I have been trying to find the right words to describe to my family members and friends for almost 4 years on what it’s like to be living with CRPS/RSD.
Some people get it.. to a degree and some just can’t separate that I look “fine” or “normal”. To them it’s hard that they don’t “see” the CRPS.
I came across this incredible letter that I want to share with you all.
Written by Keith Orsini
(For those of you who don’t have RSD/CRPS 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, and of course RSD has since been changed to CRPS)
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 CRPS 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 CRPS patient was like. I myself have had CRPS since 1974, over thirty years now. I also have Degenerative Disc Disease, Failed Back Syndrome, Ulnar Nerve Entrapment, CFID’S, and Fibromyalgia so Chronic Pain (CP) and I are old friends. I first developed RSD when I was 14 years old.
Over the last 38+ years I have probably talked to tens of thousands of CRPS and other CP patients of all ages in each decade (do the math, that is a lot of patients), 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.
Also, a quick note. If there are any terms in this article that are in bold or in RED, you can click on them and that will take you to more information. If there is a term you need more information on that is not “clickable”, just CLICK HERE, and it will take you to our home page, you can then go to the search box in the upper right-hand corner and type in whatever term or terms you want to search for. It works just like google for instance and will find any pages where information on that term can be found.
Over the years I have actually had people tell me, “Gee, it must be nice to get SSDisability, 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 CRPS 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 CRPS and CP patients have other diseases as well, such as Fibromyalgia, Spinal Stenosis etc., and that some have it in one limb while for others it has spread to other areas; some have less movement while others have quite a bit; some take only a few medications, others quite a lot. I myself used to take a little over a total of 20 pills a day (thankfully a lot less today). Contrary to some people’s opinions taking a pile of medications does not make us “”druggies”. A druggie may be someone’s idea of a person 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, or walking to help them continue to be able to do the basics of life 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 CRPS 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, or dry mouth issues, or both. 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. The lucky ones get out and walk and a few may even get out and work part-time or volunteer a few hours/days a week. The more we can do, the better it is for us, mentally and physically.
These aren’t luxuries but necessities for those of us. We do them as much as our bodies can handle them, even pushing ourselves beyond our pain levels, knowing we will pay a pain-toll later. Because the alternative is to sit and do nothing, letting our bodies get worse and our minds waste away. Unfortunately many people see us during these times and see us as “normal” because our pain is invisible. What they can’t see is the pain, mental and physical, we are pushing down just to be there as well as the price we will be paying later that day and night. Understand, I am not playing a pity card. I am just trying to share what our day is like. It might help you understand why we try to do thing in spurts, an hour or two at a time.
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 CRPS patient, but trust me, they can and do. Some people can even have a light breeze cause them excrutiating pain.
I know what you are thinking, “that’s crazy”. No. That’s CRPS.
If you think it’s crazy think how a patient, who knows nothing about the disease, feels when they start forgetting things. Or when the slightest touch, 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, makes fun of them, and disbelieves 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. CRPS pain is ranked higher than any other form of chronic pain known today.
CRPS 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. (click on the link above and scroll down to the 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 CRPS is ranked a whopping 42!
The only thing close to CRPS pain is the amputation of a finger and that is quick, CRPS is 24 hours a day, 7 days a week. 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 CRPS 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.” 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 say”. That is what CRPS 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. CRPS 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, volunteering and trying to better our community, 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 enable you 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 CRPS 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 CRPS. 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 in addition to the CRPS. 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. Sometimes it may be just too much for us. Because of this disease, you have to change your whole way of thinking to include doing things in moderation. For many people 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 into our daily lives is that many are bothered by vibrations and/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 where the organ music can be very painful, my Masonic Meetings, going out with friends, etc. If there are a lot of people making noise, even if it is simply singing or clapping, a baby crying, it can cause our pain to spike. Visits sometimes have to be cut short due to all the regular noise that is typically generated, or we just have to go off to another room; and 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 CRPS limbs, after all kids will be kids. I was lucky when I was a teen with CRPS 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 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 CRPS arm. Why, even their own siblings hurt them or taunt them about their CRPS, as if it is something they have a choice in. Who would choose CRPS? 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 CRPS/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, ou 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.
• CRPS is the most painful form of chronic pain that exists today and currently there is no cure.
• 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 CRPS, and/or other forms of chronic pain, show 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. I spent a few years being stuck in bed unable to walk. I spent well over a year being confined to a wheelchair (which they told me to buy not rent) and then had 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 CRPS 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. Yes, this is a very difficult disease and every case is a little different but don’t let others convince you, not even your Drs, that your case is so unique, “the worst case they have ever seen”, that it makes you throw in the towel and just give up. FIGHT!
I am blessed in that currently, I am doing better than many other years. That doesn’t mean I am “cured”. I take my pills each 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 CRPS and partly due to the CFIDS and 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 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 minimized. 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 CRPS/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 didn’t think about it so much I wouldn’t hurt so much? Hmm, let me give that a try. dum – dum – de – dum – de – dum dum dumb dumb dumb. Nope, didn’t work. Shocking.
No, seriously, the fact is that for us, CRPS/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 CRPS 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 CRPS. 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 CRPS/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 accept that they are real; both the patient and the loved one in the case of the chronic pain patient. Thanks for listening/reading.
Peace, Keith Orsini
2 thoughts on “Letter To Families and Friends of CRPS/RSD Patients.”
Thank you so much for sharing, I also deal with Raynauds, Sjogrens, Fibromyalgia and others. I moved to another state and the don’t want to continue my treatment, they even too my vitamin b12 shots. Finally after 2 years I found a good doctor but I must start from 0 so medicaid pays for the treatments. I in so much pain I can barely go to the bathroom. I hope I get some help. I hope everyone does
I describe my progressive crps as bees stinging me 24/7. I digress in 2008 I developed crps which was during a divorce. CPS ordered a psychiatrist to ignore the diagnosis which cause a false extreme ptsd diagnosis. I spoke with the psychiatrist later who in the time in wa state was the best military referral how she could not tell the difference between ptsd and crps. She asked if I was a state case and stated she was ordered not to accept the prior medical facts. I was left homeless and now childless. I restarted my life but cannot work, but denied social security 5 times. I live off my youngests social security and food stamps. I am trying to fight false information in regards to my hemophilia son, but the doctor claims I have no right to even the records in violation of the parenting plan for 15 years now. The sacred heart providence lawyer even refused to look at my paperwork. This doctor is the head of the medical team for the entire branch of the childrens hospital part. I am going to try again to atleast access the records. I am aware I have illegally not seen this child for nearly nine years, but he is still a minor. My goal is to meet with the attorney since they seem to be claiming that I am mentally ill. I have full custody of a 14 year old 4.0 student with complex medical issues and nery a cps at my door in regards to her care. I am frustrated but trying to rein in my emotions, but this time talk even if medical in hematology try to shut me up. The one apology was my denial of hemophilia care for over thirty years. and no I am not mentally ill, I just have crps.