My Story: I Can Finally Explain How CRPS Feels

My Story: I Can Finally Explain How CRPS Feels

By Beth Stillitano.

I am always trying to explain to people how CRPS feels.  It is a very hard concept for people to grasp.

People who live with CRPS describe their pain as sharp, burning, stinging, stabbing, aching, and throbbing.  I generally respond that I feel my body is on fire; as if someone has replaced my blood with ignited gasoline.  I guess that is hard for non-CRPS suffers to imagine.

A few nights ago, I gave myself a pretty bad burn when I touched the oven rack pulling out dinner a 425-degree oven.  My skin blistered immediately producing a lovely second-degree burn.

Beth Stillitano

As the top of my skin heated up and continued to do so for a couple of hours, I realized – I can finally explain CRPS.

The horrible painful feeling you have for the short while on your skin after really burning yourself is what I feel every moment of every day inside my knee.  My knee is always on fire.  When I am in a pain flare-up, it is the equivalent of maybe breaking a bone at the same time; it is just added pain to what is already constant.

One of the biggest complaints, besides the pain, you will hear people with CRPS report is that is so hurtful and upsetting when others say “You look great.  You are wearing makeup, jewelry, you must not be in pain today;” or “You are smiling, laughing and out with friends, your must be having a low or no pain day.” Or even worse, people may think that you have been lying about your pain levels.

What “healthy” people do not realize is that I have made a choice.  No matter what I do, I am going to be in pain.  I can crawl into bed and cry all day or go out and put on a smile and face the day as best as I can.  Either way, I am still going to be in the same amount of pain.

Even on my highest pain flare days, I am sure to do two things: I get out of my pajamas, and put on something comfortable (lounge pants, sweats, etc.) and I will leave the bed and go to the couch.  I force myself to do these things because it changes my frame of mind.  I refuse to be a victim of this disease.

CRPS is the “suicide disease.” People are not meant to suffer in such extreme amounts of pain all day.  Having support of family, friends, the medical community, and the general public is so crucial to our fight against this cruel disease.

I am sure it is hard to understand completely what we go through on a daily basis.  Trust me, it is hell.

Beth Stillitano has been fighting CRPS for 20+ years.  Her family established the annual Fight the Flame 5k to raise awareness and education about CRPS in Charlotte, NC.

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Authored by: Beth Stillitano

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This is really relatable Beth! I’ve explained my lumbosacral adhesive arachnoiditis as standing in a pool filled with ice, while inside someone is pouring molten lead. My health problems are caused by landing on my sacrum (tailbone) at 70mph, which caused immediate Cauda Equina Syndrome and eventually atrophied lower leg and calf muscles. I spend a year in a spinal cord clinic, and burning, gnawing sacral pain has been my fate. This worsened, possibly because of ESIs while I was in Physician Assistant school as I couldn’t sit upright. The injections helped for a bit but may have worsened the underlying issue, lumbosacral adhesive arachnoiditis. On top of that, I have a T4 hemangioma, most likely caused by the skydiving accident. This unfortunately caused central neuropathic pain syndrome. My body is on fire, and the only thing that’s helped are ketamine infusions. My last week-long hospitalization two weeks ago was so worth it. As soon as the infusion starts, it is as if that fire gets drowsed with gentle, cold spring water inside. Ketamine does not work for everyone though. I’m also very lucky the academic hospital nearby provides the therapy. Also, due to the accident I lost two inches of spinal height, as L5 and S1 crashed into each other and are now naturally fused. I’ve often wondered if the trauma chopper that rescued me was a blessing or a curse. Especially now that I’m aging as I notice a huge increase in pain, starting in my midforties. I’m also single, and don’t even have family in the US. So it’s a very difficult situation. Right now, I’d say, wow I’m glad I survived, but many days I do not. Well everyone, keep fighting the good fight. You can find me as Kaatje Gotcha (my comedy name) on Medium, I’ve written a few essays.

BethAnn

The hardest aspect of having this disease is, the loneliness. I don’t have a home anymore.

deb

I’ve had it thirty years. It’s obvious they want u s dead. I tried my best, I’m tired.

Louella

All I can say is THANK YOU. Well said!

Teresa Burns

Thank you Beth for sharing. That is a very good explanation. I was diagnosed in January, 2011 following a fall on September 9, 2010. The CRPS started in my left knee but it has now spread from my left hip to the tips of my left toes. I am constantly being asked what does it feel like and I am constantly telling them, “Well it changes from day to day and even minute to minute”. But, there is always the ‘background’ pain that never stops; that burning, nagging, skin-crawling pain. I applaud you for not giving in and continuing to push forth and have some enjoyment in life. I have chosen to do the same. My first 2 years I hardly left the house, I cried constantly, and could not dare for anyone to get to close to me. I have also developed a sort of PTSD, according to my doctor, which, presents itself with violent shaking of my body and the inability to speak. It only lasts for a couple of minutes, at the most, but is quiet scary for others to see. Keep pushing forward and continue to practice the smile and the phrase, oh I’m doing okay today.
I do also want to mention Calmare Pain Mitigation Therapy, it has been a Godsend for me in helping to control the pain.

I so appreciate all the comments people have been leaving. I did not know how people would respond. In reading every response, I want to say to each of you “See we are not alone.”
Thank you for letting me express how I feel and I hope this article helps explains your pain to others in your life.

Candace

Thank you Beth. I find it so hard to explain the pain and fatigue due to this, and yes, have also lost the ability to work, friends seem to have faded away and my family, says yes we hurt to, get over it. Trying to explain is so difficult, yet you have done it so well. After reading your blog, I too will try to get out of my pj’s every day. Am already trying to stay out of bed during the day. Thank you again for reminding me that there are other people out there, going through the same exhausting pain as me every day.

Laura Crps Warrior

I read this and I want to cry. I was diagnosed with CRPS after one full year of wearing unnecessary casts and experiencing burning, bone crushing pain that was enough to make me want to claw someone’s eyes out. Since then I have lost my job, my friends, my own self identity and basically all I once knew of my own existence. I have had family tell me it’s all in my head which breaks your heart. I can relate to the women crawling because you cant understand why you now cant use both feet when before it was just one. People refusing to treat you sure you feet were crushed. Then your arms so sensitive that your husband cant even touch you because your in a flare and your arms and legs are so hyper sensitive that even air movement hurts. But if you take one thing from this dont stop.. Dont give in. . Get up each day and fight! Show this disease it cant knock you down. Deactivate those glial cells which require movements. Take vitamin C and love yourself even when you dont want to…

Sunshine

My daughter is 11, diagnosed 8 mos ago with CRPS, after fighting and beating 2 occurrences of cancer in 2017. She lives in extreme pain every day and does her best to tough it out, take part in life, and smile through the pain. She gets accused of faking her pain by peers, adults want to know when she will grow out of these intense “growing pains “. Advocacy and awareness is much needed. As her mother, I fear she will someday lose her spirit to fight and become submissive to her depression.

Denise Torres

Beth that’s exactly how I’ve been describing mine. I’ve even been in so much pain. That I lot a match and put it under my husband’s arm. And he jumped and said, wth! I said, it hurts, it burns that’s how I’m feeling right now continuously. It doesn’t go away. Yours went away. Didn’t it? He said, yes. Well I’m still burning like a torch on fire.

Martina

You are a inspiration! I’m luck to know you and I wish I could be 1/100 The woman you are right now. But without meeting you and seeing hope I may not be here st all anymore.

Lisa Randolph

Thank you Beth for sharing your story! More needs to be done, for those of us who suffer from CPRS, it is so hard to get family & friends to understand what we go through, they have no idea what type of pain we go through on a daily basis, or when the weather changes, I going on 8 years and my 2nd implant, which isn’t working when I hear that the government want to take away our pain meds, they don’t have a clue to what we go through, so I agree more education is need to help us there isn’t a cure! Gentle hug

Melanie Sackett-Ghendar

Great description Beth and you’re lucky you have support! I’ve had RSD for 18 years with no support from family or friends. My Father just disowned me two years ago bc I can’t work being fully disabled. My Mother says she understands but doesn’t. Everyone says I look great so I can’t be in pain. Drs tried killing me with narcotics. I was on all the worst and they still didn’t help.
I describe my pain as a bunch of wasp stinging me like fireworks in the beginning then the constant burning pain. For days I’ve needed to go to the hospital for days bc it’s out of control but what will they do. I had surgery and it brought out the RSD. I need to have an X-ray just to make sure there’s nothing wrong inside but I know nothing will be wrong and they’ll send me away in agony. Sigh. I feel so alone with this.

Tabitha

Finally a perfect way to explain my rib pain. It’s horrible and i have thought about ending it many times. But luckily I have an awesome boyfriend that would never let me do that. It’s a horrible pain that I wouldn’t wish upon nobody. Just wished I could find something to really help

Janis

Girl I feel ya, literally. I have CRPS of the head and neck caused by a Chiropractor who violenty twist popped my neck. It put me in the hospital drs telling me I had a “headache” they drugged me and sent me home even though I explained my symptoms. Wouldn’t give me pain meds for 5 months ….so I was forced to be in a full blown crisis with crippling pain so I became suicidal. Everyday I thought about the be different ways i could end the pain. Drs in Hawaii were terrible so my husband flew me to the mainland where I finally was properly diagnosed and treated. I look back and think damn I’m a fighter a warrior people don’t realize how traumatizing it is to withstand a pain worse than both my babies delivery for fucking 5 months straight. Right now my pain is the lowest it’s been since I was injured but I’m aware this can change. I would give anything to go back in time and have not seen that wreckless over confident chiropractor. I want to kick his ass……my life may never be the same.

Hayden

I realize through “testimony” of real patients of CRPS that the generated pain from this condition is painful enough to warrant appropriate treatment for the pain EVEN if opioid medication in a tatilored, effctive dosage is warranted. Every patient wishes for their condition of CRPS to be told and listened to by the medical community and the controlloling agencies of dot/gov. However as the “pain community” we all need to committ to change the idiotic CDC “guideline” into a real plan of treatment instead of complying with it and adhereing to the one maximum dosage for all patients of lifetime, continuous pain……intractable pain regardless of diagnosis of pain generated from disease, injury or even non correctable pain generation whatever the cause. United as pain management patients we stand, divided we “fail”.

Christina

Very well written Beth. I have been a CRPS sufferer for 4 yrs now. My husband is the only one who truly understands what I’m dealing with without having it himself. I explain my pain to him all the time because it’s different all the time. From burning to ice cold to a bone cracking feeling the lost goes on. After I explain my pain I always ask him “does that make sense?” He always says yes with a simpathetic look on his face “that sounds awful “
How you described getting out of bed and getting dressed and going to the couch awesome totally me totally my life. I won that day cause I didn’t stay in bed. Thank you for sharing

sandy auriene sullivan

I force myself to get out of bed and into ‘house clothes’ [comfy almost PJ like clothes you don’t mind going to the mailbox or opening the door in] and yes….. it completely changes one’s frame of mind.

Laying in bed ends up physically hurting me on top.

My CRPS foot got ‘cold burn’ pain. Which if anyone has been around snow would know that feeling. Take a bucket of ice, put just enough water in it and now – stuff your foot in there and hold it so long it hurts. That’s how I describe mine. With the neuroma on the bottom, there’s lots of sharp, shredded/grazed/lacerated, stabbing pain to come with it.

Hang in there!

Jim Moulton

Thanks for the article on CRPS was very good, I have bad back pain, neurapathy in my lower legs. I never understood what CRPS and it’s symptoms were like. That sounds awful. What do you take for these horrible symptoms.
Best,Jim

Longtime Rsd dude

I’ve also suffer Crps upper & lower 24y men friends don’t understand at all, they share their war stories and injuries along with mine. I get along & live on my own, it’s incredible what the human spirit can accomplish when tested to the limit.

We’ll said Beth!!! You hit the nail on the head with every word. It is like u read my mind! Thaks

elgie swift

This certainly was a timely article. My CRPS is progressing to the point where I’m looking for a place to live where I will have help when needed. I thought I’d be a couple decades older when I’d make this move. I don’t want to leave my house in the woods at all. It’s been almost a week since I had the worst flare I’ve ever had since this monster came to stay and it wasn’t even on the affected side of my body.

Last week for no reason my R foot started hurting. Badly. In the middle of the night. I was looking for a nest of scorpions in my bed because what else could possibly make my unaffected foot swell, discolor, and be so painful I could not touch it, or move it actively or passively? I couldn’t stand, and had to crawl to the bathroom. While on my knees I cleaned up, brushed my teeth (you know how we are) crawling from room to room to unlock the door, get the telephone, and even marked my pulses with a Sharpie, sure that I’d formed a blood clot that had to have caused this reaction in my GOOD foot! Air hurt it. I tried to put a sock on and Foot said No! I managed basic clothing, took my regular meds and crawled back into the bed still watching for scorpions or spiders or a large bee hive, and cried while holding my very worried kitty while debating whether to call for help. I couldn’t even use crutches.

Did I mention I really hate hospitals? I’m sure we all have our stories with hospital personnel, and they haven’t been good. I was the type of RN when I was still working that if you were my patient, you would have a good day because I would not let you be in pain. For some crazy reason now that I’m a patient, I expect that in return but no. So I never called anyone, struggled through with an extra dose, asked my pharmacy to deliver a knee scooter which was a huge help, and now I’m going through my docs ruling out any other possibility besides CRPS to no avail. And although my R foot is better now, my L elbow has taken its place.

Gentle hugs to all.

Joey Walton

Wow 20 years, i have been dealing with crps in my foot for almost 6 years. There are rare “better” days, but most of my day is spent attempting to keep the pain level manageable. I can’t keep shoes on my foot for more than 20 minutes without it starting to flare up. I haven’t slept with my foot touching a bed or under a cover in 5 years. I don’t walk with a limp because for 3 years I did and the only thing I acheived was a bad hip and bum knee. I refuse to let this disease defeat me. Thank you for your article, hopefully it will bring needed attention to a brutal condition.

SUSAN WIGGINS SIMPSON

I am very sorry although I don’t hear you look good anymore 🙂 I get it..it’s like with cancer, on chemo and bald, people even those you know when bald treat you like you’re sick! Honestly, its 99% about the hair! Once the hair comes in although still sick with cancer, you’d think you been healed and they think you’re ready for the olympics! Attitudes totally change! It makes me sick! Out of everything, my mental illness affects me horrible but people can’t see that! A lot of conditions people get that people can’t see, it is unfair and you should be able to get whatever helps you opioids, marijuana, creams, massage, whatever works and it be covered!

nana

I am sorry for your pain.

I have leser trelat` and I am sure it is a lesser degree but when I am erupting I feel like I am lying on an insect bed and they are stinging, biting, burning. Until I can pinch or pull off the core it won’t stop.

But they say- don’t pick at it. ewww.

Can’t help it. The pain goes away a bit when I can dig it off.

Good luck.

While the doctors may not believe: your pain at least they know crps. I had one say “we don’t go by that anymore.”

Jasmine

I have an unusual form of CRPS. It started with endometriosis then adhesions binding nerves, bladder, abdominal wall and twisting my intestines. Due to the type of pain I feel and outward signs (mottled skin, loss of hair, etc) my doctors think I have CRPS. The way I explain my pain is imagine having a second degree burn, then someone cuts you open and pours acid on your raw and bleeding flesh. The other feeling is like someone boring deep into you with a drill. It is torture 24/7, every second of the day for the last 15 years.

Maureen M.

Hi Beth, great explanation. Whenever I’ve mentioned to anyone,over the many years of my RSD, that I am ‘burning’ not a single person has grimaced nor asked
‘What do you mean? How does that feel? How do you deal with that?’ therefore I do not mention it anymore.
The other day I dropped something heavy on my left big toe (one of my CRPS areas is my left foot/toes) and immediately I received pain into my ‘right’ outer calf?!
I’ve learned that this can be a typical response but I’ve never experienced it before. It was quite interesting.
Keep strong beautiful warrior!

Becky

Thank you, Beth! You’ve shared a relatable explanation of what we suffer through because of CRPS. I say relatable, as it may help someone understand what we experience day in and day out.

I just got home from my weekly outing – church. I sit on the first row so I can stretch out my legs and can see the worship band, while the entire congregation stands. I can’t stand for that long, I can’t clap for every song, nor can I raise my arms in praise. And now I’ll spend the rest of the day in bed. My pastor saw me take my TENs unit out of my pocket one Sunday as I was exiting, and asked if I was listening to music… NOPE, just trying to lower my pain so I can attend church.

The more ways we can educate others, the better. Thanks again for sharing.

Blessings,
Becky

There are alot of chronic painppainpatients suffering needlessly. The CDC needs to be held accountable for making irresponsible and unsupported statements when THERE IS NO SUCH EVIDENCE AT ALL PERIOD. Let’s all ban together and file a class action suit especially those who’ve lost loved ones from under treated chronic pain. I really wish more Dr.s would stand up for their patients but,they don’t due to their fear of losing their license. At the VERY LEAST I urge Dr.s to educate themselves and do research themselves. As far as suicide letters goes don’t give them fuel for their witch hunt. They will write you off as a mentally ill person. Not all medical examiners do a thorough autopsy. They are timely and expensive (hits the budget hard). I do suspect Dr.s were mislead by the CDCs war on opioid. In fact I’m sure of it. Sad thing is pain can does kill people. I doubt these people in gov. know anything about how they’ve been lied to given false information that reseach does NOT SUPPORT. Also bold statements like the U.S. is the largest purchaser of oxycode. That’s because other countries are ACUALLY GIVEN A DIFFERENT PAIN MEDICATION ALL TOGETHER. They don’t tell you or say that to the media do they. I applaud all the professionals that are speaking out for chronic pain suffers like myself and so many others. We all thank you. I’m fearful I’ll be one of the casualties of this horrible witch hunt perpetrated by reckless people who think they know anything about about pain. Shame shame shame on them all. Is it going to take them to have a horrible accident or disease ? Filing a class action suit may be the only way to get their attention. What a disgrace this unfounded war against opioids. The research is incomplete and that’s unacceptable. Don’t dr.s and professionals alike understand people are dying from
under treated or worse untreated chronic pain period. Blessings to everyone.

Dr. Mark W. Helfand

What Beth says is true. I’ve also had CRPS for 20 years and I learned early on how to hide my pain. When people ask you “How are you doing?”, most don’t want to know the truth. I lost a lot of “friends” answering that question honestly. We learn how to live with the pain and except for the really bad flare ups, not to let it show on our faces. Like she said, we try not to be a victim of the condition. However, as it progresses, and mine is still spreading, the fight get more and more difficult. Now, with the “opiate epidemic”, the wrong people are being crucified. With “doctors” arbitrarily reducing or stoping the necessary pain medications, the term “Suicide Disease” becomes a valid treatment option.

Pat Vandersanden

Beth, you have explained my CRPS perfectly. Thank you for your report.
May I add: ‘someone using a hatchet to sliver toothpick sized pieces of kindling from my wrist to my elbow’.

I can’t thank you enough for appearing in my inbox today, timely.

Walter Watkins

Well stated. This may be helpful for other pain patients to express their condition.

I never knew what CRPS was. I am so sorry for your suffering. I have fibromyalgia and severe low back pain. I can understand how you “fake” feeling ok. I have become a master at that too! Sending warm, healing thoughts to you.

Marie Taylor

Well said, “Beth Stillitano.”

Hi, I read your comment & I can identify exactly with what you said. Yes, my worst pain from CRPS also feels like I’m on fire. Thanks to a botched ankle surgery, surgeon cut & moved a nerve..I have to suffer with this excruciating pain forever too. during flare ups pain travels from feet right up through my thighs.always end up in fetal position trying to hold my thighs during thie burning pain. Thanks to this opioid crisis,my Dr.wont give me any pain meds & am ready to go crazy. Just finally foundf a new pain clinic & am hoping they can help me. Its even worse when I get my weekly 4 day chronic migraine. Hope there is help for us soon!