Category: RSDS General Info

Written by Devery Mills for the RSDSA blog.

How and when did you develop CRPS/RSD? What has life been like since your diagnosis?

I have been a nurse for many years and worked in the ER and Cardiac.

In 2007, I was seen in the ER with a nasty stomach bug.  Traditional medications were not working so I was given a different nausea drug two times. It was not given correctly according to pharmaceutical instructions and it caused significant damage to my right arm. I suffered thrombophlebitis and infection. I was in the hospital for a week on IV antibiotics and consequently the beginning of my journey with RSD.

My husband and I lived on a 43 ft boat for 12 years and I worked all over the state of Florida as a travel nurse. Little did I know my life was going to change overnight.

The first three months after the injury I was in a deep depression. I could not work, I was in extreme pain and my lifestyle was about to change also. I cried every day. I mourned the loss of my career and lifestyle. I truly did not care if I lived or died. I did not eat, take a shower, cook, or do anything that I enjoyed. On top of this, trying to get treatment was next to impossible because I lived in a very small place where anything outside of a cold or stitches needed to go to a “bigger hospital system.”

I was diagnosed using an EMG, but what treatment I did get included the typical Amitryptiline and neuro/psych medications. I found out that I am hypersensitive to all of these medications as they had severe side effects. I lost who I was. I stumbled around most of the time not even being able to tell you my name. I even did my share of sleep-walking and living on a boat. I do not have to tell you how dangerous this was. I nearly suffered a divorce as my husband had no idea how to help me and my behavior became more bizarre by the day.

Finally, after three months I had a moment of clarity when I realized I did not have to live this way. I went off the medications and my head began to clear enough for me to make some decisions.

In 2009 my husband moved us to our home state where we bought a house and began a new life. I found a primary care physician who listened to me, researched how to care for me and began the process of finding adequate treatment. This doctor saved my life.

I have since learned that no matter how bad I felt or how much pain I was in, I had a choice. I could choose to lay in my bed or I could get out of my bed and face the day. I opened a homeless organization and spent 10 years helping the less fortunate.

Today, my husband and I have moved back to Florida where we live in a little park and I have found an EXCELLENT pain management group and primary doctor. I live with the mindset that there is always someone worse than me and that nothing I do is going to make my condition worse. I use diversional activities to keep my mind busy. I also meditate and have taken my diet captive. I also incorporate many natural products that help me every day.

What is one thing you wish those without CRPS/RSD could understand.

CRPS/RSD is one of the most painful and challenging diseases known to the medical profession.  The constant burning/cold feeling with the deep bone aching pain is like none other.

Over the course of time, sufferers become experts in putting on “the game face.”

The world sees the game face and assumes that there is nothing wrong or that we are even “faking it.”  The world who does not live in CRPS pain is absolutely incapable of comprehending its torment. I wish these people would stop passing judgment. The stigma attached to chronic pain sufferers is beyond belief.

What advice would you give to newly diagnosed Warriors?

I HEAR YOU and I KNOW your pain.  Slow down and take charge of your healthcare. Do not be bullied or settle for less than…

RESEARCH EVERYTHING because knowledge is power. Find a GOOD pain management group and be honest with them about your condition and your needs.

Do not be afraid to try new things. There are amazing natural products and therapies. Nothing works for everyone, but you just might find things that work for you.

Do not be afraid to stop taking a medicine that does not agree with you. Listen to your body and do what is best for YOU.

Hold your head up and do not be ashamed of your condition. You are one of the strongest people you know. Keep fighting. Never give up and perhaps you will be one whose condition goes into remission.

What advice would you give to Warriors who have had CRPS/RSD for many years.

As a person who is a 12 year veteran, I would encourage you to never give up. You are valuable to many and you are loved. Medicine is changing every day and perhaps there is a cure on the horizon. Change your routines and do new things. Do not get too comfortable in the box. Rest when you must and listen to your body.I send you blessings for healing and comfort.

What activities or treatments have helped you find temporary or long term relief?

My medications include:

Lasix, Gabipentin, A compound cream, Robaxin and low dose Oxycodone.

CBD and Ashwaganda are a couple natural products that I find effective.

I have not benefited from traditional therapies and stimulators were not an option in my early days.

I am currently investigating Ketamine and Scrambler therapies as a possibility.

My pain ranges from 4-10 depending on whether I am in a flare.My flares have become less over time and my pain has become mostly stable at 4-5 average. My pain is mostly cold and I am fortunate not to have the “fire” aspect of the disease, but the cold gets pretty rough.

Anything else you would like to add?

I would like to encourage all of you who are struggling daily with the knowledge that we are all in this together.  Through our support of each other through groups and individual friendships we nurture and heal each other.  We share our stories and we vent our frustrations and nobody will understand like we do.  We are Warriors!!  Many blessings.

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Written by Jeannette Pello for the RSDSA blog.

How and when did you develop CRPS/RSD?

 

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Written by Barbara Schaffer for the RSDSA blog.

My name is Barbara Schaffer. I am 70 years old and have had RSD for 32 years. It started with a stretched brachial plexus and spread through my entire body.

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Written by Patti Sauer for the RSDSA blog.

I broke my tibia sometime around January 2018. After walking on it for four months, enduring several misdiagnoses, and fighting for an MRI, it was confirmed in April that I had a stage 4b break with edema in the bone marrow. This is the worst kind of break and worst stage of a break.

Written by Kathleen Fechter for the RSDSA blog.

How and when did you develop CRPS/RSD?

I hurt my knee at work and my CRPS developed from that injury about 5-6 years ago. I was misdiagnosed about three times.

What has daily life been like since your diagnosis?

Everyday was limited, I could not walk to the mailbox on my own, and if I did it was a good day. My husband and I could not really enjoy our time as newlyweds because each day was based on my pain levels and what I could handle before needing to go back home. I was able to hold a job, but I was usually on strong pain meds until they did not really work for me anymore. More than half the time I wanted to crawl out of my skin.

What is one thing you wish those without CRPS/RSD could understand?

I wish people would try to be more empathic and realize that this kind of pain is nothing to wish on anyone. I still do not think my friends, the ones who are suppose to be supportive, really appreciate what I went/am still going through to get my life back.

What advice would you give to newly diagnosed Warriors?

Do not be afraid to ask hard questions and think outside the box when it comes to doctors and treatments. Keep stress levels as low as you can, control what you can, let go of what you cannot. Get to know your body again. Do not be afraid to advocate for yourself.

Make yourself a “therapy corner”: a place for a warrior to distress, keep a heating pad nearby, a favorite blanket, etc. Basically all the things that bring you comfort on the really bad days.

What advice would you give to Warriors who have had CRPS/RSD for many years?

Do not give up, as impossible as it may seem, do not let the pain win. I let it control my life for too long. I had to find a way to motivate myself to take back my body and not let the pain ruin me. One may never be the person they once were, but there will be a new found strength and better life ahead.

What activities or treatments have helped you find temporary or long term relief?

I have been in remission since January because of Dr. Damon Orlando. I received The Calmare (aka the scrambler) Treatment and have been pain free since with few “flare scares” since. I also changed my diet to watch out for foods that would be more inflammatory. I now take the train and walk to work. In fact I now walk about two miles a day. I have been able to stretch and do normal household chores without it knocking the wind out of me.

What else would you like to add?

This website I made has been the only place I can put into words what living with CRPS is like: kathleenpadilla89.wixsite.com/takingbackcontrol

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Written by Nicole C. Shelton, J.D. for the RSDSA blog.

How/when did you develop CRPS/RSD?

In 1990, at the age of 15, I went in for what should have been a routine arthroscopic knee surgery to repair a torn meniscus. When I went in for my two day post-op appointment, the area below my left knee, literally the entire leg, foot, etc., was ice cold, swollen and shiny. At that point in time, RSD was not well known (I think the statistic I was given was that I was one in 500,000). But, my surgeon as a kick-butt surgeon who just a few days before surgery read an article on this new phenomena.

He explained that the nerves in my knee were telling my brain that anything below my knee essentially didn’t exist. While that may have been a reasonable explanation at the time, we know a lot more now! My recovery should have been six weeks; but, due to the RSD, it was six months. I was put on Procardia since they thought a blood thinner would help but we really didn’t know how to address the pain, swelling, redness and shininess.

Even though my surgeon’s explanation and treatment of the RSD was not what we do now, I am forever grateful to him for having read that article about this “new” phenomena. I would have been misdiagnosed and likely lost my leg below the knee. I’m relieved that now it is unusual to find a doctor who doesn’t know about CRPS. An ER doctor friend of mine said CRPS is part of one of their rotations in med school. We have to have medical providers that understand CRPS/RSD is real, how to treat it as best they can, and how to be empathetic to the Warriors who are plagued by it.

What has daily life been like since your diagnosis?

So, I have to frontload the readers that my CRPS/RSD is not like most of what they are probably experiencing. For me, RSD still is the more accurate description of what I experience: my pain flare ups and cycles are a response to an injury, not something chronic. I attended a CRPS fundraiser in NYC a few years back and was shocked by how impacted some people are by their CRPS. I do not know if anyone else experiences RSD as comparatively mildly as I do (I certainly haven’t met anyone yet!) but I hope if others like me are out there, this helps!

Up until a couple years ago, my RSD has only occurred when I have an injury: a sprain, a broken toe, torn ligaments (hey, I refuse to let go of my active lifestyle so injuries happen!). I have had 5 surgeries in my life, all due to injuries not the RSD, and am absolutely vocal about my RSD. I make sure surgeons are fluent in CRPS/RSD and have now learned that nerve blocks prior to surgery really help. I can always tell when I have an injury that needs rest or attention because I feel that high level of pain, the swelling is disproportionate and the area gets shiny. My flare ups have tended to be intense but brief, and only in the area around the injured body part. And yes, they are like fire: sometimes smoldering embers, sometimes firestorms, it just depends on the day. There’s no rhyme or reason to how it presents nor how long it lasts.

As I get older, I do wonder if my RSD is evolving. Two years ago, I fell down a couple marble stairs (don’t do it!!). Most of the injuries have resolved, but I still have an ECU subsheath dislocation and tear in my left wrist, and now also have ulnar nerve slowing at the elbow and wrist. On two occasions since the injury, I have had debilitating all-over body pain: the first lasting a couple hours, the second lasting six hours and almost prompting an ER visit. I literally could not move because of the pain and nothing helped: I was terrified.

Thankfully, that has not happened since. However, my wrist and ulnar nerve injuries have created a “new normal” in that my wrist is constantly at a level 5 pain, and the ulnar nerve varies between a constant 5-7. Am I happy about this new normal? Heck no! After a lot of mental fighting of this new pronouncement, I decided that it was not doing me any good to hold on to the anger of the new normal (although I still occasionally have a mental, “Says who?!”). I continue to do my normal activities, but I know there is a price to pay: I will inevitably have a pain flare up that will last anywhere from a couple hours to a couple weeks, depending on the activity.

And while I feel guilty saying this for all the other Warriors that are so much more impacted than I am by this horrible thing: I refuse to give up my life for this pain. It does not own me. It doesn’t get to control me. And I will fight it tooth and nail (and have been known to give it an obscene gesture). I absolutely realize that I am so, so lucky to have such a mild form of RSD. And I absolutely give shout outs to the Universe asking it to not have my RSD morph into something worse. It is the one thing I fear most in this life.

What is one thing you wish those without CRPS/RSD could understand?

So I am going to change this one a little bit… The one thing that drives me CRAZY is when you go into a doctor’s office, urgent care or ER and they ask the inevitable question: “So what’s your pain level like on a scale of 1-10?” (yep, I just felt all of you cringe). My answer, because after all I’m there because of an injury or flare up, is “10” or “10+”.

At this point, they already know I have CRPS/RSD so what follows should not ever happen. The NP, LVN or (worse yet, especially in the ER!) doctor inevitably says, “Well you can’t be a 10 or you wouldn’t be able to talk to me” or “you would be writhing in pain.” It is all I can do not to scream, “Pain is my everyday so how would you know how I’m experiencing it?!” (yep, I can see Warrior heads nodding).

Let’s face it, Warriors, this is our least favorite question because, guess what? Pain is relative, especially to the Warrior. We experience pain differently (hello, regional pain syndrome). But we have pain in the extreme if we are going to the doctor about it. Or, as I have had happen, we have had moderate levels of pain for such a prolonged period of time, that we are just exhausted.

So for any physicians or medical practitioner reading this, if you must ask me the dreaded question, please accept my answer. Do not negate it because you have been taught that a 10 is impossible unless the patient is babbling incoherently or writhing on the floor. My pain is real. I’m not making it up because I like going in to the doctor’s office. I need your help. I need your compassion. I need your empathy. I do not need to be dismissed or diminished because you do not experience pain like I do.

What advice would you give to newly diagnosed Warriors?

It is not your fault. It is not just you. Do not read the blogs (sorry!) and do not go searching the internet, not yet. I joined a local Facebook Warriors group and was both humbled and terrified by what others were going through because it is not my experience. You will read things that will absolutely be your experience, but you will read things that may frighten you right now. And you just do not need it: this is a scary enough diagnosis by itself. Just give yourself time to learn about your CRPS/RSD experience.

You absolutely must be your own advocate. You have to be vocal, pushy and sometimes downright hostile. I went in for an ankle reconstruction surgery and put a stop to the whole pre-surgery procedures (as in literally the ones where I was all gowned up, they were about to do the nerve block) because the anesthesiologist was just running through her checklist. I was a medical record number, not a patient, and there was no way in hell I was going to let her do anything to me until she saw me as a person, as someone she could do serious harm to if she did not hear me about the RSD.

If you have a medical practitioner who does not see you as a person or blows off your CRPS, find another. Keep searching until you find the right match for you. I would far rather delay my care to find someone who is going to listen to what I am saying about my RSD than to be even worse off with someone who does not.

Telling others about your experience is hard, not because of what you’re going through, but because people may think you’re crazy. If you say you have nerve pain, people think of Fibromyalgia because of all the ads they see on TV. They do not understand that nerve pain is not normal pain and that it does not just go away when you take a pain med. So for this I say be patient. Keep trying to help them understand. And honestly, those friends who do not get it are the ones I just do not talk about my RSD with. It isn’t that they are trying to be naïve, they just do not get it. And that is okay.

My mom has been with me through all of this, from 15 when I was diagnosed to now at age 45 (wow, 30 years ago!). She still does not “get” it, but she is not one to judge. She listens, she’s empathetic. And, yes, sometimes she tells me to just suck it up and get over it, but it is usually when I need to get out of my RSD pity party and get back to living me life. 🙂

What activities/treatments have helped you find temporary/long term relief?

So, again, my RSD is different than most. I have not met anyone else with RSD like mine in a mild form. A TENS unit will help with the severity of a flare up, but is not a long term solution. It just makes it more manageable. Acupuncture is the only thing that consistently works to decrease both the level of pain and (more importantly to me) the duration of the pain cycle. I do have to have it every week, though, in order to keep the benefits. This is not always realistic, though, with work schedules and life, but it definitely helps. Pain meds do not help, though.

What else would you like to add?

My heart goes out to all the Warriors. You are amazing and loved. Even though I know it seems grim, please don’t give up.

We Bleed Orange Together and Will Quench the Fire!

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Written by Jeff Schwartz for the RSDSA blog.

How and when did you develop CRPS/RSD?

I do not have CRPS, but my wife battles it. She was diagnosed 2015, but had been battling it beforehand. We believe it resulted from an injury in 2003.

What has daily life been like since your diagnosis?

As her caregiver, it has been difficult. I have watched this vibrant woman who enjoyed doing things spend days in bed, trying to overcome tremendous pain. When there is a “good” day, we try to make the most of it. We have a saying that works for us: One day at a time.  

What is one thing you wish those without CRPS/RSD could understand?

This is an invisible disease most of the medical community doesn’t understand. The Pain Warrior is not faking, is not lazy, is not seeking attention and is not mentally ill. This is a real physical disease that desperately needs to be cured.

Do not abandon your loved ones. This is not a cakewalk but if you love them, truly love them, you will be there for them.

What advice would you give to newly diagnosed Warriors?

Do not give up. You never know what tomorrow brings. You are not alone.

Anything else you would like to add?

My wife tells me I am sometimes a bigger advocate than she is. I use what opportunities and resources I have to bring awareness to others.

As an example, I am a well-known whiskey reviewer, and five years ago I created a #30DaysofBourbon Challenge that runs every September for Bourbon Heritage Month. There are thousands of participants and it continues to grow each year. I use this Challenge, where I post daily on Facebook and Instagram, to give a shoutout to the RSDSA and suggest participants donate $30 or more to a charity of their choosing (with a suggestion for the RSDSA).

It is my deepest hope that one day, there will be a cure, and will be generic enough to help everyone battling RSD/CRPS.

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Written by Emily Baddorf for the RSDSA blog.

How and when did you develop CRPS/RSD?

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Written by Shannon Schildt-Leidig for the RSDSA blog.

Anyone who knows me knows what a huge lover of music I am – and that any time I am in the car it is either on the Broadway or Classical channels; though, when it is football season I tend to listen to ESPN. However, there was a day when I was in the car and the programming on the channels I normally listen to did not fly so I turned to a local radio station and I heard this upbeat song and I liked it (major rarity!) – but I did not find the name of it – so after I got home I went to my friend Google and looked up the radio station’s playlist and found the song and immediately went to iTunes and found the song – and oh my gosh it was the perfect tune if ever I have heard one – “Don’t Give Up on Me” by Andy Grammer from the movie Five Feet Apart. This song packs such a powerful punch that we should not give up ~ no matter what we are going thru, in the good days, bad days, storms with raging winds and pounding rain to windy biting cold days with snow coming at you, days when you literally do not know where to go or who to turn to – and you feel like giving up, don’t – as there is always someone to stand by you and help pick you up and fight your battles with you!

I can honestly say that in my almost 30-year battle with this beast known as RSD, now known as CRPS, the past two years have been pure HELL – no other way to say it or to describe it.  The days become nights and nights become days ~ I have no idea how to navigate this course of life anymore as my life as I knew it has been turned upside down and inside out – with so many twists and curves along the way – I literally feel as though I fell down a rabbit hole while on the way to a tea party and got caught up in an eye of a hurricane not knowing if I was going to come out. I feel so bad for my parents and sister and those friends who have stuck by me as nobody knows what to say or how to be. There were many days I wanted to GIVE UP. My parents and sister would not let me nor would some very special people in my life like my dear friend Marilyn and her husband Bill and my amazingly wonderful friend Laura. These folks have stood by me through thick and thin, wind and rain, and through fiery hellish nights. They would not allow me to give up. And why? They know what it is like to battle and fight, as they have had their own share of medical battles, but they fought their way through the dark times and helped me fight too.

I will never forget the night I met Marilyn as my church choir was getting ready to warm up for their Christmas cantata and a member came to me and said he had a friend who had the same condition I had. I was like knock me over with a feather – really?!  So prior to warming up the choir we talked and I said that I would be willing to do anything to help them battle this beast. That night began a 13-year friendship with Marilyn and her husband Bill. When they say they get it and understand they mean it as they are going through this same RSD storm. We talked by email and phone and then Facebook though never meeting each other face-to-face until a few weeks ago. It was truly an extra special day when we finally met as we have walked the RSD journey together. They have such a special place in my life and in my heart.

Another special person who has weathered her own share of storms is my good friend Laura. We worked together and it was so good knowing there was someone at work who knew what it was like to have a chronic condition and how there are times you have to adapt to life rather than life adapting to you, knowing you want to be with people your own age and being out; however, your body betrays you and keeps you from doing all that you want to do. You literally become a prisoner of your own body. My latest saying is, “my head may say go, but my body says no”. Laura gets that and understands all too well as she has been battling diabetes for years and has had a kidney/pancreas transplant. Laura gets it though and has always stood by me, even though there is a distance in miles there is no distance in our friendship. We pick each other up when we are down as we truly get it!

I am thankful and blessed to have my parents and sister in my life. I am also very blessed to have many people in my life who have stood by and helped me. Laura as well as Bill and Marilyn have stood by my side and have not let me give up, and that is a huge part of the battle.  When you feel like giving up, listen and sing out loud to the song by Andy Grammar and take the words to heart!

“Don’t Give Up on Me”

And I will hold, I’ll hold onto you
No matter what this world will throw
It won’t shake me loose

I’ll reach my hands out in the dark and
Wait for yours to interlock
I’ll wait for you, I’ll wait for you

‘Cause I’m not givin’ up
I’m not givin’ up, givin’ up, no, not yet (Not yet)
Even when I’m down on my last breath (Last breath)
Even when they say there’s nothin’ left (Nothin’ left)
So don’t give up on
I’m not givin’ up
I’m not givin’ up, givin’ up, no, not me (Not me)
Even when nobody else believes (Believes)
I’m not goin’ down that easily
So don’t give up on me

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