Blog Image

CRPS/RSD information

What is CRPS/RSD?!

It is Complex Regional Pain Syndrome and is also known as Reflex Sympathetic Dystrophy.It is a chronic pain condition that usually starts in a limb after an innocuous injury causing pain beyond what is expected. It can spread along the limb, mirror to another limb or spread whole body; including internal organs and eyes/face.
There is no known cure but through this blog I hope to share more on what it is.

Letter to show friends/family

Letters to others Posted on Sep 06, 2013 19:47

Dear all,

Having chronic pain means many changes and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand. These are the things that I would like you to understand about me before you judge me:

– Please understand that being sick doesnt mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably dont seem like much fun to be with, but Im still me stuck inside this body.

I still worry about my family, my friends, and most of the time – I’d still like to hear you talk about your life too. Please understand the difference between happy and healthy. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. Thats all. It doesnt mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please dont say, oh, you’re sounding better! Or “But you look so healthy!†I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.

– Please understand that being able to stand up for ten minutes doesnt necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

(Please repeat the above paragraph substituting, sitting, walking, thinking, concentrating, being sociable and so on … it applies to everything. Thats what chronic pain does to you.).

– Please understand that chronic pain is variable. It’s quite possible (for many, its common) that one day I am able to walk to the toilet and back, while the next day I’ll have trouble getting going two paces. Please don’t attack me when I’m ill by saying, but you did it before! Or Oh, come on, I know you can do this! If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

– Please understand that getting out and doing things does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it may frustrate me to tears, and is not correct! If I was capable of doing some things any or all of the time, dont you know that I would?

– I am working with my doctor and I am doing what I am supposed to do.

– Another statement that hurts is, You just need to push yourself more, try harder… Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

– Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now – it cant be put off or forgotten just because I’m somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

– If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and its not because I don’t want to get well. Lord knows that isnt true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it.There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

– If I seem touchy, it is probably because I am. Its not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you – people who are not sick. I need you to visit me when I am too sick to go out… Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able. I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.



Very informative letter to give to others

Letters to others Posted on Sep 06, 2013 19:40

TO THE FAMILY’S AND FRIENDS OF RSD/CHRONIC PAIN PATIENTS

written by Keith Orsini

2005

(For those of you who don’t have RSD but suffer from any other form of chronic pain (CP) you could probably substitute your disease everywhere you see the letters RSD in this article and share it with your families as well)

Dear Loved Ones;

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 what a typical day in the life of an RSD patient was like.

I myself have had RSD since 1974, over thirty years now. I also have Degenerative Disc Disease, Failed Back Syndrome, Ulnar Nerve Entrapment, and Fibromyalgia so Chronic Pain (CP) and I are old friends. I first developed RSD when I was 14 years old. Over the last 30+ years I have talked to tens of thousands of RSD and other CP patients of all ages and we all experience pretty much the same things with some minor differences.

As an example for those who do care but are unsure what a typical day is for us, I will try to explain. Please don’t take this letter as mean-spirited in any way. I know some of it may be hard to read, to actually see some of the words in print, but it is not an attack. Your loved ones just want their voices heard.

Over the years 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 CP Diseases, however severely you have it, is much more work than any full-time job! Plus, we don’t get to call in sick, get vacation days, and our work day is 24 hours long, 7 days a week!

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

I myself have taken over 20 pills a day(not different ones, but altogether). Contrary to some people’s opinions taking a pile 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 probably cannot fathom someone who takes narcotics for “fun and/or recreation“!

There are patients who use different types of machines, have Spinal Column Stimulators, or Pumps installed in their bodies in an attempt to reduce their pain. 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, or massage, to help them continue to be able to do the basics things like walking and using their hands, feet, and arms.

First, let‘s start with the sleep patterns, or lack-of-sleep patterns to be more accurate. Unlike “normal” people, CP patients are prone to insomnia and do not reach 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 often physically painful to actually get up and out of bed. So, 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 much 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 many 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 simply allow us to function.

Then many of us head to Physical Therapy such as pool exercise, 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 handle them. There can be month’s, 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 foot gets accidentally kicked at the pew at Church, or your 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 excruciating pain.

I know what you are thinking, “that is crazyâ€. 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 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. Think of the confusion and terror that brings into their lives.

And when their friend and loved ones sit there, make fun of them and disbelieve them when they try to explain how it causes pain, well, that hurts them even more. When a disconnected Doctor 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, there is no pain like the pain of RSD/CRPS. That isn’t just from a patient or an advocate, it is documented. RSD pain is ranked higher than any other form of chronic pain known today.

RSD is ranked on the McGill Pain Index as the MOST PAINFUL FORM OF CHRONIC PAIN THAT EXISTS TODAY!

To put that in perspective, you can visit a page we have on the website that shows some other diseases/conditions and their rankings.

McGILL PAIN INDEX http://www.rsdhope.org/ShowPage.asp?page_id=116

As you can see on the scale, Arthritis pain is ranked about a 18, Cancer pain a 24, Chronic Back Pain a 26, and then RSD/CRPS is ranked a whopping 42! The only thing close to RSD pain is the amputation of a finger and thankfully, that is quick, while RSD pain is 24 hours a day, 7 days a week with no let-up.

Does that bring it home to you?

It is a pain like no other. When people ask me to describe it to them the best I can do is say “Imagine you had RSD in your hand and arm. Empty the blood from your blood vessels in your hand and arm, then refill them with lighter fluid and light them on fire. Keep them lit 24 hours a day, 7 days a week.â€

Let that sink in for a moment.

“Now imagine no else can see the flames or will believe that you are in pain no matter what you sayâ€.

That is what RSD feels like.

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 directly afterwards, or even the next day or week.

RSD patients are cognizant of that every day. While the average person can sit there and tell us “Go ahead and enjoy the day, you can’t let your pain control your life!” What they don’t realize is that we are controlling our pain and not the other way around. We control our pain by controlling what we do.

What do I mean by doing things to remind us we are alive? When we spend a few hours tending the garden, spending time with our children, playing with our pets, going to a movie, grocery shopping, running errands, attending a family gathering, or even just going to church. 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 or afterwards to be able to do those things nor the fact that you probably had to spend a great deal more time resting afterwards.

The same is true for patients who go to the computer to get support from others with RSD through cyberpals, listservs or websites. Many non-patients do not understand that it is the time we spend there that keeps us going each day . It informs us of new procedures or medications and educates not only ourselves but also our loved ones and sometimes even our Doctors 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 that 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, especially those of us who also struggle with Fibromyalgia. 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. You have to change your whole way of thinking to include doing things in moderation. For many RSD patients that means scheduling things in the morning when we are at our strongest and our pain is at its lowest.

For others, it is much easier to do something in the late morning or early afternoon but typically by early evening we are done for the day. You also have to factor in your physical therapy and Doctor appointments as sometimes these things will wear us out for the entire day.

Another strange symptom that has to be factored in to our daily lives is that many are bothered by vibrations or noise, and for a small percentage, it can actually make the pain skyrocket! A simple ride in the car over a bumpy road can cause a spike in pain.

Due to the noise and vibrations causing me extra pain for instance, there are a lot of things I cannot do, places I cannot go, and again, I am just one example of many out there. These are places most people take for granted and may wonder why we are not there. They may think we are shutting ourselves off by not going, places like my Church, my Masonic Meetings, going out with friends, etc.

If there are a lot of people making noise for example, even if it is simply singing or clapping, it can cause our pain to spike. Visits have to be cut short sometimes due to all the typical regular noise generated or we have to go off to another room. Don’t even start on things like thunderstorms, whew!

Imagine saying to your boss, “Sir, I have to go home, the thunder is causing me great pain and the strong wind blowing is hurting me 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 friends were always there. So many teens I talk to on our Teen Corner aren’t as lucky. They have schoolmates 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 if we just decide to smile 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/CP whose siblings, Aunts, Uncles, even parents, who tell them they need to “Just get over it, deal with it, move on already”. 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 Doctor 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 points I have tried to get across are that;

* When you suffer from chronic pain, you have to constantly think about how, whatever you are going to do that day, will affect your disease and your pain level.

* Being in chronic pain is a full-time job.

* One with no vacations, terrible benefits, and no way to quit.

* RSD is the most painful form of chronic pain that exists today.

* Chronic pain affects the entire family, not just the patient.

* Chronic pain is an invisible disability. Even other pain patients will sometimes forget that they cannot see YOUR pain and make assumptions based on what they can visibily see.

* A chronic pain patient may have a good hour or even many good hours a day where they can “appear normal” to everyone else but most don’t realize the price that is paid before and after.

* The positive involvement of their loved ones means the world to the chronic pain patient.

I am still surprised at the number of fellow pain patients who forget that not everyone with RSD, and/or other forms of chronic pain, shows outward signs of it ALL the time so it is understandable when our loved ones forget. Never assume you know someone else’s whole story at a glance.

Over the past three decades plus with this disease, I have spent a few years being stuck in bed unable to walk, I spent over a year being confined to a wheelchair and having to learn how to walk again. That was the second time in my life I have had to do that, despite being told by Drs that I may not ever be able to walk again. Good thing I am stubborn.

I remember one year where the only time I was able to leave my room was to go to physical therapy five days a week. I have spent many years having to use a cane to go even ten feet and despite this, I still have people who don’t know anything about my past struggles, even some who are fellow RSD patients, email me and tell me I have no idea what it is like to be stuck in a chair or be unable to walk! That I don’t have it as tough as they do.

I am blessed in that currently,(2005) I am doing better than many other years. That doesn’t mean I am “cured”. I take my 15 pills a day. I have to do my physical therapy every day. I have to walk every day. Nearly every afternoon is spent having to lie down because of exhaustion, partly due to the RSD and partly due to the Fibromyalgia, in combination with the medications. But I am not complaining. I have been much worse in my life and I never forget it for a minute.

But NEVER compare your pain to someone else’s. It is a lose-lose situation. It hurts you both. Instead encourage one another and support your fellow pain patients! We all deal with pain in different ways and we all have different levels of tolerance.

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/CRPS 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, seriously, the fact is that for us, RSD/CP 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 CP too often. After all, not only have I had it for years but most of our family is involved in running this organization and getting the word out about this disease. Many times we have to force ourselves to take a break from RSD talk for a day.

But then we think it is no different than if we had cancer, MS, or MD, (which some of us have). 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 wonderfully supportive friends and they will be amazing, true friends who will be in it for the long haul.

I cannot tell you all the incredible people from all over the world I have met in our journey, 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 yet 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/CRPS patient and that you didn’t take it as a slap in the face or something hurled at you but as a teaching tool. Sometimes we have to be forced to confront things in our lives in a harsh manner in order to accept that they are real; both the patient and the loved one in the case of the chronic pain patient. Thanks for listening.

Peace, Keith Orsini

American RSDHope

On behalf of Chronic 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. They NEED you in their life; they WANT you beside them in this struggle. They know they can do it; they can beat this with YOUR help.

copyright March/2005-2008

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