When To Speak Up: Patient Advocacy and CRPS

When To Speak Up: Patient Advocacy and CRPS

By Katelyn O’Leary

In her negotiation textbook Women Don’t Ask Linda Babcock outlines how women are too nervous or afraid to negotiate or ask for a raise or anything in their jobs – due to societal pressures. Females feel guilty or ashamed – whereas men are far less likely to feel that way. The same is true not only in the professional business world, but in medicine as well. Many patients feel a sense of guilt for asking a doctor for help, for more medications, and for questioning their treatment plans. But for CRPS patients, it is extremely important we speak up when the pain is not being treated properly.

Patient advocacy is one of the most important aspects of healthcare, and often one of the most ignored. For patients without friends or family to speak for them, the added stress of dealing with doctors can worsen conditions.  Unfortunately for me, I have had to advocate for myself constantly. When I feel ill and I’m in agony, the last thing I want to deal with is paperwork or people. But over the past year I’ve learned that being organized and informed makes the pain bearable. I always try to learn the names of every doctor or nurse who enters my hospital room, and if a treatment is not working I demand a conference with the attending physician and nurses to figure out a new plan.

Patient Advocacy for hire has slowly become a necessary (and pricy) expense for many people. According to the The Providence Journal the Alliance of Professional Health Advocates ranges from 250-300 people in the United States. These hired advocates attend doctor appointments, set up appointments, review medical bills, and ask doctors the hard-hitting questions sick patients are too worn out to ask. But not many can afford this type of assistance.

Advocacy is so important when it comes to CRPS. I am fortunate that all of my doctors work in the same hospital / medical center and have access to each other’s notes and records. Many patients see doctors at various hospitals, offices, and specialty centers. Keeping these doctors informed of progress or worsening conditions can be extremely complicated. Especially when a medical condition takes a turn for the worse.

A common phenomenon for CRPS patients is a “flare up.” Basically your body’s symptoms increase with so much severity that you can barely function. “Flare up” makes you think of a lost hiker in the woods, desperately seeking help in a dense forest – unsure of where to go or what to do. They send a flare up to the sky and wait for help. But what if help can’t find them? They start to wither and fall to pieces.  The rescue team, in this case my own pain management team, worked tirelessly to find a way to rescue my leg from it’s “flare up” and return “home.”

IV Ketamine has been known to treat CRPS patients with varying degrees of success. I was given 30 mg / hr of IV Ketamine which was quite a dosage. IVIG also known as immunoglobulin can “provide relief for people suffering from CRPS and helps modulate the immune system for treatment of chronic pain.”

Katelyn OLeary dress

Katelyn O’Leary

These treatments were administered in the ICU of USC Keck hospital and were monitored by my pain management team, rheumatologists, and various nurses. The hardest part in dealing with this situation and my many other hospital visits has been advocating for myself.  Due to the fact that my parents and family live in the Midwest, I am typically dealing with my medical problems on my own. Don’t get me wrong, I have a wonderful network of friends who have tirelessly stood by me (who even slept over in the ICU on the floor with me) but patient advocacy is one of the hardest aspects of chronic pain.

Doctors and nurses always ask you to rate your pain between 1-10, 10 being the worst. Giving your pain a number doesn’t feel specific enough, but when you’re in agony the words don’t always come out. My friends help fill in the blanks (“Her leg is killing her, she needs more meds”) but I also need to stand firm when the medical system is failing me (“This treatment isn’t working and I want to try something else.”)

Staying quiet and hoping someone will see your pain and help you – that is the stigma CRPS patients have to fight every day. Our pain is invisible to other people and we must tirelessly explain our symptoms in great detail.  Every patient is different – my CRPS symptoms are quite severe but also vary from some of the other patient’s they have treated. My leg burns like a forest fire from my hip to the tip of my toes. I cannot have a blanket resting on my leg, nor can I stand to have people lightly touch it. And much like a forest fire, I need help quenching the flames.

Editor’s Note: Katelyn suffers from CRPS and live in Los Angeles. She earned her M.A. from Carnegie Mellon and has the aspirations to be a writer and producer in the entertainment industry.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Katelyn O’Leary

There are 6 comments for this article
  1. Michael at 11:56 am

    Are rsd patients able to take roxy

  2. Katie O'Leary at 11:45 am

    Hi JGrace,

    Thank you for your comment – I am deeply flattered and thankful for your kind words. I think the first step in becoming a patient advocate would be to talk to the social services department of your local hospital or doctor’s office. I would also form a support group or attend one for those who suffer from chronic pain. Finally, I would suggest volunteering at your local hospital (bringing patients food or just sitting with them and talking). I’m not sure what your location’s guidelines are on that but it is worth contacting them and finding out! Thanks again for your kind words.

    And to everyone else – stay strong, positive, and try to

  3. Anonymous at 1:45 pm

    I finally spoke up to my pain mgmt Dr and told him the dosage I had been on for over 1 year needed to be raised that I was taking 2 pills in the am instead of 2 . He had told me many times he did not believe in the extended release .. so as he went to see what extended release dosege he would put me on I said , can’t you just give me one extra tablet per day (oxtcodone 30 MG ) . At my next appointment, I go to check in and I was told I was dismissed . I asked for a reason and they wouldn’t give me one. I asked to speak to the Dr and was told curtly “no” -I asked for a small prescription until I could find a new Dr and again was told ” no” I went to the er the next day in excruciating pain and was given an antiflammatory , no pain medication . I have rheumatoid arthritis, fibromyalgia and connective nerve disorder . I was left alone , no one would help. I have never abused my medication and would never give them out or sale them .. they’re too much of a mandatory medication for me if I want to live a halfway decent life. My paperwork was sent from one pain Dr to another -and that Dr said he didn’t want me as a patient . I don’t know what a in my chart . The Dr I went to before is making me wait to pick them up . How in the world is this ethical? ???? I missed work sick and unable to walk, close my hands ..touch clothing on my body . Yet this Dr didn’t care . At my appointment when he upped my medication by one tablet , all seemed good. He even offered suggestions for.my new dog . Terrible to not give me reason for dismissing me after a year of making pill could ts and urine screenings.

  4. JGrace at 7:54 am

    I love the idea of having a patient advocate on call to help others find their voice and words with chronic pain. It is in great need in this community just as important as a local support group. We have neither in this area that has a population of over 125,000 in the largest local county! Plus many more in the surrounding 15 counties in North Texas. I have been both a Public Health nurse for over 20 years and a chronic pain patient for 15+ years. I’m fortunate enough to be a patient at the only well known and reputable Pain Mgmt Clinic around. I would love to be part of starting and partaking in a support group. After reading this article I’m now quite interested in what is needed to become a knowledgeable and “trained/certified?” Patient Advocate? I would need assistance in running a support group and I know we would need other Patient advocates as I’m not always physically able to take on such an ongoing yet needed task. Can you give me suggestions/advice or point me in the right direction to find the information and answers to my questions please? Thank you for what you do and I applaud you sharing this with us. Thank you for your service and kudos for insisting on being a large part of your own healthcare plans. Best wishes and gentle hugs. Oh and btw, this is the first time I’ve had the courage to comment. Your courage to share so openly and specifically inspired me! Sincerely JGrace

  5. Dee Green at 11:36 am

    That’s why it’s important to bring all disease support groups that are affected by chronic pain together- We all have Chronic Pain in common & any restrictions to treatment will affect all groups equally (including cancer pain patients-especially if not receiving active treatment) Veterans groups as well ( they are already being subjected to under treated and untreated chronic pain) With one voice spoken loudly, these agencies and directors will see how many people truly are fearful that care may be even more restrictive then it is right now! Contact as many groups as you can and bring them together #PatentsNotAddicts #CantQuitPain

  6. Dave at 6:55 am

    “Consciousness raising” is needed. Books, articles, letters on RSD and other invisible conditions and contested illnesses like LYme disease- need to be sent to deans of medical schools, medical licensing boards, health commissioners, the Secretary of Health, Director of NIH and the different NIH institutes and their advisory boards. We should not allow their ignorance and uncaring ways to continue. I myself, have sent a book to Secretary Burwell-and to the former pain consortium drector- Dr Tabak- not to mention the great many articles sent to my state legislators on pain. Most of the aforementioned lack education on painful conditions-including Dr Collins. I was informed policy directors at DHHS had to tell Dr Collins that pain is important- and frankly he still doesn’t get it.
    If people in pain wish to light a candle- if they want a better future for people in pain- its up to you to inform, educate, advocate- for people in government and the health care industry will not get it until you make sure that they do.