CRPS articles - new articles February 2012

We just added a few new articles to the website this week in case you wanted to check them out.

One in particular I found very interesting;

Neuron Memory Key to Taming Chronic Pain

The subheading reads;

Study Suggests Erasing Neuronal Memories May Help Control Persistent Pain

The first two paragraphs should be enough to make you want to read the entire study if you suffer from chronic pain but especially if you suffer from CRPS I think, or any type of neuropathy;

Newswise — For some, the pain is so great that they can’t even bear to have clothes touch their skin. For others, it means that every step is a deliberate and agonizing choice. Whether the pain is caused by arthritic joints, an injury to a nerve or a disease like fibromyalgia, research now suggests there are new solutions for those who suffer from chronic pain.

A team of researchers led by McGill neuroscientist Terence Coderre, who is also affiliated with the Research Institute of the McGill University Health Centre, has found the key to understanding how memories of pain are stored in the brain. More importantly, the researchers are also able to suggest how these memories can be erased, making it possible to ease chronic pain.

Let me know what you think!

We also added back in an article we used to have on the old site, from a 2009 edition of the US News and World Report, an excellent magazine if you have never read it. It is chock full of great information and very few ads. Don't let its' slim size fool you.

The reason we re-posted it was because the content is being bandied about a lot these days; the topic of addiction, dependence, and tolerance and the problem of people not understanding the differences between the three. I will also include a link to an article I wrote on the subject.

Most people Do not even understand that tolerance is part of the equation and it is an important part nor do they understand the true definition of dependence. Part of this is the fault of the media for not defining it correctly and part of the fault lies with the medical community for not correcting them I believe.

The article from US News and World Report is called "Managing Your Pain, How to Use Prescription Drugs Without Becoming Addicted"

I think that there are a great many lawmakers out there, legislators that is, and people in the media (who I doubt have ever pain in real pain or know anyone who has), who truly understand that that is possible.

In ADDICTION, DEPENDENCE, AND TOLERANCE, an article I pulled together a few years back is the following quote;

"Some medications used to treat pain can be addictive. Addiction is different from physical dependence or tolerance, however. In cases of physical dependence, withdrawal symptoms occur when a substance suddenly is stopped. Tolerance occurs when the initial dose of a substance loses its effectiveness over time. Addiction and physical dependence often occur together." People who take a class of drugs called opioids for a long period of time may develop tolerance and even physical dependence. This does not mean, however, that a person is addicted. In general, the chance of addiction is very small when narcotics are used under proper medical supervision." The article goes on to say, "Most people who take their pain medicine as directed by their doctor do not become addicted, even if they take the medicine for a long time."

There are some great facts in there backed up by a few very good articles in case you ever need to make the case to a Doctor or insurance company. I tried to pull together information from many different articles regarding addiction, dependence, and tolerance to help explain the differences between the three.

Hope this helps!

Have a great week everyone! Stay warm!

Peace, Keith

American RSDHope

Ice and CRPS or ICE and RSD

I have been asked this question so many times that I have written about it a lot. So if you have read it here or elsewhere before, feel free to skip on over it :-D

The question is, Is it bad to apply ice pack to the CRPS (or RSD) affected area? (or even nearby)

Or, Is it bad to use the hot/cold contrast therapy in the CRPS affected area?

(hot/cold contrast therapy

I would definitely suggest you read our physical therapy section of the website, especially the article on Ice and CRPS,

one section of the article on Ice and CRPS, Dr Hooshmand states the case very well when he says;

"On the other hand repetitive application of ice freezes and coagulates the myelin (fatty tissue insulating large nerve fibers) exactly like ice freezes and solidifies melted butter. As the ice freezes the large nerve fibers, causing freeze damage to the myelinated nerves, the patient develops sensory loss and pain due to permanent damage to the large sensory nerve fibers.

This aggravates the RSD by adding sensory nerve pain of non-sympathetic origin to the initial thermal sensory pain of sympathetic origin. As a result, Ice provides total anesthesia and relief of pain for several minute the same way as the hand becomes numb being exposed to snowballs in the winter. However, a few hours after the cessation of ice exposure, the pain recurs with vengeance due to reactive enlargement of blood vessels after the constriction of blood vessels due to exposure to ice. This phenomenon causes excellent relief of pain with ice treatment followed by not only aggravation of pain, but damage to the nerve fibers adding sympathetic independent pain (SIP) to the original sympathetic mediated pain (SMP)."

If you need a refresher course on SIP and SMP (IMP as it is sometimes called) check out this article.

But pay particular attention to the words I put in bold letters in the quote above. So often I hear from patients who say, "But it feels better when I apply ice or run my hands under cold, ice-cold water for a few minutes", but they have to do it more and more often as the weeks and months roll on. And then hours later the pain is worse then ever.

The reason they have to do it more often and the reason the pain is worse than ever afterwards is both the same, are both the same. That is what Dr Hooshmand is saying above. The more you do these things, the more you are breaking down the protective myelin sheath that protects the nerve. Pretty soon there is no going back, the damage is permanent and the pain is no longer SMP, or localized, but SIP, or brain centered. This is where the pain-cycle gets in that stuck position and is nearly impossible to break. It is also where it seems the disease spreads.

We hear so many sad stories of patients whose use of ice precipitated their spread of their CRPS, from the one small area to not just further up that limb but also the opposite limb. It also seems to accelerate the timing of the disease through the stages if ice is used repeatedly.

Remember also that ice, even very cold water/temperature, can cause the blood vessels to constrict and/or spasm. This is one of the four main symptoms of CRPS (spasms in muscles and/or blood vessels). It can be very, very painful for your extremities; toes, fingers, feet, hands, nose, etc.

So please, be very cautious here. If your physical therapist insists on using ice, educate them. This is your life we are talking about, you are the boss, take control, take charge!

There are other articles on the net besides the one sited above too. I just think his is the best and probably was the first!

Peace,

Keith Orsini

American RSDHope

New Book for teens with CRPS / RSD

There is a new book written by teens and for teens with CRPS / RSDS, more commonly known as complex regional pain syndrome. We wanted to pass along their information so you could check it out and let us know what you thought of it!

It is co-written by Doctor Gillian.R. Lauder and Roslyn Massey, and it was illustrated by Shona Massey. Both Roslyn and Shona Massey are high school students. Doctor Lauder is a Pediatric Anesthesiologist with over 20 years of clinical experience.

You can read more about the book as well as order it by going to their website here!

According to their website;

"The principal aim of this book is to provide well-presented clear information for teenagers who develop CRPS. It is hoped that it will be used as a tool to aid the early recognition of CRPS and implement the necessary team approach to management. Medical terms have been explained in a way that can be easily understood. In an effort to make it even more useful, the authors asked a focus group of teenagers– which included those who have been treated for CRPS – to provide their feedback.

In Complex Regional Pain Syndrome (CRPS) Explained, teenagers can follow cartoons of Harold the alpha lion, who develops CRPS, and relays his journey from diagnosis to team management and recovery. With a clearer understanding of CRPS, teenagers will be able to take part in the decisions that affect their health and body.

Complex Regional Pain Syndrome (CRPS) Explained is referenced throughout and provides a list of other relevant books. In addition, an extensive list of contacts is provided to promote access to pain management clinics worldwide. Hence, although this book is specifically designed to cater to the needs of a teenager with CRPS, it will also serve as an extremely useful educational tool for families and healthcare professionals.

Let us know what you think of it!

American RSDHope

Ketamine helpful for depression

According to a recent article, published on LiveScience,com ,

" Prozac and other treatments each improve conditions for only about 30 to 40 percent of the patient population, barely outperforming placebos; meanwhile, a single infusion of ketamine washes away the symptoms of 80 to 90 percent of patients who try it,"

That is amazing! The article is very interesting and it goes on to talk about how the Drs and researchers at Baylor, where the study is being conducted, believes the FDA may approved the drug as an antidepressant in as little as two years!

Still, much is needed to be learned as to how the drug works.

"Scientists understand how ketamine chemically affects the brain, but they don’t quite know why it alleviates depressive symptoms. According to Ken Robbins, a clinical professor of psychiatry at the University of Wisconsin-Madison, ketamine binds to portals in the brain called NMDA receptors; this prevents a chemical called glutamate from occupying the same spots. Because glutamate revs up the system and can cause cell damage, ketamine has a sedative effect by blocking it. Somehow, this causes euphoria.

"The hypotheses for why ketamine might be helping depression are in their infancy," Robbins said. Whatever the explanation, "it's a very different mechanism from that of other anti-depressants we now use. I think what we're seeing is there may be a whole other neurotransmitter system that plays a role in depression that we weren't aware of."

You can read the complete article here

The drug, which is addictive and must still be administered through an infusion, holds great promise and most of the readers here will remember has been used for years to treat CRPS. Perhaps if it is approved to treat depression it will open the door for treating CRPS patients as well, many of whom suffer from depression as a result of years of being in chronic pain.

Peace, Keith Orsini

American RSDHope

FIBROMYALGIA - NEW ARTICLE

There was a new article published recently on Fibro.

The Clinical Concept of Fibromyalgia as a Changing Paradigm in the Past 20 Years

It is a very good article and if you have fibro, which millions of us do, definitely check it out. 2-4% of the population in fact have fibromyalgia!

Quite a large number huh?

This is a huge sweeping article that encompasses all aspects of the disease, from beginning to end, so even if you don't have it you might find it an interesting read.

I found it interesting in that it said that only 5-7% of patients are male.

Figures. Not only do I get a rare disease like CRPs but then I am in that strange percentage of patients that also develop Fibromyalgia and in that even smaller percentage of fibro patients that is male. Not to mention that most CRPS patients are also female. AND my CRPs is full body, or systemic and only 7-10% of CRPS patients end up with systemic CRPS. Then add in the number of those patients who go on to develop CFIDS (chronic immune deficiency syndrome ) I am not a math genius but I would say those odds are pretty high. Maybe I should play the lottery more.

I am not complaining. Life is what it is, you play the hand you are dealt. But it would be nice not to be so tired, exhausted, and just worn out all the time. And oh yeah, not be in pain. That too.

But the patients I talk to, the fibromyalgia patients that is, the overriding symptom they complain the most about is the fatigue, more so than the pain.

Similarly with CFIDS; as they say on the CFIDS Association of America website; the overriding symptom is incapacitating fatigue; (experienced as profound exhaustion and extremely poor stamina). There are other symptoms of course; short-term memory problems, difficulty concentrating, flu-like symptoms, etc.

Another interesting section of the article is where they discuss who should be doing the diagnosing now. They make the case that there is enough information available that there is no longer the need to refer the fibro patient out to specialists, that the PCP (Primary Care Physician) has enough information at hand that in his office setting he should be able to determine whether or not you have fibromyalgia; provided you do not have a multitude of other medical conditions which could possibly overlap. That a diagnosis of fibro should be made based on inclusion not a diagnosis of exclusion. This is a big point and well made in the article.

They also point out the importance of movement, activity, to the fibro patient. Do something, anything, to keep your body active. Walk, bike, swim, volunteer, something. The worst thing you can do with this disease is nothing. Your muscles will atrophy very quickly and the fatigue and muscle pain will worsen exponentially.

So check out the article, let me know what you think!

peace, Keith

American RSDHope

www.RSDHope.org

CRPS and Cold Weather

This time of year many CRPS patients feel increased pain as well as other symptoms and may never have realized that there is a true connection between their CRPS and the temperature. But temperature changes, even barometric changes, can severely affect your CRPS.

CRPS Symptoms

Many patients report being able to tell when there is a storm coming, even small changes in weather patterns, by the subtle changes in their pain. For those patients who live in areas of the country that experience tremendous storms the pain can reach epic states, hopefully for only short time periods. Orlando is one area I know of that has some doozy thunderstorms having gone through quite a few. I have not been through any tornado's but have experienced a few hurricanes and they weren't much fun, neither were blizzards. I am sure you all have had your share of similar experiences.

For most, not all, living in the colder climates is simply too painful for CRPS patients. The extended below freezing temperatures cause too much pain throughout the winter months. This can all be traced back to the discussion of the damage that the application of ice has on the CRPS-affected area of the body we have on our website in the Physical Therapy section.

ICE and CRPS

The principal is the same, whether it is ice or cold, the damage to the myelin sheath protecting the nerve is the same, just slower. In addition what happens is all the forward progress the patient has made during the warmer months, regarding physical therapy/activity, is lost during those winter months many times, even if you are somehow able to continue with some form of therapy in the cold months (warm water exercise in a pool, walking in a gym, etc.), because of the damage done simply being outdoors in the normal course of living; going to and from the car going to the store, Dr., gym, etc.

And I think anyone who has lived in the colder climates will attest to the fact that no matter how much heat you have on, 70 degrees in the house during winter, never feels as warm in your body in the wintertime as 70 degrees on a sunny day during the summer or spring or fall months.

In the end, many CRPS patients move further south. But too much heat, becomes too much as well, and states like Florida and Texas are too difficult to bear.

These were lessons I learned the hard way. But like many of you, for much of the time I had no choice at the time or lived where I lived for family. Eventually I became what they call a "half-back".

What's a half-back? Oh, I am so glad you asked, unsolicited man in the back row. And a very good question indeed during Superbowl week! Go Pats!

A half-back is someone who starts off living up north, moves down south, then gets halfway back and stops. Half-back. We stopped in NC. Its' climate is a mix of mostly great weather 10 months a year, and very little colder weather. We basically looked at the map to see where in the country we could find the best weather, temperature-wise; not too hot, not cold, extended summer, shortest winter possible, etc. Of course there were a lot of other factors involved that people normally use when choosing a place to live; housing, jobs, cost of living, crime rate, and a biggie, medical care.

So don't be surprised this winter if the cold weather has been making your pain worse, your allodynia heightened, your sensitivity worse, or any of your other symptoms MORE! Find ways to lessen their impact if you can and hang on until spring. If it is possible to move, think about it. If it is not, start figuring out ways to lessen the impact of the winter on your CRPS; warm water exercise, more PT indoors, different clothing, discuss with your Dr., etc.

There are also some CRPS patients for whom the warm weather is best, they actually prefer the heat, real heat. For them, they should consider those hot states, Texas, AZ, New Mexico, FL and others. Where you live can have a huge impact on your pain.

The bottom line is we need to remember as chronic pain patients that we need to always be thinking long-term and that treating our disease does not mean only with medications and medical treatments but also lifestyle. Small changes can reap big rewards.

Peace, Keith

American RSDHope

Being happy doesn't mean that everything is perfect, it means that you've decided to look beyond the imperfections.

Loss of Karen (Orsini) Toner)

We at American RSDHope, and my family especially, mourn the loss of a wonderful woman, person, mother, wife, daughter, and friend; Karen Orsini Toner.

Karen passed away on Sunday, January 22nd, 2012; due to complications from a long, hard battle with MS. Her fight took a sharp downward turn this past fall that her body simply could not recover from. She was only 55. There were other medical issues at play that the Drs were just not able to decipher.

You can read more about Karen by stopping by our website

She worked for many years now on the Board of Directors of American RSDHope and was a vital link in a very small chain. She helped fill a mighty big void when we lost my dad seven years ago, now we have lost Karen as well.

So many of you have talked and/or emailed Karen over the years; although you may not have known it. If you have written to us at RSDHope, chances are you wrote to her. She answered most of the emails that went to the office. That is a lot of mail believe me. She and mom, Lynne, handled all the dealings with the supports groups around the country; the Mentor program; all of the products that went through the awareness catalog; and a slew of other things.

She and Lynne got together every day to work, down in the RSDHope office, side by side, working on their files and computers. Karen scooting to work on her walker, then eventually on her scooter (they lived next door to one another). They had to move part of the operation over to Karen's nearer the end as it became more difficult for Karen to get over to Mom's and so mom would just pop over there and they would work there. But she kept on going right until she could no longer use her hands to type. She was amazing.

She was upset that she was leaving so much work for myself and mom to do, with the group, more than upset at her loss of being able to do it herself sometimes I think. She had so much courage, my sister. She was a strong person, got that from my parents, both amazing and strong people. Our family has been hit with some pretty tough things over the years. I know, everyones has. You just wonder sometimes, when does it get a little easier? When does the downhill leg come? When can we coast for a little bit or is it always going to be struggle?

I guess it finally is coasting time for Karen. She is in no pain, her body is whole, she is happy, free, and laughing with my dad in Heaven. She said she talked to him the night before she passed. I have no doubt of that. He was waiting for her, to guide her. She was at peace knowing that.

Death is always hardest on those left behind. We grieve not for the dead, but for ourselves, because those we love have been taken from us. We have their memories if we are lucky and if we were smart enough to make some great ones before they left. Be sure to make some great memories with the ones you love because you never know how much time you have left.

I have some wonderful memories of Karen, many, many memories. I am lucky. One day I will see her again I know.

Until then, our fight goes on. And we continue to make memories with those amazing people still in our life. Life can be short, don't waste it on anger and hate. Let go of the past and move forward.

peace,

Keith

We have one life; it soon will be past; what we do for God is all that will last.

Muhammad Ali