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You know I've been a terrible owner of this website these following months.  I've been going through a divorce so I've locked myself in my room and put myself from everybody which is totally the opposite from what I've told you guys to do.  Remember guys you can live w/ RSD or you can Die w/ RSD it is totally your choice.  I have gone back to school and I have 4.0 except my english class which kicking my butt. 
We'll be gone soon so have a wonderful life and I love each and every one of you.

Take care and if you need me my email is blueberry1999@hotmail.com


 

Thank you all for being so very loyal!!!

Sincerely,

Patches

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Author Topic: For Family Understanding of CRPS/RSD (Different handouts)  (Read 59568 times)

Rainbow

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Taken from link of an RSD Patient

http://hometown.aol.com/__121b_umrPzIubRFkRLg+Nm+Dl8wypNM9V2mPmQtoTMe4kwfQI+tjrGimv5w==

How to help someone with RSD/CRPS
There is no easy way to help your loved one. Most likely, they are very irritable, crabby, and maybe even isolated. The important thing to remember is that they are in severe pain. It is very difficult to be supportive of a person that is ill. You don't want to do too much, but you feel that you need to do something. Also remember that they need to use the affected limb. So, for example, if the affected limb is a hand, you would not want to always be doing something for them that would require using that hand. However, this does not mean that when they are having a bad day, that you should make them do everything on their own, as then it probably would not get done. Better, offer them assistance, but do not do it ALL for them. The best way to help them is to follow the "LESLIE" method.

LOVE: An RSD/CRPS patient needs to know that regardless of what they are going through, how much they are able to do, or the pain they are feeling they are still loved. They need to hear this from you, don't just assume they know. Someone with a chronic illness like RSD/CRPS will feel as if they are not adequate due to their inability to do things like they use to, so it is very important they they feel loved.

ENCOURAGEMENT: An RSD/CRPS patient needs a lot of encouragement. It takes everything they have just to get out of bed in the morning. They are in pain, they probably are not getting much sleep, and they feel just awful over-all. Encourage them to go places, encourage them to talk to others, and most importantly, to express their feelings. You can help with this by asking them if they want to go somewhere with you. Out for lunch, to a movie, shopping, etc.. Remember, it is not good for them to sit at home and think about their pain, so help them out. Keep in mind, it probably takes a lot of energy for them to go out, so be patient with them.

SUPPORT: Support is a very important part of their treatment. By support, I do not mean that you should do everything for them, but mearly, talk to them about their diagnosis. Ask them if there is anything you can do to help them. Offer suggestions on making it easier for them. DO NOT be judgemental of them. ALWAYS keeping in mind that these patients tend to feel depressed, overwelmed, and sometimes even worthless. You may not understand what they are going through, which it would be impossible to understand if you have never been diagnosed with something as serious as RSD/CRPS, but if you want them to get better, and remain an important part of your life, you MUST offer support, without being judgement.

LISTEN: It is also very important that you take the time to listen to them. It may seem like "they are always complaining" or "they never feel good", but this is not unusual for someone with RSD/CRPS. They need to know that they have people to talk to. They need to know that someone cares and will take the time out to be there for them. Please, please keep in mind that if they lose track of their family and friends, and feel that they have noone to turn to, this will raise their anxiety and stress, therefor, rasing their pain level, and higher their chances of depression. After you have listened to them, you might want to follow the support or encouragemnt models, and ask them if there is something you can do to help, or ask them if they would like to get together to do something. This will allow them to feel like they can talk to you, and therefor, let them feel like they have someone to "lean on".

INCLUDE: Incuding them in gatherings, family functions, parties, and get togethers is imperative. As stated before, if they feel "left out", we are back to square one. RSD/CRPS patient's are more sensitive then others, as RSD/CRPS greatly affects the nerves. Think of the most sensitive person you know, and then consider an RSD/CRPS patient to be 100% more sensitive than that. Be patient with them, but try to include them in as much as you can!

ENABLE: Allow them to have the "power". Allow them to express themselves. The truth is, the patient is the only one that can truly make the difference, however, they need the support to do that. If you allow them to feel, to acknowledge, to express what they are going through, it makes it possible for them to deal with the pain and frustration they are experiencing. Enable them- give them the power!

There is no cure for RSD/CRPS, but it can be managed. It is not going to go away, but it can be controlled. You can help them to accomplish these goals, if you choose too!

« Last Edit: April 30, 2010, 23:49:56 by Rainbow »
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Rainbow

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Re: For Family Understanding of CRPS/RSD (Different handouts)
« Reply #1 on: July 03, 2009, 00:57:52 »

   I hope that everyone had a bountiful Thanksgiving.  It took me 2 days to cook everything up, and it was a little more challenging than I thought it would be since my disease has progressed to my arms also.  But In between the frequent breaks, help of my husband whipping gravy and secret mixes, "momma's special stool" when my legs were rebelling (my primary source of RSD) doing their "kickin  chicken dance" ha ha..... we had a wonderful time together and allot to be thankful for this year.
    NCtunes list of thankfulness:
    First and foremost a roof over our heads, food on the table to eat, love and support of each other in my home and here in our online family, and (my own personal belief) the love, guidance, and help of a supreme being who keeps a close vigilance over me and my loved ones from a not so far distance  ;)

  Explaining what it's like to live with RSD/CRPS, day after day

   When we try and explain to others who don't live with us, and even sometimes those who do live with us- and  often take for granted how exhausting even little things are with this disease, we are often met with disbelief.  When you fight this high level of pain on a daily basis it is exhausting, not just physically, but mentally. We all know when I say "fight" the pain I am referring to "mentally blocking" the pain all the time in addition to all of the other things we are doing medically to help lower our pain levels.
    Our brain is always on.  Always aware, always blocking the pain, even when we are trying to sleep, which is another reason other than the physical effects of RSD on the limbic system of the brain we do not sleep. RSD effects short term memory, Focus, Concentration. Lack of sleep, high levels of pain add and enhance this problem.
     If you are trying to explain to a loved one why you don't sleep, break it down to them in small bites, anatomically-
We do not usually get to enter the restorative REM sleep. To enter that portion of sleep, we have to allow our mental block our self defenses, our self preservation or survival skills against the RSD pain to drop. When we do this, the pain rush overloads our body and it is excruciating and any thought of sleepiness goes right out the door, It may be hours before we can get some semblance of control over the pain again.  Usually we sleep because our body passes out from exhaustion.  Yes, shuts down. I think that may be an accurate way to explain us RSD'ers and sleep. This why sleeping pills and us usually don't have a high success rate, we only dose or nod off for minutes at a time at best on them.  Again this is largely because of the effects of RSD on the limbic system of the brain combined with the constant high pain level. I hope the Spoon theory will be helpful in explaining the rest about life with RSD.
   
     Because of copyright laws I can not post it here, I can only post the link to the spoon theory and you have permission to save it or print it from their web site.
   The website is called but you don't look sick.com    It is a very motivational website that started out as a Lupus support site, that now include all diseases like ours.

 The Spoon Theory written by Christine Miserandino

Click HERE to read "The Spoon Theory":http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Have a blessed, low pain week everyone!
Talk to you soon!

(((Group Hug)))  Dee

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Rainbow

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Re: For Family Understanding of CRPS/RSD (Different handouts)
« Reply #2 on: July 07, 2009, 19:27:26 »

http://www.overcomingpain.com/10tips.html

    Ten Tips For Communicating With A Person Suffering From Chronic Pain

     by Mark Grant MA

    People with chronic pain communicate differently to well people. Tired, irritable and withdrawn, they are often reluctant or unable to talk about their feelings. Or they may talk in a kind of 'code' and tell you they feel fine when they are really hurting. Sometimes they just don't have the words to describe how they feel.

    These factors can create frustration and often lead to a breakdown in communication between the pain sufferer those whose mission it is to try and understand them.. The following 'communication tips' are designed to help you recognise and overcome the special obstacles that may occur when communicating with persons suffering from chronic pain or illness.

    1. Listen!

    To really listen is one of the most helpful things you can do for a person in pain. Listening also involves more than just hearing what is being said.

    A good listener listens with their heart as well as their ears. They are able to read between the lines and interpret unspoken non-verbal pain communications. To be a good listener you must focus your attention completely on the person you are communicating with, and listen to how they are saying it as well as what they are saying.

    Good listeners are also able to drop their own preconceptions and assumptions and adopt an attitude of genuine and profound curiosity. Repeating and summarizing what is said is also a skill associated with good listening.

    As Bernard Lown, MD and Nobel prize-winner, notes, 'the majority of people's complaints are relatively straightforward, detectable to the ear cultivated to listen for the inaudible sigh, visible to the eye sensitive to the unshed tear.'

    2. Don't Fake It.

    It can be unpleasant to listen to someone talk about their pain (imagine how it is for them!). Don't ask someone how they're feeling unless you're really prepared to listen. However, it's better to really listen for just five minutes than to pretend - you don't have to have all the answers. People can tell if you're not really interested and it makes them feel like they are a burden.

    3. Understand that pain sufferers may be afraid to say how they are feeling.

    Many chronic pain sufferers are silent about their pain because of fear of ridicule or a feeling of 'what's the point?' or just thinking that if they don't talk about it, maybe it will go away. Others understate their pain for similar reasons.

    Not expressing or underreporting pain are coping mechanisms which can be misleading to the unsuspecting. So when someone you suspect of being in pain says they feel fine, you can let them know that you're really interested, but you understand if they don't want to talk about it.

    4. Look for non-verbal cues.

    As indicated, chronic pain sufferers often underreport their pain, so look for a 'mismatch' between what is said and how they appear. Some tell-tale symptoms that usually indicate severe and inadequately controlled pain include sweating, irritability, sleep disturbance, restlessness, difficulty concentrating, decreased activity and suicidal thoughts.

    Many chronic pain sufferers are so accustomed to these negative feelings they do not recognise their significance and so don't volunteer this information unless specifically asked.

    5. Believe people when they say they are in pain.

    When pain sufferers complain about their pain, they are often not believed. There are many reasons for this including a myth that chronic pain sufferers exaggerate their pain in order to gain sympathy or avoid responsibilities.

    In general, people do not go around pretending they are in pain to get sympathy - research has shown that exaggerating or malingering are actually rare. Remember, "pain is whatever the experiencing person says it is, whenever the experiencing person says it does."

    6. Asking 'helpful' questions can stimulate hope.

    Helpful questions are specific or open-ended questions that convey you understand and are interested in what the pain sufferer is experiencing. For example, you can obtain a rough idea of how much pain they have by asking them to rate their pain on a scale of 0 to 10 where 0 = no pain and 10 = the worst possible pain. Other important areas to ask about include sleep, concentration, sweats, and mood (look for depression, irritability).

    It's also amazing how rarely chronic pain sufferers are ever asked directly how satisfied they are with their treatment, and whether or not they think their pain is bearable. Being asked the right questions also gives the pain sufferer permission to talk about their pain.

    7. Avoid "words that maim".

    Words are a powerful "two-edged sword" - they can maim or heal. Thoughtless throwaway lines such as "you'll just have to learn to live with it" or "you don't look sick" do nothing to help and make the sufferer feel worse.

    Elementary psychology teaches that fear is an improper way to motivate constructive behavior. Instead of mobilizing the sufferer's inner resources, such talk dissipates hope. Constructive, carefully chosen words, in the context of a caring relationship, can be a powerful activator of healing resources.

    Just asking someone who is feeling at the end of their tether "so how have you survived?" can evoke awareness of strengths and determination to survive.

    8. Have compassion.

    Try and put aside your cares and preoccupations even for just a few minutes and listen with an open heart. Compassion is known to be one of the most healing human emotions.

    As the essayist Anatole Broyard wrote "I wouldn't demand a lot of my doctor's time. I just wish he would brood on my situation for perhaps five minutes, that he would give me his whole mind just once, be bonded with me for a brief space, survey my soul as well as my flesh to get at my illness, for each man is ill in his own way. Without such recognition I am nothing but my illness."

    9. Be honest about the limitations of your own knowledge.

    IIt is difficult to see a person in pain and not know how to help them. Nobody likes to see someone suffer. It can be tempting to offer well-meaning advice such as "you'll just have to learn to live with it", which, however well-intended, is not actually very helpful.

    It is better to admit you don't know the answer rather than to say something which may unintentionally destroy hope.

    10. Remember, pain is not what you think it is.

    As you're probably aware, the concept of pain has undergone considerable revision in recent decades. Pain has gone from being thought of in purely physical terms to the realization that it is made up of physical, psychological and neurological factors. However, although it is over 30 years since the International Association for the Study of Pain officially declared that pain is both a mental and an emotional problem, many people still act as though pain can be understood simply as a sign of physical injury.

    For example, pain sufferers are often met with disbelief (even by trained medical professionals) because they do not have any visible injury. But as pain specialists now realize, the involvement of neurological factors explains why pain can occur in the absence of external causes. It also means that pain in the absence of external causes should not be considered abnormal.

    Pain is in part a psychological problem involving a range of emotions. The initial response to pain is fear, which is appropriate since pain represents a threat to identity and the ability to work, love and play. However, when pain persists, fear turns into anxiety and depression.

    The effect of depression is for people in pain to show less emotion, and thus to not appear as though they are in pain. Pain is also very difficult to convey in language, making it even harder to understand what the pain sufferer is experiencing. So to understand a person in pain you have to remember that pain is a highly complex and individual thing.

    The other thing to remember is that pain is different for everybody, depending on the personality and life history of the person experiencing it. Thus, you cannot know another person's pain.

    Mark Grant is a psychologist, specializing in the management of chronic pain and trauma. His advice is based on many years of clinical experience working with persons affected by chronic pain and trauma.

    Mark has also conducted research regarding a multi-modal approach to pain management. He is the author of two self-help tapes which use ac

    celerated learning principles for sufferers of chronic pain and stress: Calm and Confident based on EMDR and Pain Control, based on EMDR. He has also spoken at numerous international conferences and workshops about pain management.
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Rainbow

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Re: For Family Understanding of CRPS/RSD (Different handouts)
« Reply #3 on: May 05, 2010, 01:03:06 »

http://www.nytimes.com/2007/11/13/health/13brod.html?_r=1&fta=y&pagewanted=print

November 13, 2007
Personal Health
Chronic Pain: A Burden Often Shared
By JANE E. BRODY

Chronic pain is a family problem. When people experience unrelenting pain, everyone they live with and love is likely to suffer. The frustration, anxiety, stress and depression that often go with chronic pain can also afflict family members and friends who feel helpless to provide relief.

Healthy family members are often overworked from assuming the duties of the person in pain. They have little time and energy for friends and other diversions, and they may fret over how to make ends meet when expenses rise and family incomes shrink.

It is easy to see how tempers can flare at the slightest provocation. The combination of unrelieved suffering on the one hand and constant stress and fatigue on the other can be highly volatile, even among the most loving couples — whose burdens are often worsened by a decline of intimacy.

“Family members are rarely considered by doctors who treat pain,” said Dennis C. Turk, a pain management researcher at the University of Washington in Seattle. “Yet a study we did found that family members were up to four times more depressed than the patients.”

But pain experts say there is much that family members and friends can do to improve the situation.

Step one is to recognize that chronic pain is not an individual problem. Let the patient know that you are in this together and will fight it together. When the patient is moody and irritable, try not to take it personally.

Step two involves learning as much as you can about the condition and how to treat it. Eliminating the pain may not be possible, but there often ways to reduce it. (See next week’s column on treating chronic pain.)

Some of the ideas below were adapted from the American Chronic Pain Association’s Family Manual, written by Penney Cowan, the association’s founder and executive director.

“Twenty-five percent of the calls we get are from family members looking for help,” Ms. Cowan said in an interview last week. “Family members are just as isolated, controlled, frustrated, guilt-ridden and confused by chronic pain as is the person in pain.”

Acknowledge your feelings. You may feel guilty about not being able to relieve the distress of someone you love. You may be anxious about financial problems.

You may be distressed by the reactions of other people, who might lack an understanding of chronic pain and suggest that the patient is malingering — faking the pain to avoid work or family responsibilities. At a time when you most need the understanding and support of others, they may seem unsympathetic, even hostile.

But the most common reaction is resentment, over a withdrawal of the patient’s affection and sexual intimacy, the unending care required by the patient, the need to add the patient’s responsibilities to your own, the decline or loss of a social life and time spent with friends. You may resent having to abandon an enjoyable lifestyle or plans for the future.

If the patient was the family breadwinner and is now unable to work, you may have to find a job and, at the same time, do most or all of the chores at home and care for the patient. Chronic exhaustion can erode your temper as well as your own health.

It is all too easy to react to such feelings in emotionally destructive ways. Owning up to them can help you cope more successfully.

Help the patient stay involved. Chronic pain can rob people of their abilities and force them to be cared for by others, leaving them to feel worthless and guilty over not contributing to the family’s welfare. Whether you are the patient’s primary or intermittent caregiver, it is important not to contribute to feelings of helplessness.

Encourage patients to participate as fully as possible in family plans and activities, household chores, discussions and decisions. Perhaps they can no longer do yardwork, but they may still be able to help with cooking, setting the table, washing the dishes, caring for children, handling family finances, making phone calls or shopping by phone. Feeling useful can bolster a patient’s self-esteem and mood.

“For each action the pain person says he or she can no longer do, point out something he or she can do,” the pain association’s manual suggests.

Don’t become a go-for. Chronic pain patients should be encouraged to do whatever they can do for themselves. It is important for you to know when to step in and when to step back. Recognize the patient’s abilities and limitations — consider having an evaluation made by an occupational therapist — and let the patient participate as much as possible in daily activities and self-care.

Communicate. “Open, two-way communication is crucial to dealing effectively with chronic pain,” said Dr. Turk, of the University of Washington. “Family members need to know how they can be helpful and what might be hurtful.”

Failure to communicate honestly and openly can become a cancer on a relationship, be it with a spouse, parent or child. If chronic pain has disrupted family plans, discuss a reordering of priorities. It may be possible to do more than you think.

You have a right to say that you are tired and need to rest, that you need a break from the routine lest you burn out, and that you need to maintain friendships and pursue enjoyable activities outside the home from time to time.

Likewise, the patient has a right and responsibility to express fear, disappointment, guilt and bad feelings about the behavior of some people, as well as gratitude for the help you and others provide.

Ask periodically what the patient might like to discuss with you or do with you. And try not to rise to the bait when the patient is critical or lashes out at you despite all you do. Most often, you are not really the target. But there may be no one else with whom the patient feels safe to express distress.

Take care of yourself. Enlist all the help you can get from family members and friends. Older children can clean the house and prepare meals. Friends and relatives who offer to help can be given tasks that fit their abilities, even if it is just accompanying the patient to a medical appointment. If they haven’t offered, ask.

When necessary, hire others, including neighborhood teenagers, to help out. If you are reluctant to leave the patient home alone, ask a friend or neighbor to stay for a few hours or to look in on the patient every so often so that you can get out for a while.

Don’t neglect your own physical well-being. Eat regular meals, get enough sleep and get regular physical exercise. And be sure to keep up with medical checkups and screening exams. If you get sick, you won’t be much use to the patient in pain.

This is the second of three columns. Last week’s column was an overview of the causes and consequences of chronic pain. Next week: Treatments.

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Rainbow

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Re: For Family Understanding of CRPS/RSD (Different handouts)
« Reply #4 on: May 05, 2010, 01:06:12 »

http://artzoo.com/health/print.htm

Reflex Sympathetic Dystrophy
Complex Regional Pain Syndrome
by C. Moran from yourhealthcare.net
 
Reflex Sympathetic Dystrophy (RSD) also called Complex Regional Pain Syndrome (CRPS), is a painful disorder affecting the nerves, blood vessels, muscles, tendons and bones, and in later stages can effect the immune system, and other organs.

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.

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)

Blümberg, Jänig 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 mourn 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. The nerves will eventually calm down. The more you move or use your body as normally as you can, the faster your recovery will be and the faster you can regain a more normal life.

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)    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.

Diagram of pain response in nerves (MUST GO TO ARTICLE LINK TO VIEW)

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 $75 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.

Try alternative medicine such as Reiki and Chakra meditaion. Healing Stones and crystals have helped me, a 10 year RSD sufferer. Here is my other site: http://mountaingems.net that I started to help those with chronic pain and illness, if you e-mail colleen@mountaingems.net
or call me Toll Free: 877-785-5372 for free advice to which stones would help the most.

RSD/CRPS/Fibromyalgia and Arthritis diet and life style changes that really work: The reward of the following diet and life style changes can really help you take control of your life again, ease symptoms and free you from the chronic pain, depression and helplessness often associated with chronic pain conditions.

Once you start to feel better the easier it is to follow this guide.

Give your body time to adjust and detox from your usual diet. Always try to use organic vegetables and foods as much as you can. Eat raw, whole foods daily.

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 alcohol can increase CNS pain, and worsen muscle spasms.
Stop Smoking nicotine is a nerve stimulant, tobacco contains 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.
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 inflammatory symptoms. (Red skinned potatoes are recommended) (3)
Sugar substitutes: aspartame, saccharine
Avoid food preservatives and additives as much as possible.
Animal protein: avoid red meat, red meat causes an increase in adrenaline, avoid antibiotics in poultry & eggs if possible in your area. One of the side effects of cutting gluten out of the diet is weight loss.

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, Almond, or Soy milk to substitute.
( white non-aged cheese is OK to eat occasionally, if you do not bloat, or have bowel problems later )
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
Fruits: fruit juices, start back slowly to fruits in the first week by eating apples, strawberries, and melons.
Keep track of symptoms: if you suspect that a food caused a worsening of symptoms, eliminate it again then reintroduce it back into your diet after a week. It takes time to illuminate foods that make you feel worse, but the effort is well worth it.
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.
Vitamin 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)
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)

If cold aggravates symptoms keep extremities warm with gloves, warm socks or fleeced lined shoes.
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 RSD/CRPS 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 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.

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

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 Supplements
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:

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


REFERENCES:
(1) Dr. Hooshangs statement from Blümberg, Jänig and Koltzenburg
(2) Info provided by The National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda, MD 20892
(3) Dr. Norman F. Childers, Ph.D. Arthritis Nightshades Research Foundation http://www.noarthritis.com/Bt-symptoms.htm
(4) Don R Revis, Jr, MD, Consulting Staff, Department of Surgery, Division of Plastic and Reconstructive Surgery, University of Florida College of Medicine Coauthored by Elliot Goldberg, MD, Dean of the Western Pennsylvania Clinical Campus, Professor, Department of Medicine, Temple University School of Medicine; Arthur Weinstein, MD, Director, Division of Rheumatology, Research Professor, Department of Medicine, Washington Hospital Center
(5)Cathy Wilson RN; "Founder, intractable pain.com"
(6) Dr. Leaman, author of "Healing the anxiety diseases".
(7) Pat O Reilly - Chronic Pain Clearinghouse 14776 Canyon Rd. Rio Nido, CA 95471 707-869-5971 Email Pat95471@yahoo.com
(8) Dr. Donald Rhodes, D.P.M., F.A.C.F.A.S., Corpus Christi, TX 512-992-9432
(9) The Power of the Mind in Getting Well- Rossi, 1986, 54-55
(10) Jan Sadler, the author of "Natural Pain Relief" published by CW Daniel Books
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