[Russell]

My wife saw this on Facebook and showed it to me. After reading it I thought wow someone did a great job at describing the struggles we endure. If you've got the time read it and maybe pass it on...

A World With CRPS/RSD As Your Constant Companion


I live in a world with Complex Regional Pain Syndrome (CRPS) as my constant companion. While on deployment to assist the Hurricane Rita recovery effort I contracted an antibiotic resistant (MRSA) bone infection (Osteomyelitis). The Osteomyelitis/MRSA and 2 subsequent surgical procedures resulted in the development CRPS -- also known as Reflex Sympathetic Dystrophy Syndrome (RSD).

Physicians don’t know why it develops, but CRPS is a nerve disorder that usually occurs after a traumatic injury, surgery, sprain, fracture, infection or a period of immobilization. CRPS/RSD is said to be the most painful chronic disease that’s known today. On the McGill Pain Index it (Causalgia) scores 42 out of 50.

How does that compare to other types of pain and/or chronic pain conditions?

Arthritis pain is ranked about 18, Non-terminal Cancer pain at 24 and Chronic Back Pain is at 26. Natural labor and delivery of a 1st child is about 35. With a score of 40, the pain associated with the amputation of a digit is comes closest to matching the intensity or CRPS/RSD.

Now, imagine for a few minutes that we've traded places.

Imagine that this is your new world. You begin and end every day with CRPS as your constant companion.

In your new world… the lightest breeze, touch, vibration, movement or exposure to cold causes excruciating pain. If asked, you couldn't honestly tell someone when you last experienced a pain free day, or when your pain level had dropped below an 8 (on a scale of 1 to 10) for any significant length of time (two hours or more).

In your new world… you know it makes your spouse feel helpless to see you in pain and be unable to help. You force yourself to smile, laugh, and hide the pain as much as possible. You face your friends, family and the rest of the world with your mask firmly in place.

In your new world… you wake up in the morning and are unable to use your hands to sit up—they will no longer support you. In order to get up you have tocarefully scoot to the edge; roll off onto the floor, onto your knees—while trying to minimize the vibration to your hands and arm. The fingers on both of your hands are stiff; your dominant hand is locked in a curled position—you now have a claw—the same arm feels as though it has been filled with white-hot coals, while simultaneously soaking in a glacier fed river.

In your new world… when your spouse is home, your 1st cup of coffee in the morning is delivered. You slowly—being as gentle as possible—wrap your hands around it. You’re sitting, grasping your coffee cup like a toddler being weaned off a bottle—but, who cares? You know it will loosen up the joints in your hands a bit.

In your new world… Your spouse is gone, so if you want coffee, you have to make it yourself. The question isn’t the “no brainer” it used to be. You have to decide if the additional pain will be worth it… and if so, while waiting for it to brew; one hand gets a paraffin bath (dipped in hot wax). Your dominant hand and arm will have to wait until the coffee finishes brewing to get some relief since you wear a pressure garment on it 24/7.

In your new world… while enjoying that 1st cup of coffee, you contemplate the day ahead. For every10 to 15 minutes spent on a task, it will take 2-3 hours for the pain to return to the pre-exertion level.

You’ve learned that you have to prioritize tasks and pace yourself. You haven’t learned to accept your limitations, and will occasionally push yourself further than you should when there’s a critical task that must be completed.

In your new world… you’ve always been fiercely independent, often to a fault. You find it demoralizing to ask for assistance with the tasks that you used to consider trivial, like opening: a straw in a plastic wrapper, a single serving creamer or sweetener, taking the lid off a soda bottle; or zipping up a winter coat.

In your new world… instead of “living” a very active lifestyle, you “exist” in a sedentary world where you need assistance with, or are unable to complete, many of the essential tasks of daily life. Dressing yourself unassisted is quite the challenge, and not always possible. Garments with zippers, snaps, buttons, and hook & eye fasteners have been eliminated from your wardrobe as much as possible.


In your new world… your first concern as you review a menu is what you can eat with little or no assistance. You rarely order anything that can’t be cut with a fork because you just can’t bring yourself to ask your spouse to cut your meat for you.

In your new world… you’re seeking a new doctor to coordinate your care—your current physician isn’t on the new insurance provider’s list. As you call around attempting to locate a PCP that is experienced treating your condition, the 1st thing you’re told is that they won’t write prescriptions for pain. Even after telling them that you’re fine with that, you’re all ready seeing a pain management specialist; they still feel the need to reiterate their position.

In your new world… you’ve been on numerous medications for the pain, and have experienced a variety debilitating side effects which have included: loss of cognitive function, inability to concentrate, weight gain, dizziness, uncontrollable muscle movement, tremors, hair loss, elevated blood pressure, etc. There are two things that you haven’t experienced since CRPS became a part of your life…

1. A night with more than 4 hours of uninterrupted sleep; and,

2. A day without pain

In your new world… at an 8 you’re breathing your way through the pain, absurdly grateful that you retained some of the Lamaze classes you took 20+ years ago.

In your new world… an 8 ½ is when the pain is so intense you’re nauseated and not entirely sure you’ll be able to keep yourself from spending a good portion of your time worshiping at the porcelain throne.

In your new world… a 10 is lying on the floor, curled in fetal position, unable to move or speak as tears stream down your face… Knowing that all you can do is lay there and endure. The only alternative is unacceptable. You refuse to give up! In your new world… a 9 is when you force yourself to stay silent, you shift the book you were attempting to read so your face is hidden, tears are streaming down your face, hoping that no one will notice.

In your new world… it’s time for your day to end. You took the sleep aid about 4 hours ago; you’re beginning to feel it try to pull you under. You’ve learned that the frustration of not being able to fall sleep will increase your stress level, making falling asleep more difficult. You lie on the sofa with your back pressed tight against the back; several pillows are wedged around you to prevent your body from shifting during the night. If your position changes, it will cause the pain to flare and wake you up. Your body must have this rest.

In your new world… a brief review of your day flits through your mind as you drift off. You didn’t manage to accomplish everything that you wanted to, but completed what had to be done. You still feel a little guilty, but you force the thought away. You need to rest.

Thank you for trading places with me for a little while. While you spent time imaging yourself in my world, I spent my time remembering what it was like to live in yours. My time in your world reminded me that there’s still hope. I have hope.

I have hope… that as your return to your world, you’ll take with you the understanding that you could substitute Fibromyalgia, Lupus or one of several other chronic pain conditions for CRPS — this would be their world as well.

I have hope… that the next time you encounter someone who lives in my world, that you’ll show them compassion, understanding, and kindness.

I have hope… that you remember how difficult it was to put on that mask, to protect family & friends from feeling helpless. To protect them from experiencing the same devastating effects to their sense of self-worth as we have.

I have hope… that you the short time you gifted me with by trading places, is the only time you’ll spend here.

I have hope… that you remain healthy, happy and whole.

I have hope… that my world never becomes yours.

© 2011 Samantha Adcock/NCCRPSRSD/Hope Over Pain

[alt1268]

Jimbo,

That is a good description for RSDer's with hand arm RSD.

[Russell]

Originally Posted by alt1268

Jimbo,

That is a good description for RSDer's with hand arm RSD.

Hi Alt,
I thought it would help in communicating the way most of us feel...

[alt1268]

yeah it does.

Originally Posted by jimbo

Hi Alt,
I thought it would help in communicating the way most of us feel...

[LIT LOVE]

It is a good description, and some of those issues still apply to me, BUT it also sounds more like me before my pain meds were adequately prescribed. If you are living in level 8 pain or Higher all day long, then you and your doc have not yet worked your meds out IMO. You get over the embarrassment of needing help, you learn to adapt, etc. Remission is our goal, but you don't have to live in agony until that day comes. On a normal low functioning day, my pain is more like 3-7, and when it starts escalating I have breakthrough meds and other coping tools.

[angelbear]

this is me 24-7 and even with the pain medications. my scs is broken and has to be replaced. and I am in between pain doctors. I hurt so badly, I have whole body RSD. I suffer everyday and night. does anyone have any ideals to help me..

[catra121]

Originally Posted by angelbear

this is me 24-7 and even with the pain medications. my scs is broken and has to be replaced. and I am in between pain doctors. I hurt so badly, I have whole body RSD. I suffer everyday and night. does anyone have any ideals to help me..

What sort of things have you tried so far?

This description is very good...not everything is EXACTLY the same for me but I have experienced everything in there at one time or another in the past year. I agree with Lit Love that this is a picture of someone whose pain is not under control (though there are many reasons why this could be the case).

My pain is pretty high on a regular basis...daily it's between 7-10 on a scale of 1-10...it's been a LONG time since it was any lower than a 7. Sigh...we're working on it though...and after months and months of it being a constant 9-10...7 seems heavenly by comparison. But I'm not really currently taking anything for the pain...so that probably has a lot to do with it. I had to go off all my meds because I had a mild case of seratonin syndrome...that's what you get when you let docs just toss you on a bunch of meds all at once and start and stop you on meds without any tapering. Never again. That means the current process of getting me back on meds that help is a slow one...but we'll get there. The tens unit is the only thing really helping with the pain...don't know what I would do without it.

But also helping are heat, physical therapy, changing my diet (I think...not sure), and having found things that I can enjoy even when the pain is really bad (to help me take my mind off the pain).

I think anytime we can find something that helps us describe the pain and the loss that comes with RSD, it's a good thing. A coworker of my dad's sent him a link to a video about chronic pain as a diagnosis rather than a symptom. The presenter in the video explained how real chronic pain is and demonstrated with a feather...brushing it up and down his arm. He asked the audience to imagine what it would be like if doing something like that felt (instead of like a feather) like a blow torch being run up and down their skin (he had the blow torch in his hand to get the point across). Not that my dad didn't believe me before (my family is very understanding) but this video really put it in terms that he could understand and helped him really grasp how awful it is...and that barely touches the surface of how RSD affects us because it's really not just about the pain but also the loss that we experience in terms of the life we had before. This does a good job explaining some of that.

[Russell]

I'm going to see my neurologist next week to work something out...

[LIT LOVE]

It's not as if I rely on pain meds alone. I've posted ad nauseum about what else helps me.

The strongest pain meds aren't always the best options. I only used opiates after YEARS of "sucking it up" so it's not as if I think opiates should be the first course of action for anyone. But, if you're living in constant misery, I would keep working on a med combo until I got decent relief.

As soon as I engage in most activities my pain starts to escalate. So, it's a constant balancing act--doing enough to prevent atrophy, keep my range of motion, etc., BUT not so much as to cause severe pain, or swelling.

I spent 3 hours soaking in the tub with Epsom Salts in the middle of the night, while doing breath work last night recovering from being driven too far a distance.

I'm not in anyway trying to discount what she wrote. I'm just saying that after 10 years of having RSD, I've experienced what she wrote to various degrees over the years. Until you've tried EVERY combo of meds in varying doses and at different times, you still have a great chance at significant relief.

My meds are the same as they were a year ago, and yet my quality of life is better today. The biggest change has been my diet. I slept like a hibernating bear for years! It was still better than feeling I was being tortured 24/7, but yes, having family members check on me to make sure I was still breathing, wasn't ideal... Following the 4 F's diet is drastic, but well worth it IMO. Another irritating side effect of opiates was severe stomach irritation. But guess what--the diet change fixed that as well...

There isn't one magic formula, unfortunately.
There are a veritable plethora of med options out there, though... And so, as the saying goes, "If at first you don't succeed, Try, Try, again."

[Lisa in Ohio]

Jimbo, this brought tears to my eyes. This is one of the few times when I feel that somebody else has really expressed what I can't. I wish my family would read this or at least research this monster so that they could at least begin to understand what my life is like. Nobody seems to care that it took me three days to make that dinner they all just came in for, or that for every outing it takes at least two days to recover. And then the fatigue is just a whole different topic. Thanks Lisa