A Letter to Those Who Do Not Have CRPS/RSD

For those of you who have CRPS/RSD share this article to help your loved ones understand.

For help for carers visit the How to Help a Patient page.

For “A Letter to Normals” written by a fibromyalgia patient follow this link.

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.

CRPS blogimage quote princess

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 take a little over a total of 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 maybe 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 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, diarrhea, 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 light breeze cause them excrutiating pain. I know what you are thinking, “that is crazy”. 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. (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 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 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.”

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 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 in addition to the RSD. 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. 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, 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 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 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 RSDHope 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 [but even our own families and friends do not 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.

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. 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, I am doing better than many other years. That doesn’t mean I am “cured”. I take my 15-20 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 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 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 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/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.

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/2005-2014).

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

Sign-up and receive a free flare-up toolkit and regular posts and tips on living – and coping – with severe pain and chronic illness ♥

Princess

Gentle hugs x

Share

Comments

    • PrincessPrincess says

      Thank you Lisa, and you’re most welcome too of course. I hope you enjoy this site. Constant pain can so easily take away our light but in spite of the lunacy that is living in pain, the ongoing challenges too, it’s wonderful that there are so many supporting each other through it in our ever-growing community, from humble blogs to grand organisations, letting everyone in pain feel less isolated and more hopeful too. Thank you for your kind comment.

    • says

      With almost 35 years in as an RSD/CRPS sufferer, I found your article wonderfully written and am sharing at this very moment. My fellow sufferer I know how strong we try to be for all those we try to give guidance and hope. Please reach out to me in your times of need, there are few that have made it as long as we have nor seen and felt the horrors we have. Truly hope to hear from you or anyone else that needs advice or a just someone who understands,

      Gentle Hugs,

      Lee Rosevear

      leerosevear@msn.com

      or Lee Rosevear on FaceBook, I never turn down a friend request

      • PrincessPrincess says

        Thank you for your lovely comment. Delighted to read that you enjoyed and shared the love too. 35 years makes you one of the bravest souls I’ve ever met and to have you thank me is just humbling. Reaching out can be so hard too but even the strongest need support sometimes so likewise, as much as is princessely possible, here for you too. Gentle hugs and love ♡ x

        • kathy says

          Hi I would like a copy of the letter to the normals. I am a former nurse who was injured on the job and my girlfriend was working with me. We were going around to our patients and making sure that they were cleaned. I knew this pt but he grabbed my arm and twisted it. By the time we were able to get him to let go of my arm it was swollen and black n blue. I was examined in the er then sent to hand drs for evaluation because I developed lump @the base of my thumb. I was told I would have to learn to live with it. Luckily I put up a fight and wanted a second opinion. The Dr I went to told me to calm down he could do a simple or n fix my arm. The residents wouldn’t listen and pinched the plaster splint to tighten. By Fri am I am calling because my fingers were swollen n turning blue. I kept telling them I am a nurse n mom n emt. When the residents changed shifts the new Dr wanted to see me asap. When he saw my hand n me crying he took the brace off supportted my arm as much as we could.The Dr who did the or made me come into the office. He questioned me about calling when I started to get the swelling I was told that I probably would have numbness in my arm and more than we expected. I was diagnosed with rsd before I was 6 MONTHS post op. SInce its workers compensation I had to fight for the therapy n went back to work in a special brace. I think I was there maybe 6 weeks and had new nurses was ‘re-injured with 5 other nurses in the room. I now have a plate n screwsin my wrist. I have both cervical scs n morphine pump even with all the meds most of the time I can not do much. I had to go on a plane nthank god I sleep then they meet me with a w/c to take me where I have to go for the next plane. My son was 4 when I was hurt. In 7grade he fought every day to stay home. I finally found out why. HE WAS afraid of coming home n finding me dead. My plane trip was to make sure that if something happens to me she is notified n will take care of him for me. She is his godmother n my best friend. I have a lot of information on rsd, fibromyalgia, chronic fatigue syndrome n my asthma has developed into cops.If anyone is interested they can leave me a message @ 856-649-2523 or kmp807@gmail.com. I hope everyone is having a good day and thank for letting me vent

          • PrincessPrincess says

            Kathy, you are always welcome to vent on here only sad to hear of such inhumane experience. With RSD/CRPS being so severe, so extreme and intense in its pain, it’s beyond even that of the medical professional’s understanding. ER is also a place where so many frequently exaggerate and that of course works against those of us who are in such high levels of pain. I am so saddened to read of your experience. Especially when, as with RSD/CRPS, the initial months are the most vital. I would still advocate taking vitamin C, simply because the research seems to suggest that this reduces spreading and acceleration of the condition. The finest way is to up your intake of vitamin c-rich foods, so strawberries, blueberries, mango, citrus etc. as so many supplements are filled with junk. Feel free to use the contact form to send anything you think would benefit others in our community of pain princesses, princes too of course 🙂 I am so sorry about your son and hope that things are and will continue to improve. The most recent CRPS post includes GMI and brain training, which is at the top of the list outside of physic/gentle, mindful movement for helping your body heal and lessen the loop of symptoms. Feel free to comment and contact any time. Wish I could wave a wand and banish this beast from us all and for good. ♥ x

  1. says

    Good web site you’ve got here.. It’s difficult to find good
    quality writing like yours nowadays. I seriously appreciate individuals like you!
    Take care!!

  2. Alison Warren says

    Thanks for sharing this, it describes how we feel daily. You’re so right nobody understands unless they suffer as we do. I wished so many times that I could’ve responded to so many who’ve questioned our disease. God bless you and your family. Sending much love and gentle hugs.

    • PrincessPrincess says

      You are so welcome Alison, and thank you for your kind comment. The disbelief is one of the hardest parts of CRPS. It’s so beyond normal understanding, that it’s frequently brushed off because ‘it can’t be that bad’, but it is, with far too many questioned, disbelieved and doubted. I hope this site offers you a little comfort, and strength too from connecting with others in our community of shared courage. ♥ Sending much love, ever-so-gentle hugs, and blessings to you too. ♥ x

  3. Faith says

    Thank you for great website.. My name is faith gregory I has be pray all nite an fine you site 430am.. I am servivor of acciden that resull in TBI an right leg parlyse affer I wake coma exac 11 year ago lass week.. I has rsd/crps for almoss 10 an haff year.. In decemer 2014 I fall an brek my parlyse femur..hip..an pelvis an has major sergry.. I am in endless flare up for lass week an keep try to force mysell to stay alive.. Lass nite I lock mysell out my home with my journal an my prayer thots for other so I not take all my medcine an go home to heven.. You website give me extra enrgy to keep on fight for copel more hour an live threw the pain.. I am a prayer warrior but lass nite I am juss so exhass to fight an battel my body.. Lass year my husban was remoo from my home w.protechun order for domestic vilence an the divorse decree no offishul yet.. I has a wonder full psychology Dr who understan an suppor my heeling an remine me I can no die an let the man I marry win by kill mysell .. I keep my sell strong for fine joy in I am safe.. I am free of abuse.. I am alive.. My mom an doctor think I am wonder full an a princess.. I say mysell I am a princess of the one true king evry day.. (Some time many time a day juss to give me strong corage) so when I see you name in my serch I no I muss open you website .. Be disabel an chronic pain is no one choice.. Abel body pepel no abel understan the battel we fight juss to live an TRY has some qwalty of life.. I so look for the simpel small tiny peece for joy to give me strength to battel this jorney.. You website make me fine my peece of strong help for today… Thank you to share a peece of you..you body..you battel..you information with the world.. I will keep you in my prayer for you pain an for joy..comfort..blessings an peece to surrond you…
    Thank you to share you fire from pain.. it ignite the spark of hope I need to get threw lass nite an remine me we is no alone.. I do my bess prayer for other when my body is burn..throb..spasm becase it distract focus off me.. I is True prayer warrior becase as we all relise we is in body pain a great amont time.. I will use you website to educay an inform friens & famly .. Thank you agan
    From one princess to other princess
    Gentle hugs back xoxox Faith

    • PrincessPrincess says

      Thank you for your kind words, blessings, prayers, comments, Faith. So glad you to have you here. So much comes from simply knowing we share the same battles and challenges, and are not alone in this. I sincerely hope you continue to find strength, keep going, and find that peace in face of it all. Gentle hugs and much love from one princess to another. ♥ x

  4. Emily says

    Thanks for writing such a greag letter, i myself have had RSD for about 14 years now. This is along with a whole huge list of other complications one of them being fibromyalgia, arthritis and the list goes on. I myself had a spinal cord placed, moved twice and now removed. I still have issues with getting my family and friends to understand. Expecially now its getting to the worst time of year for me ,well its been the worst since ive had this almost every year. I know my friend’s and family get upset with me because they think im complaining about this to much or i just talk about it to much. Fact of the matter is its not even as much as i could. I havent had a pain free day in 14 years and im only 24! I really wish people would understand more. I doubt but maybe one person i send this to will actually read that. Ive tried to teach my fiance for the last 9 years that ive known him, but he himself wont even read this. Its hard, i should not be this way. Im 24 and have been trying to get disability since I was 21 years old. If i would of never started working im sure id have it already but i wanted to try. It wasnt me completely telling me that I couldnt work, it was my Dr. , who has even wrote a few letters to disability office. I still hate when my fiance says youre just lazy, quit being a baby, and other hurtful things. But if there is an email i can contact you and talk to you or someone else who understands me that would be greatly appreciated.
    Thanks

    • PrincessPrincess says

      Emily, it saddens me to hear that you’re so surrounded by disbelief and doubt instead of support, accusations instead of the actual, proactive, and compassionate understanding you need. You’re already coping with the most painful condition known to medical science, and coping so well. I completely understand the need to try to work (and did the same myself). Hold onto that inner fire, and strength. Know that you’re doing amazingly despite all odds being against that, and certain in spite of the lack of support. Though I’m sadly too limited, and try to focus on what helps the most people before running out of spoons, I do urge you to connect with support groups on Facebook for example, as there are some amazing CRPS advocates running equally amazing groups on there. Twitter also give support to so many. Stay strong but don’t be afraid to allow yourself to be vulnerable too. Even the strongest need support sometimes. Gentlest hug ♥

  5. Sherry Gilham says

    This is one of the most compassionate, informative, not to mention kindest sites that I’ve come across since I’ve begun scanning thru the RSD/CRPS forums…I wish I had the guts to print this out for my family who should be my biggest support system but needless to say, for whatever reasons in the past 10 year (nearly) that I’ve fought this monster, so much has changed in my life and I truly believe even tho both my daughters being RN’s…doesn’t make them the most sympathetic of all persons to expect to understand. So I live alone; work diligently on staying as strong as possible…at 55; not so easy any more…I have 5 grandchildren; one who is 5; Cooper – who will look at me with more compassion than any adult in my family, ask if I’m hurting again, I tell him “Yes, I do Cooper”…I’m sorry. And out of the mouth of babes he says “It’s ok Mi=Mi,, I know you hurt so bad but you are the strongest lady on earth”…imagine that. In any event thank you for your site; and for so eloquently putting what I seem to go thru on a daily basis…my RSD is in my right arm, hand, shoulder, neck, shoulder blade, and awful awful awful in my right ribs now. Thanks again just for listening and….for being here.

    • PrincessPrincess says

      Sherry, thank you SO much for your beautiful words. Touched, truly, though more so by the compassion and love of Cooper. That’s adorable! So beautiful. The understanding, openness, and innocence that pours that compassion and love to you, I’m thankful for because you deserve that, and I agree with him, you’re one strong lady! ♥ Sometimes those who know us as always strong (esp. RNs or other relations in medical professions), can give us about as much empathy as a headmistress but in that cruel to be kind way, they forget we too are vulnerable human beings, who may toughen up and keep going through it all but still need love and support too. So grateful for your grandson, and grateful for your comment. It’s lovely to have you here, Sherry. Gentlest hug ♥ x

      • christine says

        Everybody stops and stares at me
        My two feet are gone but they can’t see
        I don’t know just who to blame for this castastrophe
        But my one wish on Christmas Eve is as plain as can be

        All I want for Christmas is my two front feet
        My two front feet
        My two front feet
        Gee, if I could only have my two front feet
        Then I could walk with you on Christmas!

        It seems so long since I could play
        The pain so bad I only wiggle
        Gosh, oh gee, how happy I’d be, if I could only giggle

        All I want for Christmas is my hands and feet
        My hands and feet
        My hands and feet
        Gee, if I could only have my hands and feet
        Then I’d bake a pie with you on Christmas!

        All I want for Christmas is my two front feet
        My two front feet
        My two front feet
        Gee, if I could only have my two front feet
        Then I could run to you on Christmas!

        It seems so long since I could say
        “Sister, Lay with me and make an angel!”
        The cold you see would now put me in C.R.P.S. danger!

        All I want for Christmas is my hands and feet
        My hands and feet
        My hands and feet
        Gee, if I could only have my hands and feet
        Then I would dance with you on Christmas!

        • PrincessPrincess says

          Christine, I’m so sorry I missed your lovely offering here. It’s wonderful, and you more so for sharing it. 🙂 I know I posted a note saying I was caught in quite the biggest CRPS setback in years, but every chance you missed it, suffice to say every limb was determined to thwart each attempt at connecting with our wonderful community, and though these hands have not returned, yet, she said optimistically, it was just unlucky timing to miss you lovely poem. Lets dance next Christmas (and all the days in between). Bless you. Gentle hugs ♥ x

Trackbacks

  1. […] Chronic pain is always exacerbated by stressful situations and hectic environments. When that pain leads to an altered Central Nervous System (CNS) and central sensitization, hyperalgesia and allodynia mean movement, sounds, bright lights and previously harmless stimuli now cause a severe increase of pain — making a calm environment an essential part of managing that pain. CRPS is an example where the slightest seemingly innocuous sound translates to the fiercest pain. […]

Leave a Reply

Your email address will not be published. Required fields are marked *