CHRONIC PAIN PATIENT REACHES OUT TO OTHERS

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CHRONIC PAIN PATIENT REACHES OUT TO OTHERS
KEITH ORSINI

October 2006

Paul Livingstone, Portland Press Herald

If Keith Orsini had started his Organization, American RSDHope, just for others, he would have to count himself pretty successful. Since 1995, the support organization for people who suffer from Reflex Sympathetic Dystrophy Syndrome now is the focus of a popular website based in Harrison, Maine, a successful yearly national conference and, starting early next month (November 2006), (will be filmed by) documentary by filmmaker Barry Adler (of Impactmedia, see link below for additional articles).

According to Orsini, he is just one of eight percent of people with RSD throughout his whole body. Most sufferers have localized pain, typically in the limbs. Orsini said he experiences from head to toe what is commonly described by sufferers as an intense burning sensation.

His symptoms began in 1974 at age 14, and he was told the pain would eventually go away. When he broke his back in a car accident in 1985, the pain spread. Not until 1993 was he diagnosed with RSD, and he later learned it affects as many as 20,000 people in Maine. This abnormal nervous system response can start with a simple injury.

“With RSD there is no way to make you feel better. No one is in a position to help you, it robs you of sleep , short-term memory, concentration, and all of the things that make you a whole person, ” said Orsini. Over time, he lost the ability to walk, and had trouble convincing doctors he wasn’t “faking” his condition. Shortly after moving to Maine, he found an RSD sufferer who gave him two bags full of RSD literature about the disorder. Until then, he and his parents had very little knowledge about the problem.

With the help of his parents, Lynne and Bob of Harrison – known on the internet as Mom and Dad O – the 46 year old was able to launch a website devoted to support for people with RSD. American RSDHope has a staffed phone number, sends mailings, and holds conferences.

“It was originally intended just to help people in Maine, it has just kind of mushroomed,” said Orsini. The website now gets about 25,000 hits a week . “It’s really about awareness. There are barely any treatments for this disease,” he said.

In 2004, Orsini was just the sixth person given a newlydeveloped treatment using ketamine. When used in low doses, he said, the drug, a powerful tranquilizer often used for horse (and in the emergency room), helps the body re-set the pain cycle to zero. His pain levels immediately dropped to just 15% of what they had been (for the RSD prtion of his pain). His pain has redeveloped over time, but he is scheduled for another treatment this fall.

“Even if it only helps half the patients, in one year we’ll have advanced more than in the last 100. It’s an exciting time,” said Orsini.

For more information about Reflex Sympathetic Dystrophy Syndrome, or CRPS, or American RSDHope Organization, you can visit their website, www.RSDHope.org

KEITH ORSINI – PART TWO

I just wanted to add some things to the previous article that was written about me last month.

As is the case in many interviews and articles, as many of you out there can attest to, they are not always able to get the entire story and there are always one or two things that are a little off. The paper only allows so many words of course. Paul, the author of the previous article, wanted to do a longer story but I guess that is the mark of a good journalist right?

As is the case with many journalists, I think he was a little overwhelmed by the whole thing once he learned more about the disease and the extreme impact it can have on people’s lives.

I have had the pleasure of talking with many wonderful reporters, newspaper and television, who are surprised by this disease. They are surprised at first because they have never heard of it, shocked when they learn of the devastating pain that is involved, and then excited when they see the potential for a great story. We all have great stories don’t we?

It is amazing how this disease can take a fairly normal life and turn it inside out. I always say it is like a bomb is dropped into a family. it affects every aspect of family life not just the patients own body. It destroys finances through the loss of employment as most patients are unable to work; savings dry up as the medical bills pile up.

Many marriages fail as the stress rises. It takes a very special spouse to stick with and by an RSD patient as the Doctors tell one or both the pain is imagined, or that the pain will never go away, or that the patient is a drug-seeker or Doctor-shopper, or maybe it is just the daily battles with symptoms like short-term memory loss, concentration, irritability, insomnia, exhaustion, and the side effects from the medications.

These are some of the many things that are difficult to get across in a typical five or ten paragraph newspaper article or 2 or 3 minute television interview. Another problem I have run into lately, where I am currently doing much better than I have in the past, is that I don’t look like I am in pain to the average person. To another chronic pain patient, who knows what to look for, the signs are easy to spot; bags under the eyes, slight hesitation getting into or out of vehicles or chairs, the need to lie down for a few hours every afternoon, etc. Some things that are seen some that are not. But I no longer have the wheelchair I had only a few years ago. I no longer use the cane I did only a year+ ago, so to the average person I look normal . I get those strange stares if I have a bad day and need to use the handicap sticker in my car or on my license plate.

What they don’t realize and what is truly impossible to get across to a someone not in the RSD community, be they patient or loved one, is that everything could change in an instant. A little over a year ago I tripped over my cat in the kitchen. In trying not to squish her on the way down, and also not to land on my head, I ended up twisting my back and landing hard on my side. it aggravated my RSD and my lower back problem. I was in physical therapy three times a week for four months. I was having to use my cane and my pain during those six months was very high.

I feel very blessed to be doing so well right now. Those of you who saw me at the conference on November 3rd and 4th, 2006 probably noticed I had lost some weight and my pain level was down from the last conference and definately down from the pictures that are on the website in the RSD Awareness items section. It was due to a combination of factors; walking every day I could in the last year, using the local Bally’s Gym (mainly treadmill/Bike), the residual effects of the ketamine infusion, a good course of treatment from a great RSD Doctor (Doctor Paul Muscat of Portland, ME), and I have been following the principles of ACT or Acceptance and Committment Therapy.

Anyway, I got off-topic. Back to the article.

In the article it mentioned that Barry Adler of Impactmedia was filming his documentary. I just wanted to make sure it was clear that American RSDHope is not the focus of the documentary. What is the focus is RSD or CRPS and its impact on the patients and their loved ones as seen through the eyes of BArry Adler, the filmaker. It is his families journey through this process. He will be including many interviews with patients, loved ones, as well as medical professionals.

Now, he came to the conference and filmed the conference for us. He also did quite a lot of interviews, separately, for the documentary. He interviewed many patients and their loved ones abouth their experiences with RSD, including myself and my better half, Petra; she runs, along with Tom Ruggles, our Loved Ones workshops at our conferences.

I wish in the article he was able to better convey the pain I described to him that we endure. I always use the same two analogies; fire ants and limb-on-fire. For those familiar with fire ants, they are typically in the warmer parts of the United States, they are nasty little ants that have a venom they inject when they bite. It burns with a very high intensity. They are usually found in the ground and will swarm when attacked. If you step on a fire ant mound your foot is instantly engulfed in a sock of flaming red ants and it is a pain exactly like RSD.

In the Limb-on-fire analogy I liken RSD to replacing all of the blood in your veins in your limb with lighter fluid and then lighting it on fire. then having it stay that way 24 hours a day, 7 days a week. that is the nearest approximation I can give to a non-RSD person of what it is like. Then they visibly flinch when you tell them you have full-body or systemic RSD and feel that throughout your body. But again, I understand that there is only so much room in a newspaper.

At the beginning of the article he mentions that my pain began at age 14. That is true. I had developed an eye disease called Uveitis. Its chief symptoms were intense burning pain and decreased vision, mainly left eye but affected both. They couldn’t find a reason for this though no matter how many tests they ran or specialists they sent me to. The Doctors were quick to point out however that even though they didn’t know exactly what it was, they did know that there was no reason for the intense burning pain I was describing.

But they didn’t diagnose me with RSD. That would take another nineteen years and an automobile accident. Actually it was a truck accident. I spent the intervening years, 1974 to 1993, going to many Doctors, specialists, etc. (like so many of you) in different clinics in different states. All specialists in their fields in all different fields. All said pretty much the same type of things to my parents and myself;

1) It is all in my head

2) I am making it up to gain attention, especially since there were five kids in our family they were sure this was the case.

3) There was absolutely no medical reason behnd my complaints of burning pain, sleeplessness, sensitivity to light/sounds/vibration, etc.

4) I was Doctor shopping until I found one who would agree I was “sick”

5) I was just looking for medication.

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