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

New articles

We have posted a couple of new articles on the site, in the FDA section as well as in the Fibromyalgia and coping section (coping with pain and sleep), in case you haven't been there in January (2012).

We are trying to rotate the articles to keep them fresh on the new site. We won't keep as many as we had on the old site, it was just so much overload so as we add new ones, we will take the last one off in each category.

I did want to put in another plug for an article that we have on the site that I seem to refer a lot of patients to lately; Addiction, Dependence, and Tolerance - What is the Difference?

It seems there are still some Drs. who are confused about the differences between the three, probably because many medical boards are putting incredible pressure on them regarding the dosing of opiods, due to the illegal sale and use of them. It is a good article and may help some of you, especially with family and friends who ask about it. It is a very touchy subject lately.

Send in any questions you have to keeths@mac.com

peace, Keith

American RSDHope

Let's end ignorance of CRPS!

BEGINNERS GUIDE TO CRPS

We have updated one of our more popular articles, "Beginners Guide To CRPS" on our website.

There is a little more information, more detailed, and probably better explained than the original version. It is a straightforward one page article that walks you through the website; explaining to first-timers, to both the disease and the website, what the disease is all about, the high points to hit for a better understanding of the disease, items of particular importance, and sections they definitely need to read in order to come to a better grip with the disease.

Some of the sections may be a little scary to the newly diagnosed but most find knowledge is key in this disease, seeing their symptoms come alive in front of them, knowing they aren't crazy, they aren't alone, and all the things they have been dealing with have a commonality.

Check it out and let us know what you think!

peace, Keith

American RSDHope

FDA ALERT FOR THE OXY FAMILY - JANUARY 2012

There is an important recall notice out regarding the Oxy family of medications, sent out by the FDA;

PUBLIC HEALTH ADVISORY

It involves the following medications;

Endo Pharmaceuticals Opiate Products by Novartis Consumer Health: Public Health Advisory - Potential Safety RiskIncluding the following products:

• Opana ER (oxymorphone hydrochloride) Extended-Release Tablets CII
• Opana (oxymorphone hydrochloride) CII
• Oxymorphone hydrochloride Tablets CII
• PERCOCET (oxycodone hydrochloride and acetaminophen USP) Tablets CII
• PERCODAN (oxycodone hydrochloride and aspirin, USP) Tablets CII
• ENDOCET (oxycodone hydrochloride and acetaminophen USP) Tablets CII
• ENDODAN (oxycodone hydrochloride and aspirin, USP) Tablets CII
• MORPHINE SULFATE Extended-Release Tablets CII
• ZYDONE (hydrocodone bitartrate/acetaminophen tablets, USP) CIII

For more details please click on the link above.

Peace, Keith

American RSDHope

CRPS and surgery

There is a new article regarding CRPS and surgery on our website;

CRPS and Surgery

in case you ever have that question tossed at you, for yourself or a loved one. It is a question we have been getting asked a lot lately so we thought we should post something about it!

Keith