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RSDHope To Family, Friends Of RSDS/Pain Patients Letter

http://www.rsdhope.org/Showpage.asp?PAGE_ID=1&PGCT_ID=2953


From the desk of Keith Orsini, Director of American RSDHope - www.RSDHope.org

A Microsoft WORD file of this article is availble for those who would like to pass it on to their friends and families. I hope that it helps.


(actually those of you who don’t have RSD but have other forms of chronic pain such as Lupus, Fibromyalgia, CFS, MS, etc., you could probably substitute your form of chronic pain everywhere RSD is in this article and share it with your families as well)

The other day a friend of mine asked me if I would share with her loved ones the experience of being an RSD patient, what we go through on a daily basis, the struggles we face, and the importance of medications and therapy in our lives. I thought the best way to do this was to share with what a typical day in the life of an RSD patient was like.

I myself have had RSD for 30+ years now. I first developed RSD when I was 14 years old. Over the last 30 years I have talked to tens of thousands of other RSD patients of all ages and we all experience pretty much the same things with minor differences.

I have actually had people tell me, "Gee, it must be nice to not have to work and just sit home all day". If I thought they were really interested in a reply to that ridiculous statement I would tell them that having RSD and/or other Chronic Pain Diseases, however severely you have it, is much more work than ANY full-time job! And we don’t get to call in sick, get vacation days, and our work week is 24 hours a day 7 days a week!

As an example for those who DO care but are unsure what a typical day is for us, I will try to explain.

Now understand that quite a few RSD patients (also known as RSD’ers) have other diseases as well as RSD, such as Fibromyalgia, Spinal Stenosis etc., and that some RSDers have RSD in one limb and for others it is more, some have less movement while others a little more. Some take a few medications and some take a lot more.

I myself take a little over a total of 25 pills a day. Contrary to some people's opinions taking a bunch of medications does not make us ""druggies". A "druggie" is someone who takes drugs for recreation. A pain patient is someone who takes medication because he/she has no choice and who cannot fathom someone who takes narcotics for "fun and/or recreation“!

There are patients who use different types of machines or who have Spinal Column Stimulators or Pump units installed within their bodies in an attempt to reduce their pain, and of course some deal with the wheelchair issue as well. Most patients, the lucky ones at least, also do some form of physical therapy such as swimming, weights, massage, acupuncture to help them continue to be able to do the basics tings like walking and using their hands, feet, arms, etc. The bottom line is that I can assure you that most patients deal with the same issues. The idea is to get you an understanding of the issues we face every day so forgive for me for making generalizations.

First, let‘s start with the sleep patterns. Unlike "normal" people RSD‘ers are prone to insomnia and do not get the deep REM sleep. This is the healing sleep our bodies need each day. We either wake often or are in a drug induced sleep. When we do wake, it is physically painful to actually get up and get out of bed. Why don't we sleep? It is because RSD cause changes to the Limbic system of the brain. The limbic system is that part of the brain that controls insomnia, short-term memory, concentration, irritability, ability to find the right word when speaking, and more.

We start our day with medications of course. The first of many such times per day. To "look fine" we take 10 to 30 or more pills a day for various symptoms. Then there are the side effects of those medications to deal with; upset stomach, drowsiness, diahhrea; constipation, headaches, and others. Many of us also have to fight the "Dry-Eye Syndrome" and must use eye drops two or more times per day.

Understand that these pills do not take all of the pain away. They just enable us to get up, move around, and have some semblance of a "normal" life. They allow us to function.

Some patients use one of the stimulators or other machines to help their morning get started. These machines are usually used two or three times per day, for 20 to 60 minutes each time.

Then many of us head to Physical Therapy such as pool exercise or range of motion therapy, massage therapy, and even acupuncture. For the patients for whom these things work, they are lifesavers. Like the medications they allow us to function, to be a part of our families, to enjoy part of each day, and for some they actually give us a reason to get up in the morning.

These aren't luxuries but necessities for those of us who can physically do them. There can be months even years, when the allodynia is too high to do even these simple things. Allodynia is when even the lightest touches or sounds cause extreme pain. Maybe the person sitting next to you at dinner touches your RSD arm, or your RSD foot gets accidentally kicked at the pew at Church, or your RSD leg gets bumped into at school; all these things seem harmless to the average person and they may not understand how they could ever cause pain to an RSD patient. But trust me, they can and do. Some people can even have a slight breeze cause them pain.

I know what you are thinking, “that is crazy”. No. That is RSD. If you think it’s crazy, and I am telling you from a knowledge background, think how a patient who knows nothing about the disease at first, feels when they start forgetting things especially when their pain is high? Or when the slightest touch, even the caress of a loved one, the kiss from a spouse, the touch of the sheet on the foot, the tightness of a sock, sometimes even the very breeze itself blowing over the body can cause such pain to the patient it will bring tears to their eyes.

And when their friend and loved ones sit there and make fun of them and disbelieves them when they try to explain how it causes pain, that hurts even more. When a disconnected Dr doesn't believe you, that is bad enough but when a loved one doesn't believe you it hurts almost as much as the pain. And let me set the record straight here on the pain. RSD is ranked on the McGill Pain Index as the MOST PAINFUL FORM OF CHRONIC PAIN THAT EXISTS TODAY! More than double the pain of Cancer.

Does that bring it home to you?

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

Please feel free to share this article with others, we just ask that you respect and include the copyright and author information.

A Word File of this article is available if you would prefer. Just drop Keith an email Keith and ask for the Families and friends Word File

It is free of course.

If you are a friend or a loved one of an RSD or chronic pain patient and would like to talk to someone confidentially about the problems that YOU face, we have a special email for you, LovedOnesE-Mail

 
 
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