Thursday, February 2, 2012
There was a new article published recently on Fibro.
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!
Wednesday, February 1, 2012
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.
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.
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.