Living with Chronic Pain

http://www.webmd.com/rheumatoid-arthritis/features/rheumatoid-arthritis-medication-right-care?ecd=wnl_cbp_031909

Rheumatoid Arthritis Medication: The Right Care

When the burly, 45-year-old construction worker and heavy equipment operator first came to see rheumatologist Eric Matteson, MD, at the Mayo Clinic in the summer of 2006, he didn't look like the strong, vigorous man he'd once been. He had been suffering from rheumatoid arthritis for about three months. It had gotten so bad that he was no longer able to work, and he needed rheumatoid arthritis medication badly.

Matteson noted the man's rheumatoid arthritis (RA) was particularly aggressive, with more than 20 joints involved. Matteson started the construction worker on several rheumatoid arthritis medications, including six weeks of steroid treatment followed by a combination of disease-modifying antirheumatic drugs (DMARDs).

Within three weeks, the 45-year-old was back at work. A few months later, the man stopped showing improvement and Matteson changed his rheumatoid arthritis medications to include a tumor necrosis factor (TNF) blocker -- a drug that helps prevent inflammation and preserve joint health. "Now, he has virtually no disease activity at all, he's working full time, and he's doing everything he needs to do," Matteson says.

As recently as 1990, a person diagnosed with rheumatoid arthritis may have been put on Motrin or a pain reliever and sent home. A common notion then was to wait until X-rays showed evidence of joint damage before starting aggressive treatment with rheumatoid arthritis medication. But over the past 15 years, experts have learned that early aggressive treatment is essential to help prevent long-term damage and disability from rheumatoid arthritis.

Rheumatoid Arthritis Medication: Live Longer, Live Better

Many people think of rheumatoid arthritis as a debilitating chronic disease, but not necessarily a deadly one. Yet, people with RA have been found to have a life expectancy that's shorter than people without the disease. That's largely because they're at increased risk for other conditions, like heart disease, renal disease, infections, and respiratory problems.

Disease-modifiying medications such as DMARDs and TNF blockers can do more than just keep you from being disabled; they may add years to your life.

"Disease-modifying treatment early on has led to a lessening of disability from rheumatoid arthritis, and even an improvement in patients' life expectancy," Matteson says. "When you begin these treatments early on, you are less likely to develop erosive disease in the joints, and less likely to develop other, related conditions such as lung disease, vasculitis, and pericarditis, all of which are major contributors to early mortality in people with rheumatoid arthritis."

Several major studies have documented the dramatic benefits of early treatment with rheumatoid arthritis medication. Research presented at the 2006 American College of Rheumatology Annual Scientific Meeting found that early, intensive treatment with a combination of rheumatoid arthritis medication offers a chance of remission.

And a study by Matteson and his colleagues, published in Arthritis Care and Research, found that patients who developed RA more recently, and are receiving more aggressive treatment, require as much as 35% fewer joint replacement surgeries than people diagnosed 20 years ago, Matteson tells WebMD.  Finish story at:

http://www.webmd.com/rheumatoid-arthritis/features/rheumatoid-arthritis-medication-right-care?ecd=wnl_cbp_031909

Cymbalta May Cut Chronic Low Back Pain
Cymbalta Trumps Placebo at Easing Chronic Low Back Pain in Study; Dose May Matter
By Miranda Hitti
WebMD Health News
Reviewed by Louise Chang, MD
http://www.webmd.com/back-pain/news/20080826/cymbalta-may-cut-chronic-low-back-pain


Aug. 26, 2008 -- Cymbalta, a prescription drug used to treat depression, generalized anxiety disorder, diabetic nerve pain, and fibromyalgia, may ease chronic low back pain.

That's according to a study presented in Madrid at the 12th congress of the European Federation of the Neurological Sciences.

The study included 236 adults with chronic low back pain who weren't depressed. They took Cymbalta or a placebo drug daily for 13 weeks.

Average weekly pain scores, measured before taking Cymbalta or the placebo and again at the end of the study, showed greater improvement in the Cymbalta group.

But that wasn't true in a second study, also presented in Madrid. In that study, there weren't any significant differences in before-and-after average weekly pain ratings among adults with chronic low back pain who took Cymbalta or a placebo once daily for 13 weeks. Cymbalta trumped the placebo from the third to the eleventh weeks, but not for the entire study overall.

Why did those results differ in the two studies? That's not clear. But the studies did differ slightly in their doses.

The study in which Cymbalta bested the placebo for average weekly pain scores used a 60 milligram dose of Cymbalta, a 120 milligram dose, or a placebo. The study in which Cymbalta didn't beat the placebo also included a lower (20 milligram) dose of Cymbalta, as well as the 60 milligram dose, 120 milligram dose, and placebo.

In both studies, side effects more commonly reported by patients taking Cymbalta included nausea, dry mouth, fatigue, diarrhea, excessive sweating (hyperhidrosis), dizziness, and constipation. That's in line with previous research on Cymbalta.

Both studies were funded by Eli Lilly and Company, the drug company that makes Cymbalta.

Vitamin D  A Neglected Analgesic for Chronic Musculoskeletal Pain  Source: Pain Treatment Topics, June 2008

by Stewart B. Leavitt, MA, PhD
ImmuneSupport.com

Found at:  http://www.immunesupport.com/library/showarticle.cfm?id=8938&T=CFIDS_FM&B2=EM062508F
06-20-2008

[Note: The full text of this research-based, expert-reviewed guide for healthcare professionals, with related educational materials for patients, is available free at the nonprofit Pain Treatment Topic Website (http://pain-topics.org/clinical_concepts/vitamind.php)]

Helping patients overcome their chronic musculoskeletal pain and fatigue syndromes may be as simple, well tolerated, and inexpensive as an extra daily supplement of vitamin D.

A comprehensive Report and a shorter Practitioner Briefing review the clinical evidence and provide clinical guidance for healthcare providers.

A special Brochure for patients explains what vitamin D is, how it works, and how it can help them.

Source: Pain Treatment Topics, June 2008. By Leavitt, SB. http://pain-topics.org [E-mail: info@pain-topics.org]

This Page will be dedicated to New News on Chronic Pain Diseases

http://www.artzoo.com/health/rsdcrps.htm


Above is a link to the following article on CRPS/RSD

Please Read and if you need more help, go to the link above



Reflex Sympathetic Dystrophy Syndrome (RSDS) also called Complex Regional Pain Syndrome (CRPS), is a painful disorder affecting the nerves, blood vessels, muscles, tendons and bones, in later stages the immune system. click here for new help

CAUSES: Trauma (broken bones, sprains, bruises), electric shock, surgery, arthritis, infection, improper injections or nerve damage from compression (carpal tunnel/cubital tunnel syndromes) can cause the sympathetic nervous system to go "crazy" causing a variety of chronic, painful, and sometimes bizarre symptoms. Surgery to try to remedy RSD/CRPS (pumps, nerve decompression, etc.) can make the condition worsen and enable it to spread to other parts of the body. Repetitive motion, vibrations, temperature changes, stress, caffeine, alcohol, red meat, sharp cheese, and foods containing solanine which include tobacco can cause a worsening of symptoms or trigger a flare up.
( See page 7 for list of foods with the poison solanine )

There is no known explanation of why this disorder occurs in some people and not others. Some believe that sympathetic maintained pain is caused by nerves and tissues that have healed with changed DNA, The bodies immune system then sees the nerves and tissues as "enemies" and attacks them causing inflammation and pain. This autoimmune response can explain why some women with RSD have remissions while pregnant. Hormones produced during pregnancy, responsible for keeping the bodies immune system from attacking the fetus, temporally stopped the RSD.

Others believe that a person is genetically predisposed to this condition by an over active sympathetic nervous system. Some think that susceptibility factors may include genetic predisposition (HLA typing) and in some patients a tendency towards increased sympathetic activity. This includes cold hands, hyperhidrosis (excessive sweating), or a history of fainting.(4)

Many think RSD is a result of misfiring or overactive sympathetic nerve fibers. An abnormal response to the normal pain cycle ensues, resulting in sympathetic maintained pain.

SYMPTOMS: Not all patients have exactly the same symptoms but the most common are: severe sensitivity to touch and temperatures, swelling, muscle spasms, myoclonic jerks, sweating, muscle ticks, inflammation, anxiety, depression, trouble concentrating, irritability, bone loss, skin lesions (rare), immune system problems, with the most prominent symptom being chronic pain. The pain has been described as burning, shooting, stabbing and aching. Some report bizarre feelings of cold water being splashed on the affected area, goose bump, and distonia (difficulty initiating movement). Over time symptoms can change, become worse or better and sometimes spread to other areas apart from the original injury. Pain has the tendency to become less severe the longer the RSD/CRPS is present.

Other symptoms of RSD/CRPS, not always mentioned, caused by the malfunction of the sympathetic nervous system: allergies/asthma, absence or abnormal menstrual cycle, chest pain, cardiac complications, chronic fatigue, autoimmune disorders such as arthritis and Crohn's disease, IBS ( digestive problems-acid reflux, constipation ), fibromyalgia/myofacial syndrome, hypertension, Raynauds disease, increased sensitivity to external stimuli ( sight, sound, smell ), insomnia, memory loss, migraine headaches, mood swings/anxiety, tremors, visual disturbances.(8)

Bl�mberg, J�nig and Koltzenburg have discovered a new source of pain. It originates from the deep chemoreceptor c-fibres in muscle and bone. These chemoreceptors become activated with inactivity. Intermittent walking reduces the incidence of deep pain." (1 ) This explains why exercise is crucial in treating RSD/CRPS. Physical activity also triggers the release of endorphins, pituitary gland hormones, that function as natural opiates. Endorphins are considered to be 200 times more potent than morphine.(6) The word endorphin means "morphine within".

Many people with chronic pain do not manufacture enough endorphins, this causes two problems. The first is that your body is sending inappropriate pain messages, and it is not releasing endorphins to protect against the pain. The second is a lack of sufficient endorphins causes hypersensitivity to pain. There are ways we can work to increase our endorphins naturally and with medications.

Naturally occurring endorphins can be obtained by: 1. Exercise 2. Biofeedback, Meditation, Prayer 3. Bodywork, Massage, Hydrotherapy 4. Laughter. Endorphin research suggests that there is a link between our emotional state and the health and well-being of our immune systems. So pleasant memories, exercise, sexual activity, laughter, are all ways we can increase our levels of endorphins and therefore help our body to fight pain through its own natural chemicals.(7)

The body weakens and pain increases when there is a dominance of repressed, bottled up danger emotions such as pain, anger, and fear. It is strengthened as a result of increased expression of such positive emotions as happiness, pleasure and love. Evidence shows that our emotions and thoughts "talk" with the billions of defense cells in our immune system. The "limbic-hypothalamic system" of the brain is known as the major mind-body connector modulating the responses of the endocrine, immune, and autonomic nervous systems ( which includes the sympathetic nervous system ) in response to mental suggestions and beliefs. Sustaining a belief that recovery is possible can mobilize a healing response by activating all these major systems of mind-body communication and healing.(9)

What is the prognosis?
With regular exercise, taking good care of yourself mentally and physically, effective symptom treatment, good nights sleep, good nutrition, de-stress daily, and most important eliminating nerve stimulating factors such as caffeine, nicotine, and drugs/foods that stimulate the nervous system. The prognosis of a patient with RSD/CRPS is very good. You can learn to adapt and take control of your life again. Educating yourself and those close to you is empowering.

Don't give up hope! Hopelessness and stress can cause a worsening of symptoms. It's important to take care of the mind as well as the body. Look at the things you are able to do and not dwell on what you can't do. The best way to recover is to adapt to the changes this disorder causes to the body. It's OK to morn the way you once were. Everyone with a devastating disease, disorder, or injury goes through a period of grieving. Unless you are one of the lucky RSD/CRPS patients that experience a total remission, the best thing to do is, from now on, learn to work with your body the way it is. You will probably have a limited amount of activities you are able to do in one day. Get to know your limits, but sometimes push a little beyond. Some days will be better than others. Learn to pay attention to what your body is telling you and if it's time to stop an activity, rest, then continue when the pain subsides.

It's important to continue, or to start back slowly to performing everyday normal tasks such as doing dishes (wear gloves if water bothers you), making the bed, doing laundry. These tasks probably will take three times as long as it would before you were afflicted with RSD/CRPS. That's OK, doing laundry is just one of the big hurdles I have to mentally battle with myself to do 2 times a week. Every step of the process causes pain, the mental hurdle is the hardest. Once I get over that ( actually saying to myself " just do it" ) I break up the laundry process into stages, with stretching, and resting included ( sometimes it can take me three days to finish ). Problem solving, planning out how, doing, and eventually accomplishing these tasks starts you mentally feeling better and opens up your world to doing things you never thought possible.

Learn to adapt to and not fearing pain is very important. When you feel severe pain while doing something -stop the activity, take deep breaths ( count to 8 in, hold for 5 then slowly exhale ), try to relax all your muscles and your mind, slowly stretch the area with the pain, let the pain pass through you, while continuing taking deep, slow breaths. Concentrate on relaxing your whole body, try to visualize a beach with waves lapping at the shore, or a field of flowers, stand up and stretch if necessary. If you go back to doing the same thing again and the pain continues, repeat the above. Sometimes your body is just telling you it's time to do something else, get back to the task later, when the nerves have calmed down.

It's important to remember the nerves are sending FALSE signals because of the RSD/CRPS. The pain is not a warning of a serious injury, although it can stop you in your tracks ( your brain thinks there is a serious injury, setting off the sympathetic responses ). Mentally you have to relax and do the breathing technique mentioned above. Breathing and relaxation techniques can calm the sympathetic nervous system and sometimes stop or ease the nerve pain temporarily.

Take time out when you need to rest, 15 minutes resting can work wonders. Get as much support from other RSD/CRPS people, friends, family and therapists as you can. Sometimes those around us don't understand what's going on especially since we look normal, that's OK. It's your responsibility to educate them to this bizarre disorder (give them a copy of this paper).

TREATMENT: Work closely with your treating Physician. Don't ever let anyone tell you that you just have to live with this, or it's all in your head. If your doctor tells you this- it's time to get another doctor. Different people require different prescriptions or combination of drugs and therapies to treat the symptoms. A treatment that works for one RSD/CRPS patient may not work for another. It is necessary to try different combinations until the pain and other symptoms are controlled.

Strong narcotic pain medication is not recommended. The long term effects and complications outweighs their long term effectiveness. Strong narcotic pain medications can lower the pain tolerance levels in patients over time. Although opiates are now used to treat chronic pain, they should be used as last resorts, after all other means are tried. If you are taking strong narcotic medication for the pain, do not let anyone make you feel guilty, or let people treat you like an addict. Just tell them that your endorphins are not normal and the medication aids in keeping the pain controlled, periodically have your doctor review the effectiveness of the medications you are taking and possibly try new combinations.

There are a variety of prescription drugs available to treat the many symptoms of RSD/CRPS. Seratonin in chronic pain patients is depleted very quickly so some form of Seratonin reuptake inhibitor is needed e.g. tricyclic antidepressants.

Drug Therapy: Local or systemic corticosteroids, Muscle relaxants, Alpha-adrenergic and beta blockers, Analgesics, Anti-inflammatories, Anticonvulsants, Tricyclics and related compounds, Calcium channel blockers ( chronic pain causes the cells to become flooded with calcium and are stuck in the open position, which stops communication between nerve cells ).
Blocks: Nerve blocks, Sympathetic blockade, Intravenous regional blocks.

Good alternative treatments that might be effective are: biofeedback, pain management specialists, physical therapists, (HBO) hyperbaric enhanced oxygen chambers, acupuncture, botox, massage, visualization therapy, herbal supplements, nutritional therapy, hypnosis, T.E.N.S. and hydrotherapy.

When diagnosed in the first three months nerve blocks may be effective. It is important to get physical therapy (with a therapist who has knowledge of RSD/CRPS). If nerve blocks or other treatments are not working or making you worse, stop them and try something else. You are responsible for your own health care. Do not let anyone cast, perform surgery with out getting a second opinion from a RSD/CRPS specialist. Don't suffer through ineffective treatments.

Understanding the Nervous System
The Autonomic nervous system (ANS, which regulates individual organ function and homeostasis, and for the most part is not subject to voluntary control) is divided into two parts these parts are the sympathetic nervous system and the parasympathetic nervous system. The parasympathetic system is concerned with conservation and restoration of energy, as it causes a reduction in heart rate and blood pressure, and facilitates digestion and absorption of nutrients, and consequently the excretion of waste products. The parasympathetic nervous system is confined to the head and trunk. The parasympathetic nervous system (PNS) calms, relax�s & slows down the body. When the SNS is activated then for obvious reasons the PNS is inhibited simultaneously. In other words the brain shuts down its primary calming mechanism to force you to remain alert & ready to face the threat.

The sympathetic nervous system is what arouses us in an emergency situation. The sympathetic nerves come from the thoracic vertebrae, or ribs, and the lumbar vertebrae, or small of the back. The preganglionic nerves of both systems release acetylcholine ( a substance that allows messages to travel from one nerve to another ), but the postganglionic nerve of the sympathetic system releases norepinephrine ( a hormone, released by the adrenal glands, that increases blood pressure by narrowing vessels ). The response that the sympathetic nervous system invokes is know as the "fight or flight" response. It allows the body to either, stay and fight the threat or to run away. The sympathetic nervous system (SNS) commands release of various hormones in the body like the adrenaline, noradrenaline, glucocorticoids etc. through our various endocrine glands, like the pituitary & adrenal.

When the sympathetic nervous system is stimulated it can cause such things as dilation of the pupils of the eye, the constriction of blood vessels in the head, stomach, and extremities, increase in blood flow in the heart and muscles, the mouth dries up, adrenaline is pumped into the blood stream, air passages expand, the stomach stops working, the liver works hard to produce available sugar for energy, the kidneys slow down (secretion of urine is reduced), the bladder wall relaxes, the skin is stimulated to sweat and sometimes to contract its muscles. All of this is the body's natural defense mechanism. Stimulus to the sympathetic nervous system can also include environmental factors such as the cold. When damage occurs to the autonomic nervous system it can result in Reflex Sympathetic Dystrophy Syndrome/Chronic Regional Pain Syndrome (RSD/CRPS).

Anyone can get RSD and there is now an estimated seven million people affected in to United States alone. Because the Sympathetic Nervous System effects so many different systems of the body, RSD/CRPS is a complex and little understood disorder. Sympathetic maintained pain is the most common. When pain occurs in the damaged area, the sympathetic nervous system takes the pain impulses and continues to fire off neurons along major nerves continuously, sometimes for days. The pain can be caused by something so simple as just touch, a breeze, certain movement, or temperature change.

Anatomy of Pain: pain signals travel from your peripheral nerves to your spinal cord to your thalamus, a message sorting and switching station in your brain. The thalamus sends two types of messages. One goes to your cerebral cortex, the thinking part of your brain, which assesses the location and severity of damage. The second is a "stop-pain" message back to the injury site to tell local nociceptors to stop sending any more pain messages. Once alerted, your brain doesn't need additional warning. But sometimes, this mechanism fails and pain persists.

Meanwhile, your cerebral cortex relays the pain message it received to your brain's limbic center. Your limbic center produces emotions, such as sadness or anger, in response to pain messages ( this is why relaxation and deep breathing is so important to control the emotional pain response ). Your limbic center can affect the way your cerebral cortex perceives pain messages, and can lessen or intensify your pain. Your cerebral cortex also sends messages to your autonomic nervous system, which controls vital body functions such as breathing, blood flow and pulse rate.

Several types of neurotransmitters (proteins and hormones produced in your brain or nervous system) can increase or decrease pain signals. A hormone--one of the prostaglandins--speeds transmission of pain messages and makes nerve endings more sensitive to pain. A protein called substance P continuously stimulates nerve endings at the injury site and within your spinal cord, increasing pain messages. Seratonin and norepinephrine (nor-ep-i-NEF-rin) seem to decrease pain by causing nociceptors to release natural pain-relievers called endorphins. (5)

(4) Diagram of pain response in nerves     People with impaired sympathetic nervous systems can be susceptible to low blood pressure and fainting. When the sympathetic nervous system becomes over aroused it can result in panic attacks, general anxiety disorders and stress. The sympathetic nervous system also integrates brain and immune function.

What research is being done? Investigators are studying new approaches to treat RSDS and intervene more aggressively after traumatic injury to lower the patient's chances of developing the disorder. Scientists are studying how signals of the sympathetic nervous system cause pain in RSDS patients. Using a technique called microneurography, these investigators are able to record and measure neural activity in single nerve fibers of affected patients. By testing various hypotheses, these researchers hope to discover the unique mechanism that causes the spontaneous pain of RSDS, and that discovery may lead to new ways of blocking pain. (2)

Words Of Hope from a RSD/CRPS survivor:
(Diagnosed in 1994) There is hope, you can survive this disorder!
Take good care of yourself everyday. It's important to rest, and also to get plenty of exercise, gentle stretching and strength training. Follow the guidelines below for diet and exercise tips. There is always a solution to the everyday problems associated with RSD/CRPS such as: assistive devices for things that are difficult for you to do: opening jars, cutting, holding books, steamer floor mops. It's OK to wear braces during flare-ups, but it's important not to wear them all the time, only when you need to keep going when the pain is deterring you. Patients who take responsibility for participating in their own recovery do better than those patients who see themselves as helpless victims of their disorder. Please ask for help if you need it.
Watch out for Denial:
Depression - Emotional turmoil - Negative thinking - Irritability - Anger - Loss of self esteem

Understand that it's your responsibility to make yourself well. Chronic pain causes so many emotional difficulties, especially making it very hard to even start on the road to recovery. In taking that first step ( wanting to get well ) you start to take control. If you aren't able to find a positive attitude alone, seek counseling with a support group, pain management clinic, biofeedback, or cognitive therapist. Your mental attitude every day can effect how you feel. Unfortunately there are still going to be bad days when you just aren't able mentally or physically to do the things that are positive for your recovery. That's OK, don't allow yourself to feel guilty or anxious about it, the bad day or days will pass, you get up, brush yourself off, and get going again.

Your Daily Plan
You have the power to reduce your pain - you just need to know how. The pain management skills below will help you. These Survival Skills will enable you to get back in control of your life, encourage the body's natural healing processes, and reduce your pain. All of the methods suggested here can be used in conjunction with conventional medical treatments. When you help yourself, you empower yourself. You feel in control of your life. You may not like it but the pain is here, and part of your life. Try to accept it, and do the best you can to take good care of your body and mind. You are the one with the power to give yourself wonderful release from pain with the techniques here. Don't let the days just drift by. Give them shape by planning exercise, rest, pacing activities, social contacts, work and fun.

Scanning: No matter what you are doing, and especially when you are doing something that causes pain, stay aware of any tension held in your body. You can "scan" your body by mentally going head to toe to check for tense muscles. Some people can just go through a mental check list such as: neck muscles relax, face relax, arms relax, and so on. Another way to relax is to tense the muscle then release it, going through all the muscle groups.

Breathing: When you are resting, meditating, or just feeling a lot of pain use the breathing techniques mentioned on page 2.

Pacing: Make sure you space out activities, breaking them up into smaller sections. Vary your activities and the posture needed for them. Plan your meals for the day, decide which tasks need to be done, and split them up with resting and stretching periods.
Exercise: Plan your exercise. Whether it's walking, swimming, stretching, yoga or some other activity plan it at a time of day you feel your best. Perform a set of exercises that are appropriate for you and your pain. Do them in a relaxed, meditative state. Don't forget to take advice on which exercises are best for you from an expert.
Relaxation: Best taken after your exercise session. Let yourself go into a deep relaxation for about 15-20 minutes at least once a day. Sitting watching TV is not the equivalent of relaxation. You need to lie down and really let go so that you allow the production of endorphins, natural pain relieving agents, to flow. The relaxation will leave you feeling peaceful, centered with less pain.
Social Contact Try to have close contact with at least one person during the day, family or close friend. I know it's not always possible, but - a hug a day helps keep the pain away! If you can't do this physically, contact a friend by phone, write a letter or through your support group.
Leisure Activity First thing in the morning, before you get up, ask yourself, "What am I going to do to enjoy myself today?" Decide on at least one thing, then make sure you do it.
Work: It doesn't matter whether the work is voluntary, paid, or studying. Try to do some every day if you can. It will improve your self-esteem and will keep you in touch with the 'real' world. Voluntary work can be the most rewarding. Find some type to do at home if you can't go out. If you are working full or part time at a job, make sure you schedule rest and meditative time during breaks or lunch.
Fun Laugh and Smile: The best therapy of all! Pain relieving endorphins are released with every smile. You will look and feel better for having some fun in your life. It's not always easy, if it doesn't come naturally, you need to plan to have laughter in your life. There are plenty of videos, books and tapes which are guaranteed to make you smile or even laugh out aloud. There is also a meditation/relaxation technique which combines breathing and smiling so that you keep a smile on your lips, which makes you feel calmer and happier - and, yes, it really does work! (10)

Unable to exercise? Try to find a Hyperbaric/Oxygen chamber (HBO) near you, and take a session of one hour treatments. This can replace exercise until you are able to exercise on your own. Do not pay more than $65 per treatment. Check around to get the best prices, some chiropractors offer HBO treatments. Make sure that they are using oxygen enhancement, otherwise the treatments are not effective. The extra oxygen given to you in the mask helps the nerves and injured tissues to heal. This treatment over a period of a month helped to stop all of my sympathetic maintained pain, took the swelling and stiffness out of my joints, and had me sleeping at night with energy the next day. The regular pain was less and I just overall felt better. The treatments were so successful I was able to start to exercise on my own, replacing the treatments of the HBO.

Battle the sensitivity: You have to find ways to desensitize effected areas: fleece, lambs wool, or soft soft cotton can help. Moisturizer applied often can also help, the more you touch the sensitive area, the less sensitive it becomes. Experiment to find solutions that work for you. Wearing gloves, soft cloth cotton or silk over the effected areas can also help.

Here are some basic guides to follow:
Most Important! No CAFFEINE, or anything that contains caffeine (including chocolate, OK OK you can cheat once in a great while with the chocolate if you watch all other intake) caffeine stimulates the nerves. If you are addicted to caffeine the most painless way to stop is to drink ginseng tea, (found in most grocery stores) it gives a lift and eases caffeine withdrawals such as headache and irritability. Eventually you should give up the ginseng (a mild stimulant) and drink caffeine free herbal teas.
No Alcohol
Stop Smoking nicotine is a nerve stimulant, tobacco has a poison called solanine, that causes pain in muscles. There are nicotine free cigarettes that contain passion flower, a muscle relaxant, and other natural ingredients that if you really need to smoke, you can satisfy the cravings until you kick the habit.
Click here to e-mail me for info on cigarette replacements.
Do not use nicotine patches or gum, they can cause a worsening of symptoms.

Foods you must avoid:
Wheat and foods containing gluten. (oats, barley malt, modified food starch, etc.). Substitutes: corn and rice pasta available at health food stores, as well as rice, sprouted grain bread and other wheat free breads (spelt, millet).
Avoid foods in the night shade family: tomato, white potato, eggplant, peppers, and tobacco, they contain solanine. Solanine is a poison, a natural carcinogen causing pain in the muscles, and aggravating symptoms. (Red skinned potatoes are recommended)
Sugar substitutes: aspartame, saccharine
Avoid food preservatives and additives as much as possible.
Animal protein: avoid red meat, avoid antibiotics in poultry & eggs if possible in your area.

Read all food labels so you know exactly what you are consuming.
Foods you must avoid at first: then slowly add one at a time back into your diet. It's recommended to keep a journal of symptoms when you introduce a food and avoid ones that cause trouble.
Dairy products and foods containing dairy: use Rice Dream or Almond milk to substitute.
Sugar: check all food labels other names for sugar include: brown, granulated, powdered, dextrose, fructose, galalactose, glucose, glycogen, lactose (milk sugar) maltose, mannitol, monosaccharides, polysaccharides, sorbitol, sucrose, barley malt, honey, maple syrup, molasses, maple sugar, date sugar, turbinado sugar. Use stevia in replace of sweeteners.
Nuts: peanuts, pistachios, and walnuts
All fruits: and fruit juices, start back slowly to fruits by eating apples, grapefruits, strawberries, and melons.

What you can eat freely unless you are allergic:
eggs
all vegetables and legumes (except mentioned above)
fish/shell fish
whole grains: kamut, millet, brown rice, wild rice, spelt, teff
nuts: almond, brazil nut, filbert, macadamia nut, pecan, pine nut
poultry: chicken, turkey, Cornish hen, duck, goose, game birds

Eat four to five small meals a day this gives the body the fuel it needs otherwise the body will rob the muscles of essential nutrients.
Drink water a gallon a day if you can, distilled only.
Psyllium: take one Tbls in large glass of water with aloe juice 2X a day to promote and maintain healthy bowels and rid the body of toxins.
Essential Supplements: use nondairy, gluten, yeast, artificial color and flavor free only. Click on supplement names to purchase
A 5,000iu (protects the cells)
B complex, high potency, time released (helps restore healthy nerve function)
C at least 2000mg-5000mg a day (antioxidant, reduces inflammation & pain)
Calcium 2,000mg a day (strong bones, aids in neuromuscular activity)
Coral calcium if you can get it
D 400iu daily (relieves muscle spasms and pain)
E 400-600iu daily (antioxidant, maintains healthy nerves)
Glucosamine 1.5g a day (joint health, involved in formation of tendons ligaments, and bones)
Chrondroitin 1.2g a day (important in creating cartilage in joints)
Magnesium 750-1000mg a day (prevents: depression, dizziness, muscle twitching and weakness)
Lecithin 1,200mg 2X a day (helps nervous system, and is involved with neurotransmitters)
Herbal Supplements:
Primrose oil (essential fatty acid, anti-inflammatory) take as directed
Acidophilus friendly bacteria use non dairy formulas (maintains healthy digestive tract)
Spirulina high protein microalgae (contains nutrients that cleanse and heal the body)
Coenzyme Q10 100-200mg a Day (improves tissue oxygenation)

Topical Remedies: Rosemary oil and lavender oil diluted with water or witch hazel rubbed onto the skin can relieve pain.
Zoltran* (Caspian cream) made from hot peppers can relieve pain (caution! apply with cotton this cream is hard to get off and really can burn) it works to inhibit substance P thought to be linked to pain.
Moderate Exercise is crucial in for recovery, in addition to physical therapy walking or hydrotherapy, depending on where you have the RSD/CRPS, at least three times a week (do not overexert yourself to much, this can aggravate symptoms) followed with gentle stretching. Try to stretch every day,

Fibromyalgia patients exercise is a must, it will help with insomnia and remove the toxins trapped in the muscles. Symptoms will improve after your body gets used to exercise. (Candida infection click here is common in people with fibbromyalgia). In addition to the above listed supplements you should take Melatonin, sustained release formula is best (promotes a sound sleep) take 1-2 hours before bedtime, use as directed.

Please show this information to your Doctor and get approval before following this advice.

Are you depressed? It is common for RSD/CRPS and Fibromyalgia patients to suffer from depression. Seratonin levels in the body get depleted very quickly with chronic pain, talk to your doctor about this. There are many low dose antidepressants that work well restoring Seratonin levels, and can help ease chronic pain. Anyone with chronic pain should be taking some kind of medication to keep the Seratonin levels normal.
Raynaud's Disease/Phenomenon
Affecting the hand and feet, this disorder causes hypersensitivity to cold. When the hands/feet are exposed to cold temperatures or to vibrations/tapping the small arteries contract and spasm, as a result the fingers and toes are deprived of oxygenated blood, which causes severe numbness.

Raynaud's many times accompanies RSD/CRPS.
Recommended
Coenzyme Q10 100-200mg a Day (improves tissue oxygenation)
E 200iu (improves circulation)
Calcium 1500 mg a day
Magnesium 750mg a day
Zinc 50mg daily ( do not exceed over 100mg daily from other supplements you are taking)

Highly Recommended Web Sites and Resources:
Alternative Health: mountaingems.net & healingcrystals.net
1. To find books, info, herbal and vitamin supplements and on-line support: http://yourhealthcare.net

2. A wonderful pain management web sight: http://painmanagementtheory.homestead.com

3. Assistive devices, tools and more on-line catalog: http://www.freedomlivingdevices.com

4. CAN DO 2315-G East Palmdale Boulevard Suite B-47 Palmdale, California 93550 (661) 274-8733

5. Innovative Solutions for Disability low cost assistive devices: http://www.ocgoodwill.org/atec/atec_main.html

6. Great site for therapeutic pillow devices for sleeping, supports for legs,arms, and backs: http://www.gr8lakesmed.com
I use this daily for neck and back pain and pain in arms, excellent product: Core Soothe-A-Ciser Price: $27.99 Helps relieve tension headaches and neck pain. Details: Patented design helps you relax and restore proper neck posture, which may be causing headaches. This pillow also makes a good cushion to use with the Cervical Traction System. This pillow IS NOT designed for sleeping. High quality, precision-cut foam covered with a durable cotton/poly case. from great lakes medical

7. Assistive living devices: everyday, pleasure, work: http://www.helpmates.on.ca/shop.asp

8. Cirque Glidepoint Computer mouse replacement for disabilities: http://www.glidepoint.com/products/easy.html

9. Computer ergonomic helpers: http://www.ergomart.com




Going to pains to meet a hero
By Jen Kelly
Herald Sun    March 14, 2008

When sports-mad Tim Welsh needed a lift while battling crippling pain, doctors turned to the teen's sporting hero.

Royal Children's Hospital staff lined up a surprise visit from Tim's football hero, Essendon's Jason Winderlich.

Tim's face lit up when his favorite player -- who has overcome several football injuries, including recent back trouble -- visited him in the hospital's cafe garden while he was eating lunch.

"It was probably the best day of my life," said the mad Bombers fan, who is a descendant of Essendon's first captain, George Stuckey, and is named after Essendon legend Tim Watson.

Winderlich inspired Tim, 12, with his tips on how to handle pain.

But his condition was far from his mind when the Bomber midfielder gave him the match jumper he wore for his 17 games last year, after signing it.

"It put a big smile on his face," said Winderlich, 23. "It was worth going in just to see the look on his face.

"He's a terrific kid, and I just hope everything goes well for him with his rehab."

For months Tim has battled a condition called complex regional pain syndrome.

By the time the year 7 student from Warrnambool reached the RCH earlier this month, he could not walk without crutches because of pain.

Vertical strips below each of Tim's kneecaps, about 10cm long and 5cm wide, are so sensitive that the slightest touch causes him agony.

He has to lean against the wall while showering to prevent water touching the painful areas, and has to sleep on his side, without bed coverings touching the two areas.

Tim endures 15-minute physiotherapy sessions every waking hour while at hospital, as well as twice-daily sessions with a physiotherapist.

But he is fast improving, walking 70m without crutches within a week of starting the intensive physiotherapy regimen.

Pediatric rheumatologist Dr Roger Allen initiated the visit when Tim continued to wear a No 8 (Winderlich's number) Bombers jumper to physio sessions.

"Tim hasn't told me, but I think he was getting a bit of strength from it (wearing the jumper) said Tim's mum, Gaye Welsh.

Tim has been plagued with pain since last year, soon after he was elected a sports house captain.

"He's absolutely sports-besotted, really sporty," Mrs Welsh said.

"He would have last year represented the school in pretty much every sport the school is involved in -- things like cricket, soccer, football," she added.

Tim hopes to soon resume playing sport and should overcome the condition in time.

To donate to the appeal  go to http://www.goodfridayappeal.com.au
 
Thanks to Jason at http://rsds-crps-news.blogspot.com/ for this article.
 
 
http://www.rsds.org/electronic%20alert%20archive/HeraldSun_03142008.html


Fear Can Lead to Serious Illness:

http://www.beliefnet.com/story/176/story_17682_1.html?WT.mc_id=NL44

Epidemic
Main Category: Pain / Anesthetics
Also Included In: Neurology / Neuroscience ;  Seniors / Aging ;  Psychology / Psychiatry
Article Date: 18 Feb 2008 - 0:00 PST



The public health problem that needs to be addressed next is the epidemic of pain, according to pain medicine physicians who came together to discuss the latest in pain research and treatment at the 24th Annual Meeting of the American Academy of Pain Medicine (AAPM), February 12-16 at the Gaylord Palms in Kissimmee (Orlando), Florida.

"In recent decades, Americans, with the help of their physicians, have been asked to stop smoking and lose weight. Now it is time to focus our efforts on undertreated pain," says B. Todd Sitzman, MD, MPH, AAPM President and medical director of Advanced Pain Therapy, PLLC, a comprehensive pain clinic affiliated with Forrest General Hospital Cancer Center in Hattiesburg, Miss.

An estimated 60 million Americans live with chronic pain, a condition that is more prevalent among the elderly. As the 75 million Baby Boomers move toward retirement, more and more Americans are expected to have untreated or undertreated pain. Pain is vastly undertreated for a variety of reasons including misconceptions regarding opioid addiction, lack of access to care, cultural norms, and physician concerns about prescribing pain medications for chronic pain.

Pain Medicine is a medical specialty which utilized multiple modalities to diagnosis and effectively manage chronic pain. Additionally, pain medicine physicians deliver comprehensive care by combining techniques from several medical specialties. For instance, physical medicine techniques can be complemented by psychiatry and neurosurgery skills. "We treat pain aggressively to help our patients live fulfilling, productive lives," Sitzman adds.

Plenary Briefs

The Decade of Pain, Keynote Speaker, Michael Cousins, MD

Persistent pain is a disease in its own right; this concept is now leading to new specific treatments aimed at physical, psychological, and environmental components of this major disease, including genetic predisposition.

"In the future, the diagnosis and treatment of persistent pain will be markedly different," continues Cousins. "Instead of using drugs that provide only symptomatic relief, such as morphine, new drugs, such as NaV1.8 blockers, will target the disease process."

Persistent pain has a prevalence of 1 in 5 of the population and the Pain Management Research Institute studies reveal an annual cost of $1.85 billion per 1 million population.

"Medical specialists have recognized that additional specialist training in pain is needed," says Cousins. "Too few pain medicine specialists are being trained, and not enough patients are getting access to effective treatments. Pain management needs to become a fundamental human right: a bundle of initiatives will be needed in medicine, law, ethics, politics," concludes Cousins.

Altered Central Nervous System Processing in Chronic Pain, M. Catherine Bushnell, MD

"Chronic pain is associated with changes in the brain and can lead to premature aging of the brain, with an accelerated loss of gray matter," Bushnell comments. "Similar changes are found in other stress-related disorders, such as post-traumatic stress disorder." She adds that chronic pain patients also have neurochemical changes in the brain.

"Many chronic pain patients complain of problems with concentration and memory. These complaints could be related to the structural and chemical changes that appear to take place in the brains of chronic pain patients. Patients should be aware that chronic pain may have an impact on their lives that extends beyond just the direct effects of living with pain," concludes Bushnell.

Opioid-Induced Hyperalgesia, Jianren Mao, MD, PhD

Opioid analgesics can increase pain under certain clinical conditions, which is referred to as opioid-induced pain. According to Mao, opioid analgesics can activate the cellular mechanisms responsible for pathological pain. He says there is a cross-talk between mechanisms of pain and opioid-induced pain, and opioid-induced pain can contribute to chronic pain conditions.

"Opioid-induced pain is an unwanted adverse consequence from opioid therapy, which hampers the opioid analgesic effect for chronic pain management," remarks Mao. "Rational use of opioid analgesics may minimize the impact of opioid-induced pain and improve clinical outcomes of opioid therapy. More clinical and preclinical studies are needed to understand the mechanisms of opioid-induced pain and to guide clinical use of opioid analgesics."

Motion Preservation: A Paradigm Shift in Spine Surgery, Paul Anderson, MD

Motion sparing treatment of the spine is rapidly gaining interest. Anderson says that the early results for disc arthroplasty, interspinous process device and dynamic stabilization are encouraging; however, long-term results are lacking and further research is needed.

"The rationale for motion preservation technology is to avoid fusion thereby decreasing the likelihood of adjacent segment degeneration will allow earlier return to activities, maintain viscoelastic properties of the motion segment, reduce surgical morbidity, and decrease postoperative bracing requirements," Anderson explains.

Anderson says that the short-term outcomes of lumbar and cervical arthroplasty are comparable to fusion, while interspinous process distraction has been shown to have significantly better results than epidural steroid injections in spinal stenosis patients.

"Motion sparing technology offers hope that reduced secondary diseases as a result of altered mechanics from surgery will be avoided. Additionally these techniques may be associated with shortened recovery time and earlier return to activities," concludes Anderson.

Who Needs Back Surgery? Richard A. Deyo, MD, MPH

Several lines of evidence suggest we may be doing too much back surgery in the United States. The evidence that this may be true includes expert opinion, comparison with other countries, geographic variations in surgery rates within the US, rapid increases in certain types of surgery, patient outcomes in areas with high or low surgical rates, and the preferences of patients when they are well informed.

According to Deyo, surgery offers better relief from leg pain, or sciatica, than from back pain. Whether it helps people who have back pain alone is controversial.

"Even in situations where surgery is likely to be of benefit, there is a choice, and reasonable people may choose for or against surgery depending on their own preferences and values," Deyo continues. "Patients should be involved in the decision-making."

"Back surgery is not helpful for everyone with low back pain; only those with some very specific conditions who also have leg pain with their back pain may benefit. Even then, surgery rarely offers a complete cure, and a choice of either surgical or non-surgical treatment is usually reasonable. Patients should understand that even people without back problems/pain often have abnormal MRI scans of the spine, so an abnormality doesn't necessarily mean surgery is going to help. Surgery is only likely to help if the MRI images match up with specific symptoms and findings on a doctor's examination. It's always wise to consider a second opinion when back surgery is recommended," he concludes.

Quality Patient Care, AMA President Nancy Nielsen, MD, PhD

As a champion of medical quality, Nielsen represents the AMA on initiatives including the National Quality Forum, the AMA Physician Consortium for Performance Improvement, and the Ambulatory Care Quality Alliance.

State of Drug Diversion in the United States, David Joranson, MSSW

This presentation will define diversion and discuss various types of diversion and the nonmedical uses of opioid pain medications that create illicit demand. It also will address the important distinction between diversion of prescribed versus unprescribed prescription analgesics and diversion control methods that target sources of diversion without interfering in medical practice and patient care. Sources of information about diversion will also be provided.

The Dark Side of Addiction: Relevance to Pain Medicine, George Koob, MD

The conceptualization of drug addiction as a disorder that consists of neurobiological adaptive mechanisms involved in emotional processing may be relevant to pain management and addiction vulnerability.

"Addiction has been conceptualized as a syndrome that moves from an impulse control disorder to a compulsive disorder to produce excessive drug intake and loss of control over drug intake. Impulsivity is driven by key neurochemical elements," says Koob.

Acute withdrawal from all major drugs of abuse produces increases in reward thresholds, increases in anxiety-like responses, and increases in CRF levels in the brain. CRF antagonists block excessive drug intake produced by dependence. "This brain stress response system as hypothesized has a critical role in driving the compulsivity associated with the loss of control over drug seeking behavior and may be a potential site for overlap with the emotional component of chronic pain. These same neurochemical circuits may be a key component of the normal neurocircuity of emotional processing that is vulnerable to disruption in other psychopathology associated with reward function," Koob concludes.

The Nature and Nurture of Pain, Jeffery Mogil, PhD

Pain is associated with much interindividual variability, including the propensity to develop chronically painful pathologies after injury or infection. Genetic-linkage mapping efforts in mice and targeted genetic association studies in humans are beginning to identify the genes underlying much of the variability noted in these traits.

"In our laboratory, we have recently uncovered a number of genes associated with thermal and inflammatory nociception," explains Mogil. "These efforts may lead to new clinical treatments for pain or facilitate the patient-centered, individualized treatment of pain using current pharmaceuticals. In addition, we are now paying greater attention to the identification of environmental factors that affect pain behavior in mice. We have recently observed modulation of pain in mice by purely social factors. These data can be interpreted as providing evidence for the existence of empathy for pain in this subprimate species."

"The AAPM annual meeting is a gathering of pain medicine experts from across the country who spend three days together sharing information about the latest research, patient care, and regulatory issues that affect the practice of pain medicine," says Dr. Sitzman.

----------------------------
Article adapted by Medical News Today from original press release.
----------------------------




Chronic Pain Can Alter The Brain

Study: Scan of Sufferers found activity in areas that should be at rest.


CHICAGO - Brain scans of people in chronic pain show a state of
constant activity in areas that should be at rest, U.S. researchers
said on Tuesday, a finding that could help explain why pain patients
have higher rates of depression, anxiety and other disorders. They
said chronic pain seems to alter the way people process information
that is unrelated to pain. "It seems that enduring pain for a long
time affects brain function in response to even minimally demanding
attention tasks completely unrelated to pain," the researchers wrote
in the Journal of Neuroscience. Dante Chialvo, a researcher at
Northwestern University in Chicago who worked on the study, said:
"People with chronic pain - meaning pain that lasts more than six
months after their injury - have many other issues that affect their
quality of life as much as pain. It is not known where they come
from." Recent studies have shown that in healthy people, certain
regions of the brain take over during a resting state, something known
as a default mode network. "It takes care of your brain when your
brain is at rest," Chialvo said in a telephone interview. When a
person performs a task, this network quiets down, he said, but not in
people with chronic pain. Instead, a front region of the cortex mostly
associated with emotion is constantly active, disrupting the normal
equilibrium. To study this activity, Chialvo did a type of brain scan
known as functional magnetic resonance imaging on 15 people with
chronic back pain and 15 healthy people. They gave their volunteers a
simple attention task - tracking a moving bar on a computer screen -
to observe the brain shifting out of default mode to handle the task.
Both groups performed the task well but when they measured areas of
the brain activated, differences emerged. "Where we were surprised is
the difference in how much brain they used to do the task compared
with the healthy group. It was 50 times larger," Chialvo said. They
said disruptions in this default network could explain why pain
patients have problems with attention, sleep disturbances and even
depression. "These findings suggest that the brain of a chronic pain
patient is not simply a healthy brain processing pain information but
rather it is altered by the persistent pain in a manner reminiscent of
other neurological conditions associated with cognitive impairments,"
they wrote. Source
http://rs6.net/tn.jsp?e=001Bri_ET-l05pNIKhuyKkeM8GbhfEkZBMq_eFuHVuAXDYDlBSBLOBd\



 
 Fibromyalgia News:


*Check out new News on Fibromyalgia,  click here:  http://www.fibromyalgiasupport.com/Fibromyalgia.cfm/id/5153




Latest Research News on CFS 

For more information, go to Prohealth.com




How I Survived Chronic Illness  One Woman's Story of Resilience

by Pat Gurnick, CLC*
Go To:
http://www.ImmuneSupport.com
For more information

12-17-2007

Advertisement
Pat Gurnick is a Psychotherapist and Certified Lifestyle Counselor based in Boulder, Colorado with a specialty in ME/CFS, FM, and MCS patient education. Pati's stronger health status today, after years of debilitation with these illnesses, is built on her relentless pursuit of insights from the countries leading specialists. Her story of survival is studded with links to resources that she hopes may help others to help themselves.

_________________________

I will never forget the month and year I came down with an illness of unknown origin. The month was January, the year was 1990. I lived in Los Angeles, California. My life was never the same after that.

What caused my sickness? Perhaps it was an environmental toxin.

I say this because at the time I was exposed to pesticides. My car had an exhaust problem so I naively drove with the windows open to blow the exhaust back out again. And one night while driving home from my night job, I drove through an aerial pesticide spraying for fruit with my car windows open. This spraying continued for a total of 12 times over the next five months because of a pandemic Mediterranean fruit fly (Medfly) infestation in fruit crops. (See the Time magazine article on the malathion spraying -)

Subsequent to this chemical assault, my immune system became dysregulated. I developed debilitating fatigue, flu-like symptoms, swollen lymph nodes, fever, aches and pains, bladder and stomach problems, difficulty concentrating, and major depression, to name a few.

The Search for Diagnosis & Understanding

This began the revolving door of doctor visits. I was lucky enough to find Dr. Hyla Cass, MD, a specialist in nutritional medicine and now an expert in CFS. She speculated I might have CFS and Fibromyalgia, and consequently referred me to Dr. Murray Susser, MD, who was eventually listed in the Alternative Doctors Hall of Fame and wrote the book, Solving the Puzzle of Chronic Fatigue Syndrome. He concurred I had CFS and Fibromyalgia and confirmed the diagnosis of CFS by a blood test called Chronic Fatigue Syndrome Panel  through Immunosciences Lab.

Dr. Michael Goldberg, MD, FAAP, a member of the Neuro Immune Dysfunction Syndromes (NIDS) Medical Advisory Board, also confirmed my diagnosis through a brain SPECT imaging scan. This is helpful documentation if you are seeking disability benefits.

Two years after I was diagnosed, I moved to a new apartment. I worked as a Drug and Alcohol Counselor for Chronic Mentally Ill Substance Abusers at Brotman Hospital in Culver City, California - my health rapidly deteriorating while I struggled to find a way to remain functional on the job. Six months later, I became bedridden. I continued different medical and holistic protocols to no avail.

I had no idea the inner layer of my apartment ceiling was filled with stachybotrys mold, also known as the black mold- one of the most dangerous indoor toxic molds, as well as other saprophytic fungi (molds) which produced deathly mycotoxins.

According to Dr. Gary Ordog, a neurotoxicologist in Los Angeles, and Dr. Gunnar Heuser, MD, PhD, an Environmental Illness specialist, I subsequently developed Cushings Disease/Pituitary Tumor from the mold injury; which was removed December, 2003. (See my Cushings Disease Story at http://www.cushings-help.com/patg.htm.) Dr. David Bell, MD, author of the new book Cellular Hypoxia and Neuro-Immune Fatigue, states that toxins can initiate CFS.  Yes, mold and environmental toxins can definitely cause or initiate ME/CFS. Somehow toxins affect the cytokines in a way similar to the classic mononucleosis infection to set off the illness," he explained in a recent ImmuneSupport.com Q&A.

As a result of the Chronic Fatigue Syndrome intensified by the mold, I became sicker. I could not read, write, drive, or balance well enough to stand up to even bathe myself or make my food. I was debilitated from neurally-mediated hypotension. My blood pressure was erratic. It dropped when I stood up and I became light-headed and unstable on my feet. I was weak, in continual pain, so much so that I could not even move my arm to brush my hair. For two and a half years I needed outside assistance. I was so disturbed that my body and mind would not work together in harmony, and so miserable that I wanted to end my life.

CFIDS Association Offers Vital Connection

I was just a shell of what I used to be. I struggled to stay alive. I knew I needed to find a reason to live. I needed to connect to other people who understood what I was going through. I also knew 'being of service' to the community, and being productive, would make my life have value. So I contacted the CFIDS Association of America (http://CFIDS.org) and decided to become a hotline contact.

It gave me something to focus on and a reason to believe that life was worth living. Being a hotline contact was not an easy task. For a CFS patient, it was like climbing Mt. Everest. I had to monitor my time and activities. Talking 30 minutes on the phone was exhausting. If I didn't watch my energy expenditure closely enough, I could be bedridden for days on end.

I had to learn to live within 'the energy envelope. I developed ways to settle my neurological system, and give my body an opportunity to heal. That is, ways to make my home environment user friendly, and to decrease my stress levels through self-nurturing behavior: meditating, listening to soothing music, taking a relaxing bath, receiving a massage, watching videos, eating pleasurable food, etc. I needed to be careful that I didn't involve myself in any dramas.

My body was already in a war fighting these illnesses, and I wanted to learn how to turn this off; to give a new message to my body that it was safe. I started monitoring people, places, things in my life so that I was not depleted of energy. At first, it felt selfish, but then this new form of self-love and empowerment helped me feel emotionally stronger. By learning how to be friends with my body, I started transforming into a new person.

I knew I wanted to create a safe environment where other people with Chronic Fatigue Syndrome and Fibromyalgia could feel accepted and share what was on their minds, receive support, resources, and referrals to health care providers. So I started the CEFCA Support Group at a local church. CEFCA stands for "Chronic Fatigue Syndrome, Environmental Illness, Fibromyalgia, Candida, and Allergies." At first, because of my condition, I was not able to sit in a chair, so I laid on the floor to facilitate the group. (For information about Environmental Illness/Multiple Chemical Sensitivities, see the Rocky Mountain Environmental Health Association website.)

St. Amand Protocol a Turning Point for the Fibromyalgia

At that time, I couldn't even walk one block, I was so weak and in such pain that every day my body felt like it had just been in a car accident. Nine months after I began the group, September of 1993, I saw Dr. R. Paul St. Amand, MD, Director of the Fibromyalgia Treatment Center in Marina Del Rey, CA, for help. He confirmed my diagnosis of Fibromyalgia and prescribed a substance called guaifenesin (helps CFS in some patients). Within six months, my level of health shifted for the better. After two years, I became pain free and I could jog again.

During that time, out of necessity, I moved my support group to Kaiser Permanente's hospital conference room. Due to the tremendous need for support among CFS patients, more than 100 members were coming to each meeting to hear top specialists in the field lecture, including renowned doctors such as Dr. Jay Goldstein, MD, now retired, Dr. Jacob Teitlebaum, author of From Fatigued to Fantastic, and others I have mentioned above.

I ran this group from 1993 to 2003. My commitment to serve the community gained me 'Honorary Recognition Award' from the CFIDS Association.

Controlling the Remission-to-Relapse Seesaw

To this day, I remain in remission from Fibromyalgia. I have had a slow, gradual increase in vitality. I learned how to live within the energy envelope [using a simple energy level rating scale of 1 to 10], and how to pace myself [using tools such as an envelope log - attaining remission from Chronic Fatigue Syndrome.

Initially, I went back and forth from remission to relapse, until I changed my lifestyle. There is no cure, and the cause is still uncertain, but I have found that once you take care of yourself by adapting your lifestyle, you can achieve greater health.

Today, I have my life back. As a Psychotherapist, and 'survivor' of Chronic Fatigue Syndrome and Fibromyalgia, I help others to develop and adopt strategies to function better on a daily basis, with a focus on energy level management and self pacing for health maintenance.


____
* Reproduced with permission of the author, Pat Gurnick, CLC. Pat is a Psychotherapist and Certified Lifestyle Counselor specializing in FM, ME/CFS, and Environmental Illness patient education. She practices in Boulder, Colorado, and can be reached at http://www.caringcounselor.com

Note: This information has not been evaluated by the FDA. It is generic and is not intended to prevent, diagnose, ameliorate, treat, or cure any condition, illness, or disease. It is very important that you make no change in your personal healthcare plan or health support regiment without researching and discussing it with your professional healthcare team.







More Fibro News
(99m)Tc-ECD brain perfusion SPEcT in hyperalgesic Fibromyalgia.
by K Wingenfeld, et al
 ImmuneSupport.com



Chronic Fatigue Syndrome: How to Help Yourself

What causes chronic fatigue syndrome?

 No one is sure what causes chronic fatigue syndrome (CFS). The  symptoms may be caused by an immune system that isn't working well. They may be  caused by a kind of virus. Researchers are looking for a cause of CFS.

How can I help myself?

 The best chance for you to feel better is to be as physically active  as possible. Below are some ideas to get you started.

Exercise

 Modest exercise reduces fatigue and improves functioning and fitness  in up to 75 percent of people with CFS. It's important to exercise within your  limits. Begin with as little as 5 minutes of light to moderate exercise a day.  Then slowly increase how long and how hard you exercise. Always stop exercising  before you feel overly tired.

 Try different forms of physical activity, such as walking, swimming,  pool exercises, stationary exercise machines, stretching, T'ai chi, and yoga.

Diet

 Eat a well-balanced diet that's low in fat but high in fiber and  complex carbohydrates. Avoid eating too many simple sugars such as candy and  sweets. Eat more fruits and vegetables. They're good sources of energy and  vitamins and minerals.

Sleep habits

 If possible, go to bed and get up at the same time every day. Do not  watch TV in bed; it will make it harder for you to fall asleep. Avoid daytime  napping.

Reduce stress

 Set reasonable limits for yourself. Trying to do too much will only  make things worse. Share responsibilities and plan your day's activities for  times when you usually feel better. There are many relaxation techniques that  can help you manage stress and chronic pain, such as deep breathing,  meditation, and massage therapy.

Get informed

 There are many resources available with information about CFS. The  following are good Internet sources for information and various types of  support:

 Chronic Fatigue and Immune Dysfunction Syndrome  Association of America
http://www.cfids.org

 Centers for Disease Control and Prevention
 CFS  Information Page
http://www.cdc.gov/ncidod/diseases/cfs/info.htm





Four Stages of RSDS

Doctors classify RSDS into different stages.

It helps to understand the complexity of the disease. Some patients may never advance to Stage 3 and only a very few patients will advance to Stage 4.

It may be difficult to determine your stage due to the combination and/or lack of symptoms. The length of time given for each stage is just a benchmark as each individual can have different symptoms from different stages last for different lengths of time.

This is part of what makes RSDS difficult to diagnose.

Not all Doctors agree on a Fourth Stage but the evidence bears out its existence.

The Stages

STAGE ONE

Stage one is called the acute stage and can last one to three months.

Some characteristics are warmth, coolness, burning pain, edema, increased sensitivity to touch, increased pain, accelerated hair/nail growth, tenderness or stiffness in the joint, spasms, limited mobility, some bony changes may be visible on X-Ray, abnormal amount of pain for the injury. In this stage there is decreased sympathetic activity.

STAGE TWO

Stage two is called the Dystrophic Stage and can last three to six months.

Pain is constant, as in stage one, and throbbing, burning, aching, crushing in nature and is exacerbated by any stimuli. The affected limb may still be edematous, cool, cyanotic (discolored), or mottled (different shades). Nails are brittle and ridged. Pain and stiffness persists. Muscle wasting may begin.

Patient usually starts experiencing short-term memory problems , as well as increased pain from noises and/or vibrations. X-Rays may reveal signs of osteoporosis. Patients may start to repeat themselves. Also, Patients may start to repeat themselves , (sorry, couldn�t help that .. hee hee ...) In this stage there is increased sympathetic activity.

Some Doctors will try and use tools such as x-rays, Bone Scans, thermograms, and others during Stage 2 and Stage 3 to confirm a diagnosis of RSDS. Understand that while these tests MAY show the presence of RSD, they are NOT conclusive. The only positve way of diagnosing RSD/CRPS is a physical exam by a Doctor knowlegeable in RSDS. These other tests should only be used as one of many tools to aid in that diagnosis. They are also useful in tracking the progress of the disease.

STAGE THREE

Stage three is called the atrophic stage and can last an unlimited amount of time. Pain can increase or decrease, depending on the person, and the RSDS may spread to other parts of the body. At this stage irreversible tissue damage may occur. Skin becomes cool, thin, and shiny.

Contraction of the extremity may occur as well as atrophy of the limb (decreased joint movement). Skin atrophies (wasting away) and loss of movement or mobility may also occur. X-Rays may show marked demineralization and increased osteoporosis.

At this stage many RSD patients are not likely to be effectively treated with blocks as the percentage of SIP (Sympahetically Independent Pain) is now much greater than the percentage of SMP (Sympathetically Mediated Pain), meaning the majority of the pain signals are now originating in the brain and not at the original RSD site where a local block would help.

Pumps are usually discussed at this stage but there are other treatments available and more are coming all the time.

STAGE FOUR

Most patients will never advance to Stage 4.

In this Fourth Stage, RSD is resistant to many forms of treatment and many Physicians would now recommend a Pump or a DCS/SCS. However, there are a great many problems associated with the use of SCS units for RSD patients, even though they work well for other pain problems. (see medical articles section and the Treatments section for more information)

Also in this stage there is an involvement of the inner organs.

Please do not allow any Doctor to amputate the affected limb unless it is a medical necessity due to gangrene or the like. While it is infrequent, there are some uneducated Drs out there who are performing amputations in an effort to eliminate the RSD pain. This is not only barbaric it is ineffective. It not only does not work but it also in most cases will exacerbate the RSD and increase the spread rate.

Always ask to speak to a Doctors other patients before undergoing any type of implant or surgical procedure. Educate yourself on the internet. Talk to other patients. In the end, YOU are most responsible for what happens to your body. It is the only one you get so treat it with the utmost care. You deserve first class care always!
       
       
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