Fentanyl Patch - does the generic patch work as well for chronic pain as the name brand?

ARGGGGGGGGGGGH, OWWWWWWWWWWWWW

GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR

GROWLLLLLLLLLLLLLLLLLL

OK , Now that was how most of my days last month went when my insurance company made me go on the generic form of the Fentanyl patch for the month to prove that the name brand that I had been using was worth the extra $35 a month. Yeah that's right. $35 a month so I could spend a month in agony.

I know. Some of the Drs out there, and maybe some pharmaceutical reps, will say "There is no difference between the name brand medications and the generic formulations."

wonderful.

YOU try living in chronic pain and having your main source of relief switched to a generic brand and see if you agree. Maybe for some people there is no difference. And I will admit that for some drugs and for some diseases and issues there is no or is little difference between the name brand and the generic medications HOWEVER, for about 40% of them there absolutely is!

40%? Where did you get that???  personal experience and patient submissions, no studies or articles so don't quote me. Share your own experiences if you like here and I will post them.

I will say that FOR ME, the generic patch at 75 mcg was about the same as about a 25 mcg patch for the first two days and it felt like a band-aid for the third day. It was hell. The first week was bearable, the second and third weeks were extremely difficult and the last week was very very rough but at least I knew relief was coming.

Now I have been back on the real patches for 5 days and it is beginning to get better but here is what those guys don't understand. There is a c u r v e involved. Like a learning curve for people learning a new skill or children learning to read, with medications, when you go off a pain med, it takes a while to get back up to speed, it isn't like a light switch that suddenly is turned on and bang! All your pain is gone again because you are on the better medication or the right dosage.

When you get taken off of the correct dose or the medication that is working well for you, for whatever reason, your pain levels go up , you can go into pain spikes or flares, and that nice even keel of pain management you were on takes a while to get back. It doesn't matter if you were holding onto a pain level of 5 or 9 every day, if it was the SAME every day it was easier to manage than if it was an 8 one day , a 7 the next, a 9 the next, a 6 the day after and so on. You adjust your mental picture and your daily routine to your pain level, you plan your future routine and activities to your pain level, etc.

Not to mention when you have weeks-long pain increases, due to being taken off of your regular pain medication because the insurance companies want you to go through their hoop-dee-hoops to prove what you and your Doctor already know, your normal physical therapy regimen gets tossed all out of whack.

For me and my better half that means walking most days of the week. People always say to us "Didn't I see you guys walking ……?" Yes probably. We are always walking because if we don't it increases both of our medical issues. it isn't easy to get ourselves out there many days, much easier to stay inside and sit on our tushies but not in the long run. Use it or lose it very much applies to CRPS and other chronic pain diseases, MS, etc. Plus, after being in a wheelchair for a few years I never want to go back there so I walk whenever I can even when it hurts a lot, and it does. And last month boy did it ever hurt. But I have to admit I missed more days than I wanted to and simply could not walk as fast as I was used to, because of those dern patches.

And I was already messed up due to the fall down the flight of stairs I had taken at the end of July. I lost an entire month there when I simply could not walk further than around my house except maybe once a day down the block with my cane, again. I was able to lose that cane after a month or so but the extra pain of that fall will be with me for many months yet.

I am not complaining, although it may seem that way. I am far better off than so many of the people who write in to us at American RSDHope. I feel blessed when I read some of their stories and I try to sound encouraging to them.

We try to share with them the positive stories of volunteering and working with the kids, how much that helps us. People ask us how can we do that, being in pain? My answer is simple. We hear from parents of little kids and teens who suffer from this horrific disease called Complex Regional Pain Syndrome every day. They tell us how much their children suffer, how they can't go to school, play like "normal" children, how they as parents feel so helpless and ask us what they can possibly do to raise awareness and understanding? What can they do to help their children?

We help them. We call them, we email them. My Anjanette, my mom Lynne, myself. Every day or most days. As our bodies allow. Some days we can do more than others. We have other people we can call on to help us, other volunteers, other family members, friends. But the answers are still all very difficult because this disease, as all of you out there suffering with it know, is extremely difficult. It is the most painful form of chronic pain that exists and has been since it was first discovered and studied during the Civil War.

So why do we volunteer with kids? To remind ourselves that not all the kids out there are in pain. To hear their laughter, to be surrounded by their joy and be replenished by it. To remember that for most kids the biggest problems they face is when Joey poked them during small groups, or Suzie took their favorite book during reading time and wouldn't share, or that David has a tough time pronouncing words that start with the letter L. It's our breather. It is the same reason we love going to church, to have our faith renewed, be surrounded by friends and family, by all that love and warmth, and to be reminded that no matter how big our problems seem at the moment, God is always beside us. For me, faith guides me , renews me, and has been there to keep me going these 39 years through this disease.

I am sharing this story because it aggravates me that we still have to jump through these hoops, to dance this "even though your pain medication is working beautifully for you we need you to try this less powerful medication that will result in your being in more pain but it will only be for a month, then you can go back to being in your regular amount of chronic pain" substitution dance, just because that's the way it's always done.

There has to be a better way to do it. I don't know anyone who works in this part of the insurance company who might be in a position to change things. Perhaps you do, maybe it is even you yourself?

Just sharing my experience.

Peace and freedom from pain, it is all we seek

And this month? HAPPY NATIONAL CRPS AWARENESS MONTH ONCE AGAIN!!

Keith Orsini, CRPS Survivor (and fibromyalgia, and failed back syndrome , and
well, we'll stop there;-)
American RSDHope

Official CRPS RSD Awareness Ribbon Color

This is a post of an article from the American RSDHoe website. It discusses the official color of the national RSD or CRPS Awareness ribbon, why it is a multi-colored ribbon, (or flame -colored ribbon) and not a generic orange ribbon, or red ribbon, or purple, etc. Since the article was posted on the RSDHope website it has been viewed hundreds of times already in just ten days and the requests for the ribbon have gone way up. This is great news for Awareness, especially during November, which is National CRPS Awareness Month!

Official CRPS Or RSD Awareness Ribbon 

How Did The CRPS Community Decide On The Color Combination ?

By Keith Orsini, Director and long-term CRPS Survivor

Is the CRPS Awareness Ribbon Red, Yellow, Orange, Purple?  Or is it the Multi-colored Flame ribbon displayed on the American RSDHope website? How was the choice made?  How can individual patients help spread CRPS Awareness? These are questions we sometimes get asked at American RSDHope. 

Let me clear up the confusion and explain how it all came to pass that the RSD and CRPS Community acquired its' very own Awareness ribbon many, many years ago, almost 15 years now!

A time long, long ago. In a galaxy close to home ….

No, seriously.

There is an official CRPS and RSD Awareness Ribbon. YEAH! WHOOPEE!  There has been for a long time but don't feel badly if you didn't know. You would be shocked if you learned how many physicians in this country still have no idea what our disease is all about and that's their job ;-)

You can see it by CLICKING HERE. It is also displayed on the cover page of the American RSDHope website and thousands of other webpages, Face Book pages, as well as everything from professional race cars and speedboats to horse blankets and awareness brochures. Patients and their loved ones have had it tattooed on their bodies, and wear it proudly on their shirts, sweatshirts, cars and trucks.

How did the multi-colored flame ribbon come to be? It is an amazing story of cooperation really. Approximately fifteen years ago the CRPS and RSD groups across the country, including American RSDHope, held a many-months long discussion and voting process to decide what color we should have as our official national CRPS Awareness ribbon. These groups included groups that met in person as well as those that met in on-line chat-rooms and listservs. It was not an easy process as you can imagine. We were communicating with so many different people, some via the internet and some not. We had patients from all over the country talking in chat rooms, discussing it in their monthly support groups, and many patients simply wrote to us directly, sharing their feelings.

Many colors were suggested in the early stages of course; everything from red to yellow, purple to orange, yellow to blue. It was obvious that we had to first make a list of what the many different color ribbons stood for and go from there.

When we did, we learned that many colors had a VERY LARGE number of diseases or causes already associated with them; such as orange, red, and purple.

Orange ribbons: This is the color Awareness Ribbon for not only MS (Multiple Sclerosis), but also Leukemia, Muscular Dystrophy, Malnutrition, ADHD, and several types of Cancer among other things. Those are pretty big causes with lots of years of awareness behind them.

Red ribbons: AIDS awareness and Heart disease.

Purple ribbons: Suicide Prevention, Lupus, Crohn’s Disease, Testicular Cancer, Animal Cruelty, Drug Overdose, Fibromyalgia, and many others.

There may be others out there that someone has suggested for CRPS or RSD Awareness but you get the idea. The other colors suggested were simply more of the same, that is, already being used by other causes.

We decided to take a different tack entirely. We asked everyone what they wanted the Awareness Ribbon to say, what symptoms they wanted the ribbon to represent, or what aspect of the disease, or what message did they want it to convey? What did we want people to look at the ribbon and see? Think about some of the ribbons out there now and think about what pops into your mind. For most people when they see an orange ribbon they think Multiple Sclerosis. When they see a pink ribbon they think Breast Cancer. When they see a red ribbon they think Aids Awareness. There are some causes that are extremely tied to their ribbons and that can be extremely beneficial when it comes to fundraising, events, publicity, etc.

We learned that most people wanted it to somehow stand for the color of the burning pain, to remind people of the FLAME, the burning we feel everyday. That tied in to the colors that people sent in but it was obvious we needed to look elsewhere since using one of the colors stated above would simply make us one of the many diseases lost in the colors. Many others wanted people to look at it and immediately think of CRPS, think of our name, our disease.

In the end we decided to design one of our own and when we did, the multi-colored Flame Ribbon you see here was born. We shared it with all of the groups, voted on it, and it was overwhelmingly YES in favor of adopting it as the Official National CRPS and RSD Awareness Ribbon.  

That was more than a decade ago, almost fifteen years ago, and awareness has been growing by leaps and bounds and though we still have a long way to go, with every patient we grow a little bit more. With your help, we can keep that trend going!

Ever since we started, the jpeg of the ribbon has been made available to any individual or support group at no cost; to use on their websites, Face book page, e-mails, for fundraisers, for awareness specialties such as race Cars, racehorses, racing boats, tattoos, t-shirts, sweatshirts, you name it. Many have used it to raise research funds and many, many more

I am not really sure how it started but apparently a few years back the color Orange started appearing on the internet as an option for RSD Awareness. That was one reason we thought make it clear that yes, there already was an official CRPS Awareness ribbon.  One that no other organization or disease has or can ever have! 

This is very important to creating awareness. The public sees our ribbon and they know instantly it is for CRPS and RSD Awareness, not one of many diseases, as happens with one of the other color ribbons that many diseases use. No one else can ever have the flame ribbon ;-)

Help us to keep spreading CRPS Awareness by educating the public about the disease and by using the official ribbon.

Listen, we have all worked very hard in the CRPS Community trying to raise Awareness of this diseases. We have all shared stories if our disease with friends and family trying to help more people realize how horrific this disease can be if not caught and reversed early enough. Some of the luckier ones have been able to get their stories told in their local paper, local news broadcast, national news, syndicated talk show, Twenty-Twenty, 60 Minutes, and more. Hundreds of thousands of CRPS brochures have been distributed from the two national CRPS organizations to all points of the compass, explaining in detail what this disease is all about.

There are groups across the country that hold seminars and conferences for patients, their loved ones, and medical professionals. Many of us have marched on and in Washington, DC and in our own local statehouses getting bills passed for National Awareness Day (November 5th) and National Awareness Month (November); or getting SSDisability to accept CRPS as a disabling disease; or to provide an exemption for CRPS patients on Medicare so that they can get as much physical therapy as needed. The two national CRPS Organizations have held countless conferences over the years and workshops for research and continue to do so.

Awareness is something that requires constant CONCERTED and COORDINATED effort. That is why we have pushed so hard to get the official ribbon out to as many places as possible, as quickly as possible. It doesn’t matter if it is a bake sale at your local Walmart or an Awareness Talk at your daughter's school. If you inform one more person, you have been successful.                                                                                                                                

This November, make it a point to begin your fight for CRPS Awareness. Make every day CRPS Awareness Day. Every month CRPS Awareness Month! Get the official CRPS Awareness Ribbon for yourself, your webpages, Face Book, your emails, your families" pages and email. Get it for your friends and ask them to post it on their Face Book page! Get some CRPS Brochures and pass them around to your local physician's offices, hospitals (especially the ER departments), physical therapists, podiatrists, etc. Wear your CRPS Ribbon pin so people can ask you “What does that stand for?” Get one for your car, truck, RV, work vehicle, snowmobile, whatever, and spread the word!

As my friend Heather says, "Let's make every month National Awareness Month!" Then maybe, five or ten years from now, the CRPS Ribbon will be so well known that everyone will recognize it immediately. 

What can you do, ONE PERSON, during National CRPS Awareness Month to make a difference? I am so glad you asked! 

Take a minute each day during National CRPS Awareness Month (November), and send out one fact about CRPS. You can learn more about Tonya's idea here. If you enjoy doing it, continue the project by sending out one fact each week or every other week for the entire year. When you include a link for more information with your fact, eventually everyone will know all about CRPS!

Thanks to you, each and every one of you. 

Peace,
Keith Orsini
American RSDHope
www.RSDHope.org

Any questions, please submit them to RSDHope ;-)

Disabled With Fibromyalgia? Applying For Social Security Disability? You will want to read this!

Social Security Administration passes new Disability Ruling for those with Fibromyalgia! 

September, 2013

What does this mean? 

This Social Security Ruling (SSR) provides guidance on how we develop evidence to establish that a person has a medically determinable impairment (MDI) of fibromyalgia (FM), and how we evaluate FM in disability claims and continuing disability reviews under titles II and XVI of the Social Security Act (Act).[1]

When did it go into effect? 

Effective date was July 25, 2012.

Publication date was July 25, 2012

Federal Register Volume 77, No.143, Page 43640

http://www.socialsecurity.gov/OP_Home/rulings/PDF/2012-17936.pdf

Where can I go to learn more? 

http://www.socialsecurity.gov/OP_Home/rulings/di/01/SSR2012-02-di-01.html

What is needed for a diagnosis of Fibromyalgia?

Introduction

FM is a complex medical condition characterized primarily by widespread pain in the joints, muscles, tendons, or nearby soft tissues that has persisted for at least 3 months. FM is a common syndrome.[2] When a person seeks disability benefits due in whole or in part to FM, we must properly consider the person's symptoms when we decide whether the person has an MDI of FM. As with any claim for disability benefits, before we find that a person with an MDI of FM is disabled, we must ensure there is sufficient objective evidence to support a finding that the person's impairment(s) so limits the person's functional abilities that it precludes him or her from performing any substantial gainful activity. In this Ruling, we describe the evidence we need to establish an MDI of FM and explain how we evaluate this impairment when we determine whether the person is disabled.

Policy Interpretation

FM is an MDI when it is established by appropriate medical evidence. FM can be the basis for a finding of disability.

1. What general criteria can establish that a person has an MDI of FM?  Generally, a person can establish that he or she has an MDI of FM by providing evidence from an acceptable medical source.[3] A licensed physician (a medical or osteopathic doctor) is the only acceptable medical source who can provide such evidence. We cannot rely upon the physician's diagnosis alone. The evidence must document that the physician reviewed the person's medical history and conducted a physical exam. We will review the physician's treatment notes to see if they are consistent with the diagnosis of FM, determine whether the person's symptoms have improved, worsened, or remained stable over time, and establish the physician's assessment over time of the person's physical strength and functional abilities.

1. What specific criteria can establish that a person has an MDI of FM? We will find that a person has an MDI of FM if the physician diagnosed FM and provides the evidence we describe in section II.A. or section II. B., and the physician's diagnosis is not inconsistent with the other evidence in the person's case record. These sections provide two sets of criteria for diagnosing FM, which we generally base on the 1990 American College of Rheumatology (ACR) Criteria for the Classification of Fibromyalgia[4] (the criteria in section II.A.), or the 2010 ACR Preliminary Diagnostic Criteria[5] (the criteria in section II.B.). If we cannot find that the person has an MDI of FM but there is evidence of another MDI, we will not evaluate the impairment under this Ruling. Instead, we will evaluate it under the rules that apply for that impairment.

A. The 1990 ACR Criteria for the Classification of Fibromyalgia. Based on these criteria, we may find that a person has an MDI of FM if he or she has all three of the following:

1. A history of widespread pain—that is, pain in all quadrants of the body (the right and left sides of the body, both above and below the waist) and axial skeletal pain (the cervical spine, anterior chest, thoracic spine, or low back)—that has persisted (or that persisted) for at least 3 months. The pain may fluctuate in intensity and may not always be present.

2. At least 11 positive tender points on physical examination (see diagram below). The positive tender points must be found bilaterally (on the left and right sides of the body) and both above and below the waist.

a. The 18 tender point sites are located on each side of the body at the:

• Occiput (base of the skull);
• Low cervical spine (back and side of the neck); Trapezius muscle (shoulder);
• Supraspinatus muscle (near the shoulder blade); Second rib (top of the rib cage near the sternum or breast bone);
• Lateral epicondyle (outer aspect of the elbow);
• Gluteal (top of the buttock);
• Greater trochanter (below the hip); and
• Inner aspect of the knee.

b. In testing the tender-point sites,[6] the physician should perform digital palpation with an approximate force of 9 pounds (approximately the amount of pressure needed to blanch the thumbnail of the examiner). The physician considers a tender point to be positive if the person experiences any pain when applying this amount of pressure to the site.

3. Evidence that other disorders that could cause the symptoms or signs were excluded. Other physical and mental disorders may have symptoms or signs that are the same or similar to those resulting from FM.[7] Therefore, it is common in cases involving FM to find evidence of examinations and testing that rule out other disorders that could account for the person's symptoms and signs. Laboratory testing may include imaging and other laboratory tests (for example, complete blood counts, erythrocyte sedimentation rate, anti-nuclear antibody, thyroid function, and rheumatoid factor).

See the TENDER POINTS OF FIBROMYALGIA ILLUSTRATION

from Medicinenet

or VIEW THE TENDER POINTS OF FIBROMYALGIA 

from Medscape

The 2010 ACR Preliminary Diagnostic Criteria. Based on these criteria, we may find that a person has an MDI of FM if he or she has all three of the following criteria[8]:

1. A history of widespread pain (see section II.A.1.);

2. Repeated manifestations of six or more FM symptoms, signs,[9] or co-occurring conditions,[10] especially manifestations of fatigue, cognitive or memory problems (“fibro fog”), waking unrefreshed,[11] depression, anxiety disorder, or irritable bowel syndrome; and

3. Evidence that other disorders that could cause these repeated manifestations of symptoms, signs, or co-occurring conditions were excluded (see section II.A.3.).

This information is all from the Social Security website,and can be found here;

http://www.socialsecurity.gov/OP_Home/rulings/di/01/SSR2012-02-di-01.html They also have much more information there such as; documentation needed to prove your diagnosis, additional information that might be collected, types of tests, etc. The usual things that apply to anyone who is applying for Social Security Disability, or SSD. 

If you would like more information on Fibromyalgia please 

The National Fibromyalgia and Chronic Pain Association. 

They are a fantastic resource and will help you through this difficult diagnosis. They also have a wonderful newsletter and in the latest issue you can read all about how this SSD Ruling came about!

As a side note; many CRPS patients who have CRPS for a few years seem to have a greater tendency to develop Fibromyalgia.

Or you can visit our website;

http://www.rsdhope.org/fibromyalgia-articles.html

Peace, Keith Orsini

American RSDHope 

PS - If you have any comments regarding this article either post them here or send them to Keith at RSDHope.

PSS - Don't forget to get your copy of the National CRPS Awareness Ribbon from the American RSDHope website.

Information for this article from the SS website -

CERVICAL Nerve Block - Epidural Steroid Block - December

I just realized that this post did not get , well, posted! It got sent into my "drafts" folder.

So I have made a few edits and posted it. Sorry for the delay.

My second Cervical Epidural steroid block, for my neck pain, the arthritis or whatever you wish to call it, went so much better!!!!!  YEAH!!!!

I had it done around November 7th..

Two reasons;

1) Steroid medications generally take anywhere from 4 or 5 days to a few weeks to really kick in.

BUT, the real reason is because of the excellent nursing staff at the Unifor Pain Clinic. What I didn't know when I had the first one done was that I could have had it done at my own Pain Clinic! No one told me, they just automatically set it up at the other place, no names mentioned. Which as you saw from the above post, was a huge mistake. IV issues can be huge, even with a very trained nursing staff.

People! Do NOT take the issue of IV insertion lightly. If you ever have ANY problems with having an IV inserted into your arm, hand, etc. because of your disease (CRPS) do not hesitate to let the staff know ahead of time.

What is an ISSUE?

I will explain, since this third time I had a block done (well, third time in 2012 anyway) , I had a great nurse, great staff, and still I had an issue. Sometimes, as they say, things just happen. Plus, I made a mistake. Let me share my experience and you can see if anything similar ever happened to you.

First, my mistake.

I had blood drawn the day before my block. I have it drawn about every six months to check on my various levels, vitamins, blood counts, liver functions, white blood cells count, etc. So many diseases going on, need to keep track and make sure everything is ok. I even went to my GP's second office further away just so I could have his main nurse do the blood draw since she is much better at it and more gentle. had her her use my left arm, the crook of the arms, she used a butterfly needle, smallest there is. (always ask for this guys). She had a little trouble with the vein as usual, my veins tend to move around and disappear. This is also not unusual for CRPS patients. This is part of the problem.

For the block the next day I had shaved the top of my hand so they could set up the IV there. Yes, it is more painful there but they always have trouble setting up the IV in the crook of my arm and end up going to the hand in the end where the veins are easier to see, find, and spear.

I explained to the nurse (new to me but not to the facility) that my veins move, or sometimes they simply collapse despite the fact that as they get ready to stick me they look maH-vah-lous, as Billy Crystal would say. Especially the veins in my arms, and that she should use the veins in my hand, and yes, I knew it was a much more painful place to do it but as long as they rubbed some numbing solution on it first, waited for that to take effect, then injected some pain meds into it, waited for that to take effect, and THEN injected the needle to give me the set up the IV line.

My mistake was having the blood draw the day before my procedure. Neither myself nor my Doctor felt it was an issue at the time and he is still perplexed as to why it became one. Chalk up another one for the strange world of CRPS.

I have had countless nerve blocks over the many decades I have had CRPS. I have had many different types as well. The procedure was nothing new to me. However, the reaction that occurred, well, THAT was something very new.

So what happened?

The cervical block (upper body block) proceeded as normal. I always ask for enough meds to pretty much knock me out enough so he walks over to the bed, says "Are you ready for your block Keith?" I say, "Yup." They wheel me into the procedure room. I switch over from the portable bed to the OR bed. I talk to the nurse for a second. I make sure the blankets are warm ( see CRPS, THE HOSPITALS, AND SURGERY , specifically see number 3) and then I start counting back from 100. I never make it past around 89 I think.

Next thing I know I am in the recovery area and the nurses are checking up on me. Again, so what happened?

It didn't happen until after I got home. Everything seemed fine. Normal reaction. I left the clinic when I felt "normal" again, steady on my feet. Felt like a normal post-block time. But within a few hours I noticed that my face was starting to turn red, then my hands. By that evening my entire upper body had turned a dark shade of red; from the top of my head to my a little bit above my waist. It included both of my arms, both hands, shoulders, chest, face, etc.

It was the same shade of red that occurs when my CRPS is in flare. Some of you CRPS patients out there might know what I am talking about and may experience the same thing, where part of your body turns different colors when you have a flare coming on or during the actual flare; when the pain exacerbates (gets much worse) due to something you did, a change in the weather, stress, a medical procedure, etc.

The problem was I had never had it happen before where the entire upper half of my body went red before! Despite the fact that my CRPS is full-body. I was pretty nervous, I didn't know what was happening. I thought maybe it was a reaction to the medication they used or a dye or something so I called the clinic and they told me if it doesn't go away by morning to come in first thing. It wasn't causing me any extra pain though except in my left hand which was quite painful, the rest was just looking like I got caught in the sun.

Next day I went in to the clinic so they could see for themselves. Very weird. They had no idea, had not seen anything like it before. Since it was not causing me pain we decided to just let it be and watch it.

It lasted for weeks.  Here are a couple of pictures from that time. The first is the hand where the IV was inserted. Not sure if you can see how red my body was in the pics, it doesn't show too well. I took these about ten days into it. The purpley patch is the actual IV site.

Keith's hand - IV site

Keith's chest showing redness, reaction - cervical block

 Eventually it all calmed down and the redness went away, it took about seven weeks I believe. I was very lucky. The pain in the left hand took a little longer to go away, about nine weeks altogether before I could type with it again.

Lesson learned.

Be careful out there.

Peace, Keith Orsini

American RSDHope

Newly diagnosed with CRPS where do I go for information?

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                                      


                                                                                                                                                             

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

National CRPS

Awareness Ribbon