What is Remission With CRPS?

What is Remission With CRPS?

Gracie Bagosy-Young

Gracie Gean Bagosy-Young

By Gracie Gean Bagosy-Young

RSDSA says that “Complex Regional Pain Syndrome occurs when the nervous systems and immune system msifre as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain.”

The level of pain is measured as one of the most severe, which is no surprise to those of us who suffer from it.

I am constantly asked “What is remission like with CRPS?”

My answer is simple, “Remission is not what people generally think it is.”

I have known remission twice. Remission does NOT mean that we are pain-free. Remission means that we are in a state of LOWER pain levels that we can regulate and maintain. It means that we can get our bodies to heal from injuries without uncontrollable flares. We still have pain.

Our CRPS areas still communicate with us all of the time-just not in gigantic ways. They communicate in tolerable ways.  I still have to eat an anti-inflammatory diet to prevent flares. I still have to keep a close eye on the weather, although I can tolerate much more than I could before.

I do still need FAR MORE rest than “normal people.” I soak, soak, soak in hot baths with Epsom salt! I take a ton of supplements. I need more quiet than I ever have before in my life. I need calm. I still get flustered with too much noise-it does not always equate to pain, but it does fluster me and sometimes I get angry that I am flustered. I am still terrified of falling down or getting injured. I do not let that fear stop me from living, but I am not going rock climbing any time soon!

I am a lot more relaxed now than I ever was in the past. Things that used to make me batshit crazy (a technical term) don’t make me bat an eyelash now! Anger is not worth the pain it will cause me. Anger and stress DO still cause me pain! In fact, stress is the quickest path to a flare. The skin on my CRPS limb never feels normal, even when it doesn’t hurt. I don’t have the words to explain how it feels, but it isn’t right.

Remission with CRPS is not the same as remission with cancer. I wish that we had a more appropriate word to use so that people would understand this state better. It seems that when people hear “remission” they think that means “gone.” That is certainly not the case. We still hurt every minute of every day, even when in remission.

“Remission” with CRPS is not a return to “normal” life, it requires daily effort to maintain.

Today is another day!

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There are 14 comments for this article
  1. Pam at 3:25 pm

    Wayne, I am so very sorry for your loss. Sending prayers and support your way. I too am a chronic intractable pain sufferer. I have DDD, fibromyalgia, CRPS/RSD, three herniated discs,cervical disc degeneration, radiculopathy, neuropathy, stenosis, sciatica, pancreatitis, cholecystitis, just to name a few. Ive done everything I was told to do. Going on ten very long years now. I tried YEARS of physical therapy, massage, chiro, accupuncture, epidurals, discographies, facet injections, nerve blocks, trigger point injections, two FAILED spinal fusions that left me with severe nerve damage, steriod injections, tried every OTC medication that tore my stomach up and did nothing for the severe pain I was in and continu to be in 24/7/365. I tried every NSAID AND Non opiod medication. Nothing helped to alleviate the pain. Opiod therapy was my LAST RESORT! Finally I was given some QUALITY OF LIFE! Eight years I was on the SAME DOSE, MY PAIN WAS A A TOLERABLE LEVEL U TIL A YEAR AGO WHEN MY DR LOWERED MY MEDS TO INEFFECTIVE DOSES THAT LEAVE ME IN AGONY! THIS IS INHUMANE what the dea, cdc, fda and government are doing to LEGITIMATE PAIN PATIENTS! WTF are we supposed to do? Pain drs are turning their backs on us’, lowering LIFE SAVING MEDS to doses that are not effective or just totally stopping the meds all together, causing many to go into deadly withdrawal and pushing LEGITIMATE pain patients to their breaking points and they take their life to escape the pain. It is a disgrace the way the chronically ill are stigmatized as addicts by. doctors, nurses, hospital personnel, pharmacists, family ,friends, and by a society of people who believe all the propaganda bullshit. Had they known the truth , the witch hunt, the NEGLECT, ABUSE, MISTREATMENT, DEGRADING, STIGMATIIZING AND DISCRIMINATION that a chronically ill patient is put thru,, if people would open their eyes, and stop passing judgement onto the chronically ill, treat them with compassion…really sad that many out there caving like the governments puppets and believing the lies about opiods. Just go to the painnewsnetwork.org page, search CDC, all the truths and facts are there. It’s terrifying to read all the MANY comments I am seeing in all of the chronic pain support groups I am in, and they speak of suicide. How can the government get away with this!!!! Please feel free to join our fight for our rights to pain medication and a QUALITY OF LIFE!! Chronicpainrights.com. and on facebook: chronic pain rights support.
    We are #patientsnotaddicts. #painedlivesmatter.

  2. Dave at 12:17 pm

    Jean-thanks for the kind words. You have a humanistic flair to you.
    Id like to go fishing one day- haven’t had a vacation in 6 years.
    Maybe some day.

  3. Jean Price at 8:39 pm

    Dave…the compassion of your personal pain experience shines through this story you’ve told. And I’d say yours is actually an exceptionally interesting one because of what you’re doing now! In a sense, you’ve not only healed but you’ve also resurrected yourself and now have a goal of helping others who are going through what you experienced first hand. I don’t think there is much more worthy of a target and I’m so glad in many ways…for your own recovery and healing from pain, for your continued work to help others despite the sadness and mental pain you feel when others are hurting and receiving poor care, and for the unique perspective you bring to the table. I understand the wooded lot, and you may find me in the vicinity, but a goodly ways off! Mine has a fishing hole! Thanks for sharing…if it happened to you it creates the possibility of it happening to others also. A triumph and a success!

  4. Dave at 5:59 pm

    Jean- i am one of the success stories- though not particularly interesting or exciting as other stories of succes that i hae heard and read.
    But i can tell you, oddly enough, toward the end of my journey with fibro- i was losing hope of getting better. I tried to stay up as late as possible at night- because i did not wake uo to another day of pain. I was 42 at the time and dreaded becoming older because i believed i could only get worse. Its almost 16 years later- and, in a sense i have lost the memory of pain- i have no fear of getting pain.
    I would have been pain free in the greatest sense of the word- except about 9 years ago i kept bumbing into people with chronic pain who were receiving poor pain care. One time, circa 2008 i went with someone to Mount Sinai to a specialist- and they were treated very poorly- i was so upset that i knew i had to do something to help people in pain. And though i am physically pain free- i suffer peoples pain- i suffer knowing what they may be experiencing and have espent over $12000 in books on pain, healing, energy therapies, etc since 2009 to try and help people in pain.
    So yes- i triumphed over my own pain and freed myself from that underworld- only to immerse myself again in it to free others of their suffering. I can say that i have helped to free a number of people from pain- hopefully i can do more- Im certainyl willing. But i got to tell you in the next lifetime id like a rustic life- living on a farm away from the world and just enjoying the peace of nature- hey Im only human!

  5. Tamme Hansen at 1:33 pm

    Thank you for clarifying what REMISSION means in the RSD/CRPS community. People need to realize its not like remission associated wtih such diseases as cancer, etc. Thank you for your blog and I hope you have a less than normal pain day. :}

  6. Jean Price at 8:55 am

    Wayne and Francesca…and all those who are struggling to hang In there. Every person with long term daily pain either is or has been or will be where you both talk about. And we all fluctuate daily on wondering if life is worth it, especially being treated this way by all those who are determined to undermine our care. Just last night, I told a friend I really needed a better day or two to help me hold on. And sometimes that’s what it comes down to…the hope that a better day, less pain or better control, is around the corner. I wish the advocacy groups would be as involved in our moral and mental support as they are with education and legal actions. We need this, too. (With the potential of suicide increasing in our ranks, perhaps they could set up a crisis help line solely for those with pain who are at their wits end.) What I want to say to everyone is please hold on, somehow endure and please don’t let “them” take your life along with everything else you’ve lost. Yet, no one really knows the depths of others’ despair or their pain…so that seems somehow unfair. But because it’s so important and it’s getting harder to get the treatment and medications we survive on….and because there truly are people who understand out here and you’re not alone…..I’ll say it anyway! TO ALL THOSE IN PAIN WHO ARE IN DESPAIR AND ARE THINKING ABOUT ENDING THEIR LIVES… PLEASE HANG ON. PLEASE STAY WITH US AND THOSE WHO LOVE YOU. PLEASE DONT LET YOUR DEATH BE COUNTED AS AN OPIATE OVERDOSE OR DRUG RELATED SUICIDE…BECAUSE IT WON’T BE LISTED AS DEATH FROM PAIN OR DEATH FROM INAPPROPRIATE PAIN TREATMENT! AND ANOTHER LIE WILL FOLLOW YOU. YOU’RE WORTH ISNT MEASURED BY WHAT YOU CAN DO…OR WHAT SOMEONE WHO DOESN’T KNOW YOUR STRUGGLES SAYS. IT’S MEASURED BY THE GOODNESS OF YOUR HEART AND THE LOVE AND KINDNESS YOU SHARE AND RECEIVE! IT’S UNFAIR AND INHUMANE TO BE DENIED HELP WITH YOUR PAIN, AND YOU DESERVE BETTER. THIS DAY IS ONLY ONE DAY. MAKE IT THROUGH THIS ONE AND TOMORROW COULD BE BETTER. IF IT ISNT, HOLD ON ANOTHER DAY AND JUST KEEP GOING TILL YOU GET A LITTLE BREAK. DONT ALLOW “THEM” TO KILL YOU. DONT GIVE “THEM” THAT POWER. PLEASE STAY AND FIGHT WHEN YOU CAN. AND LET OTHERS WHO MAY HAVE MORE STRENGHTH FOR THE MOMENT FIGHT FOR YOU WHEN YOU CAN’T. WE CARE, WE REALLY DO. YOU MATTER, AND OTHERS BELIVE IN YOU. PLEASE STAY. Blessings to all who are in unrelenting daily pain…and peace to all those who are finding it hard to go on.

  7. Francesca at 5:38 am

    Wayne S. Swanson II I TOTALLY agree with you I’m sorry about your stepdaughter and your plight I’m in a similar boat 11+ surgeries and counting my body’s riddled with DDD and OA , fibromyalgia, neuropathy bad genetics , sports and (work related repetitive ) I can’t work unfortunately had no choice (had career in electronic ) but to quit working 10 years ago I get treated like addict even my own pain management office has recently mishandled my last visit and ignored my repeated pleas for pt for a painful condition that had settled in my leg for over9 months shots didn’t work pain Meds aren’t touching it because I’ve got too much pain everywhere else can’t take care of myself anymore I’m 51 going on 52!! People have no clue what we go thru I wish my eyes don’t open each day because then immediately I feel pain 24/7/365 nonstop even shower water is hurting me now it never used to I wish you luck my fellow pain traveler hopefully we won’t suffer much longer as I have considered the alternative daily only stopping from doing it for one reason it’s personal but this pain worsens and I weaken

  8. Jean Price at 10:33 pm

    Dave…Well said! I think we really don’t hear enough of the positive stories and small triumphs from each other…and sometimes I find being lost in the tragedies of these comments is more than I truly can bear along with the physical pain I’m having. Each day has little positives really, even when we are disgusted with our care. I worked to see them at first…yet after a while it gets easier to appreciate things like…to brush my hair, or shower, see a bird at my feeder, getting out anywhere (except to doctors offices and pharmacies) is an adventure, a call from or to a friend so I can ask what she has done for fun lately and be able to joy in her golf score, to look at old pictures, to get out of pajamas into real clothes, to watch a show and learn about an animal I didn’t know about. Yes, these are all things others may not even consider, they just do them without thinking. But we’re not other people, and we do really well most days appreciating the things they can’t. When pain is a constant companion, we have extra trouble keeping our relationships healthy and having a positive outlook. But we do it! And we should pat ourselves on the back more often for this. The world has never been easy and affirmation from others is often lacking. If we rely on it, we’re often disappointed and angry that they don’t see our worth. We can see it. We can affirm ourselves, our courage and our bravery, our compassion, our sense of humor against some big odds! That’s really what’s most important, in the big picture anyway. If you have titles of some of those books handy, maybe you can share them with us. It’s always good to read of someone triumphing who has pain. In a way, we all also triumph …because we’re all still in the game! Sometimes life with pain means altering the definitions we used to go by! Then we can see how really successful we truly are!

  9. JoDawn at 4:00 pm

    Mr Swanson,
    I am so sorry for your loss, and the loss of the life you used to have. I think we all need to have some hope, some light at the end of the tunnel.
    But that does not change the fact that millions are hurting NOW who need help, options and compassion.
    God bless you, sir.

  10. dave at 2:14 pm

    Gracie-Im glad you took the time to talk of remission for rsd- for there are too many with rsd and other painful conditions who believe rsd is a death sentence and become fatalistic about pain.
    Too many believe that some thing or someone has to fix them- has to deal with their pain. And there is much more to pain care then what a prescription or treatment can proivide. I have read books by numerous people in pain who have great determination and a great willingness to keep at it- and some of their stories and success is quite remarkable and quite inspiring.
    I think we need to hear about the success stories. All the talk from people suffering from pain cause they cant get their opioids is not very inspiring.
    As someone who had pain for 4 years and struggled to become pain free-almost 16 years now- i think people in pain deserve and need to hear more about remission and success stories . I think they know only too weel about the many failures in pain care.
    We, as a Nation need to get past the failures and on to hearing about much more success in pain care.

  11. JoDawn at 1:27 pm

    Thank you so much for the clarification! I’ve had more “good days” lately, but not pain free by any means.
    As my mom would say,”I don’t care what you call it, just keep it coming!”
    God bless & Gentle Hugs!!

  12. Wayne S. Swanson II at 12:08 pm

    Let me say this! A person who has a addictive personality will abuse anything that helps them feel better. I have taken Oxycontin for 12 years , I have had 20 major surgery’s in 9 years. I have so much physical pain I can not even get out of bed with ouit pain meds and when I run out I run out and just lay in bed praying the Lord relieve me of this horrible condition and I pray God you pain med skeptics never go through what I go through everyday of my life when the only thing you have to do is threaten what help I get, Shame on you! There will always be drug abuse and as the so called war on drugs has failed all this will! All you do is stoke and aid the drug pushers business to knew heights in the Black Market of Heroin while depriving folks as me to this horrible movement! My Stepdaughter committed suicide 4 years ago because of being treated like a drug addict by her family and doctors when all along she suffered from Lupus and Fibro which I believe was brought on by a deadly car crash at 18 , she told me between that which I was being put through and what they were putting her through she was not going to live her life in such a hell brought on by people like you that are on a witch hunt to out law Opiates and pain meds that give us some sort of a life . As a retired Police officer and worked indirectly close to the DEA, you people do not have a clue how thrilled you are making the illegal opiate trade and think of my Late Stepdaughter as you continue on with this bull***t movement to outlaw opiates! Just like the slaughter of children at Sandy Hook if there would have just been gun laws , my God they were Gun Laws , the guns that murdered all those 20 children were all registered and owned by a school teacher! You fight Drug Addiction in Elementary education by teaching all children the dangers of Booze and Tobacco which if these witch hunters want for us to know the real truth but they do not. I miss my Stepdaughter a so much and some of us will continue on the fight to protect our right to feel better and function without fear of these witch hunters trying to convince us to commit suicide . And they are trying to do exactly THAT !
    The under line real truth is THESE witch hunters would rather us Chronic Pain sufferers commit suicide are and DRINK all the BOOZE we can drink! The Federals legalized it ( ALCOHOL) knowing its a more deadly drug than Strychnine. And just because the DEA has miserably failed with their bullshit war on drugs why do they deprive us sick people of our Constitutional Rights to be Happy in that pursuit of with Professional Physicians to take meds that give us relief of this horrible malady of Chronic Pain ! May God have mercy on their miserable souls they that seek to destroy us Chronic Pain Sufferers only and little hope of temporary relief of this horrible sickness.

  13. Yvette at 9:50 am

    I can totally relate to to all that you wrote. I have definitely been in these shoes for over 10 yrs. Thanks for your input on this subject. Can’t wait to read more.

  14. Maryellen at 9:26 am

    My specific condition with CRPS is different than I have heard others describe but your comments totally reflect my everyday challenge. Thanks and wishing you better days ahead. Maryellen