Tuesday, November 5, 2013

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




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."


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


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, OrangePurple?  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. 

Keith Orsini
American RSDHope

Any questions, please submit them to RSDHope ;-)