My Story: Without Pain Meds I Would Be Dead

My Story: Without Pain Meds I Would Be Dead

My story is like many. I have a college degree and had a professional job in telecommunications.  Almost at the prime of my career, pain began to interfere in all aspects of my life.

My particular pain issues are the result of being attacked by a stranger in 1991.  He shattered the left side of my face, fracturing my eye socket and the base of my skull.  I had surgery the next day and they performed a skull bone graft, using titanium plates and screws to rebuild what they could of my face.

An X-ray of Jennifer's face after surgery. Note the metal implants on the left side.

An X-ray of Jennifer’s face after surgery. Note the metal implants on the left side.

Unfortunately, a few years later there were complications. I had a series of surgeries in 2000 to repair a dreaded complication, an infection in my facial bones.  It turned out that the original metal plates and screws were loose, causing the infection and chronic inflammation around the major facial nerve.  During the surgeries, the metal plates were removed, an implant was put in (and taken back out due to infection) and although a rib graft was scheduled, that too was aborted because of infection and inflammation.

When I woke up from that last surgery, I knew my life would never be the same. I was diagnosed with a form of trigeminal neuralgia, Trigeminal Neuropathic Pain (TNP), which is often called the “suicide disease.” While the disease itself is not a terminal condition, the intense, unending pain it causes can make you wish for death.

I am now 40 and have spent the last 12 years trying to manage this pain, instead of it managing me.

I never did have that area of my face rebuilt. As a result, my left eye has no real support and is slowly receding, causing double vision and increased pain in the eye.  I have tried many therapies and seen numerous specialists, who have all come to the conclusion that pain medication is the most effective means to treat my pain, as the facial nerve has been permanently damaged.

The words I use to describe the pain really don’t do it justice.  This pain is constant.  It does not take a day off or go on vacation.  The damaged facial nerve signals an intense crushing, heavy pressure or a burning sensation most of the day and night.

Jennifer Moore

Jennifer Moore

The pain radiates from a quarter size area on my cheek, just to the left of the nose.  I call it the “hot zone.”  The pain spreads up to my lower eyelid and down to my upper lip.  This hot zone causes me the most pain. It’s as if someone were pressing a heavy anvil or a hot iron against my face.  At other times, it feels like insects are eating and crawling between my lip and cheek.

There is also a sharp pinching pain. It’s like the pain you would feel if you burned yourself with a cigarette, that instant cringe. But my pain is constant.

I also experience breakthrough pain throughout the day and without warning, which often brings me to my knees. The triggers for these severe flares of pain can be just about anything: changes in the weather, talking, smiling, chewing or touching.

Over the last decade, I have seen numerous specialists, including the head of neurology at Johns Hopkins University, the head of neurology at Tampa General, and the trigeminal neuralgia experts at Shands Hospital at the University of Florida. Each specialist concluded that surgical intervention is not possible because the nerve is so severely damaged.

I have tried many different treatments in an attempt to control, subdue, or simply lessen the severity of my pain: antibiotic therapy, anti-seizure medication, hyperbaric chamber therapy, acupuncture, nerve blocking facial injections, a TENS unit, anti-inflammatory drugs, alternating hot and cold therapy, “embrace the pain” talk therapy and anti-depressant medication.

I would estimate that I have been to the ER no less than 30 times, along with countless visits to doctors. The ER trips stopped completely when I was placed on pain medication that allows me to maintain a reasonable semblance of a life.

The analgesics I take have changed drastically over the last few years, due to the hysteria over prescription drug abuse. I joined the Fight for Florida Pain Care Action Network when I started to get hassled at my pharmacy and told they were out of pain medication that I needed.

Never have I been lied to and treated as poorly as I have in these last few months. I had to actually hand over a binder of my personal medical records to the pharmacist, for him to deem me worthy of getting my prescription filled.  Not only did I have to give up my medical privacy, I also had to turn over numerous personal documents just to get my prescription filled.

On my last visit, the pharmacist demanded that I bring in the drug test results from my doctor’s office if I wanted to continue to receive pain medication. The pharmacist said it was for their records, in case the DEA questioned them.

I could write a lot more about this, but will just say when I told my doctor he was baffled, saying, “Do they not know your condition?”

I only share this information so that you can see that I am not dealing with a minor illness or disease, but coping with a debilitating condition that is being managed somewhat effectively by therapy which includes pain medication.

We did not asked to be in the position we are in.  We are at the mercy of our community to assist and support us so we can have somewhat of a life, a life far from the one we once knew.

Without certain medications — and soon I fear all with not be available — I can tell you honestly and without hesitation that I would be dead.

schoolvolunteer (2)Jennifer Moore lives in Tampa, Florida with her husband and two children.

National Pain Report invites other readers to share their stories with us.

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The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Authored by: Jennifer Moore

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Sky Queue

My story is very similar to Noelle’s and the others that have shared their stories. Pain has taken everything away from me. Just two months ago I was finally given opiate pain meds that have made things more bearable. So many losses I have sustained that could have been prevented. I also had doctors not look into what was going on due to the propaganda and finally was tested and also have Rheumatoid Arthritis and a knee that needs surgery as well. I promise to support all of you however i can. I would love to picket stores that treat patients this way on one of my “good” days. How about it? I wrote letters and contacted the heads of the clinics that mistreated me but that hasnt changed anything so far. i am very heartened to see the solidarity that others are tired of being treated badly because they have pain. May all beings have the causes of happiness.

Noelle

Your story brought tears to my eyes. I agree totally with w Ms Ratcliff above. I started having pain over a year ago and at leat six doctors treated like i was a drug seeking addict. Finally I found a dr after having to sell my grandmothers Navajo blanket to pay her , i have no insurance and she ordered tests.You know those things that find out WHY you have pain? No doctor did that before! I unfortunately have RA and it is untreated as rheumatologists are $$$$ and I am still waiting until Oct to see one. i propy wont have the $ for the expensive biologics given by iv that slow the disease so i am left with NSAIDS (I take the very highest dose one can take) and opiates. I dont even have the pain described above yet I thought srsly about suicide asd i dont want to live a live of pain and increasing disability that keeps me from doing the nearly all the things i loved-some i will never be able to do. I can no longer work due to flares and hands not being able to do things but SSDI is years off at best and I am homeless because of it. Charities exict to pay themselves Ive spent countless painful hours trying and im on many waiting lists for housing that are literally 3-5 years. My doctor SAVED MY LIFE! Everyone else is judgmental and tells me I need to learn to live with it and my son even says its in my mind. They are all more worried about their licenses than in being real doctors. the doctors and the pharmacists should FIGHT BACK! The statistics being used are wrong and misleading and there are agendas at work here for the DEA and their corporatist and war profiteering backers to support this War in Pain Patients, who are the least well equipped to fight back. We pain patients shouldnt have to be on the defensive, they should not be putting themselves between a doctor and patient and doing the bidding of Big Pharma and the large LE and addiction counseling business, (also drug testing and all that i have to go thru) not to mention Afghani heroin warlords. I would love to tell you the way they are arriving at these statistics of overdoses from opiates, they are cherry picking and more and not taking into account important variables. The addicts themselves are victimized and given even less humanity than pain patients. There ARE many ways to deal with that disease as well, suboxone is 80% effective for example which help stop crime and desperation and total physical and mental breakdown of often talented and quite functional otherwise addicts as well. After being treated like one (and not nearly as bad I suspect) I feel for them as well, they are human beings with a disease. This vilification of the safest pain killers for 2000 years is about a lot more than… Read more »

I can sympathise with Jennifer, having lived with Fibromyalgia, Chronic Fatigue Syndrome, Shy-drager syndrome including Parkinson’s, brain tumors, TMJ problems, Osteo porosis, scoliosis & degenerative disc problems since 1992, I know the feeling of utter desperation regarding the use of pain relievers. My usual Pharmacy recently hired another young woman Pharmacist & when I went to have one prescription filled (morphine) she refused to give me the script because I had 1 (one tablet) left, which I was to take that evening, therefore leaving me no tablets for my morning dose the following day & said I would have to return the following day to get the script. She also stated that I had other very strong pain killers & to take them !!! This was said in a very loud voice so all & sundry could hear, did she think I was some type of junkie ?? I got my mobile phone out of my bag & phoned my Dr, on loudspeaker, who in turn phoned the Pharmacist & demanded I be given the prescription. He also reminded her that she was to dispense medication, not prescribe it.
I think we suffer enough without these people trying to be little tin gods..I always hope that my Dr will outlive me, as some Dr’s don’t have the same, caring nature, some FM sufferer’s relate how their Dr drags the consult a few minutes longer so he can be paid extra for the visit !!! Disgusting…….

My heart goes out to you, a horrific story that nobody should have to go through in this day and age. Sadly, it is a sign of the times that our governments value money over that of a human life. It sickens me to hear what you’ve going through and also worries me as with the recent changes here in the UK to the NHS we’re heading down the exact same path as you guys. I wish you the best of luck and that you get the help you deserve, take care.

Carolyn Peters

Was so sorry to read about your pain and difficulty in getting pain medication. I, too, have chronic pain due to a severe case of scoliosis. I could not get along with out it although it probably only gives 40% relief.So far, I have not had any problems with the doctor or pharmacist with getting the medication.I hope I do not have to go through anything like you are.I have recently been trying more topical pain relief such as a spray.essential oil, a gel and lotion. if I layer them on I get a little more temporary relief. I also use a back brace and TENS unit.

Does anybody use a TENS unit for back pain. if so, how do you like it?

Elevan Years

Thank you all for your kind words and support. I saddens me greatly that so many of you have equally painful conditions and experiences. Our only hope is to continue to support each other, educate our communities, as well as advocate for our rights to be treated not only medically, but with dignity as well.

Notsonutso, feel free to reach out to me and others at the org that I belong to Fight for Florida Pain Care Action Network, on Facebook, or elevane11, on Facebook.
Thank you all again!

Jennifer, I so feel for you. Living with the severe pain that you do is horrible. At the same time, you state that “you want to try to manage the pain and for the pain not to manage you.” People that do not live in any type of pain have no understanding of what it’s like.

When we live this way and are handed a piece of legal prescription paper and then we go before the pharmacist to get it filled and are treated in so many instances like we have just committed a murder and we are being interrogated for the very medications that help us keep somewhat sane and in control. It is a disgrace to the field of pharmacy that we must live like this.

So much of this is due to fear and like you said the pharmacist stated “they need your drug test in case the DEA questioned them.” We must continue to do our best to take each and every day as it comes and unfortunately, we have to fight for our rights to the much needed medications that help us live and try to have a quality of life.

Dear Jennifer, please know that we are here and are doing our best to support you and all of us as chronic pain patients.

Carole Thompson

It is extremely difficult to put my feelings on this particular story of a chronic intractable pain patient into words.
To be attacked as a young woman with her whole life in front of her is appalling in & of itself. To then be attacked by demands from the pharmacist for medical records & then drug test results is absolutely horrifying. It seems not only the attacker but also the pharmacist are power driven egotistical jerks (feel free to use many other choice words instead of ‘jerks’).
Why do pharmacists’ feel the need for proof of ones particular condition?
It’s absurd!
The laws need to change, & change quickly. The power needs to be in the hands of the patient & doctor, & that’s it! No one else *should* or even *WANT* to be privy to such personal information! Ever her of HIPPA?
Enough is Enough!
Thank you for opening your heart & sharing your most personal of experiences Jennifer. Know you are loved by many.

Wendy

Jennifer,
Thank you so much for publishing your story here. I have TN2 and TNP, altho they came through a fall for me your description of the pain and other symptoms are ‘spot on.’ I am embarrassed and angry to be living in a country that treats people with pain in such demeaning ways as you describe. Such treatment is not yet where I reside, but I do not presume that anywhere is “safe” in the long run. The failed war on drugs is harmful to so many. I join many in wishing you well and wanting positive change in regards to pain and access to pain control!!

NOTSONUTSO.

Jennifer, I cried during your story. I can so relate. I have abdominal neuralgia & pain medicine barely touches it. But if I did not have my fentanyl & percs, I would be gone already. I live in fear of my doctor retiring. I have no guarantee his replacement would continue my pain regiment. Probably not.

I wish you & I lived in the same city. I have no friends with chronic pain & it’s hard for people, including family, to understand.

Please be okay! xoxo

Terri Herring

Jen, I can relate to some of what you are saying regarding the facial pain. I suffered through continuous body-wide spasms for many years due to fibromyalgia and discovered that I was clenching my jaw in an attempt to bear the pain. After too many days & nights the TMJ pain became as unbearable as the rest of my body. A specialist discovered that during all the clenching I had chewed through the tempormandibular discs leaving a hole on both sides of my jaw and the discs had to be surgically removed. If I had had a cooperative doctor prescribing the pain medication I requested this probably would not have happened. Now the challenge is having to battle the pharmacists who have taken on a God-like role as to who will get pain relief & who won’t. I fully trust the day will come when a brave attorney will take our case on & many of those pharmacists will be sued for the pain & torment they have caused. Unfortunately, many of us are not strong & are dependent on our family members & the stronger patients to fight our fight… and it has been one hell of a battle but we are not alone. I know strength comes in numbers so I pray our voices will continue to be many and loud.

Victoria Chadwell

Thank you for sharing your story Jennifer. It’s heart wrenching what you have been through and that you must still go through all these obstacles to obtain medications. I too am a chronic pain patient so I understand all about the lies from pharmacists and poor treatment by them and others in the medical community. It took a lot of courage to share your story, but this helps get awareness out there for the unfair, inhumane struggles we as chronic pain patients are having due to politicians trying to credit themselves with fighting the “war on drugs” and the over-zealous DEA. We chronic pain patients are the collateral damage in all of this, the war on drugs has become the “war on pain patients”. Many of the public don’t understand that groups such as PROP, want to take away our ability to have our medications. There are legitimate patients who need these medications, such as Jennifer in this story, myself, and thousands of others. These agencies want to try to save a few druggies by too many restrictions on these meds, and politicians just want something to fight that they think will look good on their resume. These medications were invented to help us, not to be restricted, allowing us to suffer unnecessarily. Thank you again for sharing your story.

Donna Ratliff

Dear Jennifer,
I am so proud of you for telling your story. I have to admit it brought tears to my eyes. It’s so sad that pain patients have to expose all of their medical privacy just to get the medications they need to try and function every day. This is what is happening in Florida now.
No one should have to live with suffering if there is a medicine that will help stop it!
I pray that our country will gain compassion once again for the people who need it. This used to be a free country but it’s not anymore.. Not for people who live with pain.
**There needs to be a new LAW that ensures prescriptions get filled if a good standing medical doctor says it’s needed. If something doesn’t change soon, I fear there will be many people who will not be able to continue living.
Thank you Jen for telling what most people living with pain want to say.

Jennifer,
I’m sorry to hear of the ongoing debilitating chronic pain you live with. When I read stories like yours I feel I don’t have it so bad. I have a degenerative disc disease in my cervical spine and it takes all I have to deal with the chronic pain. I get angry at times my life ended up like this but I must move forward. I cant believe your having that hard of a time from the pharmacy. It sickens me to hear you have to provide documents to prove your pain.
I find methadone is less conspicuous than most pain meds and works better than anything I’ve taken for chronic pain. It doesn’t draw as much attention to you as a pain patient than other time released pain meds.
I wish you well and will keep you in my prayers.