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A Letter To Loved Ones

 

This letter was posted on  American RSDHope, which is a good informational and supportive site for RSD patients and people who would like to know about RSD.

  I was truly moved by this letter; because it does help, so much, to explain how RSD affects our lives. This letter took a big part in my decision to change the whole format of this website from a craft site I was going to get rid of to an RSD Awareness site. So, Please, take a moment and read it. I hope it touches you as it did me, or at least educates you in the struggle people with RSD have to face on a DAILY basis.

 

TO THE FAMILIES AND FRIENDS OF RSD/PAIN PATIENTS - From the desk of Keith Orsini March 2005

 

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

I myself have had RSD for over 30 years now, since 1974. I also have Degenerative Disc Disease, Failed Back Syndrome, Ulnar Nerve Entrapment, Fibromyalgia, etc. So Chronic Pain 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 other RSD and other CP 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 dont 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. Please don't take this letter as mean-spirited in any way, I know some of it may be hard to read. It is not an attack, they just want their voices heard.

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 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 20 pills a day(not different ones, but altogether). 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, to help them continue to be able to do the basics things 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, lets start with the sleep patterns. Unlike "normal" people CP patients 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.

(There is a special article on sleep and the problems RSDers have with it in this section) RSD AND SLEEP

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.

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 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 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 its 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 disbelieve them when they try to explain how it causes pain that hurts them 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, there is no pain like the pain of RSD/CRPS. That isn't just from a patient or an advocate, it is documented.

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

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 that is quick, RSD is 24 hours a day, 7 days a week.

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 directly afterwards, or even the next day and/or week.

We RSD patients are cognizant of that every day. While the average person can sit there and say "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, playing with our children or pets, going to a movie, 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 dont 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 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 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. You have to change your thinking to moderation.

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, and again, I am just an example of many out there. Places most people take for granted and wonder why we are not there and maybe 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, even family gatherings, have to be cut short sometimes due to all the typical regular noise generated or go off to another room and then 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 friends were always there. So many teens I talk to on our Teen Corner arent 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 isnt, as many of you personally know.

I have heard so many stories from our teens with RSD/CP whose siblings, Aunts, Uncles, even parents, tell them how they are just babying their 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 dont 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.
  • It is a full-time job being a chronic pain patient
  • 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.
  • It is an invisible disability. Even other pain patients will sometimes forget that they cannot see YOUR pain and make assumptions about your pain based on things they see you do on certain days.
  • 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 what most don't relaize the price that is paid before and after.
  • Your positive involvement 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 don't. I 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, the second time in my life I have had to do that, despite being told by Drs that it may not happen.

    I remember one point where the only time I was able to leave my room basically was to go to physical therapy five days a week, for almost the entire year! 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, 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!

    I am blessed in that currently, I am doing better than many other years. That doesn't mean I am "cured". I take my 20 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. Evenings, my pain escalates such that I rarely go out. But I am not complaining. I have been much worse and I never forget it for a minute.

    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!

    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/CP 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 didnt think about it so much I wouldnt 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 or even half a day.

    But then we think, it is no different than if we had cancer or 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 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 wouldnt 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/CP 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 actually accept that they are real; both the patient and the loved one in the case of the chronic pain patient.

    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.
    PS: For more information on Chronic Pain, please visit
    AMERICAN RSDHOPE This link leads to a website that is not part of RSDHope 

    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.

     

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          Thank you, Keith, for this very deep & touching letter.    

     

       

    Storm's RSD Awareness
    PO Box 227
    Brownsboro, AL 35741-9998
    Storm@StormsRSDAwareness.com