My Story: Young People Have Chronic Pain Too!

My Story: Young People Have Chronic Pain Too!

Editor’s Note: Allie is a 25-year old woman who lives in Las Vegas. She is a chronic pain sufferer, and a budding journalist, who will be sharing her perspective in coming columns on the National Pain Report. Here is her introduction for us.

Allie Haroutunian

Allie Haroutunian

I was diagnosed with Adhesive Arachnoiditis in November 2012 after two spine surgeries, and post-operative complications. I was 22, and had no other choice but to quit my job and withdraw from Georgia State University. I was empty, angry, discouraged — and, truthfully, a little scared. Being bedridden forced me to face the challenges of a life with chronic pain.

Initially, it was unnerving and very frustrating to hear that close to zero reputable doctors could call themselves an expert on the disease. I found the Facebook group of other Arachnoiditis sufferers and was immediately immersed in the world of chronic pain. And boy, what a world it is. Terri Lewis, who has helped me navigate this journey, told me about Dr. Antonio Aldrete, an anesthesiologist in Birmingham, Alabama who is well known in the community for proprietary infusions said to help with the pain caused by Arachnoiditis. When I asked different foundations, scientists, and rehabilitation centers across the US where I could turn for information, and more importantly help, most people sounded dumbfounded or would stutter and ask me to repeat. Arach-noid-i-tis.

Great.

As if chronic pain isn’t isolating enough, I really felt like I was totally on my own, left to figure it all out. It was too bad that after a life changing diagnosis my best results came because I went on the internet.

Since doctors didn’t know what was wrong with me, they tended to stereotype me. My experiences at a leading center for rehabilitation of spinal cord injury and brain injury, were unsettling. The physiatrist and psychologist, who were both part of the pain team, used their full authority, it seemed to me, to minimize my symptoms.

The psychologist indicated she thought there was a psychological reason for the crippling pain of Arachnoiditis. I was treated with an inordinate amount of skepticism at every turn and so was my mother. They didn’t seem to comprehend the amount of pain I was experiencing at the time. I felt unnecessarily judged, especially when speaking about pain medication.

One thing I’ve learned with many physicians I’ve dealt with is that if you show them you know too much about a particular medication or procedures, they often think you might be “doctor shopping” or chasing medications.

I was doing neither–I was simply trying to take control of my life.

Just because I was twenty-two didn’t mean that I was going to shrink from having a say in my treatment.

I didn’t then and I won’t now.

Chronic pain patients are bombarded with offers for invasive procedures whether stimulators, pain pumps, epidural steroid injections, or myelograms just to name a few.

As patients, who can be vulnerable and desperate during chronic illness, it’s important we maintain vigilance of misinformed, overzealous, condemnatory medical practitioners. I think we’ve all heard horror stories of unassuming chronic pain sufferers who fall in the trap of this constant cycle of recovery, but never actually recover. A tip I might offer to help field options: really consider knowing everything possible about your doctors, procedures, medications.

At the same time, too much information can hinder understanding, and may actually cloud judgment. I know that is a contradictory statement, but hear me out. Information overload happened to me and I took a break from the noise to really listen to my body and my intuition. My body was in a constant state of shock and distress, which was a detriment to ME. I had forgotten to be present and experience the here-and-now. I forgot to be in the moment because I was consistently planning ahead, managing my day of pain down to the second. My mind was consumed with thoughts of pain; I’m a bit of a researcher at heart, so that amounted to a lot of stuff. To silence the mind is a tall order for chronic pain sufferers, however as I practiced, I noticed. My senses became tuned into instinctual subtleties my persistent conscious mind overlooked. As I noticed throughout different treatments how my body would react I realized that I had honed in on my wonderful intuition. I could now express in new ways the different effects therapies had on me as a whole (mind, body, spirit). This was the single best action I could take, aside from titrating down off of every medication I am taking.

So what have I learned so far, three years later at twenty-five? Take a beat. Be skeptical and informed. Ask questions. Demand answers. And don’t forget instincts and intuition. Your body will thank you later.

Look for more from Allie about her journey in coming weeks.

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Authored by: Allie Haroutunian

There are 8 comments for this article
  1. David Alexander at 9:41 pm

    Allie is a testament of God’s work in one’s life when all “other things/people” fail. Yes, there is tremendous knowledge and persistenance that is evident in Allie; all for the purpose of buliding endurance and hope, which is the case for all people who suffer – and immune to this in some fashion. Further, I know that nothing is possible without the God’s grace and here is the perfect picture of His grace! Allie, I’m proud of you and know that what you share moving forward will be a testimony to help and assist others. Good stuff.

  2. Michele Mitch at 11:02 pm

    I really enjoyed your story as I can relate to it on so many different levels. It is so true how doctors do not like when you educate yourself on your condition or figure out the root cause of some symptoms. Pain is such a hard condition to classify and diagnose correctly since everyone’s pain tolerance is different and effects everyone in different ways. Being knowledgable about a condition does not mean you can completely understand a situation unless you’ve actually dealt with it first hand.

  3. Barbara Bavier at 7:21 am

    I, too, was diagnosed with Adhesive Arachnoiditis five years ago. I received this lovely gift because of eight epidural steroid injections, or two Myelograms, or two spinal surgeries, or a combination of all three. I’m a strong believer in the theory that knowledge is power, but like you, felt the need to take a beat and listen to my body. As a result, I’ve come to realize that not every symptom applies to every AA patient, nor does every treatment work for every patient. And yes, medical professionals need to realize that we DO know our own bodies, and they need to really listen to what we’re saying. If opioid medication is what works for a patient, give it to them. Stop treating everyone who has true chronic pain as a druggie.

  4. Fred Brown at 9:22 am

    Hi Allie,

    I read your story from July 11 and you have gone through so much truly at a young age. The one most important item to me throughout your story was TAKING and KEEPING CONTROL of YOUR LIFE”.

    So often chronic pain patients can be pulled under and not realize they have influence and control of in their life. The one phrase I cannot handle is Pain Killer when referring to pain medications. There is no such thing as pain killers unless A). You are under general anesthesia or B.) You’re with respect, dead.

    Pain medications help to take the edge off and are able to help give us a better quality of life. But taking a pill and doing no more with one’s life will not work either. There are so many types of modalities we must use in our lives including the use of the mind. I have said in my Web Site one may be on medications but as an adjunct to this is the diversion of the mind. It does not matter if one is able to take a walk, read, see a movie, watch television, and so forth. This brings me back to the strength you have shown during the past several years.

    I wish you the best of good health even with the condition you have. I end my emails with the following; L’Chayim (To Life).

    Fred Brown Founder
    Legitimatepainpatients.org

  5. Dusting Parker at 9:21 pm

    I was the same age as you when I was given an epadural steroid injection which ended in a “wet tap” and blood patch. It was that event that changed my life forever with adhesive arachnoditis. No one would treat my intense pain, I suffered a great deal just because I was young. It took me a long time to find a Dr who felt i deservied relief. Its been a very very very tough road and no one has much compassion for young people’s who suffer, but are not dying. My advice to you would be to never accept “no” for an answer. Be persistent, be vigilant and find treatment now so that your symptoms slow and the progression of AA slows, your future depends on it.

  6. Joanna at 5:05 pm

    Hi Allie! Although I have an entirely different illness, your experiences are all too familiar. I too was first diagnosed around age 22, though I’m now a decade older than you.

    No matter what happens, I know you will be ok – you are intelligent and have learned to advocate for yourself, which is really the most important thing for someone in this situation.

    Good luck and looking forward to reading more from you!

  7. DRMINDY at 9:24 am

    Allie,
    Thank you for sharing your story and journey thus far with AA. I too suffer with the same disease and find many parallels with the struggles you have faced as I believe many do with Arachnoiditis, most oftentimes having been misdiagnosed. You are incredibly articulate and knowledgable at such a young age and I commend you for your courage, perseverance and fortitude in facing your obstacles head on and not allowing the psychologist and physiatrist to demean you or make less of your extreme chronic pain.

    I’ve heard that Arachnoiditis has experienced a 300% growth rate over the last decade and some experts have attributed this to the explosive growth of steroid injections into the spine combined with an overwhelming increase in spinal back surgeries. I noticed you had multiple back surgeries as I have along with multiple injections and believe more awareness on this subject and it’s complications, as well as the dangers of steroid injections into the spine would help to inform the public what they are not hearing from their doctors and surgeons in the clinical setting. Which includes the actual dangers and true percentages of incidents, complications and failed surgeries. If the public were to be made aware with clear “informed consent” forms sponsored by a multi-faceted group comprised of the Pain Societies, Patient Advocate Groups, and Governement Agencies using solid, credible, medical evidence as opposed to those whose sole motivation/purpose is a monetary and/or judicial function, I believe we would see a great deal less in the growth rate of permanently harmed and disabled patients which is causing our Governement healthcare and disability programs to soon collapse under it’s weight.

    I wish you the very best on your continued journey Allie and believe you’re headed on the right path by listening to your instincts & intuition!

  8. Terri Lewis at 2:51 pm

    Young people who have been subjected to interventional procedures are among the fast growing populations of persons with pain. They are also the most overlooked. As our technologies have allowed medicine to tackle more challenges in treating injuries even from birth, it has also created the unintended consequence of secondary insults that result in the onset of chronic pain. This is particularly important to address because young people are still growing and their body systems are maturing. We know that pain changes the fully formed adult brain. We know very little about how pain affects the growing underdeveloped brains and body systems of children, teens and young adults. Reports are largely anecdotal and children are rarely included in the data. Most classes of drugs are untested on youngsters under the age of 21 years of age. Further, we assume wrongly that children, teens and young adults are incapable of fully participating in their own treatment protocols and outcomes.

    Allie’s story is neither unusual nor uncommon. What is uncommon is that Allie, with support, found her articulate voice early in the process and fought to use it and to control and advocate for her own outcomes. Allie will continue to teach us all as she continues to advocate for her own choices spite of her life altering injury.