CRPS Patient Asks:  “Is Anybody Listening?”

CRPS Patient Asks: “Is Anybody Listening?”

By Gracie Bagosy-Young

Gracie Bagosy-Young

Gracie Bagosy-Young

I acquired Complex Regional Pain Syndrome almost 7 years ago after a wrist surgery. I also have bi-lateral Raynaud’s, and Lyme Disease. I only recently learned about the Lyme Disease. I have been advocating for myself and others with CRPS for 6 years. I run private virtual groups, I host meet-ups, I host weekly support calls, I send out info to doctors whenever possible, I network with as many professionals as I can, I host annual Pain Treatment Education Expo’s, I make time to speak with other patients one on one (in my home, their homes, over the phone). I carry brochures and literature in my purse and keep boxes of brochures in my car. One never knows when a teaching moment may occur! I literally never stop talking about this stupid disease.

Does anyone hear me?

Why are we still so misunderstood?

Why don’t people understand that while we may look great, it probably took us several painful hours to get that way?

Why can’t people comprehend that making a large meal wipes us out for the day? Why must we still explain to those close to us that we cannot handle the loud noises? Why do people still grab our affected limbs when told not to? Why is this “invisible illness” so much more difficult to understand than others? It isn’t really so invisible after all if you really take the time to look. Spend some time with one of us, you will see freezing purple limbs, horrible swelling, shiny tight skin, mottling, dystonia, sweating, abnormal hair and nail growth, muscle atrophy (yes, you CAN see this with the naked eye!), lesions, nausea/vomiting, extreme exhaustion.

This is just an abbreviated list of what you can see on the OUTSIDE! You likely cannot imagine what is going on inside of our bodies-the constant firing of the pain signals, the bone deterioration, and the struggle for our bodies to regulate our body temperatures. I could go on and on, and I am not a doctor.

Don’t tell us you hurt your back last year. We don’t want to hear about your sprained wrist or your broken leg. This is not a pain competition and you cannot understand the pain associated with CRPS unless you HAVE CRPS. Just listen. Don’t try to sell us your new health bar or smoothie mix. I can tell you first hand that if you have not spoken to me in several years and you reach out to me simply because you now have something “healthy” to sell, I will not receive that message well!

If you are going to proclaim to care about or treat a person with CRPS there are many things you can do to help them. Listen to them. You can join a caregiver’s support group. You can go to www.uspainfoundation.org or www.rsds.org and find plenty of information. The National Institute of Health has downloadable brochures. National Pain Report has run many articles on CRPS. Find an advocate to help guide you-we are everywhere!

PLEASE HEAR US! This is 2016. If we are not being loud enough, eloquent enough, assertive enough, bold enough, then please simply Google Complex Regional Pain Syndrome. It really is as simple as that. We deserve that respect.

Gracie Bagosy-Young is a chronic pain advocate who writes for the National Pain Report. To learn more about her work, visit her website www.ggpainadvocacy.com

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Authored by: Geoff Sims

There are 3 comments for this article
  1. Mary at 8:06 am

    Your journey is a tough one yet your mission remains unstoppable.
    You are appreciated more than you’ll ever know.
    Shine on.

  2. Gracie Bagosy-Young at 6:52 pm

    Jean Price-
    Thank you for leaving such wonderful feedback. I completely agree with you! I actually wrote another piece with a similar thought process. I invite you to read it:

    http://nationalpainreport.com/crps-took-my-identity-i-took-it-back-8828052.html\

    “I believe that until we learn to separate what we do from who we are, it will remain very difficult to harness the confidence needed to fight off the depression that often comes with chronic pain.”

    We are all in this together!

    Gracie

  3. Jean Price at 4:07 pm

    Gracie….your message is clearly an affirmation to people who have similar pain issues! Nice job! Chronic pain from any cause is life limiting and can take many different approaches to bring us up to our personal best. And as you know, that “best” can change hourly. Before my onset of chronic pain, I had the good fortune of working with a senior group promoting independence, and a group of conjoined services of adult day care, hospice, and a grief and loss program. Their definition of independence was not in reference to function, but rather they considered a person independent if they were able to make their own decisions of life and living …. taking into account the reality of their situation. We usually think functioning is the key. But when this is reduced, we can still live our lives independently by making our choices and being creative about how to achieve those. Relying on help can actually be a gift to the giver, not just the receiver. So this was also a program about community. As for the grief and loss part, this has been the single most important thing to me in living with pain. It wasn’t a stage based model, but rather task based….with the first being to allow the pain of the loss and tell the story. Not denying the loss would be pivitol in recovery, because denial ends up using unhealthy ways of coping i.e. food, behavior, medication abuse, withdrawal, etc., and can lead to addiction of any one of the things. I have always thought physicians and especially pain clinics could integrate this into their care, starting with the staff and including patients. Until this happens, most hospices have short term grief recovery workshops that could benefit people who have lost part of their life to chronic pain. Because I have had these tools to help me, I consider myself more whole and better able to cope with the roller coaster life of chronic pain. Even coping with the humiliation that sometimes comes with opioids use is easier to process and let go of! Life with pain is hard enough and I want to use all my energy on living….not anger and regret and self pity. This has helped me do just this, and stay true to myself. I don’t have the answers for everyone, by a long shot!! But I do know each person can work to find their own answers with a little education and support. Again, it was so good of you to let others know they are not alone…and I wanted you to know that you aren’t alone in this either!