Q: You wrote early in your blog that you followed guidelines for post-acute
withdrawals (PAWS). Can you give us a little insight into what those
guidelines entailed; were they shared by your doctor?
A: I was not given any information by my doctor on PAWS. I was actually told word for word, by my primary doctor at my 6months mark off all opiates, “There is no way you are still having withdrawals.” Completely dismissing me and what I was going through due to quitting 195mg/day of opiates cold turkey. Now looking back I would have done a MUCH slower taper to have not had such severe PAWS, though at the time all I knew was what I had researched and that was how to survive the acute withdrawals. I stumbled upon PAWS once I had already quit the opiates.
I have attached the link to one of the best descriptions of PAWS I have found.
Q: You were tested for numerous conditions based on your symptoms. What was
that process been like and what did you discover or learn from the process?
A: Long and daunting. I was pretty much left to figure out what was going on with my body on my own. It’s been 14months since I quit the opiates. I took the approach that I was having problems in multiple areas so I broke them down and started with what I thought could still be causing me these debilitating issues. I came up with the possibility of something wrong with my four level cervical fusion, MS, Fibromyalgia and possibly Arachnoiditis due to severe reactions from previous steroid injections. I started with my neurosurgeon to go over my fusion. Everything looked good there, just a bit more arthritis in my C7, T1 vertebrae. I was previously given the diagnosis of a “failed back surgery” by my new pain clinic so I wanted to see what my neurosurgeon thought. His words, “Absolutely not, you do not have a failed back surgery.” I said, “Okie dokie!” Then we went over my three pages of symptoms and he felt it was neurological (brain) so I was referred to a neurologist. The whole process from neurosurgeon to neurologist to getting some answers, took me 5 months. I have what is called Cognitive Disorder NOS. It’s unknown at this point if it’s from being on opiates long term, from quitting cold turkey or a marker for Dementia, Parkinson’s Disease or Alzheimer’s. All three run heavily on both sides of my family.
I’ve learned that we are our own advocates every step of the way, sharing our stories is what helps one another, especially dealing with an industry in denial or suffering a lack of knowledge. The lack of information as to what really happens from long term opiate use or from abruptly (cold turkey) quitting the opiates and the effects they have on the body makes it difficult to get answers. I highly recommend joining support groups as you will gain lots of useful information by others going through exactly what you are dealing with. One of the positives of social media! I also encourage you to share your story on your personal Facebook page. Being real opens many doors and gives others the courage to talk about these real issues many are facing. It was astounding the amount of support I received from my children, my family and my friends on social media. You will also find out very quickly those in your life (or on your page) who are not as open to real, brutally raw honesty. Don’t pay any attention for those people (you’ll know instantly what I mean.) That is why there is an amazing option called, “Unfriend/Unfollow” Use it!!!!
Q: In terms of your 13 years working in the medical field, what was your
specific profession/degree? How did that experience benefit your diagnosis
and treatment plan?
A: I worked as a patient care technician for 13yrs in Kidney Dialysis. Unfortunately algebra and chemistry in the greater realm (outside of daily usage) wasn’t a strong point for me and I didn’t finish school to obtain my RN licensure. I did however score 100% on my final exam in dialysis after being out for a year. The only person to ever get 100% on the test so I’m pretty proud of that and I had amazing skills in sticking the needles needed for dialysis and high critical thinking skills to run the patients treatments. Many times the RN’s were so new to dialysis they would seek my advice which was something I have been very proud of. Unfortunately I am unable to return to this type of work due to many health issues I’m currently facing and healing from. Having the critical thinking skills to see a problem and find a solution, looking from every angle possible is what made this “come natural” for me in accessing my own health care.
by talking about your experience. What 3 main pieces of advice would you
offer someone about to go through an opioid taper or discontinuation?
health therapy. Why do you think this is an important factor to chronic
pain management, and how did you go about seeking this therapy? In what
ways did it help specifically?