A day in the life of an RSD patient

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! 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 have other diseases as well as RSD, such as Fibro, 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 30 pills a day.

There are patients who use different types of machines or who have SCS or Pump units and some deal with the wheelchair issue as well. I use two machines. One is a muscle stimulator and the other is the Alpha-Stim. The bottom line is that most patients deal with the same basic issues. The idea of this article is to get you an understanding of these basic 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 awake 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. Dr Hooshmand wrote an excellent article on this phenomenon. (www.rsdrx.com)

We start our day with medications - the first of many to be taken through the day. To "look fine" we take over 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, sometimes diarrhoea and sometimes constipation, and others. Understand that these pills do NOT take the pain away. They just enable us to get up, move around, and have some semblance of a "normal" life. Many of us also have to fight the "Dry-Eye Syndrome" and must use eye drops four or more times per day.

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. I use my two machines for a total of around two hours per day altogether. Then many of us head to Physical Therapy such as pool exercise or range of motion therapy. For me, in addition to my aqua therapy I also try to walk or use my exercise machine two times per day.

Whether we 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.

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 for some, this is when Workers Compensation or your Insurance Company is secretly videotaping you. They then turn around and say to you, if you can do THAT you can work. What they don‘t see with their camera‘s 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 Doctors about how to cope with and treat RSD. For most of us the computer is our lifeline, not our toy. The time we spend on the computer is absolutely necessary to our general well-being.

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 morning or afternoon. Usually by early evening we are done for the day. You also have to factor in your physical therapy and Doctor's 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.