This is a question we get quite often at American RSDHope. Unfortunately it is a question that we also don't get often enough because they got answers themselves by going to various websites on the internet that purported themselves as "RSD" or "CRPS Informational websites".
Some of you are saying "Huh???"
Here is what I am saying.
There are two national non-profit organizations who have dedicated themselves for decades solely to helping RSD and now CRPS patients and their loved ones, as well as the Medical Community and the general public, better understand this horrific and extremely complicated disease; the American RSDHope Organization ( www.RSDHope.org ) ; and the RSDSA ( www.rsdsa.org ).
These two organizations, which often work together, have a ton of information on their websites dedicated solely to the disease of Complex Regional Pain Syndrome. They have it checked by physicians whose speciality is chronic pain, they work with physicians around the USA as well as other countries constantly to keep the information as up to date as possible. That is very, very important with CRPs because it is a very fast-moving disease. I don't mean the disease itself spreads quickly, I mean what we know about the disease has progressed rapidly over the last two decades, and even the last five years, especially.
Many CRPS patients, most probably, seem to fit into what is known as the "Type A" personality category. That means they are very aggressive in their approach to life. They don't tend to be couch potatoes, they are much more likely to say, "Ok, I have what? RSD? CRP-what? Ok. never mind. I will find information on it myself", and off they go in a never-ending quest on the internet through all hours of the night in search of every last scrap of information they can find on the disease. They also tend to want to share EVERY SINGLE piece of it, every article and tidbit, with anyone who is within earshot or email range.
Normally you would say, "What's wrong with that? We should educate ourselves about our disease right?"Yes. normally you should. But CRPS is special. And not in a Saturday Night Live Dana Carvey Church Lady "Isn't that Special?" sort of way. (any of you youngin's out there who don't recognize that gem need to google Dana Carvey's old Church lady bits.
I won't go into it too much because so many people have read and heard me rail on this subject many times and I don't want you tuning me out here. But the bottom line, quick and dirty; far too many websites out there have out of date or just plain wrong information on their websites in a bid to help their fellow patients deal with this disease.
They mean well, I know that. I don't want to discourage them from wanting to help, just do it in another way. For medical information please direct them to one of the two national CRPS organizations, we have to stay updated, we have people for that. If someone comes to your website for help and they read something on a website you wrote that is no longer true, or something you may have copied from another website that is out of date, etc. With this disease folks, using outdated information, performing the wrong treatment, or the right treatment at the wrong time (too soon in the diagnosis or too late) could really cause serious problems.
Perhaps you visit a website that talks about physical therapy. Seems harmless right? After all, it is very important to know how much you can move, or not right? So what do you do? Protect the affected limb? Put it in a boot? A cast? Swim? Walk on it to keep the ROM alive? Don't walk on it or the swelling will increase?
What about ice? Maybe ice it down to bring down the swelling? But others say NOOO , don't use ice? Which is it? The answer for ice is if you use ice on the CRPS-affected limb you can not only possibly accelerate the disease but you run the risk of making the disease spread as well. There also exists the possibility of sending the CRPS even more quickly through the first or second stage and into the third.
Shouldn't my Physical Therapist know what to do? The answer is yes but not all of them know the correct treatment for CRPS. Most do but some still have not become educated on the correct things to do, and what not to do. The information is all out there for the taking on both national websites, all they have to do is visit them. There are videos for the therapists to view and/or download, informational brochures, articles, and they can even talk directly to the people in either organizations office if they have any questions.
What about Doctors? What kind of Doctors treat this disease? Again, answers are right on both RSDHope's and the RSDSA's websites.
Signs? Symptoms? Treatments? Medications? Latest new therapies? Both websites and any questions you can call and/or email both organizations.
The reason I am writing this article AGAIN is from time to time I peruse the internet, when I am up late at night. Many CRPS/chronic pain patients suffer from insomnia, like myself. I google CRPS or versions of it and find websites and look for mistakes. Not for "aha moments! or "gotcha! moments", but in the hope that we can correct them and encourage them to instead simply have them send people to our website or the RSDSA's website. I am always saddened by the amount of incorrect information out there, oftentimes masquerading as medical fact on one news website or another.
I read one tonight that purported to be heavy on research on the brain and CRPS but it was chock full of inaccuracies. It didn't even have HOW people can get the disease right! Didn't even have the definitions of CRPS Type I and Type II correct ! It was even written, put together, in the last year.
It makes me angry, yes, because people can get hurt by reading and following the information contained in these websites. They can ruin people's lives, change them permanently!!!! This is a bad enough disease as it is without hurting them after the fact with incorrect information regarding blocks, physical therapy, SSDisability, medications, and even Doctors.
Please everyone, if you are a CRPS patient, think you might be, have someone you love who is or might be, send them or go yourself to American RSDHope's website www.RSDHope.org or the RSDSA's website www.rsdsa.org and get the correct information right off the bat.
CRPS Description, definition, stages, how is it diagnosed, differences between Type I and Type II, CRPS awareness, the national CRPS Awareness Ribbon, CRPS videos and audios, treatments, ketamine, HBOT, medications, terminology, FAQ's, SSDisability, Support groups, links, articles, info for loved ones, and so so much more.
any questions please always feel free to email me directly
peace to you all;
Keith
American RSDHope
www.RSDHope.org
rsdhope@mac.org
Tuesday, June 18, 2013
Thursday, March 28, 2013
CRPS Brochures available and new CRPS Bracelets
CRPS AWARENESS BROCHURE ALL NEW APRIL 2013
New and updated CRPS informational brochure is now available on American RSDHope's website.
We totally re-designed the CRPS / RSD brochure in March 2013, put it on glossy white card stock, the National CRPS Awareness Ribbon is poppin' on the cover, and if you get some to place in your Doctor's office or local hospital they are sure to catch people's eyes!
The first ones will be mailed out on April 1st, no joke! We will be sending 20 FREE copies to every CRPS/RSD Support Group we have listed on our website to help them get started on getting the word out. That is ONE THOUSAND CRPS BROCHURES hitting the streets right off the bat!
NEW CRPS AWARENESS BRACELET!
We have also added a brand new CRPS Awareness Bracelet designed by the PuraVida company! It is a very pretty bracelet that shows all the colors of the National Awareness CRPS Ribbon. You can read all about it and even order your own, for only $5, by VISITING HERE!
We have made a lot of changes to the website in many different palces as well.
AMERICAN RSDHOPE LAUNCHES THEIR FACEBOOK PAGE!
Have you visited American RSDHope's FaceBook page yet? It isn't a huge, glossy, amazing page by any stretch of the imagination. We didn't want to take the time away from the work we do on the main RSDHope website, but what it IS and how it can benefit you to visit it and LIKE our page, is because what we do there is send out updates.
Whenever we update the website, add new sections, update existing sections, put out information (such as the info above), put out a notice such as the upcoming RSDSA conference, we put that notice out on FB as well. So while we encourage you to drop by our main website as often as possible to increase your knowledge of this disease (there is so much to learn), it is a great addition to have the FB page "liked" so you stay current on additions to the site.
That's all for now guys,
I won't promise I will try to post more often because I keep doing that and then don't follow through. As someone in the movies once said; there is doing and not doing, there is no try.
Peace and freedom from pain, it is all we seek;
Keith
American RSDHope
New and updated CRPS informational brochure is now available on American RSDHope's website.
We totally re-designed the CRPS / RSD brochure in March 2013, put it on glossy white card stock, the National CRPS Awareness Ribbon is poppin' on the cover, and if you get some to place in your Doctor's office or local hospital they are sure to catch people's eyes!
The first ones will be mailed out on April 1st, no joke! We will be sending 20 FREE copies to every CRPS/RSD Support Group we have listed on our website to help them get started on getting the word out. That is ONE THOUSAND CRPS BROCHURES hitting the streets right off the bat!
NEW CRPS AWARENESS BRACELET!
We have also added a brand new CRPS Awareness Bracelet designed by the PuraVida company! It is a very pretty bracelet that shows all the colors of the National Awareness CRPS Ribbon. You can read all about it and even order your own, for only $5, by VISITING HERE!
We have made a lot of changes to the website in many different palces as well.
AMERICAN RSDHOPE LAUNCHES THEIR FACEBOOK PAGE!
Have you visited American RSDHope's FaceBook page yet? It isn't a huge, glossy, amazing page by any stretch of the imagination. We didn't want to take the time away from the work we do on the main RSDHope website, but what it IS and how it can benefit you to visit it and LIKE our page, is because what we do there is send out updates.
Whenever we update the website, add new sections, update existing sections, put out information (such as the info above), put out a notice such as the upcoming RSDSA conference, we put that notice out on FB as well. So while we encourage you to drop by our main website as often as possible to increase your knowledge of this disease (there is so much to learn), it is a great addition to have the FB page "liked" so you stay current on additions to the site.
That's all for now guys,
I won't promise I will try to post more often because I keep doing that and then don't follow through. As someone in the movies once said; there is doing and not doing, there is no try.
Peace and freedom from pain, it is all we seek;
Keith
American RSDHope
Monday, December 10, 2012
CRPS Thanksgiving stress and Increased pain Levels - Is there a correlation ?
CRPS patients often ask me why their pain levels seem to increase around holiday times.
Not just for the few hours that that their dear loved ones are visiting you and sharing their very favorite "home remedies" that they are sure will "cure you" of all their "supposed pain issues" because; "they too once had real bad pain so they know exactly what you are going through".
Sound familiar? Have you been given the list of home remedies from the family? Sure to cure your chronic pain? Maybe even a list of names of their favorite Doctors?
Or maybe you had the always fun conversation that starts out, "I know a guy who had the exact same thing as you and he went to this guy and he was cured in a New York minute", and the next thing you know five people in the room are all loudly discussing your situation and trying to figure out the names of the "two guys", the one who was miraculously cured and the amazing healer.
Holiday gatherings can be difficult places to be for chronic pain patients for a number of reasons, the ones listed above are just a few. There are also;
1) The problems that come with your not being able to eat certain foods because they make your pain worse, they interact with your medications, or perhaps because of your pain, medication side effects, etc., you just have no desire to eat. Trying to explain, or even having to explain, any of the above can be stressful, difficult, and frankly just something you are tired of having to explain.
2) The stress of a typical gathering of relatives at holiday time can be high for a "normal" person, a healthy person; extra people in the house, people are tired from traveling, not getting enough sleep, too many people in too small a space, old grudges always seem to surface, and this large group of people who would not normally gather together were it not for the fact that they happened to be born into the same family, can drive everyone's stress level through the roof. But for someone living with CRPS stress can be a serious pain trigger.
High levels of stress trigger the body's fight or flight response. Basically our brains are hard-wired with this response to protect ourselves from harm. When this bodily reaction is triggered, it initiates a sequence of nerve cell firing and chemicals (like adrenaline) in preparation for our body to Fight or Run. Here is where things get problematic. Our brain gets a little one-way, seeing everything as a potential threat. Our bodies undergo changes as well,
There is overwhelming evidence that over-activation of our fight-flight response can lead to disorders of the autonomic nervous system because we cannot fight, we cannot flee, and it all leads to an cumulative build-up of stress hormones.
How does this relate to the symptoms of CRPS? Check that out on American RSDHope's CRPS Symptoms Page The fourth main symptom CRPS patients deal with involves the Limbic system;
Insomnia & Emotional Disturbance.
Is there a way to be aware of the build-up ahead of time? To educate ourselves when our bodies are "gearing up" so to speak for an over activation of the response? If so, what do we look for?
According to Doctor Neil Neimark at the Mind Body Education Center, yes, there are clues to look for, symptoms that you should be aware of. They are;
Physical symptoms like tension in our muscles, headache, upset stomach, racing heartbeat, deep sighing or shallow breathing.
Others may experience them as emotional or psychological symptoms such as anxiety, poor concentration, depression, hopelessness, frustration, anger, sadness or fear.
Excess stress does not always show up as the "feeling" of being stressed. Many stresses go directly into our physical body and may only be recognized by the physical symptoms we manifest. Two excellent examples of stress induced conditions are "eye twitching" and "teeth-grinding." Conversely, we may "feel" lots of emotional stress in our emotional body and have very few physical symptoms or signs in our body.
(information from The Mind Body Education Center)
So now that we are aware of what to look for, know the type of situations that we might find ourselves in that can bring out the stress in ourselves (based on past personal experience), what can we do once we have triggered these responses? To quiet our bodies back down? To lower our stress level and thereby lower our pain level? Does it take hours? Days? Weeks? Do we have to remove ourselves from the situation entirely or can we just go to a quiet corner for a few moments and utter Kramers "Serenity Now" chant a few hundred times and we're good?
end or part one -
Monday, October 8, 2012
Cervical Nerve Block - what a pain in the neck
Ok, that was bad. But so is the pain.
I have been dealing with incredible neck, shoulder, back, and arm pain for months now. One reason, the main reason, I have not made more posts here. I have not spent much time on-line anywhere, not here or on the website. My answers to emails have been as short as I could make them. The pain of doing anything with my arms has been excruciating. probably should use shorter words too. Guess using long words comes from all those college term papers where you had to fill up so many pages and using long words helped immensely.
So, what did we do to try and solve this conundrum? (hard to break the habit, sorry).
What all of your Drs have done in the past I am sure, you will recognize the theme, most insurance companies require it anyway. Music please!
Doc, I really think I need an MRI.
Passive therapy first please. Let's start there.
Ok. But then can we do an MRI?
We'll see. (the most dreaded words any child, and then any husband, wants to hear. We all know what they really mean).
Go to PT and learn new exercises, some there, some more to take home.
Pain continues. I suggest to the therapist that she send in her report early and maybe suggest 1) MRI and 2) aqua therapy. She agrees and does.
Next appointment. How is the pain? Same, maybe a little worse. Did you get the PT's report? Yes. Can we do the MRI? Not yet, but try the aqua therapy.
We try the aqua therapy. I happened to hit my foot in the meantime, trying to avoid my cat in the house, stub my foot, it sets off a nasty CRPS flare. I sure hate this darn disease. The aqua therapy doesn't help the neck/shoulder/arm pain but does calm down the CRPS flare in the foot/lower leg. yeah!
back to Dr. How is pain? worse. Can we do MRI? Yes. Three months down the road now. I hate insurance companies. I know he had to wait, to show we tried other things before we did MRI.
Now we wait for ten days for insurance company to approve MRI. Finally do. have MRI. Then we wait for three weeks for appointment to review MRI and maybe do epidural cervical block.
How many months now? argggh.
ok. So on Wednesday I had my appointment for the review/block. Keith, the good news is that you don't have a new herniated disc in your neck. yeah! The bad news is that what it IS is, cervical spondylosis , also called arthritis of the neck. He said, in some people it is not an issue. Many people can have the same looking MRI at this age and not have a problem. Others, like you, can have severe pain, or flare-ups, from time to time.
Um ok. Four+ months of lots of pain. Lots! neck, shoulders (both), arms (both). He said that we needed to do an epidural cervical block. Not a big deal he said, just like the one we did in your back a few months back (I need one in my back about once every 9 or 10 months for the disc issues there). Except the last one took a long time to recover from for some reason. Not sure if it was the different medication used or just age or some other reason. But I have had blocks of many types in many areas over the years; back, lower, middle, many of them; back of head (for migraines); heck, even right in the eye before my corneal transplant! So I am used to injections. Then he said, plus we will need to get you back here in three weeks for two more to really put this thing to bed. Fine by me, whatever it takes to stop this pain.
I am used to the CRPS pain by now, the level I have been having anyway for the last few years, even the back pain level, and all the other pain issues. It is the flares of the pain problems that seem to kick my butt because they seem to rile up everything else as well. it is kind of like living in a house full of animals, or probably kids. If everyone is calm and quiet it isn't too bad, even if there are a lot of them. But if one starts getting loud, then everyone starts getting loud. Pretty soon there is all kinds of noise going on and it is hard to get everything calmed down again.
So my pain right now is about a 9.5 and it is usually an 8 or so. An 8 for a chronic pain patient. That isn't too bad. You chronic pain patients out there understand me when I say there is a BIG difference between an 8 and even a 9 and a huge difference between a 9 and a 9.5. I rarely say I am having a 10 day because I know there is nothing above that.
(this is why we are with the group of individuals and organizations that is working on trying to develop a new pain scale for chronic pain patients that will be used across the country, the current one simply does not apply to CP patients. It is really just laughable to apply to us).
BUT, here is the issue. The nurse who starts the IV line (something that is covered, I assume, in month one of nursing school) can't get it started and decides she is going to have the plastic needle thing go and visit every square mm of space inside of arm possible looking for the vein she missed, despite my repeated cries of pain. I finally convince her to take it out. I think it was the third "Take it out!" that did it. I had explained to her, before she started, that I had CRPS, RSD, and that she had to be very careful when finding the vein and starting the IV, use the smallest needle possible, and please be gentle. I said the veins tend to move and disappear. I said you might want to use the hand area instead. ok. Nope.
It was the second time in two months I ended up with a baseball size bruise due to this process. I explained to her and the staff and the Dr that venipuncture CRPS is the most painful form of CRPS that exists and it starts due to getting stuck with a needle giving blood or starting an IV!
Makes me nervous about the next time but I will do two things. I will bring in an article about venipuncture CRPS and I will make sure they have the most experienced nurse on the floor, or the Dr, do the IV line this time. I am also going to go in this week and share the same article. I already wrote the clinic about it and talked to them on the phone about it. They were very nice and knew about the issue already. I know some may think I am being a pain in the ass about it and I am not trying to get that nurse in trouble for it, but I don't want a new CRPS site or flare, nor do I want some unknowing person to end up with this crappy disease because someone does not know how to put in an IV line anymore. There are enough CRPS patients already darn it. Let them be pissed off at me if that is what it takes to stop one more person from getting this disease.
Well, it is almost a week later and I don't feel much better but the Doc said it might be three weeks before I felt much effect from the block. Great.
Ok for now. Hopefully the months of August and September were much better for you guys!
remember, November is coming! NOVEMBER IS CRPS AWARENESS MONTH!
Check out the website to see what is coming up for awareness. If you have something to post, some event, send it on in to RSDHope and we will post it there. A fundraiser, run, walk, etc. send it in. If you had one, send us the pictures and we will post it. Doesn't matter who you raised the money for, as long as it was raised for CRPS Awareness, let us share it with the CRPS Community.
Have a great CRPS Video you shared on youtube? Send us the link and your permission and we will out it into consideration for placement on our video/audio awareness page!
Want a copy of the National CRPS Awareness Ribbon for your Facebook page? Check it out!
or how about one of the new National CRPS Awareness Ribbon Pins! only $2 each or less if you buy them in quantity or for a fundraiser! or how about a CRPS Awareness Magnet for your car or truck!
I will close for now.
Have a good day folks. Sleep for me and for others who don't!
peace,
Keith
American RSDHope
www.rsdhope.org
I have been dealing with incredible neck, shoulder, back, and arm pain for months now. One reason, the main reason, I have not made more posts here. I have not spent much time on-line anywhere, not here or on the website. My answers to emails have been as short as I could make them. The pain of doing anything with my arms has been excruciating. probably should use shorter words too. Guess using long words comes from all those college term papers where you had to fill up so many pages and using long words helped immensely.
So, what did we do to try and solve this conundrum? (hard to break the habit, sorry).
What all of your Drs have done in the past I am sure, you will recognize the theme, most insurance companies require it anyway. Music please!
Doc, I really think I need an MRI.
Passive therapy first please. Let's start there.
Ok. But then can we do an MRI?
We'll see. (the most dreaded words any child, and then any husband, wants to hear. We all know what they really mean).
Go to PT and learn new exercises, some there, some more to take home.
Pain continues. I suggest to the therapist that she send in her report early and maybe suggest 1) MRI and 2) aqua therapy. She agrees and does.
Next appointment. How is the pain? Same, maybe a little worse. Did you get the PT's report? Yes. Can we do the MRI? Not yet, but try the aqua therapy.
We try the aqua therapy. I happened to hit my foot in the meantime, trying to avoid my cat in the house, stub my foot, it sets off a nasty CRPS flare. I sure hate this darn disease. The aqua therapy doesn't help the neck/shoulder/arm pain but does calm down the CRPS flare in the foot/lower leg. yeah!
back to Dr. How is pain? worse. Can we do MRI? Yes. Three months down the road now. I hate insurance companies. I know he had to wait, to show we tried other things before we did MRI.
Now we wait for ten days for insurance company to approve MRI. Finally do. have MRI. Then we wait for three weeks for appointment to review MRI and maybe do epidural cervical block.
How many months now? argggh.
ok. So on Wednesday I had my appointment for the review/block. Keith, the good news is that you don't have a new herniated disc in your neck. yeah! The bad news is that what it IS is, cervical spondylosis , also called arthritis of the neck. He said, in some people it is not an issue. Many people can have the same looking MRI at this age and not have a problem. Others, like you, can have severe pain, or flare-ups, from time to time.
Um ok. Four+ months of lots of pain. Lots! neck, shoulders (both), arms (both). He said that we needed to do an epidural cervical block. Not a big deal he said, just like the one we did in your back a few months back (I need one in my back about once every 9 or 10 months for the disc issues there). Except the last one took a long time to recover from for some reason. Not sure if it was the different medication used or just age or some other reason. But I have had blocks of many types in many areas over the years; back, lower, middle, many of them; back of head (for migraines); heck, even right in the eye before my corneal transplant! So I am used to injections. Then he said, plus we will need to get you back here in three weeks for two more to really put this thing to bed. Fine by me, whatever it takes to stop this pain.
I am used to the CRPS pain by now, the level I have been having anyway for the last few years, even the back pain level, and all the other pain issues. It is the flares of the pain problems that seem to kick my butt because they seem to rile up everything else as well. it is kind of like living in a house full of animals, or probably kids. If everyone is calm and quiet it isn't too bad, even if there are a lot of them. But if one starts getting loud, then everyone starts getting loud. Pretty soon there is all kinds of noise going on and it is hard to get everything calmed down again.
So my pain right now is about a 9.5 and it is usually an 8 or so. An 8 for a chronic pain patient. That isn't too bad. You chronic pain patients out there understand me when I say there is a BIG difference between an 8 and even a 9 and a huge difference between a 9 and a 9.5. I rarely say I am having a 10 day because I know there is nothing above that.
(this is why we are with the group of individuals and organizations that is working on trying to develop a new pain scale for chronic pain patients that will be used across the country, the current one simply does not apply to CP patients. It is really just laughable to apply to us).
BUT, here is the issue. The nurse who starts the IV line (something that is covered, I assume, in month one of nursing school) can't get it started and decides she is going to have the plastic needle thing go and visit every square mm of space inside of arm possible looking for the vein she missed, despite my repeated cries of pain. I finally convince her to take it out. I think it was the third "Take it out!" that did it. I had explained to her, before she started, that I had CRPS, RSD, and that she had to be very careful when finding the vein and starting the IV, use the smallest needle possible, and please be gentle. I said the veins tend to move and disappear. I said you might want to use the hand area instead. ok. Nope.
It was the second time in two months I ended up with a baseball size bruise due to this process. I explained to her and the staff and the Dr that venipuncture CRPS is the most painful form of CRPS that exists and it starts due to getting stuck with a needle giving blood or starting an IV!
Makes me nervous about the next time but I will do two things. I will bring in an article about venipuncture CRPS and I will make sure they have the most experienced nurse on the floor, or the Dr, do the IV line this time. I am also going to go in this week and share the same article. I already wrote the clinic about it and talked to them on the phone about it. They were very nice and knew about the issue already. I know some may think I am being a pain in the ass about it and I am not trying to get that nurse in trouble for it, but I don't want a new CRPS site or flare, nor do I want some unknowing person to end up with this crappy disease because someone does not know how to put in an IV line anymore. There are enough CRPS patients already darn it. Let them be pissed off at me if that is what it takes to stop one more person from getting this disease.
Well, it is almost a week later and I don't feel much better but the Doc said it might be three weeks before I felt much effect from the block. Great.
Ok for now. Hopefully the months of August and September were much better for you guys!
remember, November is coming! NOVEMBER IS CRPS AWARENESS MONTH!
Check out the website to see what is coming up for awareness. If you have something to post, some event, send it on in to RSDHope and we will post it there. A fundraiser, run, walk, etc. send it in. If you had one, send us the pictures and we will post it. Doesn't matter who you raised the money for, as long as it was raised for CRPS Awareness, let us share it with the CRPS Community.
Have a great CRPS Video you shared on youtube? Send us the link and your permission and we will out it into consideration for placement on our video/audio awareness page!
Want a copy of the National CRPS Awareness Ribbon for your Facebook page? Check it out!
or how about one of the new National CRPS Awareness Ribbon Pins! only $2 each or less if you buy them in quantity or for a fundraiser! or how about a CRPS Awareness Magnet for your car or truck!
I will close for now.
Have a good day folks. Sleep for me and for others who don't!
peace,
Keith
American RSDHope
www.rsdhope.org
Sunday, September 2, 2012
CRPS RSD and Nerve Blocks - Do they work? How quickly should they be done?
AH YES, WHAT A TITLE !
I know, we just did this one didn't we? Seems like it but looking back it has been a while. I guess it is because we talk about it a lot on the RSDHope Teen Corner and I get asked the question a lot by patients and loved ones who email us through our Contact US form at American RSDHope.
It is a very important question for CRPS patients
But it seems there are too many Drs out there who still haven't gotten the message. One Doctor who hasn't gotten the message is far too many in my mind.
Now before I start getting cards and letters, yes, I know. There are tons of wonderful Anesthesiologists who know exactly what they are doing when it comes to sympathetic nerve blocks (I always wanted to say that, like Jay Leno, the cards and letters thing, not the Anesthesiologists thing) . I realize that. But you would be shocked if I told you how often we hear from patients who are not even counseled about blocks, not even told they should consider them until it is too late.
BLOCKS BLOCKS BLOCKS!!!!!!
Ok, here it is.
READ THE ARTICLE ON BLOCKS!
Read the article that discusses CAN THERE BE PROBLEMS WITH A BLOCK?, I have to add a new part after reading a new email I got today.
Also read the article that is at the bottom of that page SMP AND IMP, WHAT IS THE DIFFERENCE? This is very very important. Did I say it was important? Let me say that again. It is very, very important!
It is also key to understanding the following questions we get asked a lot.
1) Is there a certain time period for getting sympathetic nerve blocks?
In other words, is there a point in time after my injury, when my CRPS has started, that the sympathetic blocks will most likely no longer work? Or a time when they will be more helpful than another time? If so, what is it? Is it measured in weeks? Months?
Answer - yes and no. A time limit? Not really. You can get nerve blocks anytime and for a number of different reasons. They can help pain patients, and others, for a wide variety of reasons. We are only going to be addressing CRPS patients in this article and mainly focusing on the importance of early treatment with sympathetic nerve blocks.
So, is there a time when those sympathetic nerve blocks will be most effective? That is probably a better way to word the question.
Yes. The accepted wisdom is that if a patient is treated with sympathetic nerve blocks within the first 6-9 months they stand the best chance of putting the disease into remission, 12 months at the outside. This is the prime-time for treatment, the best window for attacking this disease. The younger the patient the better. That means post-onset of symptoms, not since diagnosis obviously. This can sometimes be a problem since it is not always easy to pinpoint when exactly the symptoms began since the symptoms of CRPS can sometimes be quite bizarre.
There are exceptions of course, like with everything else associated with this disease, or to put it another way, there are no absolutes, so blocks are tried long after that 12 month window.
- Again, see - "SMP and IMP, What is the Difference?" and "Can There Be Problems With a Block?"
Now, having said that, does that mean that Drs do not give CRPS patients sympathetic nerve blocks after the 12 month window? No. of course not. Because there is always a chance they will still work. Maybe a little, maybe a lot. it is a difficult disease to pin down and pin down absolutely. We have to work in generalizations. It is why it can be a very frustrating disease for Drs as well as patients.
It might help one patient in stage one, but not in stage two, you might show certain symptoms in stage two but not stage three, and vice versa. This is why WC and SSD cases are frustrating. Your symptoms may/may not be visible or as visible depending on the stage you are in or even the time of day, time of month, time of year, and a million other factors. Something to take into consideration when you are making your Drs appointments, try to make them at different times of day each time you go, that way if you are one of those patients whose symptoms vary as the day goes along, like most of us, the Dr gets to see that.
2) Is there a typical number of sympathetic nerve blocks that are given?
Do they usually just give one, or three? Should I stop if the first one doesn't work?
Answer - Usually they are given in a series of one to three, or three to five, depending on the Doctor or Clinic.
However, we still get a number of patients write to us who say their Dr has given them twenty or more sympathetic blocks, yet they still have a lot of pain. WHAT???!!! Is always my response. HUH????? How many?
I remember going to a conference for CRPS patients, actually it was still called RSD back then in 1995, and I was listening to Dr Hooshang Hooshmand speak. He was taking questions from the audience. I don't know how many of you got to hear him speak but he was a hoot and a holler. (for you city folk that means he was funny) He was always aghast at the incompetence of other Drs. I remember he had just finished talking about sympathetic nerve blocks and that after three blocks if they haven't worked by then, the chances of them helping you was pretty slim and after 12 months it was pretty much nil especially if the first three didn't work.
One patient raised her hand and said "My Dr says you can keep giving the blocks as long as you want. I have gotten over 100 nerve blocks in the last three years." She had this smug little look on her face like she had proven Dr Hooshmand wrong. He just stared at her for a few minutes. You could have heard a pin drop. Everyone was looking back and forth between her and him. She was sitting in a wheelchair near the front.
He finally said "When did he tell you he thought they might start working? 125, 150, 175 blocks?"
She just sat there and looked at him, didn't know how to respond. No one said anything, not sure if he was serious or making a joke. I thought it was a hilarious response. But now, having heard quite a few other patients tell me their Dr has given them over 100 nerve blocks, I wonder if this is the same guy!
c'mon people! Wake up! I feel we need to make a poster for this possibility; "Don't let this happen to you!" and have a person with CRPS sitting in a clinic room lying on their stomach, beside a fluoroscope and on the table are 100 used syringes.
Fortunately it isn't as common as it used to be but there are still a few Drs out there who seem to do far too many sympathetic nerve blocks, in the twenties and above , when they are not helping at all! If they were helping the patient, that would be something else entirely, and if you are getting some from your Dr., a type of block and they are helping we certainly are not suggesting that you stop. Maybe it is a different type and/or for a different medical issue. There are many CRPS patients who develop other medical problems along the way; fibromyalgia or CFIDS for example. Many have also gotten into MVA's initially and developed CRPS as a result so they have significant injuries from that accident and may have back issues and they receive ongoing blocks of one type or another that help them.
Hey, if you get blocks and are in less pain, fantastic.
But ....
Listen, if the first ten aren't working, what makes you think the second ten will help? Or the second set of five if the first set of five didn't?
The way sympathetic nerve blocks are supposed to work is they build in success. Think of it like the crescendo at the end of a movie or a concert or a opera or a big drum solo or whatever you can relate to based on your age and music tastes.
The music/drums starts out slowly
(first block a little relief, maybe hours, perhaps a day or longer),
then builds a little more, little louder now
(second block a little more relief, instead of a day maybe you get a week or two of relief)
louder still, you can feel the ground start to shake
(third block really gives relief, instead of week or two maybe longer, 3 weeks or more)
So, if these three work one of two things will happen next.
1) The CRPS will start to recede and the Dr will wait before doing another block, to see what will happen. See if maybe it will go away on its own. The less times you inject the body, subject the body to a needle, the better. (one of the most painful forms of CRPS is called Venipuncture CRPS caused by a needle, it can even be caused by giving blood).
or
2) The Dr will try a fourth block to see if you can get even longer relief.
HOWEVER, if the Dr, (typically an Anesthesiologist does these types of blocks by the way), does not get these types of results from the first blocks, a CRPS-skilled physician usually stops there. It depends on how long you have had CRPS, how far out from the initial injury you are (they work best within the first 6-9 months but definitely within the first 12 months is key).
If you have not gotten any relief from the blocks, from any of them, if you showed little or no response (warmth in the extremity , either hand or foot), and very little pain relief from them, and yet the Dr is still doing them, 3, 4, 5 blocks down the road, start questioning him. Why are we still doing them???
Again, look at the article on SMP and IMP here.
Remember that your Doctor is part of your healthcare team and you are the captain. It is ok for you to question any play call. If you don't understand something, ASK! Not sure why a treatment is being done? Ask! Not sure why a particular medication is being prescribed or what it is supposed to do? Ask! Not sure why the blocks aren't working and/or why we are still doing more? Ask! Not sure what will happen next in the treatment plan if this step doesn't work? Ask!
If your current Doctor doesn't like to discuss these things with you, believes he doesn't need to, then you need to replace that particular player on your team and find another Doctor. There are plenty of amazing Doctors out there who are team players. You might be surprised how many there are who are willing to work with you, who are actually eager to have a patient who is interested in being a part of the treatment plan. Even if they are not currently the most educated in the disease don't let that stop you, they might be willing to learn. Some of the best Drs I have ever had over the last four decades battling this disease have been the ones who did On-The-Job-Training. They did not mind my bringing in information from the internet as long as it was from a reputable source, talking with me about the disease, our plan to battle it, and I truly felt a partner in it. It makes a huge difference in how you approach it.
3) How does a block actually work? What is entailed in one?
Answer - There is a good link here that illustrates a lumbar sympathetic block from Spine Universe. It is an excellent website and has wonderful information on a wide variety of topics, especially injections. This gives you a good idea of how blocks work.
You can visit one of their other pages if you want to get an overall view of a vast variety of INJECTIONS including some of the other types that would be given to CRPS patients.
Hope some of this information was helpful to you. We know that dealing with CRPS can be very difficult at the least but confusing at the most. The American RSDHope website was designed to try and help patients, loved ones, and medical professionals steer through the maze of this disease and not only better understand it but also better understand the patients who live with it 24/7.
Peace and freedom from pain, it is all we seek.
Keith - 38 year systemic CRPS survivor
I am not a medical professional of any kind, just a fellow patient and the information I share is not intended to replace any that your Dr has given you. Do not stop or start any treatment or medication that your Dr has given you or started you on without first consulting with your Physician.
Sunday, August 26, 2012
Pain Scales - Useful Tools or just Tools? Needs to be updated.
I always chuckle when i meet with a new Doctor and they ask me what my pain level is today on a scale of 1 - 10. Seriously?
Ok, Which Pain? CRPS pain? Fibro pain? Back pain? Eye pain?
And you don't mean ALL the symptoms correct? Not the individual symptoms like exhaustion, fatigue (very different things, ask anyone with fibromyalgia or CFIDS), burning pain, allodynia, crushing, aching, squeezing, insomnia, etc. right?
Oh, and which pain scale? The pain scale for 1- the "normals", 2 - the people in acute pain, or 3 - the people in chronic pain?
And compared to who? You haven't seen me before. How do you know what my 7 is like, or my 8?
Is my 7 the same as Diane's? Or is Karen's 9 the same as Maxwell's 10 perhaps? They say that women can handle pain better than men. Is my 9 today of more importance than it might be three weeks from now after you started me on a new medication? But what if in three weeks the weather is different, or there is construction outside of my house all week, or a neighbor moved in with a barking dog, or I stubbed my toe the night before and am in a flare?
Herein lie the many problems associated with pain scales and yet you see them peppered throughout all sorts of medical studies, especially ones having to do with pain.
Simple pain scales, the 1-10 deals are archaic. They need to be updated, adjusted, modified for today's patient and for today's medical professional. It would help not only your pain management physician but also your physical therapist, psychiatrist, and pretty much anyone dealing with your pain; attorney, WC, SSD, etc. Especially if there was a single, across the board Chronic Pain Scale that everyone agreed on that addressed all aspects of a patients pain and not just a simple number.
I understand that there would still be some variations based on Drs and patients individual perceptions and possibly even some regional variations but it would be a huge improvement on what we have now.
There are Pain Conferences that occur usually ever year where pain management physicians gather and perhaps this issue could be addressed there?
What would you like to see included on a new Chronic Pain Scale? What things should your Dr ask you when inquiring about your pain? A typical chronic pain patient?
You will have to do your part as well. That may mean keeping better track of your symptoms and pain levels in between visits.
Average Pain over the last month?
Worst level during that time? Best level during that time?
What symptoms should be included? Aching? Crushing? Throbbing? Spasms? Shooting? Electrical feeling? Difficulty walking/standing/ Difficulty falling/staying asleep?
What about a picture?
One of the best Drs I ever had, had a wonderful pain chart and part of it had a series of faces. Picture a smiley face gradually changing to a very sad, painful face. Just as you filled in each of the other items; 1-10 rating of burning, aching, crushing, etc. you circled which of the five faces best fit your pain today. He also had on there two drawings of the human body; one facing front and one facing back. You had to fill in where you pain was, and if you liked you could use symbols. For instance I used x's for my CRPS pain and -- for my fibro pain, and then where my pain was worse I made it the darkest.
I am not saying this has to be the template, just an idea I am throwing out there as a possibility and to say that you can think outside the box.
So what do ya'll think?
Send your suggestions to me and I will put them in a future post here!
Peace, Keith
American RSDHope
Want your own jpeg of the ribbon for your Facebook page or website?
Ok, Which Pain? CRPS pain? Fibro pain? Back pain? Eye pain?
And you don't mean ALL the symptoms correct? Not the individual symptoms like exhaustion, fatigue (very different things, ask anyone with fibromyalgia or CFIDS), burning pain, allodynia, crushing, aching, squeezing, insomnia, etc. right?
Oh, and which pain scale? The pain scale for 1- the "normals", 2 - the people in acute pain, or 3 - the people in chronic pain?
And compared to who? You haven't seen me before. How do you know what my 7 is like, or my 8?
Is my 7 the same as Diane's? Or is Karen's 9 the same as Maxwell's 10 perhaps? They say that women can handle pain better than men. Is my 9 today of more importance than it might be three weeks from now after you started me on a new medication? But what if in three weeks the weather is different, or there is construction outside of my house all week, or a neighbor moved in with a barking dog, or I stubbed my toe the night before and am in a flare?
Herein lie the many problems associated with pain scales and yet you see them peppered throughout all sorts of medical studies, especially ones having to do with pain.
Simple pain scales, the 1-10 deals are archaic. They need to be updated, adjusted, modified for today's patient and for today's medical professional. It would help not only your pain management physician but also your physical therapist, psychiatrist, and pretty much anyone dealing with your pain; attorney, WC, SSD, etc. Especially if there was a single, across the board Chronic Pain Scale that everyone agreed on that addressed all aspects of a patients pain and not just a simple number.
I understand that there would still be some variations based on Drs and patients individual perceptions and possibly even some regional variations but it would be a huge improvement on what we have now.
There are Pain Conferences that occur usually ever year where pain management physicians gather and perhaps this issue could be addressed there?
What would you like to see included on a new Chronic Pain Scale? What things should your Dr ask you when inquiring about your pain? A typical chronic pain patient?
You will have to do your part as well. That may mean keeping better track of your symptoms and pain levels in between visits.
Average Pain over the last month?
Worst level during that time? Best level during that time?
What symptoms should be included? Aching? Crushing? Throbbing? Spasms? Shooting? Electrical feeling? Difficulty walking/standing/ Difficulty falling/staying asleep?
What about a picture?
One of the best Drs I ever had, had a wonderful pain chart and part of it had a series of faces. Picture a smiley face gradually changing to a very sad, painful face. Just as you filled in each of the other items; 1-10 rating of burning, aching, crushing, etc. you circled which of the five faces best fit your pain today. He also had on there two drawings of the human body; one facing front and one facing back. You had to fill in where you pain was, and if you liked you could use symbols. For instance I used x's for my CRPS pain and -- for my fibro pain, and then where my pain was worse I made it the darkest.
I am not saying this has to be the template, just an idea I am throwing out there as a possibility and to say that you can think outside the box.
So what do ya'll think?
Send your suggestions to me and I will put them in a future post here!
Peace, Keith
American RSDHope
 |
| National CRPS Awareness Ribbon |
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Or even to add to your daily emails? Contact American RSDHope here!
Monday, August 6, 2012
What was your week like? As a CRPS Patient like? Must be nice to sit around and do nothing all day huh? Argggggghhhh Sound familiar?
argggggggggg
Ok, this has been an interesting week.
Actually it has been an interesting summer. We spent most of it working with some amazing kids, tutoring them in reading. We signed on to this program as tutors, thinking we were going to be helping the people running the program. Instead, with the help of two other wonderful adults we ended up running the program, the four adult volunteers. Thank God for those two other adults! One of them was a professor of a nearby community college and he did a lot, knew most of the kids, and was such a nice guy. Think we made a real friend there. You never know what life will bring. The other volunteer was used to volunteering with Mission trips with her church so this was something new for her. The kids loved her, she was very sweet and even though she felt out of her depth, she was very effective with the kids she worked with.
The kids were so much fun. There is nothing so exciting as seeing the lights click in a child's eyes when it all starts making sense, when they see an adult tell them that anything is possible if they work hard, that they are smart enough. So many of them are told the opposite, a lot. Mostly at home. The one place where it should never be said.
We tried to give them two pieces of advice.
1) Knowledge is Power. If you learn to read, what you learn can never be taken away from you. People can take away your house, your job, your money, even your healthy can be taken from you. But they can never take away what you know.
2) You can accomplish anything. Don't let anyone tell you that you are less than you are.
Ok, well. That was our summer anyway. It was more stressful than we anticipated but in the end, it was about the kids and the last day of class we had them write a story of their own. Their own book. Anything they wanted. Started our rough. Not sure what to write. These were 2nd-6th graders after all and no one ever asked them to do such a thing before, no one was ever that interested in what they had to share.
But by the end of the hour we had stories ranging from a newly designed solar panel to make cars more efficient, to retail stores that would enable the owners to be successful enough to buy monster trucks to play with on the weekend, to one student who was going to build a series of underground houses, and much more. Like I said, amazing kids.
I have mentioned it here before I think and most certainly on the RSDHope website volunteer somewhere, anywhere, even if it is only for a few hours. It will help you, help others, and maybe change someone's life!
This reading program was only a little over an 90 minutes a day a few days a week. Even if it was a bad pain week, it was doable. And when you see what some of these kids deal with on a daily basis, you think, wow, they put up with a lot, and made it here just to try and get help to read. I can make it here for a short time to help them.
Ok. How did I get started with that?
Let me finish this tomorrow. I want to do a post on nerve blocks. It is important but I need to rest for a bit. I promise I will finish it.
------
Ok, it is now tomorrow.
Ahh, the magic of the internet. I bet you didn't even notice I was gone!
One of the problems, (yes there are more than one), with this disease called CRPS, or maybe it is the Fibromyalgia, or maybe it's the CFIDS, or, wait. Let's just go with the CRPS. One of the problems is it is simply exhausting. Just being in chronic pain 24/7 drains you. It saps the strength right out of you. When you add in the fact that because of the disease and/or its' side effects and the medications you take for it and their side effects the chance of getting any kind of quality or quantity sleep is out of the question for most of us.
Now throw in the physical therapy and exercise that a CRPS/chronic pain patient must do every day simply to stay at the same level where they currently are right now, I am not talking about doing extra PT or exercise to improve your condition, but rather the things we must do day in, day out just to maintain; add that in and you get even more tired.
Now for good measure throw in a few extracurricular activities. Nothing spectacular like climbing Mount Everest or bungee jumping or leaping out of an airplane or babysitting pre-schoolers. Let's not get crazy here. Maybe a movie with friends, church on Sunday, perhaps volunteering an hour a week a few weeks a month. Ok, now how tired are you?
Not done yet.
You still have Drs appointments, usually one or two a month. Calls to your Doctor, maybe one to your insurance company as well to straighten out some problem or another. Toss in two trips to the pharmacist, maybe three trips to the grocery store as well.
Just a reminder for all the "normals" out there. Love that word, "normals". Most, not all, but most CRPS patients suffer from allodynia and other symptoms. The simple medical definition of Allodynia is pain from things/stimuli which do not normally produce a painful reaction. It is an extreme hypersensitivity. What are some examples of things that can cause pain to us that would not normally cause pain?
wind - noise - change in temperature (especially cold) - ice - change in barometric pressure - touch (can be touch of a person, clothing on our skin, even our own hand touching another part of our body, sudden, surprise, light touches are almost always worse than firm touches we know are coming), vibration, water temperature (again, warm is much better than cold)
These are just some of many examples. Any CRPS patient can give you many, many more examples. Some patients may not even realize that this is part of the disease!
Then you add in the pain to all of this and you get an even better idea of how exhausting it can be simply to try and get through the week, month as a CRPS patient, or chronic pain patient.
What is the pain of CRPS like? Funny you should ask. I just happen to have aa link to an article that discusses just that! What does CRPS feel like?
The reason I decided to write this topic this week was that I have heard from a number of patients these past few months, some who were very desperate, whose loved ones felt that they were either playing the sympathy card, over-emphasizing their pain, over-acting in an effort to gain sympathy from the rest of the family; or from loved ones or family members , or even friends who told them that, and I quote here because the quote is almost always the same, "It must be nice to sit around all day and play video games. I wish I was on Disability!"
Now I know how these patients responded. Mostly with tears. They were heartbroken, that their loved ones, parents, siblings, and in two cases, husbands, felt this way. That they were simply sitting around enjoying being on disability, having this "little disease" so they could play video games.
I also know how I responded when I got these letters. I cannot repeat the words here that went through my head or came out of my mouth and it was fortunate that I was not present, live, in the room when these people said these things. As angry as I was, am, it also broke my heart for those patients, knowing the agony they endured, endure daily, and yet their very own loved ones still doubted their veracity; still doubted their suffering, still did not understand the agony of their everyday lives. How then would they be able to help them recover and move forward?
How do get across to these people what it is like to have this monster inside of you, have all of these strange and disturbing and bizarre symptoms going on at the same time and finally learn it is actually ONE disease, finally get the correct diagnosis, if you are lucky after only 3, 5, or 8 Doctors and then still have your loved ones not believe you!
So folks, what do I tell these patients? How do they convince their loved ones that life on SSD is not all peaches and cream and X-Box? That it is more than a full-time job to have a chronic illness, as described above; there is more than enough to keep you busy every day just to stay even with the disease and not lose any ground! That the pain we live with every minute of every day would probably turn that same person who thinks it is a cakewalk into a screaming, crying, help-me-please, huddled-in-a-corner mess inside of ten minutes?
Fortunately for them, we would never want our loved ones to ever truly know the extent of the agony we suffer, unendingly. It would break their hearts if they were able to actually plug-in to our bodies and feel it, even for a minute. So as much as we think "If only there was a way for my "Dr", Husband", "Parent", "WC Attorney", etc. , to be plugged into my pain, just for a few minutes to see what it was like, the reality is we do not want anyone else to feel what we feel.
But there has to be some way, doesn't there? Let's figure it out. Let me know your suggestions.
send them to me!
I will post the best answers in an upcoming post here.
In the meantime, please folks. Let us all just try and help each other. enough with the hate. Time for healing. Too many boundaries everywhere, for far too long.
Peace and freedom from pain, they are all we seek,
Keith Orsini
American RSDHope
PS - If you have not gotten your copy of the National CRPS Awareness Ribbon for your Facebook Page or website, personal or business! Help spread awareness!!! Send me an email, at the address above. We also have a smaller size of the ribbon for those who want to include it in the emails they send out to people all day long! We do not charge for this jpeg file of course. It is copyright protected though. But if you have something special you want to do with it, let us know. We might say yes and send you a permission form! Someone recently added it to their body as a tattoo! Another is going to use it for a fundraiser!
We will also soon have ceramic ribbons that we can share at cost, it will be the national ribbon, they look amazing! Get some for your support group, Facebook group, fundraiser, school, family, whatever. You can even get the awareness ribbon for your car! nearly ten thousand cars across the country are already showing their awareness for CRPS, and thousands of websites, Facebook pages, and emails are now starting to zip across the web with the ribbon on them. Join the wave!
Send an email to RSDHope and ask for the ribbon in the large size for the website or Facebook page or the smaller size for email, or both!
Ok, this has been an interesting week.
Actually it has been an interesting summer. We spent most of it working with some amazing kids, tutoring them in reading. We signed on to this program as tutors, thinking we were going to be helping the people running the program. Instead, with the help of two other wonderful adults we ended up running the program, the four adult volunteers. Thank God for those two other adults! One of them was a professor of a nearby community college and he did a lot, knew most of the kids, and was such a nice guy. Think we made a real friend there. You never know what life will bring. The other volunteer was used to volunteering with Mission trips with her church so this was something new for her. The kids loved her, she was very sweet and even though she felt out of her depth, she was very effective with the kids she worked with.
The kids were so much fun. There is nothing so exciting as seeing the lights click in a child's eyes when it all starts making sense, when they see an adult tell them that anything is possible if they work hard, that they are smart enough. So many of them are told the opposite, a lot. Mostly at home. The one place where it should never be said.
We tried to give them two pieces of advice.
1) Knowledge is Power. If you learn to read, what you learn can never be taken away from you. People can take away your house, your job, your money, even your healthy can be taken from you. But they can never take away what you know.
2) You can accomplish anything. Don't let anyone tell you that you are less than you are.
Ok, well. That was our summer anyway. It was more stressful than we anticipated but in the end, it was about the kids and the last day of class we had them write a story of their own. Their own book. Anything they wanted. Started our rough. Not sure what to write. These were 2nd-6th graders after all and no one ever asked them to do such a thing before, no one was ever that interested in what they had to share.
But by the end of the hour we had stories ranging from a newly designed solar panel to make cars more efficient, to retail stores that would enable the owners to be successful enough to buy monster trucks to play with on the weekend, to one student who was going to build a series of underground houses, and much more. Like I said, amazing kids.
I have mentioned it here before I think and most certainly on the RSDHope website volunteer somewhere, anywhere, even if it is only for a few hours. It will help you, help others, and maybe change someone's life!
This reading program was only a little over an 90 minutes a day a few days a week. Even if it was a bad pain week, it was doable. And when you see what some of these kids deal with on a daily basis, you think, wow, they put up with a lot, and made it here just to try and get help to read. I can make it here for a short time to help them.
Ok. How did I get started with that?
Let me finish this tomorrow. I want to do a post on nerve blocks. It is important but I need to rest for a bit. I promise I will finish it.
------
Ok, it is now tomorrow.
Ahh, the magic of the internet. I bet you didn't even notice I was gone!
One of the problems, (yes there are more than one), with this disease called CRPS, or maybe it is the Fibromyalgia, or maybe it's the CFIDS, or, wait. Let's just go with the CRPS. One of the problems is it is simply exhausting. Just being in chronic pain 24/7 drains you. It saps the strength right out of you. When you add in the fact that because of the disease and/or its' side effects and the medications you take for it and their side effects the chance of getting any kind of quality or quantity sleep is out of the question for most of us.
Now throw in the physical therapy and exercise that a CRPS/chronic pain patient must do every day simply to stay at the same level where they currently are right now, I am not talking about doing extra PT or exercise to improve your condition, but rather the things we must do day in, day out just to maintain; add that in and you get even more tired.
Now for good measure throw in a few extracurricular activities. Nothing spectacular like climbing Mount Everest or bungee jumping or leaping out of an airplane or babysitting pre-schoolers. Let's not get crazy here. Maybe a movie with friends, church on Sunday, perhaps volunteering an hour a week a few weeks a month. Ok, now how tired are you?
Not done yet.
You still have Drs appointments, usually one or two a month. Calls to your Doctor, maybe one to your insurance company as well to straighten out some problem or another. Toss in two trips to the pharmacist, maybe three trips to the grocery store as well.
Just a reminder for all the "normals" out there. Love that word, "normals". Most, not all, but most CRPS patients suffer from allodynia and other symptoms. The simple medical definition of Allodynia is pain from things/stimuli which do not normally produce a painful reaction. It is an extreme hypersensitivity. What are some examples of things that can cause pain to us that would not normally cause pain?
wind - noise - change in temperature (especially cold) - ice - change in barometric pressure - touch (can be touch of a person, clothing on our skin, even our own hand touching another part of our body, sudden, surprise, light touches are almost always worse than firm touches we know are coming), vibration, water temperature (again, warm is much better than cold)
These are just some of many examples. Any CRPS patient can give you many, many more examples. Some patients may not even realize that this is part of the disease!
Then you add in the pain to all of this and you get an even better idea of how exhausting it can be simply to try and get through the week, month as a CRPS patient, or chronic pain patient.
What is the pain of CRPS like? Funny you should ask. I just happen to have aa link to an article that discusses just that! What does CRPS feel like?
The reason I decided to write this topic this week was that I have heard from a number of patients these past few months, some who were very desperate, whose loved ones felt that they were either playing the sympathy card, over-emphasizing their pain, over-acting in an effort to gain sympathy from the rest of the family; or from loved ones or family members , or even friends who told them that, and I quote here because the quote is almost always the same, "It must be nice to sit around all day and play video games. I wish I was on Disability!"
Now I know how these patients responded. Mostly with tears. They were heartbroken, that their loved ones, parents, siblings, and in two cases, husbands, felt this way. That they were simply sitting around enjoying being on disability, having this "little disease" so they could play video games.
I also know how I responded when I got these letters. I cannot repeat the words here that went through my head or came out of my mouth and it was fortunate that I was not present, live, in the room when these people said these things. As angry as I was, am, it also broke my heart for those patients, knowing the agony they endured, endure daily, and yet their very own loved ones still doubted their veracity; still doubted their suffering, still did not understand the agony of their everyday lives. How then would they be able to help them recover and move forward?
How do get across to these people what it is like to have this monster inside of you, have all of these strange and disturbing and bizarre symptoms going on at the same time and finally learn it is actually ONE disease, finally get the correct diagnosis, if you are lucky after only 3, 5, or 8 Doctors and then still have your loved ones not believe you!
So folks, what do I tell these patients? How do they convince their loved ones that life on SSD is not all peaches and cream and X-Box? That it is more than a full-time job to have a chronic illness, as described above; there is more than enough to keep you busy every day just to stay even with the disease and not lose any ground! That the pain we live with every minute of every day would probably turn that same person who thinks it is a cakewalk into a screaming, crying, help-me-please, huddled-in-a-corner mess inside of ten minutes?
Fortunately for them, we would never want our loved ones to ever truly know the extent of the agony we suffer, unendingly. It would break their hearts if they were able to actually plug-in to our bodies and feel it, even for a minute. So as much as we think "If only there was a way for my "Dr", Husband", "Parent", "WC Attorney", etc. , to be plugged into my pain, just for a few minutes to see what it was like, the reality is we do not want anyone else to feel what we feel.
But there has to be some way, doesn't there? Let's figure it out. Let me know your suggestions.
send them to me!
I will post the best answers in an upcoming post here.
In the meantime, please folks. Let us all just try and help each other. enough with the hate. Time for healing. Too many boundaries everywhere, for far too long.
Peace and freedom from pain, they are all we seek,
Keith Orsini
American RSDHope
PS - If you have not gotten your copy of the National CRPS Awareness Ribbon for your Facebook Page or website, personal or business! Help spread awareness!!! Send me an email, at the address above. We also have a smaller size of the ribbon for those who want to include it in the emails they send out to people all day long! We do not charge for this jpeg file of course. It is copyright protected though. But if you have something special you want to do with it, let us know. We might say yes and send you a permission form! Someone recently added it to their body as a tattoo! Another is going to use it for a fundraiser!
We will also soon have ceramic ribbons that we can share at cost, it will be the national ribbon, they look amazing! Get some for your support group, Facebook group, fundraiser, school, family, whatever. You can even get the awareness ribbon for your car! nearly ten thousand cars across the country are already showing their awareness for CRPS, and thousands of websites, Facebook pages, and emails are now starting to zip across the web with the ribbon on them. Join the wave!
Send an email to RSDHope and ask for the ribbon in the large size for the website or Facebook page or the smaller size for email, or both!
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