By Jaymie Reed, Guest Columnist

After going through eight years of a medical maze, I was finally diagnosed with a rare disease called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). 

It is a horrible disease with the myelin sheath being eaten away from my peripheral nervous system. I live with shooting, burning, cramping feverish pain in my legs every day. On most days I have difficulty walking, so I use a cane or walker just to try and not lose what muscle I have left, as CIDP eats away and kills the nerves that feed the muscle.

I am writing because each month I face being treated like a child or a drug seeking addict by all the healthcare providers around me. It isn’t because I have some bad history of being hooked on drugs -- it is simply because the doctors are concerned about writing prescriptions for opioid pain medications and what the DEA might do to them.

60 Minutes did a story on the heroin and opioid epidemic in our country, but it was on the side of the DEA and there was no mention of the patients that suffer.  The humiliation some patients experience merely trying to pick up their prescriptions each month is horrific. I hear stories every day about patients being treated like hardened criminals -- completely and utterly humiliated by pharmacists in front of people waiting for their prescriptions to be filled.

My local neurologist actually brought in his own pain management physician. At most pain management clinics, both you and Medicare pay top dollar for appointments and urine drug tests. In some cases, people are turned away from pain clinics if they refuse steroid injections, which are often done whether you actually need them or not.  These injections don’t last and for some can cause further damage, leaving behind scar tissue where the injections are made. 

I was referred by my neurologist to see the pain management doctor. He wrote me a prescription for a drug that cost $587 for 28 pills (there was no way I could afford that) and then ignored my calls for a replacement prescription before offering the same medication that I had previously taken, that I had told him no longer worked for me. When I tried to contact him about this, my attempts were ignored. I was fortunate, as my neurologist decided to treat my pain himself.

Because of the fear the DEA has put into these doctors for prescribing pain medication, they are simply turning away some patients, which only ends up shifting them to pill mills. They throw gabapentin (Neurontin) at us like it is candy, along with any other anti-anxiety meds, but some of those drugs turn you into a drooling idiot! 

What I go through each month to get these prescriptions is nothing short of a nightmare, causing extreme stress which definitely worsens my disease.  The pain medication I am now works about 70% of the time and I live in pain for the other 30% because my neurologist will only prescribe one pain medication for me. He says the DEA will scrutinize him if he does more. He even shared with me that his office gets a magazine once a week with 70 pages of doctors being reprimanded by the DEA.

Our government has decided to take control of the healthcare system and be Big Brother to the very physicians that once took an oath to help people. They constructed a massive control system for ALL patients needing pain medications.  There is a huge difference in the patients that have legitimate illnesses struggling with pain versus the abusive doctor shopping drug seekers. No one has managed to separate or even see a difference between the two.

Because of what I endure at my neurologist’s office, I asked my primary care physician if he would consider managing my pain meds. He informed that he would not because he was moving away from prescribing any opioids at all because he was concerned about the DEA.  I am continually told this.  Seeking a second opinion on my progression, I am told -- without even asking -- that they don’t prescribe pain medications. I am told to seek care at a pain management center because they don’t want to maintain the control systems and record requirements. They are concerned about the risk of being reprimanded by the DEA.

Having once owned my own business, I wanted to feel useful and still contribute to society, so I started a Facebook group for people who have what we call invisible illnesses and have no support system.  We grew to about 500 people in 4 months. People would not believe the stories told about going through withdrawal alone, because their doctor just stopped prescribing pain medication. Or the countless visits to emergency rooms and being turned away because God forbid they treat them for one of the very purposes ER’s exist.

This has been nothing but a disaster for people who suffer with real pain on a daily basis.  This situation is causing extreme harm to those who have valid needs for pain management and no one cares enough to help us because of the 16,000 deaths last year from overdosing.  Not to take away from those deaths, but that number isn’t even in the top 10 causes of death in America.

This is being blown so out of proportion in the media, as most things are, and anyone with any amount of intelligence can see that this nothing more than some witch hunt. People are paying dearly for the mistakes some have made at the hands of a few irresponsible doctors and it hasn’t stopped them at all. There must be something illegal about physicians not treating patients because they are afraid of the DEA. 

I am not writing just for myself but for all of us that suffer with legitimate documented medical need.  The DEA has its database for flagging addictive behavior, so why not let the DEA flag patients and take some of the fear away from the physician?

I am tired of fighting and, like many, am almost to the point of giving up all treatment and letting nature take its course. No one that is ill should have to fight for any kind of treatment. Those of us on disability already have to fight the medical bill/co-pay nightmare. We fight to just make it to the grocery store or pick up our Rx’s. We shouldn’t have to fight with the physicians we put our trust in to help us.   

The big rig that the DEA and now the CDC are plowing down the political healthcare road is going at such a fast speed that no one can stop them, even to take a look at their license.

One of the biggest problems we face is that the very people who are suffering are the ones that need to speak out, but won’t. They won’t sign petitions because they are afraid the pain medication they need will be taken from them.  We have to find a way to get these people to speak out. We have to give them a voice, because if we don’t none of this is going to change.

I will gladly stand up and speak out. And if the DEA takes my meds from me, then so be it. God will take care of the rest!

Jaymie Reed lives in Texas.

Pain News Network invites other readers to share their stories with us. 

Send them to:  editor@PainNewsNetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.