Stop Taking Away Needed Meds For Chronic Pain Patients

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Pain.

You have felt it at some point in your life resulting from various reasons. Usually the pain is quick to fade and it is forgotten about. Acute pain is pain that lasts a maximum of three to six months. Where as chronic pain is pain that lasts for an unspecified amount of time that lasts longer than three months. This petition will be focusing on chronic pain as it is the pain that affects patients the longest, it has the most impact on the patient's life, and it is now the pain that is being majorly undertreated leading to consequences that can't be reversed. 

Chronic pain is more often than not a pain that over the counter NSAID's like motrin or tylenol do not help whatsoever. A doctor is then sought out to see what the problem is and what can be done to help improve the quality of life. One really big problem is when doctors are afraid to prescribe the medication that the patient needs to help gain back some quality of life and to help relieve some of the pain. It is understood that if possible, nonmedication therapies are tried first and then if that fails the doctor will go up the scale from the absolute weakest and at the lowest theraputic dose to try to help the patient regain function or quality of life. The problem really starts to affect patients when alternative therapies cannot be used due to the disease. Many doctors are either incorrectly taught about many rare diseases such as Tarlov Cyst Disease and Adhesive Arachnoiditis so the patient is put between a rock and a hard spot. 

I have tarlov cyst disease and I also have adhesive arachnoiditis. I had surgery for the tarlov cyst, which failed less than 3 months later, and also ended up with adhesive arachnoiditis due to the surgery and I wasn't warned about it being a risk for the surgery. I am now disabled at 22 and unable to complete my degree for biology. I am bed bound because sitting, standing, and walking majorly increase the pain to levels that are hard to comprehend even for myself. The pain is there 24/7, it is both entire legs as well as my lower legs. It feels like molten solder encases all of that area. Can you imagine living with that 24/7 and not knowing if you will ever get one pain free day ever again? My arms hurt when I have a flare up, which is when the pain is 1.5 times worse than before. I even have numbness in my right hand that has been there for a month and I can't feel anything on the numb spots because it is dead numb but still has a pulse. My other hand has been trying to do the same. I have daily migraines and problems with my vision as well as problems with my bowel and bladder thanks to nerve dammage that affects them. I use heating pads and electric blankets on my legs and hips like the neurosurgeon told me to do to try to help the pain and now have second degree burns on my legs and hips and lower back as well as significant scarring in those areas as well. I have tried the meds for nerve pain, chronic pain, as well as many others! I am allergic to many topical meds, oral meds, and many other things dont work or metabolize like they should thanks to my genetics. I am now going through even more pain thanks to a decrease in my meds due to the clinic I use being audited by the DEA. I am in so much pain that I have 3 heating pads on high, 2 electric blankets on top of that, two gel lidocaine patches, as well as using bluegoo to try to help and binaural beats and meditation. I have had doctors try to force epidurals on me telling me they were safe and that its fine for arachnoiditis patients despite the papers I had in my hands from the lead researcher for arachnoiditis saying otherwise. That doctor then told me I was going to kill myself and that he wasn't willing to risk his license for me to get relief.

Why am I getting punished for having not just one but two rare diseases that I have no control over? The tarlov cyst was misdiagnosed multiple times and I ended up diagnosing it and sending myself to a specialist to get it confirmed. It eroded my sacrum to the point where it is transparent. The cyst was filled with spinal fluid and over 4 cm at the time of surgery. I was continuously put down by doctors, told it was my weight, told it was my fault, even told that I was too young to have back pain! The pain is very real and has gotten to the point where it has paralyzed me at times. 

This system needs to change. Stop punishing chronic patients that follow the rules! Stop punishing patients for a problem that was not started by us! Stop giving excuses for why the recommendations should stay in place! Stop treating us like criminals! Give us back a quality of life! Stop the increase of chronic pain patient suicide due to LACK of PROPER PAIN RELIEF! Put rules in place that PROTECT chronic pain patients! Want to help prevent accidental overdoses? Make it mandatory that all narcotic prescriptions have a built in lid timer that count up from the time it was last taken. Keeping track of the last dose is hard when the med is wearing off and the pain is raging. Make the public more aware of the difference between addiction (behavior based) and dependence (chemical based, no cravings). 

I have talked patients down from comitting suicide and have seen the pain commu nity mourn when a beloved member takes their life because the pain became too much to handle. 

Don't wait until this affects you as well! Help speak up for patients nationwide that need YOUR help to tell our government that they NEED to let the DOCTORS do their job, they went to school to do just that. Chances are, someone you know or love has been affected by this and you may not even know. Help advocate for the patients that need your help and change a life and you may just save a life!



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