemet’s effect. The pain of dystonia can appear as Sinemet peaks, called “on dystonia.” It’s harder to treat requiring re-arranging all your drugs to reduce the “highs” and “lows” of Sinemet. (4) Describe the Pain Only you feel the pain, only you can describe it. Be as specific as you can. The following is helpful. Location: Where does it hurt most? The shoulder? The Hip? The Back? Does it stay in one place or does it radiate? If so, where? From the shoulder down the arm? From the back to the hip? Knowing how a pain radiates, is like knowing the road on which a car travels. Intensity: How bad is it? Describe it on a scale from “0" to “10", where “0" is no pain, and “10" feels like your arm (or leg) was “yanked-off”, or your skin was “ripped off.” The pain of PD is usually a 4, or 5, or 6, or 7. It’s never a 10. Duration: There are two parts. 1. How long have you had the pain? Hours? Days? Weeks? Years? 2. During a typical day, how long does it last? From the time you get till breakfast? Till lunch? Till dinner? All day? Associations: Is the pain associated with discoloration, inflammation, redness, swelling, or warmth of the overlying skin? The pain of PD shouldn’t be associated with any of the above. Position: What, if any, positions make it better. What, if any, make it worse. Quality: There are many ways to describe pain. Some have special meaning: Words used include: aching, biting, burning, cramping (like a Charlie-horse) , griping (like being caught in between a pair of pliers), hurting, nipping, pinching, ripping, smarting, stabbing, and throbbing. (5) Unusual Pain Unusual pain may occur in PD and may be related to muscle spasm (from dystonia) with pressure on an underlying nerve. Although it’s the muscle that’s in spasm, the pain is from the nerve. The pain’s more intense than a muscle spasm, and radiates along the nerve. The following may occur. Spasm of the piriformis muscle (in the buttock) with pressure on the sciatic nerve mimicking the pain from a herniated disc. Spasm of the gastrocnemius muscle (in back of the calve) with pressure on the peroneal nerve or spasm of the tibialis muscle (in front of the calve) with pressure on the tibialis nerve causing calve or foot pain. This may be responsible for the intense leg or foot pain people experience when Sinemet “wears- off.” Spasm of the pronator muscle in the forearm with pressure on the median nerve, or spasm of the extensor muscles of the wrist with pressure on the radial nerve with pain down the forearm. If spasm of a muscle is the cause of the underlying nerve pain, the treatment is injecting botulinum toxin into the muscle, reducing the spasm and freeing-up the nerve. A diffuse, not well localized, burning or throbbing pain may sometimes occur in an arm or a leg, or across the chest. Whether this is related to PD, or anxiety, or depression is difficult to pin down. It probably results from a disordered Autonomic Nervous System. (6) Treatment Pain resulting from PD usually respond to PD medication: Sinemet plus Comtan or a dopamine agonist. Pain that responds in part, or pain that’s not PD, may be treated as such pain is usually treated. Because many PD people have “sensitive stomachs” (see The Stomach in Parkinson), I prefer drugs such as Celebrex or Vioxx, drugs that decrease pain but rarely upset the stomach or cause bleeding. Anxiety and depression make pain worse, the pain from rigidity, or dystonia, or a disordered Autonomic Nervous System. Master your anxiety, or your depression and your pain may disappear. -- Kathrynne Holden, MS, RD Author: "Eat well, stay well with Parkinson's disease" "Constipation and Parkinson's" -- audiocassette & guidebook "Guidelines for Medical Nutrition Therapy for Parkinson's disease" & Risk Assessment Tools "Risk for malnutrition and bone fracture in Parkinson's disease," J Nutr Elderly. V18:3;1999. http://www.nutritionucanlivewith.com/