It is a pain absolutely like no other. When people ask me to describe it to them the best I can do is say “Imagine if you had RSD in your hand and arm. Now empty the blood vessels in your hand and arm out and refill them with lighter fluid and light them on fire and keep them lit 24 hours a day, 7 days a week.” “Now imagine no else can see the flames or will believe you are in pain no matter what you say”. That is RSD.

Whether we patients are walking for therapy, which I assure you is as painful as it is necessary, or doing things that remind us we are alive, there is always a price to pay in extra pain afterwards or even the next day. We RSD patients are cognizant of that every day. While the average person can sit there and say "Go ahead, enjoy the day, you can't let your pain control your life!", what they don't realize is that we are controlling our pain not the other way around.

What I mean by doing things to remind us we are alive, are when we spend a few hours maybe tending the garden, playing with our children or pets, going to a movie or grocery shopping, running errands, attending a family gathering, or even hanging Christmas lights. Things that make us feel normal, if only for a few hours.

Unfortunately some people who see you during these "good times" believe that is how you are the entire day. What they don‘t see is the pain you experienced that night and/or the next day because of what you did. Nor do they take into account all the medications you took before and/or afterwards to be able to do that; or the fact that you probably had to spend a great deal more time resting afterwards.

The same is true for those who go to the computer to get support from others with RSD through cyberpals or listservs or websites. They do not understand that many times it is the time we spend there that keeps us going each day and informs us of new procedures or medications and educates not only ourselves but our loved ones, and sometimes even our Drs., about how to cope/treat RSD. For most of us it is our lifeline, not our toy. The time we spend on the computer is absolutely necessary to our general well-being for it is there we can talk with others who truly understand what we deal with every day and every minute.

Many of us have to sneak in a nap in the afternoon to rest our bodies. One of the problems this leads to is when our loved ones try to do something nice for us and plan a whole days activities it is just too much for us.

It is much easier to do something in the late morning or early afternoon. Usually by early evening we are done for the day. You also have to factor in your physical therapy and Drs appointments as sometimes these things wear us out for the day.

Another strange symptom that has to be factored in to our daily lives is that many of us are bothered by vibrations or noise, and for a small percentage, it can actually make the pain skyrocket!

Due to the noise and vibrations causing me extra pain for instance, there are a lot of things I cannot do or places I cannot go. I cannot go to Church or my Masonic meetings, or any place where there are a lot of people making noise for example, even if it is simply singing or clapping. Even family gatherings I have to cut short due to all the typical regular noise generated. When you add in thunderstorms, whew!

Imagine saying to your boss, "Sir, I have to go home, the thunder is causing me great pain and the wind blowing so strong hurts as well." Oh yeah, they would love that. Sorry I can't come to your birthday party because there will be too many people having fun and enjoying themselves and making noise. Yeah, that makes sense, especially to my 10 year old niece. I can only imagine the restrictions parents with kids have to place on their children so as not to hurt their RSD limbs, after all kids will be kids.

I was lucky when I was a teen with RSD because despite many a day spent wearing dark glasses due to the pain of the bright sunlight or the days when the pain of my RSD made the ordinary things extremely difficult my friend were always there. So many teens I talk to on our Teen Corner aren’t as lucky. They have school mates who take pleasure in pushing them in the hallway to see them fall on their bad leg, or purposefully hit their RSD arm. Why even their own siblings hurt them or taunt them about their RSD, as if it is something they have a choice in. Who would choose RSD? Do they think we just have to decide to smile and it will go away? It would even be a little more understandable if it were just the kids, unfortunately it isn’t, as many of you personally know.

I have heard so many stories from our teens with RSD whose siblings, Aunts, Uncles, even parents, tell them how they are just babying their RSD affected limbs, that they need to “use it or lose it” so to speak. Great advice from the uneducated and seemingly uncaring. Instead of saying things like that, why not read up on the disease, go to the websites like ours, see what the truth is regarding using the limbs, talk with the Dr about it, if you really care that much about their well-being. You don’t know how much it would mean to the patient if you took just an hour here and there to do that.

The bottom line here and the point I have tried to get across is that when you have RSD, you have to constantly think about how whatever you are going to do that day will affect your disease and your pain level. All in all, it is a full-time job being a chronic pain patient, and one with no vacations, terrible benefits, and no way to quit.

Our medications, our therapies, and our friends are what get us through each day. The value of none of these things can be minimalized. Not just for the physiological changes that they bring to our body but for the psychological ones as well. That doesn't mean our lives end, they just change. And RSD patients require tools to make those changes possible. Tools that include medication, various therapies, exercise, diet changes, and lots of familial support. You can be a positive part of it or you can be a hindrance, it is totally up to you.

Now some may view this as being obsessed with the disease, that we think of nothing else but our disease, our pain, that we are too focused on it and that is why we are so depressed, so sad, we hurt so much. Gee, you mean if I didn’t think about it so much I wouldn’t hurt so much? Hmm, let me give that a try. No, but the fact is that for us, RSD is a major part of our life. It has to be factored into every decision we make, if it isn't we will pay for it later, as will our loved ones.

My family and I often worry that our friends will get tired of our talking about RSD too often. After all, not only have I had it for 30 years and most of our family is involved in running this organization and getting the word out about this disease.

But then we think, it is no different than if we had cancer or MS, or MD. People are just used to hearing those words more. Yes we will lose friends along the way, that is inevitable, but we will also gain some new wonderful supportive friends and those will be amazing true friends who will be in it for the long haul.

I cannot tell you all the incredible people I have met in our journey from all over the world with whom I have become fast friends. Some I see often and some I see only at our National Conferences on Pain yet it is as if I saw them just yesterday. Many I talk to only on-line and I know them best of all. These are amazing people who have overcome obstacles you wouldn’t believe and still come out on top. And you know what? They could care less that I have RSD.

So now that YOU know what it is all about ... which type of friend are you?

I hope this has helped you better understand a day in the life of an RSD patient.

Peace, Keith Orsini
American RSDHope

On behalf of Pain patients everywhere, thank you for taking the time to read this.

It means a great deal to them that you would take the time to do this and just because they asked you to read this does not always mean they feel they have a problem with you necessarily, they just wanted you to have a better idea about what they have to deal with.
PS: For more information on chronic pain, please visit www.RSDHope.org

copyright March/2005

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