How NY State Laws Are Preventing Me From Getting Pain Medication for Scleroderma
Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.
I have been living with a rare chronic autoimmune disease called systemic scleroderma for a little over 16 years now. Since my diagnosis in 2001 I have been on some form of pain medication. Whether it be hydrocodone, Darvocet, or now recently morphine sulfate and MS-Contin, I have always needed some kind of narcotic to control my pain from the various symptoms of scleroderma.
Now I don’t want you to go ahead and think I am a drug addict because that is not the case at all. Living with scleroderma, to put it mildly, is painful. I develop digital ulcerated sores on my fingers that are probably more painful than pulling a tooth, minus the novacaine. These sores mean business! They pulse and throb and radiate pain up and down your whole arm, and that is just from one sore on your fingertip! Even a slight breeze has your whole body shaking in pain. Needless to say, Tylenol isn’t going to cut it.
Living with scleroderma also causes a great deal of stiffness and arthritis. Once I twisted my back getting out of bed. I was in bed for two whole weeks recovering from that one wrong move and in so much pain I ended up on morphine and two other narcotics just to be able to sleep at night, but even that did just enough to make me semi-comfortable. A lot of people who never have taken any form of narcotics before think that once you pop that pill, “ Wam!” You are in heaven, pain-free, walking the clouds and singing “Lucy in the Sky With Diamonds” by the Beatles. That vision, as nice as it sounds, is totally and completely false!
Despite what people believe, narcotic pain medicine does not really make your pain disappear. The pain, for the most part, is still there. It does, however, make you not really care that you are hurting. It is almost like a distraction of the pain receptors, so to speak. The pain is still around, lurking just below the surface, waiting. Especially when dealing with those digital ulcers I spoke about. I have had ulcerated sores on my fingers and toes, my ears and even my elbows and my nose for 16 years now. You name it, I have tried it, as far as narcotic pain relievers go. Nothing seems to get rid of the pain 100 percent – not a one!
Now here I am, 35 years old, having lived with scleroderma for over 16 years and I am on morphine and MS-Contin daily. Yes, that to some people may sound like a lot of medication for pain, but if you walked around for one day in my body, there is no doubt in my mind you would be doubled over in pain two hours into the day. Even taking morphine daily I still am uncomfortable, achy, stiff, swollen and overall at a six out of 10 on the pain scale.
My rheumatologist has been writing my prescriptions for my narcotics for the better half of my disease. Wouldn’t you know, I got an email a day ago from her office stating, and I quote, “Due to NY state laws for narcotics, I am no longer writing prescriptions for narcotic pain medicines.” And then it referred me to a “pain management specialist” somewhere 45 minutes away from my house.
I was floored. How could I not be allowed to receive my pain medicine from my doctor anymore? Now I have to go to a pain management doctor, which, by the way, the waiting list to see her is six months long! This to me makes no sense whatsoever.
I read the paper. I am aware that people are abusing their prescriptions and overusing them or selling them to strangers. I completely understand why NY state had to crack down on the laws for narcotics, and how patients go about getting the prescriptions and filling the prescriptions for those meds. What I don’t understand is why people like myself who take the prescription like it says on the bottle – and have been doing so for 16 years now – are being punished for being on narcotics.
If I had my way, believe me – I would not be taking pain medicine every day most likely for the rest of my life. If it were up to me, I would not be living with scleroderma, I would be a millionaire, and Trump would not be President of the USA. That, unfortunately, is not the case. It is bad enough that insurance companies are giving us patients an extremely hard time covering our pain medications. Now NY state and our doctors’ offices are doing the same. Pretty soon they may pass laws against narcotics altogether, and then where will we be? The USA will have a drug epidemic and thousands of people with narcotic drug addictions might start getting them illegally because they are in too much pain and need something to help but are refused medicine by their doctors.
To be honest, I could see this coming but I thought maybe, just maybe, we would not get to the point where only pain management specialists can prescribe narcotic pain medicine prescriptions, but here we are. Now I need to somehow find a way to get an appointment with this specialist earlier than six months from now because my prescription runs out at the end of August.
To all my brothers and sisters living with scleroderma, I am sorry if you too have to go through this nightmare. I know what true pain feels like and I have compassion for anyone living like myself with that kind of consistent pain. The only thing we can do now is to join together and write to our Congressmen and women and try to promote some kind of change so that the people who truly need their medicine and do not abuse it can get to it without jumping through circus hoops!
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