September 10, 2013

My name is Jessica. I am a 27 year old female that resides in **Illinois. I am a junior nursing student at ** College of Nursing to obtain my BSN. I have lived with chronic pain for three years and here is my story:
Ever since I can remember I have always been able to do things with my body that some may think to be weird or gross. I can spin my elbow around, my fingers bend back to an extreme, I can dislocate my jaw etc. I worked as a patient care assistant in the hospital at 18 years old. I would have discomfort lifting and completing my work duties and go home exhausted after every shift. My hips, lower back and knees felt as though they were crushing. I always thought this was normal. I just assumed that six car accidents later (from the ages 16 through 18 years old) my body was tired. One morning I woke up and my neck felt as though it had a kink in it. I was not able to turn my head. Ignorant and immature I allowed people to walk on my back to try and “pop it back into place”. I eventually saw a chiropractor that was new to the area and he adjusted my neck. As soon as he adjusted me I felt worse. I decided not to go back. Eventually, I was unable to cope with the pain and sought out care with another chiropractor. He was not able to get me better and it only seemed to make things worse after a few visits so I stopped seeing him as well. I then went to another chiropractor that was recommended to me and they did X-rays and told me I had mild degenerative disc disease and when they adjusted me and I passed out. The nurse and the chiropractor said that I had a seizure when I was unconscious. I went to the emergency room and they gave me a cat scan. They said there was no reminisce of a seizure and sent me home.

From then on I decided I was done attempting to be “fixed” by manipulative technique. At the time I lost my health insurance due to my age (if I remember correctly). I obtained coverage through a financial assistance program at Blessing Hospital that allowed me to see a select few doctors at SIU. I was in fear of being adjusted so the DO I saw gave me medications to try and correct the symptoms. At this time my symptoms were a sharp sensation in my neck region, a dull achy feeling in my left shoulder and wrist, and my arm would get a tingling numb sensation when I would lay certain ways or if I raised my arm above my head. I was not able to handle the side effects of Cymbalta nor amitriptyline. He then decided to do injections in both sides of my neck, and in both sides of my upper trapezius area. I was in even worse pain after and I never got any relief. He then gave me an order for physical therapy. I was discharged back to the doctor after working for 1-2 months with the physical therapists. I obtained no relief and it actually made things worse. I then begged for an MRI. My MRI showed straightening of the normal lordotic curve and disc bulging at c5, c6, and c7 with only minimal protrusion on my spinal cord. They told me the MRI was not symptomatic to my symptoms and just gave me flexeril. The flexeril just knocked me out and I woke up more tense. I could not work with this medication so I only took it at my breakthrough moments. I began taking ibuprofen when I absolutely could not handle the pain any longer. This doctor was a resident doctor and finished his residency. Then, I began seeing another resident doctor. He referred me to a neurologist. I passed his exam and he ordered a brain MRI. That was normal. He did some labs and one came back slightly positive for lupus. Later we re-tested and it was normal. He then sent me on my way telling me if things didn’t get better he would suggest a rheumatologist.
I eventually began seeing a DO at Quincy Medical Group. He eventually did trigger point injections because he said I was “full of knots” and I could not relieve my pain. My body again did not take well to these. It inflamed me worse and I got no relief. My mother was seeing a physical therapist at this time and he had me coming in for free and did strengthening exercise, massage and heat. I again got no relief. (Although I loved the heat because it allowed me to relax) The doctor I was seeing at Quincy Medical Group referred me to a rheumatologist. He did blood work and my sed rate levels (I believe) were slightly elevated. We again re-tested two weeks later and they were back to normal. He put me on Savella and explained that I was having symptoms like fibromyalgia (my mother diagnosed with this as well). I tolerated the Savella quite well but it only took the tip off of the pain. I began exercising every morning at 5am at a cycling class to see if this would help and because I began to put on weight. One morning as I was cycling, I slowly felt a pulling sensation and it eventually began tensing my muscles up in the upper region. I stopped cycling and sat on the bike and tried to turn my head and couldn’t. I was in so much pain and began to panic. I went back to the doctor that did the trigger point injections in tears due to the pain and he would not see me. He told me to go to the walk in clinic because he was full. The walk in clinic gave me hydrocodone and sent me on my way. This medication did not relieve my pain even an ounce. I rested, took ibuprofen applied heat daily and about a week later I was able to turn my head again. At this point I hit a low emotionally and decided I was going to have to live with this. I sought counseling and taught myself how to cope with the pain. I cried every night in pain and eventually learned how to mask it from everyone.
For the next couple of years I lived every single day in pain and pretended that it wasn’t there by focusing on parts of my body that did not hurt. About every other month or every couple months I would wake up with what I call “a flare up”. I could not move my neck and would miss work and classes. My “flare ups” have gotten closer and closer together. Not only do I live with pain every day, but I experience episodes lasting usually a week that put my daily activities and life on hold because it was excruciating. I eventually quit exercising and just maintained a very strict diet to obtain nutrients that I thought would help. I also started to juice vegetables and drink that daily. This last year I noticed that these flare ups were happening more often and lasting longer. I have a headache every single day and my vision changes prescription every time I see my eye doctor. I have also been pregnant twice and both times I was told that the baby stopped growing and I would have to take medicine to miscarry. The last one was in December of 2012. A couple days after taking the medication I started having severe pain in my pelvic region. I felt as though somebody was ripping my pelvic bones apart. I went to the ER and they gave me 8 doses of dilaudid (one at a time of course). Nothing relieved this excruciating pain. Then, they sent me to surgery and performed a DNC.

Through the course of all this I had also been experiencing a gnawing, throbbing discomfort in my jaw and was having severe daily headaches. I began seeing my orthodontist that kindly completed a TMJ treatment on me at no charge in hopes to give me some relief as he knew my situation. This consisted of a mouth appliance that I wore every night to bed, a tens unit for home, weekly massage, ultrasound therapy, and laser therapy? This took the extreme off however, I was taking ibuprofen every six hours just to manage through my day. After two months of this therapy I learned how to cope with that pain as well and just dealt with it.

In August of 2013 I began experiencing a radiating, burning pain down my left arm, under my arm pit all the way to my fingers. It felt like someone was setting me on fire. I went to the doctor and he told me I had hypermobility syndrome also known as Ehlers Danlos Syndrome and c5 facet syndrome. He told me to avoid chiropractic care, and to drink hot tea, take melatonin at night (because I was not able to sleep due to pain) and told me to put Vicks vapor rub on my nose and a cold rag over my eyes and do mediation. I explained I already did meditation through a program I had purchased called HeartMath. He put in another order for physical therapy. I went home with extreme hope that I was going to be helped and began taking melatonin at night. This allowed me to sleep better however, throughout the day I was in unbearable pain. I work part time as a pharmacy tech and within 30 minutes of my shift my hips, lower back and knees would feel like they were crushing and throbbing. I just dealt with it and went home and cried. On my breaks I would lay in my car and just pray that God would fix me. . At physical therapy they could barely touch me due to the radiating burning sensation in my left region and I could barely move my neck without sending shock like sensations throughout my upper region. Eventually, the intense level of pain that radiated in my left arm and armpit area began to taper down.

Recently, on August 23, the pain crept back down my arm, under my arm pit, in the anterior part of my body toward my collar bone and around my left scapula. I passed out in clinical simulation lab and when I woke my head was shaking vigorously. My nursing clinical instructors said that I convulsed the whole time I was unconscious. I then began to vomit. They took my blood pressure and it was 138/88. My normal is usually 90s/60s. I explained to them the situation and told them that morning I had taken a hydrocodone that I was prescribed for my kidney stones back in January in hopes to tame the severity pain level which obviously did not help. I went to the emergency room to get the pain under control. They gave me dilaudid and it did nothing. They gave me a second IV dose of dilaudid and my neck began to lock up and the pain intensified greatly. Then, they gave me a valium PO. I waited about an hour in tears. I could not lay back or it shot pain throughout my neck, scapula, and arm. I still had no relief of symptoms and they gave me an IV dose of toradol. For some reason this non-narcotic brought the intensified pain back down to the nerve pain I came in with but my muscles relaxed slightly. They admitted me to be sure that they could get the pain under control. The next day they sent wanted to discharge me. When I asked why this was happening and begged to know what was wrong with me they told me “you just have some musculoskeletal damage, I will write you a script for Gabapentin, follow up with me in a week”. I thought “okay, well I have no other choice”. I went home that day and took it easy.

The nerve pain came back severe that evening. I took the gabapentin. It again did nothing. I tossed and turned and just cried all night. The next day I went back to the SIU clinic and my doctor was busy. They got me in with another doctor and I just bawled like a baby. They wanted me to go to the ER but I refused explaining they did not help me. They decided to order an MRI and I went home. I just took ibuprofen and gabapentin laid on heat and tried to deep breathe and focus on a part of my body that did not hurt. This whole time I was trying to make it through the nursing program to obtain my bachelors in nursing. I got my MRI report back a couple days later and she explained that I am definitely not crazy and told me that I needed a neurosurgeon. I explained to her that I was dizzy throughout the day and nauseated like I was going to vomit. I also explained that on top of all this I was having problems with my hips and lower back, which caused discomfort to even walk to and from my car from the school (about two blocks). I also explained that when I wash my hair in the shower my legs begin to go numb and I immediately have to correct my posture and it goes away. She explained that was because of the Ehlers Danlos and that she did not recommend anyone here for surgery and to let her know who I decided to see so she could call in a referral to their office.


My current MRI report states:
- Findings: Straightening of normal lordotic curvature, At C6-C7 there is mild posterior spondylosis with a large left paracentral disc herniation visualized. This causes severe left lateral recess stenosis with mass effect and moderate flattening of the left ventral cervical cord. Mild/moderate left foraminal narrowing is present. At C5-C6 minimal posterior spondylosis is visualized with a small central disc protrusion which causes ventral effacement thecal sac and slight flattening of the ventral cord with minimal spinal canal narrowing. There is also apparent minimal left foraminal narrowing.
- Impression: C6-C7 large left paracentral herniation with severe left lateral recess canal stenosis and associated mass effect/flattening on the cervical cord. Mild/moderate left foraminal narrowing. C5-C6 small central disc herniation with minimal canal and left foraminal stenosis. No acute fracture or marrow edema. Straightening of normal cervical lordotic curvature

Since then I have been on the phone with multiple hospitals, doctor’s offices and clinics. Nobody will accept me because I don’t have insurance without paying a large fee up front or they want to refer me to the resident clinic. I need help. I am begging for someone to read my story and give me hope again. To give me surgery and answers to help me live my life again. Now that I have a lifting restriction of less than ten pounds I am no longer allowed to participate in clinical. Therefore, I had to take a medical leave of absence this week from the nursing program, for the rest of the semester. This is also devastating to me because I have pushed through for so long and now school is also being pulled out of my hands. I cannot work on my feet anymore due to pain, I can’t sleep, I have lost my appetite, I can no longer go to school, I have a hard time being able to concentrate, I can’t look down to read, I can’t get comfortable to even watch TV, in fact my lower back and hips are in even uncomfortable just sitting here long enough to type this. Ahhhh, and so far I have nobody willing to accept me as a patient without being able to afford it.

People look at me and see me as normal and not as someone who is in a lot of physical pain because I have learned to mask what I am feeling physically inside. I make people smile, laugh and I used to be a happy healthy person. I am begging that somebody will hear story and help me. I don’t want a doctor that is going to band aid me with medicine, pain management and injections. I need a doctor that is willing to listen, provide me with answers and perform surgery or a corrective method to repair my spine and help me get back to being a normal 27 year old female with a career driven goal of being an RN to do what I do best. That is to help people with the compassionate heart I have been given and aide in saving others’ lives. A new semester begins in January 2014 and I am pleading my case in hopes that I will be able to go back to school then or at least be on the road to recovery. I can provide current copies (as of late Aug 2013) MRI imaging with and without contrast of my cervical spine and X-rays of my cervical spine, shoulders, and chest. I also have imaging copies of brain and previous cervical MRI from 2010-11. Please help me…