“Thanks, Dr. C. Have a happy holiday.”
“You too. And keep working on all this stuff with your psychiatrist.” My doctor gestured vaguely to my depression and anxiety screening questionnaires, which indicated that I was in pretty dire straits. I nodded without saying anything, got up, and left as quickly as I possibly could.
What he didn’t realize was that I had been begging for help from my psychiatrist’s office for weeks, but every time she came up with a prescription for me to try, my insurance company immediately denied coverage. Three prescriptions and one dose increase had been denied to date. I have no idea what is going on with the insurance company, and I. Am. Drowning. While I wait, I continue to see my therapist regularly and lean into my deep breathing and grounding skills.
All of this is happening because I chose to go off my chronic opioid therapy four months ago. It had been time to get off Nucynta, the medication I took for seven years to treat debilitating pain caused by Chronic Regional Pain Syndrome (CRPS). Nucynta had served its purpose. It had calmed the pain enough that I was able to work with multidisciplinary therapies, and learned how to listen to my body’s cues. I was able to learn how to pace myself, practice effective alternate pain management techniques, and eventually got off my mobility aides. I slowly tapered off Nucynta over the last few years as my CRPS pain became less. It’s been a bumpy journey to say the least, but one I’m proud of. Completely stopping Nucynta in August, though, has been the biggest challenge yet.
I am now experiencing a phenomenon called Post Acute Withdrawal Syndrome (PAWS) from coming off the Nucynta. PAWS can kick in after the acute withdrawal phase of stopping a medication, and its main symptoms include brain fog, flat affect, depression, severe fatigue, insomnia/hypersomnia, and anxiety. Essentially, PAWS is a period wherein your brain relearns to produce neurotransmitters on its own that it used to get from the medication you stopped taking. PAWS can range from mild to severe, depending on the length of time you were on the medication, what dosage you were on, other health conditions you have, etc.
So, here I am. Drowning in PAWS. I know it will get better as my body heals from the impact of coming off my pain medication, and I also know that it can take up to a year or longer to feel back to baseline. It’s a lonely process, and still I am proud of myself for taking this step. I know it’s not for everyone. I am extremely lucky and blessed that my body responds to pain relief with other techniques, and that I have an awesome care team, family and social network that’s been able to support me through this whole process.
My hope at this point is to get some help managing the severe fatigue and depression for the next year or so while my brain recalibrates. I also want to say this: if you’re going through something similar, you’re not alone! Waiting out PAWS is awful, but it does get better, and it can be done. If you’re struggling, keep reaching out until you get the help you need! We’ll get through this.
K.P. loves writing, knitting, listening to music and supporting the chronic illness community. She has managed multiple autoimmune and chronic pain syndromes for the past twenty years, has fought endometrial cancer, and manages major depression disorder and PTSD. She finds joy in connecting with her friends and family, and is extremely grateful for the support she receives from those involved in her care.