From Keith Orsini, My Story

Dear Friends;

Original Injury – How it began – Picture it, Hudson, 1974
I would like to share with you some information on how our Organization got started and why by telling you my story. I was officially diagnosed with RSD (now known as CRPS) in April of 1993. That was 8 years after the auto accident which broke my back, tore both rotator-cuffs, and covered me from head to toe with bruises. THAT was 19 years after my medical ordeal started in 1974. Apparently the spinal injury was when the disease evolved into full body, or systemic CRPS, not unusual for CRPS patients.

Up until then my CRPS had been fairly well contained above my neck; face, eyes, ears, top of head, etc. It manifested itself in the typical CRPS ways though; constant burning pain 24/7, migraines, extreme sensitivity to touch, sound, vibration, temperature changes, and all of the other allodynia issues we all know so well. But compared to systemic CRPS, wow, a walk in the park 😉

These symptoms had been going on and slowly increasing since my original injury in 1974. I was hit in the face with a baseball, crushing my cheekbones, breaking my nose, and resulting in the loss of the vision in my left eye.  It was partly my own fault I guess. I was the pitcher and if I had thrown a curveball instead of trying to challenge the hitter with a fastball, well, maybe I would have struck him out instead of having him hit it straight back at my head. Funny thing was it didn’t even hurt. It bled like a son of a gun for a long time. We couldn’t get it to stop bleeding. Coach wanted me back in the game, I wanted back in the game, and my dad wanted me to go to the hospital.

I still remember lying on my back on that skinny little bench holding a blood-soaked towel to my face and thinking, I wonder if that counts as a hit or an error because I had a no-hitter going. Of course I ended up at the hospital where they re-set the nose, fixed my cheekbones, packed the nose with about three hundred yards of gauze and gave me a big beautiful nose cast. There is nothing like a big ole white nose cast on an italian let me tell you. And they don’t tell you what it is going to be like taking out the six miles of gauze when they take the cast off either! Yikes! Holy Moly!

Doctors, Doctors, Doctors
Looking back, it does explain a lot of the physical issues and memory problems I had in high school as well as in college that either the Drs never could figure out or I never even mentioned to them because it never occurred to me to do so. And of course they did not actually diagnose with me with RSD back then, in 1974. Not yet. Back then they had no clue what RSD was. They had no idea what I was dealing with medically. My parents took me to pretty much every physician in the state of Massachusetts and then we crisscrossed the country visiting every hospital seeking an answer. We didn’t find one but we did find some interesting Doctors with some not so interesting opinions of my “problem”. See if you recognize any of them 😉

Your son is on drugs. Your son wants more drugs. He is seeking attention because he is the fourth child. He is acting out. He is making it all up. The pain is all in his head. He is exaggerating his pain. A few even tried to say it was a couple of other diseases which they then researched and dismissed. And so forth. I remember a speaker we had at one of the first conferences we held back in 1995 I believe. His name was Dr Hooshang Hooshmand, or “Hoosh” as he asked us to call him once we became friends. He said “Of course the pain is all in your head, that is where you feel pain!” Gotta love the Hoosh! Anyone who knew Hoosh knew all of his little sayings like that.

College – 1982
We never found an answer though. That didn’t stop me from graduating high school, playing sports all through high school, or attending and graduating from college. While the short-term memory problems did make college interesting, especially learning my lines in the dozen or so plays I was involved with, my illness not only  didn’t stop me from graduating in 1982 but I was also blessed with being able to be Technical Director at the University’s Theatre for the last three years of my time there. Memories I will always cherish. I did not understand why I had so much difficulty remembering things, studying, learning new things, etc., especially compared to everyone else but I simply found ways around it. I learned ways around the pain as well. Most people I went to school with probably never knew I dealt with chronic pain that whole time, with no meds, no self-medicating, no drugs, hardly ever drank, etc.

Auto Accident 1985
So we jump to 1985 and following the auto accident, came some very interesting years. Suffice it to say I spent quite a few months  restricted to bed due to the severity of my injuries. I had spinal surgery and rotator-cuff surgery in 1987. Following the surgeries I spent a total of 20+ months going through physical rehab and during that time I was on SSD for a short period while I recovered.  Afterwards I went back to work. I thought I was good to go. Remember, still no CRPS diagnosis. I still had no clue what the underlying chronic pain condition was nor did I realize that what I had just gone through and/or the surgeries had actually made the disease worsen and spread.

Eureka! Diagnosis 1993
It was only in 1993, when they FINALLY made the actual diagnosis of RSD that they discovered I have actually had this disease since 1974, when I was 14. This was what I had had all along. The Doctor read me the diagnosis out of a book. She said that “it would burn itself out in a year”. Since I had already had it for 19 years I was rather dubious of her assessment. Three months later I met with a pain management specialist who told me that we should buy not rent a wheelchair. I will never forget either of those conversations.

I ended up going on permanent disability that year but I finally had a name for my main pain issue, now to be added to the back problems that were developing. So, RSD? Great! I can find all about the disease, find a good Doctor, learn how to fix it, and then get on with my life. Right? Right? Hello?

In 1993 I had moved to Maine shortly after I got that diagnosis and moved back home, back home to mom and dad 😉  I needed their help and they were there for me. After discovering my Dr. could give me little more than a name for my condition, I turned elsewhere for information. Instead, I found a HUGE hole where information should have been. My family and I decided we could not be the only ones looking for information on this disease. We looked to see what we could find for information on the disease.

To read more on how our organization formed next, read the ABOUT US SECTION.

I was pretty much stuck in the bed for a year or two I guess. A lot of those first couple of years in Maine are blurry. Lots of pain and lots of medication, lots of physical therapy broken up by chatting via computer with new friends on that new fangled thing called the internet and the first CRPS website! 

Out of the Wheelchair
I was in that wheelchair until around 1998 or 1999 I think, if I remember correctly. Then I only needed it when I went somewhere that required a lot of walking. I graduated to a cane then. How did I get out of it? Very slowly and with a whole lot of hard work let me tell you. Plus, I am extremely stubborn. I started out by deciding I didn’t want to stay in it and I was going to walk to the bathroom, five feet. I did it, once. Then twice, then ten times a day. Then I walked around the couch, once, twice, then ten times a day and so forth. I am sure it looked either comical or pathetic, not sure which one and didn’t really care actually.

Someone once said something interesting to my Mom. This woman said, “Well Keith isn’t in pain all the time is he?”. My Mom quickly straightened her out I think, let me assure you. Like almost every single CRPS patient I know, the pain is ever present. Some days it might be a 7, some days a 9, and some days a 987. But most days it is a fairly steady 8. A chronic pain patient pain scale 8. Not the typical “normal” every day persons pain scale 8. You guys know what I mean. When you go into the Drs office and they ask you, “What is your pain today on a scale of 1-10?” You want to say 10 every time to make sure they understand the severity of your pain, how out of proportion it is to one of their “regular” patients who doesn’t deal with chronic pain every day. I always felt that they should have two pain scales; one for regular, normal people (is there such an animal?), and one for chronic pain patients. Because my 8 is not John Q Public’s 8. It isn’t even close. The only use my pain scale number is to the Dr is if he looks at my number month after month at each appt. and tracks them on a chart to see whether they go up and down, like on a curve. But just as a number itself? Useless.  But I digress.

And if my CRPS is doing fairly well then I always have my degenerative disc disease, failed back syndrome, Fibromyalgia, discs in my neck and back, migraines, insomnia, myofacial pain syndrome, or a host of other ailments I have been blessed with; as many other CRPS patients have ;-D  You know who you are, c’mon, take a bow! It does seem to open the door to other disease/ailments, perhaps because it weakens the body/immune system.

Please don’t get me wrong. I am NOT complaining. For while I do NOT believe in that awful statement that God doesn’t give us more than we can handle, for my God doesn’t hand out things like CRPS to those He loves; I do believe that He has plans for each and every one of us. I do believe His plan for me includes being in this place at this time doing this work. Do I wish he gave this work to someone else and I was healthy and could live a life without pain? Absolutely. I may be on medication but I am not an idiot.  Problem is, I wouldn’t wish this disease and pain on anyone else, not even my most hated enemy. I have it and I will work around it.

Florida – 2008
I ended up moving to Florida so I could get our of the cold weather. The cold was just making my pain worse. Those are some long winters up there and 10 degrees below zero is meant for penguins not people. But like Goldilocks Florida was too hot, Maine was too cold, and so we sought a state where we could actually do things outdoors during the daytime without freezing to death or sweating every drop of water out of our bodies. We are now what people call half-backs, having moved halfway back towards where we started and are in NC. Beautiful here; weather, people, church, politics (ok, so it’s not perfect), we just love it.

So here I am, fighting every minute I can, resting when I can’t. Does it cause me pain to sit and type sometimes? Absolutely. All the time. How about when I am walking? Yes. Standing? Yup. Floating in the air? If only I could figure out how to do that I would be in less pain and a very wealthy man!

The key words are moderation and adjustments. Many times I can’t do anything because of the pain. That is when I make sure I rest. Sometimes I have to get by with just five minutes here and there. You get smarter the longer you deal with chronic pain. But that is why it is called a disabling disease. I am sure this is nothing new that I am describing here to most of you. You deal with the same things or worse yourselves.

Most people who know me would probably be very surprised, maybe even shocked to read this story. They have no clue that this is my story. Chronic Pain is also called the invisible disability. People can’t always see your pain and sometimes they assume you are fine, not understanding the incredible fight it takes every minute of every day just to get by, like the duck who swims across the pond. He looks fine from above; skimming across the water effortlessly but what you don’t  see is all of the work going on just below the surface or know how much  work it takes to get him from one side of the pond to the other because ducks only make noise when they take off and land (do they? works for the story anyway).

Most people also don’t understand the precarious balancing act the typical chronic pain patient has to play with medications; too little and you can’t function because of the pain, too much and you can’t function because of the medication. Finding the right balance takes a time and having a little extra pain so you can function and “do things” can make the difference in enjoying life or not. There are a lot of physicians out there I think who still have a difficult time understanding that concept, especially when it comes to opiods; and even more so when it comes to the distinctions between dependence, tolerance, and addiction. 

Currently the best pain medication for me has been the fentanyl patch. I was doing very well on it until the beginning of October of 2013 when the insurance company forced me to try the generic patches for one month; apparently to prove they either were as good as, or not, the name brand duragesic patch. What a test of endurance and a reminder of how scary halloween can truly be for my better half.  I am sure that for some people the generic patches work just fine. For me they work about 50% as well. When your major source for pain management is suddenly only working half as well as it has been working and you have CRPS let me tell you, that is a loooooong month! Insomnia is difficult enough without a 50% increase in pain robbing even more sleep from you. What these insurance people don’t understand is how long it takes to get your pain back under control after having it upset like that. One more speed bump in the highway that is CRPS. Fortunately I have been blessed with an amazing partner and she kept me sane during that trial. Despite her own burdens, she is always there for me.

Many people have asked me what treatments I have had over the years, which ones I have not, etc.
You can check out these links for the two major treatments I have had.

Low-dose Ketamine In-Hospital continuos infusion 
HBOT – Here is one and HERE is Two

I have also had many lumbar nerve blocks, cervical blocks, epidural blocks, facet joint injections, etc. LOTS of physical therapy; aqua therapy (my favorite!!!), and I try and follow a good chronic pain diet.

We try and get out to walk for exercise every day. Some days it is harder than other days to motivate myself because of the pain it causes. But I remember what it felt like when I was unable to walk and had to stay in bed for a couple of years, or when I had to use a wheelchair for a couple of years after that. I am grateful that I am to still be able to walk and so I get out and do it. Very grateful believe me. I remember all of the people who can no longer get out and walk, and so I do it for them as well. I do whatever types of exercise I can without overdoing it on the good days, a difficult task sometimes because I can be a little, just a little, stubborn but something you learn over time. I am also blessed because I have a partner who motivates me when I need it. She is there walking beside me every day. people see us walking all over town. I help her, she helps me. She is one of the most amazing people I know. What an incredible addition to the family, she certainly fits into my family, this family of fighters. So out we go every day, or at least 5 out of 6. We usually take Sunday off 😉  On the days we think about not walking our bodies hurt more so we get our tired tushies out there.

I am blessed in that I am able to volunteer and help with one of the local schools, a cause that is very dear to me. Helping kids learn to read is so much fun and it helps to remind me of all the healthy children out there. We both enjoy working with the kids there. It isn’t every day and it is only for an hour or so at a time. Days, times, length, etc. these are all governed by the pain issues of course and i figured out rather quickly what my body could tolerate with the rebound effect (lots of pain the next day). Every hour helps so much with the kids though and getting a hug from a child you just read to or seeing them light up when you walk in because they know you are here to read with them; how much pain relief is that worth? A whole lot let me tell you! We are also involved with our church and enjoy that a great deal. Our faith means a lot to us and helps us in our journey.

Discover what you like to do, figure out a way to STILL do it, even if it is only for a shorter amount of time now, and then get out and do it. You might be surprised by how much the positive psychological changes can impact your overall pain picture. Don’t allow this disease to rob you and others of the gifts you still have to offer.

So why I am sharing this? Because I want you to know that you too can get out there and make a difference. There are many individuals out there running support groups, holding fund-raisers, and raising awareness despite their pain. Don’t let pain stop you from doing whatever it is you feel in your heart to do. Volunteer at an animal shelter, at your church, at a hospital, work with veterans, or read to kids. There are a myriad of opportunities to get off your fanny and get your body and brain volunteering a few hours here and there without spiking your pain too much. Be careful and don’t overdo, be aware of your pain level

Granted, if it weren’t for my incredible family and the wonderful volunteers across the USA who help raise Awareness and Funds, there wouldn’t be an American RSDHope. We simply wouldn’t be able to accomplish something like this on our own. But I would still be out there doing something. Not because I am superman, but because like so many of you, I am a Type-A personality and, despite the illness, I have to do something whether I hurt or not. Otherwise I would curl up and die. As an famous man once said, a rolling stone … can give you a heck of a bruise.

So with all of these driven individuals, and these local groups and national CRPS Organizations like American RSDHope and the RSDSA, we can put a dent in the CRPS monster. We still have a long way to go, even after all of these years. What is important to note here though, is that progress IS being made and people ARE being helped. You are no longer alone out there in your struggle. Get involved with our group, one of our programs, and/or your local Support Group, or the RSDSA, but get involved somewhere. It doesn’t even have to be related to CRPS, just get involved with something somewhere!

I wish the SSA would more actively encourage volunteer programs. People get paranoid about doing anything but just because we are on SSD doesn’t mean we have to hide in a corner someplace. Yes, we can’t do many of the things we used to, the things that made us money, the physical things we used to, especially things for hours on end. We can’t physically do them anymore, our bodies are not up to that. Many of us also struggle with some of the tasks that require learning new things due to the short-term memory problem that comes with our disease.

I remember how I struggled with my job learning even the simplest new task and even forgetting some of the older tasks I already new when the stress increased my pain but since it was before I had a true and correct diagnosis and knew anything about what was then called RSD, I knew nothing about how it impacted the short-term memory. I didn’t know what was going on at the time. Was I getting early-onset alzheimer’s? It was a confusing and difficult time as I fell further and further behind at work, able to do less and less. I know many of you out there are shaking your head in agreement. But when you learn, when you discover it is all part of the disease, this weird collection of symptoms, it starts to make sense and you realize you aren’t crazy, you aren’t losing your mind or getting alzheimer’s, or a brain tumor, or anything like that. It is all because you got hurt, had surgery, stubbed your toe, fell down, got shot, or whichever of the many, varied, and bizarre ways you can develop this crazy disease called CRPS.

But volunteering for a few hours in a row, helping your community, improving our children, helping ourselves in the process, that has to be a positive thing right? Maybe for you it is an hour, maybe two. Start slowly and build up. That doesn’t mean it won’t cause you a little extra pain but as any Doctor who deals with chronic pain patients will tell you, just getting out of bed in the morning is a decision that may increase your pain. It is what you decide to do after that that determines your destiny. So make good decisions. Decisions that can help focus your brain, make connections, use parts that you have been letting go dormant, talk to people a few times a week, smile, engage, M O V E your body a little. Sure it might hurt here and there but there is no guarantee that just sitting on your couch will bring you less pain right? Make a difference in someone else’s life and you just might see a positive change in yours.

There is an old story that has many variants. The one I like best is one I share with students that I tutor when I discuss teamwork. I ask one of my students to bring their water bottle to the front of the class and hold it out in front of their body. I ask them how long do they think they could hold it there? Is it heavy? Of course they say things like; “Long time”, “Not heavy.” I ask him/her if they think they could hold it for an hour, two, five? Suddenly they are not so sure. I bring a classmate up and ask them to help hold it. Now it seems easier. Then another classmate, and another. Eventually there are six or more students sharing that burden and they are laughing and joking and bragging that they can hold it up as long as I dare them to. Together.

It isn’t the weight or size of the burden we carry but how long we end up carrying it by ourselves.

Take this information and the information from the other web sites and pass it out to anyone who will listen.

Take control of this disease, arm yourself, and most of all remember, you are not alone anymore and you can make a difference, pain or no pain, just pace yourself. A lot can be accomplished with 20 minutes here and 20 minutes there. Just because we are disabled doesn’t mean we have to let ourselves disappear.

Peace and freedom from pain, it is all we seek,
Keith Orsini

(Keith can be contacted by email)

If you would like to hear a radio interview Keith did in November of 2012 during National CRPS Awareness Week, CLICK HERE!