Genetic Research Sheds Light on Chronic Pain

THURSDAY, May 6 -- Chronic pain, which often occurs without an apparent cause, may be the result of accidental reprogramming of more than 2,000 genes in the peripheral nervous system, new research suggests.

The finding may someday lead to new drugs that treat pain by correcting the activity of specific genes, a method called transcription therapy, the researchers said.

In the study, published online in the

How I Differ From You - Awareness

How I Differ From You - Awareness

For anyone who suffers, or know someone who suffers, from Fibromyalgia:

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain , possibly due to sleep disorders. It is not well understood , but it is real.

2. My fatigue - I am not merely tired . I am often in a severe state of exhaustion . I may want to participate in physical activities , but I can' t. Please do not take this personally . If you saw me shopping in the mall yesterday, but I can' t help you with yard work today , it isn' t because I don' t want to. I am, most likely, paying the price for stressing my muscles beyond their capability .

3. My forgetfulness - Those of us who suffer from it call it fibro fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don' t have any short - term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd , I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stair wells one step at a time.

5. My sensitivities - I just can' t stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors . FMS has been called the "aggravating everything disorder."  So don' t make me open the drapes or listen to your child scream. I really can' t stand it.

6. My intolerance - I can' t stand heat, either. Or humidity. If I am a man, I sweat . . . profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don' t feel compelled to point this short coming out to me. I know. And don' t be surprised if I shake uncontrollably when it's cold. I don' t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian' s patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression . Your sincere concern and understanding can pull me back from the brink . Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Every day stresses make my symptoms worse and can incapacitate me completely .

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appetite is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don' t envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don' t assume I am well or that I have been cured . I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going .

12. My uniqueness - Even those who suffer from FMS are not alike . That means I may not have all of the problems mentioned above . I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.


I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.


Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10, 000, 000 people with FMS, but it can help the healthy person understand how devastating this illness can be. 

Please do not take these people and their pain lightly.  

You wouldn't want to spend even a day in their shoes . ..or their bodies!

 Do You??

~Author unknown

God Has A Purpose!

Do you ever wonder why you are facing all the heart aches, challenges and difficulties in your life? 

Watch this Butterfly movie! It has a SIGNIFICANT message for you. 

Nothing in life is a coincidence. God has a purpose.

Abused Kids More Prone to Migraines in Adulthood

HealthDay News

Updated: 7:51 p.m. Wednesday, Jan. 6, 2010

Posted: 4:07 p.m. Wednesday, Jan. 6, 2010

 

Children who were physically or emotionally abused or neglected are more likely to develop migraines and other chronic pain conditions as adults, a new study finds.

According to the researchers, their study and others have found stress caused by abuse can alter children's brains, making them more likely to develop chronic pain from such conditions as irritable bowel syndrome, chronic fatigue syndrome, fibromyalgia, interstitial cystitis and arthritis. 

"Stressful events in childhood, such as abuse, can alter the body's stress response permanently and predispose to a wide variety of medical and psychiatric conditions in adulthood," said the study's lead researcher, Dr. Gretchen E. Tietjen, professor and chairwoman of neurology and director of the Headache Treatment and Research Program at the University of Toledo Medical Center in Ohio.

It is not uncommon, she said, for people who've been abused to have a variety of debilitating conditions, including migraine. 

"The linking of these comorbidities may be through abuse-mediated brain changes occurring early in life," Tietjen said. "Understanding the physiology of abuse's effects on the brain over the life span may lead to prevention or more effective treatment of migraine and associated conditions."

She was quick to note, however, that not all abused children develop migraines and not everyone who suffers from migraines or any other chronic painful condition was abused.

But those with a history of abuse "are more likely to have the worst cases of migraine," she said. "They are the ones most likely to have a lot of the other pain conditions."

The findings are reported in the January issue of Headache: The Journal of Head and Face Pain.

For the study, Tietjen's group collected data on 1,348 people with migraines who were seen at 11 outpatient headache centers. About 58 percent reported being physically, sexually or emotionally abused or physically or emotionally neglected during childhood. Also, 61 percent reported having at least one painful condition other than migraine.

Those who had been abused or neglected as children were significantly more likely to suffer from other chronic pain conditions than were people who had not been abused as children, the researchers found.

"Childhood abuse, especially emotional abuse and neglect, is very common in the population of persons seeking help for headache," Tietjen said. "Childhood abuse is linked to high frequency of headache in adults, and to headache-related disability. Persons with migraine who have been abused are more likely to suffer from depression, anxiety and from chronic stress-related pain conditions."

The researchers noted that different types of abuse appeared to result in different conditions. For example, physical abuse was linked with arthritis, whereas emotional abuse was associated with irritable bowel syndrome, chronic fatigue syndrome, fibromyalgia and arthritis, Tietjen said. 

Physical neglect was linked to an increased likelihood of irritable bowel syndrome, chronic fatigue syndrome, interstitial cystitis and arthritis.

Women who suffered physical abuse or neglect as children were also more likely to have endometriosis and uterine fibroids. Emotional abuse was linked to both conditions as well, but emotional neglect was associated with uterine fibroids alone, the study found.

Dr. Walter Lambert, an associate professor and medical director of the child protection team at the University of Miami Miller School of Medicine, said that "adverse childhood events have significant long-term health risks in adulthood."

"It does not surprise me that people who reported emotional abuses would have more chronic headaches and migraines," he added.

Lambert also agreed that stress in childhood can change pathways in the brain, with neglect being the worst. Children can take only so much stress before it begins to affect their growing brain, he explained.

"As human beings," Lambert said, "we need nurturing -- both physical nurturing and emotional nurturing -- to flourish." Society needs to find ways to promote nurturing and stable environments for children to prevent maltreatment, he added.

Childhood abuse is a common problem, according to the U.S. Department of Health and Human Services. In the United States, more than 3 million reports of abuse or neglect are investigated each year. Of these, more than 700,000 children are classified as victims of neglect or abuse. 

Source 

Raided doctor's patients complain they're 'left out in the cold'

By Brian Fraga

bfraga@s-t.com

December 19, 2009 12:00 AM

NEW BEDFORD — "Taylor's orphans" is how they are referred to by some in the local medical community.

When federal and state law enforcement authorities raided the Acushnet Avenue offices of Dr. Michael A. Taylor earlier this month in a drug investigation, hundreds of his patients found themselves without a primary care physician and with no way to get ahold of their medical records or to refill their prescriptions.

The patients say they have called other doctors but are either told the physicians are not accepting new patients or the earliest appointment cannot be made for two to three months. They are referred to emergency rooms or pain clinics to inquire about refilling prescriptions and are then told they will not receive any strong painkillers like OxyContin.

Some patients say they are being blackballed.

 

"I can't find a doctor. No one will take me, even for primary care," said Carolyn Lavoie, 68, of Fairhaven, who said she is diagnosed with reflex sympathetic dystrophy, a chronic neurological condition that causes severe burning pain over her body. Taylor prescribed her daily dosages of 50 milligrams of oxycodone and 15 10-milligram doses of methadone.

"It seems people consider most of (Taylor's) patients to be drug addicts, and that's just not fair," said Mike Miller, 44, of New Bedford, who has a diabetic ulcer on his foot and peripheral neuropathy in his legs. Miller said Taylor prescribed him a 30-day supply of 150 milligrams a day of oxycodone and 200 milligrams of morphine. Those prescriptions have run out.

"There are some of us who are legitimately sick," said Darlene Almeida, 44, of Acushnet, who is diagnosed with fibromyalgia and osteoporosis. She was prescribed four 50-milligram tablets a day of morphine as well as vicoprofen for break-through pain.

"I don't abuse my meds," she said. "I don't sell my medicine."

On Dec. 1, Drug Enforcement Administration agents in conjunction with state police detectives assigned to the Bristol County District Attorney's Office executed a search warrant for records at Taylor's office at 3388 Acushnet Ave. The office has been closed since the raid.

Spokesmen for the U.S. Attorney and DEA offices in Boston declined to comment on the nature of the investigation. Meanwhile, Taylor, 58, has not been charged with a crime. His medical license has not been revoked, according to the state Board of Registration in Medicine.

Taylor did not return a phone call seeking comment.

In August, Taylor's secretary, Cathy Pereira, was arrested in a state wiretap narcotics investigation, accused of helping her husband, Paul J. Pereira, and associates obtain painkillers such as OxyContin with fraudulent prescriptions from the office.

An answering service for Taylor's office says someone is collecting patients' names, telephone numbers and addresses to eventually forward them their medical records, which were seized by authorities.

Several of Taylor's patients have gone to St. Luke's Hospital seeking help and have been instructed to call the SouthCoast Physician Referral Line, where an operator will give contact information for several doctors in the area.

When contacted, those doctors' offices say they are not seeing new patients for at least two months.

Taylor's patients have been calling the Greater New Bedford Community Health Center. Cynthia Champagne, assistant director of nursing, said the health center will accommodate the patients as much as possible.

"Anyone who calls for an appointment, we will give them an appointment," Champagne said, adding that she could not answer any questions about the patients' prescriptions.

Almeida said she last saw Taylor a month ago. She received a prescription for painkillers and was told to return Dec. 10. But she then heard from an acquaintance that Taylor's office had been closed. She was told the DEA had her medical records.

"I'm in shock," she said. "I can't believe this happened," she said.

Almeida said she called several doctors in the area but could not find a primary care physician who was able to see her. The best she could do was schedule an April 14 appointment at the downtown community health center. She was told her prescriptions will not be refilled before then.

"I don't know what I'm going to do," she said. "The pain. I end up in a ball. I can't even move... I know I'm going to end up in detox."

Lavoie's insurance company arranged for a March appointment with the community health center. She said she will run out of her pain medications on Christmas Day.

"I have a disease, and I need my meds to live," she said.

After weeks of frustrating telephone calls, Miller found a primary care physician, but his appointment will not be until February.

"Everybody thinks you're out to get narcotics," he said. "A lot of us were using the meds for what they were meant to be used for, to ease our pain."

Patricia Thompson, 65, of New Bedford is still without a new primary care doctor. She broke her sternum and tailbone several years ago and said she cannot sleep at night or walk without holding onto something. Taylor placed her on Percocets, 30 milligrams eight times a day.

Taylor "was a very good doctor. He was concerned about his patients," said Thompson, adding that she went to St. Luke's Hospital after her doctor closed his office. She said she was given 12 5-milligram Percocet tablets and told she would not be given any more.

"I'm being thrown out in the cold," she said. "It's not right. It's not like I abused my medication, but no one's giving me an answer."

Source 

This really upsets me!! My heart goes out to ALL of "Taylor's Orphans"!!  My thoughts and prayers are with you ALL on coming through this without extremely harmful repercussions!!  ~God Bless "Taylor's Orphans"

3 Ways Your Thoughts Can Help You Heal - Ways You Thoughts Can Help You Heal | Parade.com

By Robert Moss

Our thoughts can make us sick, and they can help us get well.

Here are ways to adjust your mindset to promote good health.


Take A Deep

Take A Deep Breath Hold it, exhale, then repeat for 10 minutes. Take a walk, preferably in nature. Breathe in that fresh air.


Laugh!

When you laugh, you pump more oxygen into your lungs, improve blood flow and boost your immune system.

Keep A Journal

Writing about emotionally charged events helps us deal with them mentally and physically.

So Keep On Thinking!!

Source

What's YOUR Best "Camp Name" Contest!!!!

Alright Everyone....if you listened to the show today you already know what I am about to write, but if you didn't listen....other than; tsk tsk shame on you (see link below and go listen!!)....I am about to share some wonderful info with you!!

Our guest today, Kathy Gruver is a 'Certified Medical Massage Therapist" (among other titles) and she has made an offer to my show listeners!!

Here's the offer:

Come up with a "Camp Name" and send it to me at winninglife@rsdcoach.com with the subject line of: "Camp Name", and I will send to Kathy.
Kathy will then pick the best name and the winner will win a copy of her dvd titled:
Therapeutic Massage at Home -- Learn to Rub People the Right Way™.

Like me, you will be so grateful for this dvd!!

Learn more about Kathy and her dvd at:

www.HealingCircleMassage.com You'll be glad you did!!!!


If you have not listened to the show and have no clue as to what I am talking about in this post, go listen to the show now at: www.rsdcoachlive.com and then send me your best "Camp Name"!!

Today is "NATIONAL FIBROMYALGIA AWARENESS DAY"!!

I am so glad there is a day set aside for everyone to be honoring and spreading the word about Fibromyalgia and it increases the awareness!

Today on my show the guest will be "Mother Knows Best" will be giving some healthy and natural tips on how to manage your Fibromyalgia!
Click here today at 1:00pm CST to listen.

Also, join us members of "Living Whole With Chronic Pain Support Network" in honoring and supporting those of us with Fibromyalgia! There will be 'Door Prizes', 'Recipe Contest', 'Live Chats' in the chatroom, and much much more!
Click here to check it out.

Do you have any special events or activities in support of Fibromyalgia that you would like to share here with everyone? I invite you to post any and all info in the comment section of this post. Include links to your own website, those events, etc. and I will also post those links here on the main page of my site.

Wishing you all a most AMAZING day!!

10 Commandments for Interacting With the Chronically Ill

©2006 Susan Williams, http://www.PublicHealthAlert.org

In the realm of chronic illness, one of our more challenging tasks can be gaining support from others. As if finding a knowledgeable and caring doctor wasn’t difficult enough, finding caring and supportive friends to surround ourselves with can be even more difficult. Most people are simply not capable of understanding, unless they have the misfortune of a chronic illness of their own.

How many of us have heard something along the lines of “But you don’t LOOK sick...?” It makes one wonder how a sick person is “supposed” to look. If one were to hobble around on crutches, would their illness suddenly become more believable? Our society understands the visible, physical manifestations of illness, such as a broken bone in a cast or hair loss from chemotherapy. What many fail to grasp is the subtle, invisible manifestations of chronic illness. Symptoms such as pain, severe fatigue, and cognitive impairments are not easily visible to the average observer, which means that sufferers of chronic illness often look “just fine”.

Our society is all about instant results - the mindset that we can just pop a magic pill and all our troubles will go away. When sufferers of a chronic illness do not quickly “get better”, we are often treated as if it were somehow our own fault. We may even be told that we are “hypochondriacs” or that “it’s all in our head”.
Remember when you had the flu? You were exhausted, achy all over, and could hardly get out of bed. But, fortunately, the illness passed and you were back to your old self and usual activities.

Now, imagine if you had never recovered from that flu. Every day, you wake up achingly sore and as tired as if you had not slept at all. Imagine trying to go through your usual activities while feeling this way. Not only do work, school, and regular tasks of daily living become near-impossible, but so do the smaller day-to-day things that so many take for granted, such as simply washing your hair or paying the bills.

It is stressful, it is exhausting, it is depressing... and yet the chronically-ill person continues on in the face of it all.

For those of you who may have, at some point, been the perpetrator of an otherwise well-intentioned comment, please understand that our illness is just as real as that of an amputee or other “visible” illness. To help aid those of you who wonder how to interact with a chronically ill person, allow me to present the Ten Commandments.

1. Thou Shalt Not Imply That We Are Not Truly Ill.
You will not convince us otherwise with remarks such as, “You LOOK good", or “But you don’t LOOK sick". Even if you meant them as compliments, we perceive those kind of statements as insults because they imply that you do not believe us.

2. Thou Shalt Not Imply That The Illness Can Be Easily Fixed.
People with chronic illnesses are persistent, if nothing else. We hang on, day after day. We see countless doctors, take numerous medications, do endless research, and continue hoping that the answer is just around the next corner. So please do not insult us by delivering diagnoses, remedies, or comments such as, “Why don’t you just...” or “Have you tried...” or “You should....” If it truly were that simple, I assure you that we would have done it already. We are sick, not stupid.

3. Thou Shalt Not Imply That We Brought This On Ourselves.
We did not choose to become ill, just as we do not choose to stay ill. Simply having a positive attitude is not going to solve our problem. One would never imply that a quadriplegic chose such a trial for themselves, or could get better “if they really wanted to”. Please afford chronically ill patients the same respect.

4. Thou Shalt Not Insult or Argue With Our Limitations or Behaviors.
If people with chronic illnesses push ourselves too hard, we can suffer serious consequences. Most of us have developed coping mechanisms to help us survive, and it is cruel to expect us to do more than we are able. One chronically-ill woman I know was actually told, “I wish I could have the luxury of sleeping all day". Believe me, we would much rather be out working, playing, spending time with loved ones, participating in normal activities.

“Sleeping all day” is not a luxury for us – it is a critical necessity, one that we must take in order to protect whatever remaining health we have. Perhaps it may help to think of it in terms of being one of the medications we need to take. If you wouldn’t think of denying a diabetic their insulin, then don’t think of denying the sufferer of a chronic illness their critical need, whether it is a mid-day nap, avoidance of certain foods or environmental factors, or something else.

5. Thou Shalt Not Imply That You Can Relate To What We Are Going Through.
Unless you have a chronic illness of your own, you cannot possibly understand just how much suffering is happening. Of course you want to be compassionate and want to relate to people. But when you try to do this by telling a chronically-ill person that you are always tired too, it tends to make the person feel that you are minimizing their suffering. Try saying something more along the lines of, “This must be so hard for you". or “I can’t imagine what you’re going through". It really does make a difference to us.

6. Thou Shalt Be Mindful Of Other Family Members.
Chronic illness doesn’t just affect the person who has it, but the whole family as well. The trauma of the illness can evoke feelings of fear, depression, anger, and helplessness in all family members. The balance of family dynamics will most likely change, especially if it is a parent who is ill. The healthy spouse may end up taking on an overwhelming amount of responsibility, and even children will likely be involved in helping care for the ailing family member. Please keep these others in your thoughts as well, and make an effort to direct some special attention to them, without any mention of illness or disability.

Individual family members adjust in different ways and at different paces. All members might benefit from counseling to help handle the stress involved, and each family member also needs to have time to pursue their own individual interests. External support from friends, neighbors, extended family, religious institutions, and support groups may help ease some of the burden.

7. Thou Shalt Acknowledge Our Efforts and Celebrate Even Our Small Successes With Us.
For the chronically ill, any day that we can accomplish a task, no matter how small, is a “good” day! Our lives are often measured in terms of doctor’s visits and lab work, and our “success” measured by a rise in Natural Killer cell counts in our blood, or actually completing an entire load of laundry in just one day. Please do not look at us as if we are joking when we share these celebratory moments with you. Celebrate with us, be happy with us, and do not kill the moment by announcing that you just completed the Ironman Triathlon in record time.

8. Thou Shalt Offer Thy Specific Help.
There are so many ways to help -- the most difficult part is usually getting a chronically-ill person to accept that help. They do not want to feel like a “burden”. If you offer a vague, “Call me if I can help,” the call will probably never come. But if you are sincere, consider extending offers of specific help, such as a ride to a doctor’s appointment, or picking up a few groceries or the dry cleaning. These activities can be done in a way that does not add any extra burden to your own schedule. If you have to go to the grocery store for your own family, it really isn’t much extra work to grab an additional loaf of bread and jug of milk. If you have to swing by the post office, getting an extra roll of stamps or mailing an additional package isn’t much extra effort for you – but it can save a chronically-ill individual a lot of time, energy, and exacerbation of symptoms.

9. Thou Shalt Remember Important Events.
I’m not just talking about birthdays and Christmas. A major doctor’s appointment, lab test, or new medication are all important events to the chronically-ill person. Try to sincerely ask, “How was your appointment? How did the lab test go? How’s your new medication?” The chronically-ill person will appreciate that you remembered, and that you cared enough to ask about it.

10. Thou Shalt Get To Know The Person Behind The Illness.
The illness may be a part of us, but it’s not a part of who we ARE. We want to be known as more than “that sick person”. You may discover that we have a wickedly funny sense of humor, a creative imagination, musical talents, or any number of things that better describe who we are, and what we would rather be remembered for. (It makes for better gift ideas too -- rather than presenting us with yet another self-help book on the power of positive thinking, now you can give us a CD from our favorite singer or movie of our favorite actor instead.)

Most of all, please remember that the chronically-ill person is more than worthy of love, friendship, and support. Most chronically-ill people I know are the toughest nuts I have ever met. Indeed, I have come to believe that a chronic illness is not for wimps – rather, only the toughest of the tough can continually face the struggles of life while battling a debilitating disease. That kind of grit deserves nothing less than pure respect and admiration, even from our toughest critic -- ourselves.

You CAN Choose!!

Give yourself a gift today.

Give yourself a challenge.

Challenge yourself to accomplish something new, something of your own choosing, before the day is done.

It could be something you create, or learn, or improve, or a problem that you solve.

Make it something that's far enough out of reach to stretch you.

Make it something that's close enough to your heart to push you and inspire you.

Decide that you will do something with this day that will distinguish it from all the others.

Choose to make this a day that you'll always look back upon with satisfaction and gratitude for having accomplished something of lasting value.

Then get busy and make it happen.
Work your way through the challenge that you've so thoughtfully provided for yourself.

When you reach the goal, pause for a moment and fully experience how fulfilled, empowered, effective and purposeful it feeeeels.

Then smile to yourself with the satisfaction of knowing that you can choose to accomplish again tomorrow, and the next day, and the next.

Celebrating the "Women Of HOPE" - Journey # 5

~Kris' Journey~

My name is Kristin and I am a 50-year-old female who has been suffering with chronic pain for 9 years.


After researching these diseases. I believe mine started from years of emotional and sometimes physical abuse in my first marriage. Spending everyday for 17 years with worry that you may make your husband mad or upset in anyway or at any moment takes a toll on your body. I remember going through panic attacks and being afraid to sleep at night or even go out for anything. I finally got the panic attacks under control and I am so grateful for that.

I then had surgery on my neck for a herniated disc that was causing a lot of pain and pressure in the back of my head and neck. About 1 year later the Chronic Pain started, first with Fibromyalgia. It took many doctor appointments and testing to finally get an answer to the all over aching and pain I had.

I was at that point divorced from my first husband and during the time I was being tested to find out what was wrong with me, I met up with an ex-boyfriend on a class mates site and we started talking and became close and now we are married.

He has helped me through all the hard times and taken me to doctors and tried to get me the help I needed. I have been very blessed to have him.

I then tried to work again and did ok for a while, until one night after work, I was out walking with my dog. It is something we had done for about a year. We were up to 2 miles a night, when I felt a horrible pain in my hip. It went shooting down my rt. hip to my foot. The pain was so bad; I could barely make it back to my car. The pain continued, so I had an X-ray , then MRI. The MRI showed herniated discs in my back, so I went for epidural injections and therapy. When neither of those things worked and the pain continued and even got worse, they sent me to a pain doctor. I was diagnosed with RSD by him and sent for desensitization therapy, aqua therapy and PT. He also did nerve blocks and finally got me on a combination of meds that did seem to help some with the pain. They then tried a trial SCS (Spinal Cord Stimulator) which did not work for me at all. But the pain did go down some from the combination of the other things they had me try.

Since then, I have also been diagnosed with Degenerative Disc Disease with and Stenosis Arthritis in my neck and back, Raynaud's Carpal Tunnel and Hyperthyroid.

I know how devastating it can be for a person suffering and those around him/her. I have had different pain syndromes and have learned a lot about them in that time, but I know there is always more to learn especially from others who also have these diseases.

It is very hard to not be able to do the things you used to, such as hold down a job and know where your next paycheck is coming from. It is really hard to have a doctor tell you that it is all in your head, or a spouse who thinks that you are lazy, or friends who just don't want to be friends any more.

I am fortunate, though; my family and friends have been very understanding and as helpful as they can. My husband is a very concerned, loving and compassionate man and hopes that there will be a cure for some of these diseases soon. I know not everyone who suffers has family helping them. Most of the time, family and friends are not there for them.

Before I had these pain diseases, I had a more normal and active life. I sometimes held down 2 or 3 jobs, plus had some nighttime activities. I am now unable to make plans with friends or family because of pain. It is a hard thing for them to understand and that is one of the things I am hoping to change one day.

I am still able to get around even though I walk a little funny. I am able to do light house-work and keep up with the cooking and shopping. Some days I am just too tired or sore to do things, so I don't. I just do as much as I can and then stop. I am unable to work or hold down a job at present, but am hoping to change that one-day with treatment.

~Kris~

Celebrating The "Women Of HOPE" Journey # 2

~~Marla's Journey~~

My name is Marla Martindale and I have been diagnosed with RSD since November 2003 after breaking my ankle on October 1, 2003 at 4:10pm....yes I remember it well, because I broke it on both sides.
While I had my cast on I couldn't stand anything over my toes and I would get real touchy if anyone even got close to my foot, but I didn't know why because I had never broke anything that severely before.

Then once the cast came off and the doctor was telling me the exercises I needed to do he touched a certain spot on my foot and I told him "You bout made me wet myself when you touched right there" he responded with "Clean up on aisle nine". He continued to explain all the things I needed to do but I should be able to get up and walk out without the crutches, but if not that was fine just work on it over the next couple days. So when I went to get up off his table and start walking again without crutches, I couldn't do it!! It hurt way too badly to put weight on my foot and to even put my foot on the floor. I know my husband, the doctor and his nurse thought I was a weenie but I really didn't care, I was using those crutches like it or not.
I went back to my office and was talking with some of the ladies around there and I had my leg hanging down when one of them noticed it was all deep purple. She asked me about it and at that time I hadn't noticed it because I just had the cast taken off not an hour before. She was telling me I needed to call the doctor and let him know, but I didn't, I waited about a week even though it continued to turn deep purple and had this horrible pain oh dopey me just kept putting it off....don't do that people!!

When I did call and was describing what was going on to the nurse she told me to come in right then. So I loaded up in my car and went right over. The doctor took one look at my leg and sent me for x-rays. Once he had the x-rays back he tried to explain to me that I had Reflex Sympathetic Dystrophy but he was talking or explaining over my head. And my head was already reeling from just the name "Reflex Sympathetic Dystrophy".
To be honest I think I missed some of what he was saying because I got stuck on those words, especially "Dystrophy", that didn't sound like something I wanted because I kept picturing Jerry Lewis doing his telethon for Muscular Dystrophy and I knew that was bad news. But all in all I didn't catch much of what this doctor was telling me.

He told me he was going to refer me to another doctor who was better capable of treating this and was about to walk out the door when I asked him, "What do I do about this" and he looked me dead in the eye and said, "Don't give into it". HUH??
Well now at the time I was more than a little upset!!
I was thinking how dare he leave me like that, but he did. So I go to this other doctor. She was so shocked to see someone with RSD. She hadn't seen it since she was in med school many years back. She explained things to me in a manner in which made sense and got me started on physical therapy. I must say the only part of physical therapy I didn't like was the contrast baths....those hurt so badly. I went through 8 weeks of physical therapy while still working full time.
I also had 3 rounds of Spinal Blocks Injections that would only last about 30 days at best.

Then I started getting better and I was doing really good for almost 2 years. Then in October of 2006 I had a dental appointment to get my front tooth fixed. I took the guidelines from the RSD Organization for dental procedures with me and the dentist followed them to the letter.

It was my body that didn't pay any attention to them. It started going crazy on me. I started shaking like I had a severe case of Parkinson's Disease. I had to sit in my desk chair for 3 days straight, day and night because I couldn't find anything any comfortable enough to sit or lay in, so that's where I stayed.
My leg swelled up bigger than it ever had before and was so deep dark purple, it was pure agony for sure. That is when my RSD went into overdrive!! It decided to venture out to the rest of my body....
and I do mean everywhere on my body!!

But you know what, I survived it and I am growing stronger because of it. Don't get me wrong, I have had my share of "pity parties", but I have had more of trying not to allow the RSD to take control over me, I will have control over it!! If you are finding yourself needing to understand how to get control of your RSD and your life, I am here for you!!
I can help you come to terms with what is going on inside your body so you can have mental strength to control the amount of pain you actually do feel. It's not an easy road to journey down, but if you are willing to put in the time and effort and aren't afraid of hard work, than you CAN and WILL succeed too!!

In October 2007 I was not only diagnosed again with RSD-Full Body, but now they threw in Fibromyalgia, Osteoporosis and Multiple Sclerosis.
Guess my RSD was lonely and needed someone to play with, so instead of inviting just one playmate over, it decided to bring along the whole crew.
To be totally honest with you though, I really don't give those others much thought because frankly none of them can compare to RSD!!
So I have embraced it and have learned so much about myself, and am still learning things everyday, I have LOVED what I have learned and what I continue to learn. And I look forward to helping you learn about yourself.

I wouldn't wish this on my worse enemy, but I am so glad that it all happened to me, because it has made me stronger, softer, more caring, more giving, insightful, loving, in-touch, feeling valuable, and so many more things that could completely fill this page, so I will just leave it at that. And once you get to know me, you will see, I'm simply an honest person who wants nothing more than to help everyone as much as possible.

On March 31, 2008 I did a 4 day trial with a Spinal Cord Stimulator. It didn't help 100%, more like 30-35% and that was enough for me to tell the doctor to set up a time for the permanent implant because it can only get better with time. I am ready to take the time needed to make it work for me on more like a 45-50%, and beyond!!

I did learn some interesting things during the trial that wasn't told to me prior to me doing it. When I told the doctor about them, he just laughed and said, "Well, nobody has ever told me things like that before." Guess he didn't realize I was going to tell all. =)

Since then I have spoken with numerous people who were going through the trial and have shared the little things the doctor doesn't tell you!! So I am putting all that information into an eBook that will be available on my site soon! So check it often!!

On June 2, 2008 I did have the permanent Spinal Cord Stimulator implanted and I am so glad I did. The first few days weren't easy, but it all has been worth it!!

Webinar: The New Face of Fibromyalgia

Join the American Pain Foundation on Tuesday, March 10th, at 7 pm (EST) for a one hour online live interactive webinar, The New Face of Fibromyalgia, with Kim Dupree Jones, PhD, Associate Professor in the Schools of Nursing and Medicine at Oregon Health & Science University.

Space is limited so click here to register today. Dr. Jones will be providing the latest guidelines for the diagnosis and treatment of Fibromyalgia. She will focus on a comprehensive treatment program including information about other diseases and conditions that often accompany it.

NOTE: After you receive conference details, please run the System Test (link is included in registration email) to make sure your computer is ready. We're sorry that our program will not support Macs until later this year; you may register and participate by phone only and we will post the PowerPoint presentation on our website the day before the webinar so that you can follow the presentation.

Can't make it this time? Don't worry! This webinar will be archived on the APF website.

Click here for more information