Someone help this woman! This is a crime! They treat animals better than people so what’s wrong with this picture? This must stop! People are committing suicide because they’re being denied pain medications! Please watch this short video and it will open your eyes to the TRUE OPIOID crises going on in the United Stated of America! Someone please help this woman and the other 100 million chronic pain patients who are in agony now bcz of what’s being misunderstood as addiction, hyperalgesia and worse! This lack of opioid pain medication to true legitimate chronic pain patients, has to stop! We are not disposables! We are in agony and we are human beings with rights like every living soul! Please learn about the difference between dependence and addiction! Addiction is a non-stop ruminating, craving and a need to get high from taking some kind of medication or drug! People with Chronic pain get “addicted” 1% of the time, due to pain medication! We are “dependent” NOT addicted! Our bodies will go through a physical withdrawal when the meds are taken away! But we do not WANT to need the pain medications. We do NOT get high or euphoric from the opioids! We get to live some semblance of a life outside of a hospital or a bed in our homes! Please help because too many people have died already! Stop being hysterical and blaming real and legitimate pain patients because someone you know died from an overdose! I’m so sorry for you, but don’t punish everyone because you’re in misery! Find compassion in your heart and watch this woman’s story for about 3-4 minutes! Thank you!
Untreated or under treated Chronic pain can kill! There are many articles that discuss this topic but I’m writing from the chronic pain patients perspective. Most things that are written are authored by Dr’s and others in the medical profession. But for me and for us this is real! Sudden cardiac death is a frightening topic to discuss. This is true especially because many chronic pain patients live with the risk factors that are written about in the articles and medical journals etc. Personally, I have a pacemaker for not only Dysautonomia & POTS, but for an Arrythmia called “Sick Sinus Syndrome”! Additionally, I. live with Atrial fibrillation, MVP & TVP (mitral valve & tricuspid valve prolapse), CAD (coronary artery disease) & long QT syndrome! In 2005, I had a heart attack and in 2006, a CVA or stroke. Enough about me, but I’m trying to paint the picture that I am not alone in this. Many chronic pain patients have several comorbidity’s. If the CDC continues with this crazy “war on opioids”; taking our pain medications down to dangerously low & restricted levels, people will die! I may die as well, and I’m not being dramatic!
So many people, including our clueless government representatives do not realize that severe untreated chronic pain can lead to death. They think it is just an innocuous “pain in the behind” for those that live with it. It doesn’t interfere with their lives or the lives of the CDC, FDA and several others such as, Big Pharma and the many physician run drug treatment centers in the USA. But when suddenly, chronic pain “hits” one of their family members, then they start advocating more. But why do they have to wait until it happens to their family members or even themselves? Why can’t they listen to our cries of suffering now, before more of my friends die suddenly from the agony of living with the daily unrelenting chronic pain without any reprieve? Does the government or the general public even realize that Veterinarians get about five times more education hours than medical students get for human beings living with chronic pain? I read that there was a study done in 2011, and the Journal of Pain found that the United States medical programs only allot approximately 5 hours of teaching time on the management of chronic pain. Our Canadian neighbors give their medical students a whopping 19 1/2 hours! This is where the medical professionals who educate the incoming physicians are at fault for their part in this “crisis” as it has been called.
Just this past week, the pain community, including the support groups that I administrate online, lost another chronic pain warrior. I lost my 7th friend in just over 2 years! This is the 3rd friend that I have lost to chronic pain and patients diminished access to pain medications. In my experience, it continues to be the same story; in that the chronic pain patient tells their significant other or family members that they are feeling worse. They go to bed to try and relieve their pain and they never awaken. My friends husband found her slumped over in her chair, late at night when he checked on her. It’s not unusual for most pain patients to stay up very late watching T.V. or “playing” online to keep our minds off of the pain for awhile. When the coroners do an autopsy on a person who has died suddenly, and they find “drugs” in the bodily fluids; they blame the opioids. These are educated people, toxicologists an forensic medicine physicians. They seem to just blindly blame these deaths on the opioids instead of seeing the possibilities that exist. It could have been death from pain that was unrelenting and untreated and/or misdiagnosed and under treated. Maybe more of my friends died from the sudden drop in their pain medications?
What is it going to take to get the government to listen to our pleas? I’ve written and sent the same letter to the White House twice and have gotten no response. I’ve made videos on YouTube to explain this crisis in Chronic pain community. I was hoping for at least one of them to go viral. But instead, the viral videos are about usually someone falling off of a chair or a baby biting his brothers finger! How do we get them to listen to us? I agree with the fact that Opioids should not be the first option for people with chronic pain. I also agree with the research that’s being done on medications that cannot be crushed or melted to become more potent for those that do abuse them. But for those patients who have been on a “normal amount” and steady dosage of Opioids for a long period of time; why not leave them to the physician(s) that know them? Let the Doctors who’ve treated them for many years, take care of their patients without fear of Federal agents breaking into their clinic during hours and scaring everyone half to death! If someone has been taking opioids for a long time and the dosage remains the same and it’s working for them, can we not leave them alone? Let them live some semblance of a life outside of their bedroom or recliner. When I say “them”, I mean “us” and we are dependent but not addicted to these medications. These are not “powerful, strong meds that loop us out of our minds” as I’ve heard on several occasions. These are the medications that we need, in order to have a small amount of active time during the days. We aren’t asking for more and we agree to the submissiveness and feeling of personal character attacks with urine drug screening. We sign the contract with our pain management physicians. So why not just let us live our lives and stop attacking us and calling people who live with chronic pain, “drug addicts”.
Anyone who calls people living with daily struggles of unrelenting pain, “addicted”; needs to learn more and be educated about opioid use with chronic pain patients who have several high pain illnesses. Not only do they need to learn more, but they need to be empathetic and try to put themselves in the pain patients place for a moment or two. People, especially those in positions of power; need to think about what their lives would be like if they could barely get out of bed in the mornings. What if they couldn’t go to their fancy dinners or dances, due to chronic pain and and unrelenting fatigue? I’d say they wouldn’t like it very much and neither do we! How do we get these officials to learn the difference between the words “addiction” and “dependence” before more of my friends die from under treated pain or lack of any treatment?
I awaken each day; the first thing that I do is cry. I cry because I’m in pain and it is as though someone stepped on my back in the night and feels “broken”. My husband hears my cries and he goes and gets my pain medication. Medication that I’ve taken since 2005; and never more but sometimes less. He proceeds to start making breakfast, coffee and give tap water to our Cat. It’s her favorite thing in the morning aside from running up the stairs to get me after about 20-30 minutes. My husband says “Luna, go and get Momma”! She bolts up the stairs and “Meows” at me to get up. She doesn’t stop until I am upright and together we go down the stairs. It’s almost 7:00 am, and most likely I just went to bed at 4:00 am. I have some tea and toast. We chat a bit and he goes to work.
I have choices to make and they are not easy ones. My oldest daughter only lives 2 or 3 blocks away, with her husband and our two eldest granddaughters, ages 4 and 2 1/2. We see each other often but it’s so hard for me to fight the deep, deep fatigue and pain to do a lot of outings and I just am not able to babysit alone, without my husband there. I think it upsets her and I feel so bad inside because I cannot do what I wish I could do. The first year and a half that we were reunited (**my daughter left home at age 18 and was away for 10 years. This is not a story about those very sad times. This is about the reuniting of a family that was broken because of a car accident. My daughters were used to me being and doing everything and suddenly I could not do anything, not even dress myself. My eldest ran from the pain and surgeries), I think I ran on adrenaline. I saw her/them daily and then afterwards, I came home and crashed. Was that fair to my husband? No, it wasn’t! Did he say one word about it to me? No, because he was so happy to see my heart whole again. It was broken for 10 years!
So now it’s been about 3 years and so much has happened. I lost my Dr. of 12 years and the old pain medications that made easier for me to do more, it seemed. My pain Dr. is much better now and the regimen that I’m on is safer. But I’m unable to do the activities that I wish to do with them. If I was the person that I had been, I would be making snow angels with them in the snow. I’d be baking cookies and running around playing tag and “Duck, Duck Goose”. I do play some “sit down” (for me) games with them and we have tea parties. We watch Disney movies and I love it when they sit close to me and play with my hair. I used to take my walker to the zoo or on daily outings. I sat down when I was tired and I just was happy to be together. I’m still so very happy to have everyone together. I could never have had a happy life without both of my daughters and my grandchildren it.
Time has changed me and now I am tired and in pain much faster; more deep than before. In 2013, my CRPS changed from being in my feet and knees; to “severe systemic and disseminated”. It happened after what was supposed to be a 45 minute surgery but turned out to be a 3 hour heart and pectoral muscle rebuild surgery. I’ve never recovered and have felt a deep deep fatigue since then. If I do something for 2 hours one day, then I’m in my recliner for the rest of the day. I don’t want it to be this way, I don’t like it at all. I want to spend a whole day at the zoo with my granddaughters. I feel that my oldest daughter gets so frustrated when I cannot do the things I pushed myself to do at the beginning. Nobody understands “Invisible Illnesses”, not even our own families or friends. We used to go to dinner each Friday with my best friend and her husband. I’ve cancelled a few times in this past year and now I can feel a difference. Things that I wish I could do, I no longer am able to do. I love and look forward to babysitting when my husband is home and he is with me. He is there so that when I start to be too tired and in too much pain, he takes over.
But I lose friends and have lost people related to me. My own family cousin, who’d been my best friend for years; stopped talking with us after the car accident. My husband had called and asked her to come over because I could not be left alone at the beginning. I couldn’t dress or undress myself. I couldn’t even go to the rest room without help. My cousin and another person who was a good friend of ours, told Craig “No, I just can’t help because it’s too sad. When I get sad, then my family is sad and I cannot do that to them.” She took herself out of my life and so did the rest of my cousins, and family. I called my own brother after the accident from the hospital. I had been unconscious and when I finally got to a room, I tried to reach for the phone and missed. I hit my cheek instead. I called the only number that stuck in my head due to the TBI, it was my oldest brother. He answered the phone and I told him I ‘d been in a car accident, a bad one. I told him I was in the hospital and he answered back by saying, “Oh…you need someone? …..CLICK” and he hung up on me. Craig is my hero and the only person who’s ever truly loved me unconditionally. He’s there when I need him and when I think I don’t think I need him so much.
One day during the Summer of 2002, the sun was shining and my husband and I were walking hand in hand, sipping lemonade at an outdoor Art Fair. We were enjoying the warm air and each other’s company as we walked hand in hand. Afterwards, we’d decided to go into town for dinner because our two teenage daughters were busy with friends for the day.
We were driving on our way to dinner when suddenly, I heard my husband shout out “OH NO!” I looked and saw a car coming straight at us. Instinctively, I pulled my legs up to my chin into the fetal position and screamed. What happened afterwards is a blur, but I do remember hearing a very loud noise upon impact and then the smell of smoke. Next, there was only a dead silence. I remember wondering if we were dead for about a nano second. Suddenly everything went dark and silent. That’s all I remember about that day, except short little pictures in my mind of the ambulance ride, hospital & ER..
Once I was admitted to the hospital, I do recall being very upset because I could not walk. No one would come to help me when I tried to call for the nurses. It was hard to use the “nurse call” button because my rotator cuffs were torn in both shoulders. Both of my knees had torn Meniscus’ and I had a ruptured Biceps tendon. There were just too many injuries and then the multiple surgeries that followed for many years. I have Degenerative Disc Disease and suffered multiple herniated and bulging discs at C4/5/6 and L4-5/S-1 with Radiculopathy. I had an MRI which showed that I was most likely born with Arnold Chiari Malformation I. It must have been “sleeping” all of those years, the Dr.’s told me. They explained that between the severe whiplash from that MVA & a whiplash that I suffered from a previous car accident; my Chiari had been awakened. I could not hold my head up at all. The pain was horrible and intense. My husband says that when they were doing my X-rays back in the ER; I was screaming because it was so painful. He said that I was crying out so loudly, that people standing in the hallway left; because they could not handle listening to the painful screams. I mostly remember my back and neck hurting so badly that I could think of nothing else.
My husband also told me that he kept trying to tell the Dr.’s that “something was not right” about me. He thought that I was acting very different from my “normal” personality. He said that when he told them I was acting “not myself”, they sent up a Psych consult. Then they told him that “I couldn’t handle the pain because of the abuse I suffered growing up and in my past marriage”. He didn’t know what to say although he knew that could not be true because I hadn’t been “different” just before the accident? After only 5 days in the hospital, and after their lack of being proactive to help me with my pain and injuries; my husband signed me out against medical advice. He took me to the Neurologist who had known me for 3 years at that point.
The Neurologist really got the “ball rolling” and had me tested for anything and everything that could have been wrong. At that point I was in a wheelchair, could not hold my head up and needed a yardstick behind my head/neck with a pillow on it. My husband rigged up a way to help me have something to rest my head upon. I could not dress myself, go to the bathroom alone or even cut my own food.
We finally found out what was truly wrong. Our questions were answered when I was diagnosed with a TBI or “Traumatic Brain Injury”. I went through 6 months of intense PT, OT and speech therapy. After that, I was in Physical therapy for 8 more years and brain injury rehabilitation for 3 full years. The brain injury rehabilitation was done after I’d done poorly on the Neuro-psych testing. Over the next 3 years, I was in a brain injury rehabilitation program. I was there Mondays through Fridays from 9:00 am until 3:00 pm. I had to have a driving company take me to and from the rehab center daily because I was unable to drive due to pain and nerve injuries.
I could not comprehend what I was reading and had a hard time finding the right words to use while speaking. I was more than forgetful and couldn’t remember my phone number, social security number or my own address. The tests showed that my short term memory was terribly low. I went to speech therapy, Physical and occupational therapy and had to re-learn how to drive via Drivers Rehab training. I did pass in the end, but can only drive a few miles for personal errands. They told me they were afraid that I might get someplace and not be able to find my car in the parking lot. Also, the nerve injuries in my legs, knees, lower back and neck; make driving terribly difficult and fatiguing.
It was and is very frustrating to go from graduating with honors and having a “photographic memory” to not be able to read a full book any longer. I had read the first 4 “Harry Potter” books and was in the middle of the 5th book, when the accident happened. I still cannot and have not been able to finish the rest of the books in that series. Whenever I’ve tried to read any books since that time; I end up reading, reading again and then re-reading. Every time I put the book down and then try to return to pick up where I had left off; I cannot remember most of what happened before that point. I’ve tried audio books and it is just the same. I try to listen and whenever I stop and try to go back to it; I’ve forgotten the whole beginning again. This brain injury has changed my life because I have issues with: double vision, severe dry eye, incomplete blinks, prisms in my glasses and continued worsening lowered vision. I have a moderate hearing loss and have 2 hearing aids now; when ironically, I was an Interpreter for the Deaf before that car accident. I worked at a major University hospital, Interpreting for Deaf patients and also at a school for the Deaf with Deaf children. My life was and is changed forever because someone was distracted and then ran through a red light. My husband’s life and the lives of my daughters were also changed forever in the blink of an eye. I had been a very involved mother who cooked, cleaned, did laundry and drove a mini van full of teenagers. I still made sure that I went in my wheelchair to every swim meet and dance competition. I didn’t want them to think my love or support for them had changed in any way.
I wanted to mention that I still have bad migraines, usually they are “Chiari” migraines. I have balance issues and my personality changed in that I get very emotional now, when I wasn’t like that before the TBI. I also have a hard time making decisions; along with having the same issues that I’ve had since the MVA. If you have had a closed head injury, a TBI or an MTBI, please contact Brain Injury Association for information.
This writing turned into an article for the Health News Magazine that I author for, and have since November 2016! I love it and am enjoying this so much! I wanted to make sure to send you the link to the edited version of my blog post, which is the article of the same name. It is here: http://NationalPainReport.com/Opioids-kill-pain-not-people-8833207.html ….
I wanted to write something to enlighten the non-pain community as well as those who are in pain but are either new to the pain or have not had much of a relationship or experience with Opioids. Opioids can cause “dependence” just the same as many anti-depressants, blood pressure meds and Beta blockers. Dependence is not the same as addiction and I will try to explain that in this writing. People who take opioids for chronic pain illnesses that carry a # of 43 on the McGill pain scale, for example: CRPS or Complex Regional pain syndrome (and many others); do not get a “HIGH” from taking them. When you have very extreme chronic daily pain, the Opioids just relieve the pain and do not give a Euphoric feeling whatsoever. Of course, I am writing from my own experience and from the experience of being a patient health advocate since 2007 and a patient leader, as well as an administrator for several chronic pain illness groups.
Opioids do not kill people, but they do kill the pain for awhile. If you ask a person with chronic pain, if they enjoy taking these medications; they will all tell you “NO”! We do not like that we need or depend on these meds for relieving our daily high pain. We wish that we did not need the Opioids and we would prefer to just live pain free. Many people that do not experience daily chronic pain, have the notion that Opioids are killing people. This may be partially true, but not so, for the true chronic pain patients and the pain community. Those who die from taking Opioids are usually mixing it with other things from the “streets”. They mix it with Heroin or crack cocaine or other “street” drugs; sometimes alcohol too. Others, for example, celebrities who have passed away from taking Opioids, have mixed it with other substances. The news shows us that “another celebrity has died from an Opioid overdose”. That’s not the whole truth, because that person had other substances in their bodies, we would later find out; after getting the coroner’s report.
In my research, I found an article on the website for RSDHOPE.org and it says this: In an article written by WebMD in collaboration with the Cleveland Clinic states, “Some medications used to treat pain can be addictive.Addiction is different from physical dependence or tolerance, however. In cases of physical dependence, withdrawal symptoms occur when a substance suddenly is stopped. Tolerance occurs when the initial dose of a substance loses its effectiveness over time. Addiction and physical dependence often occur together.” People who take a class of drugs called opioids for a long period of time may develop tolerance and even physical dependence. This does not mean, however, that a person is addicted. In general, the chance of addiction is very small when narcotics are used under proper medical supervision.” The article goes on to say, “Most people who take their pain medicine as directed by their doctor do not become addicted, even if they take the medicine for a long time.” You can read the original article in its’ entirety. (this was found on the RSDHOPE.org Website here: @http://www.rsdhope.org/addiction-dependence-or-tolerance-to-opiods.html). In that same article at RSDHOPE.org, they go on to explain that: “Another article, written by Leanna Skarnulis, states, “Chronic pain patients often confuse tolerance with addiction. They become fearful when the dosage of a narcotic has to be increased, but it’s normal for the body to build up tolerance over time, says Simmonds, spokeswoman for the American Cancer Society. “Patients don’t get a high, and they don’t get addicted.“
I was researching for this article and I read about Elvis Presley, Prince, Michael Jackson and others who died from what was called or labeled “Opioid overdose”. But if you read more and dig deeper, you will find that the larger percentage of these people and others, die because they have mixed a prescription Opioid with other medications, drugs, street drugs and/or alcohol. I’m not saying that nobody died from taking Opioids in an overdose. I will defend my cause by stating that the every single person that I’ve come across within my own pain community (*which is a large number of people because of my being a patient health advocate, Ambassador for US Pain Foundation, mentor for newly diagnosed CRPS patients and a patient leader for WEGO Health and founder/admin. for 4 different kinds of chronic pain support groups) has told me that they do not take more than what is prescribed, therefore they are not “addicted”. I will also state from my own experience, that people living with daily high pain illnesses, do not “crave” their pain medication. I have never craved my medicines, nor do I seek them out or think about them every day or continuously.
The chronic pain community has been talking about the Opioids more lately and we have been afraid and worried. This is happening because there are “people” with power who are trying to take away our small semblance of a “normal” life with lowered amounts of pain. I understand that there are parents who’ve lost children and Children who’ve lost parents due to drug overdoses. I realize that people who are uninformed or misinformed regarding chronic pain; think they are taking on a cause or “helping”others because of their loss. I feel deeply sad for anyone who’s lost someone that they love from a drug overdose or for any reason, for that matter. It’s a bit similar to what used to happen when we were children in a classroom at school. The teachers would punish the entire class for something that one child did and he would not confess to doing it. The entire pain community should not be punished because of the actions of some.
There are some other reasons for The Opioid Debacle that’s happening right now around us. There are those “persons” who make money off of our chronic pain and suffering. People who make a fortune doing invasive and dangerous surgeries on the pain community. Also the many different therapies and treatment modalities that insurance doesn’t cover, for the most part. There are PROP physicians and others who say that Opioids don’t help chronic pain! The latter is an untrue statement because I’m here today as a chronic pain patient who does NOT and has not gone up in dosage in many years. I have experience being with many persons in the chronic pain community who will testify that taking a routine and regular dosage of Opioids, does help relieve their chronic pain. We are not addicted, we do not seek out or crave the Opioids and we deserve to be able to just “take a pill” that has little or no side effects, for many.
Lastly, I would like to say that there are advocates in physicians and others who truly want to help those with chronic pain. One of our biggest advocates, is a physician named, Dr. Lynn Webster (www.LynnWbsterMD.com). He is someone who has been trying to help our community. Dr. L. Webster, M.D., has a book out called “The Painful Truth” (www.thepainfultruthbook.com) and now there is a movie with the same name on PBS also. For anyone who is interested in learning more about chronic pain and how medications like Opioids can help; here is the link to the PBS broadcasting : The Painful Truth .
**HEY, Please follow me on TWITTTER at these two Handles: @RASEforCRPS and @ Ppl_InPainUnite …(RASE stands for “Research,Awareness,Support and Educate)
I married to get out of the house, when I was just 20 years old. That lasted 10 weeks and it was so terrible that I won’t even discuss that time period. Luckily that marriage was annulled and I moved away to another city to work at a school for the Deaf. I lived between my 2 aunts homes and got to work with Deaf children. I loved that job and I was also Interpreting for the Deaf at a great church. I got to participate in 2 drama groups that did sign language or “ASL” to songs and choreographed dance. I had a wonderful time during the year that I lived in Arizona. It was 1982-1983 and I celebrated my 21st birthday there and was part of a church youth group with wonderful friends.
I arrived home from Arizona and later met someone. We dated, got married and we were married for 8 years. We had 2 daughters, a dog and a beautiful home. I won’t belabor the story of how the Marriage ended because people can be hurt still today, from that “story”. I will say that I obtained help from a shelter and the Women’s Resource center. I moved out of our home a few months later when my older daughter finished kindergarten. Their father moved 1800 miles away and rarely saw them. I took care of them all by myself. I was the only person that was always there for them! Even if I had to leave my job in the middle of the day to be there for them and return to work afterwards; I would do that. So much has happened in my life. Most people would think that it’s horrific, but I soldiered on. I was almost completely alone but the three of us had each other. We were very lucky to have received some help from some very good people, churches and counselors.
When my oldest daughter was in 4th grade, I went on field trips and I took every chance possible to help out at the girls’ elementary school. I started a “Sign Language club” at their school, for a group of 4th and 5th graders. I taught 35 children some songs in Sign Language and did that for about 4 or 5 years. I love children and had so much fun interacting with them. I would teach fun songs in Sign Language and at the the end of the year we would have a show for the parents and the rest of the school. The “Silent Impressions Sign Language Club” was after school each Friday. I had that day off from my job and used it for volunteering in the classroom or at school and for teaching the Sign Language club. Towards the end of that year, my daughters’ teacher and I started to discuss meeting up for a coffee. He was a single dad and I was a single mom but we decided not to date until the school year was finished. Once we started dating we found that we were truly “soul-mates” and a little over a year later; we were married in the Wedding Chapel on Valentines day 1997.
One Saturday afternoon during the Summer of 2002, my husband and I were meandering & sipping lemonade at an outdoor Craft fair; while deciding where to go for dinner. The girls were with their friends and so we headed towards our town to a restaurant. As we were driving through a green light, a man ran through the red light and “t-boned” our mini Van with his SUV. I only remember a terrible burning smell after screaming “OH MY GOD”! The “lights went out” and I have vague memories of being in an ambulance and at a hospital and crying due to horrible pain. Luckily my husband was not hurt and a Police officer took him home to get our other car and our kids. I have no memory of the time without him being there with me.
I could not stand or barely move. My husband says that people were leaving the halls because my screams of pain were too hard for them to hear. My case was given to a trauma Dr. and I was admitted to the hospital. After 5 days my husband called my Neurologist (who I knew because of a Long thoracic nerve injury in 1999); and signed me out against medical advice. The weren’t doing anything for me. My husband told them that I was not acting like myself. I wet the bed and could not even stand to go to the bathroom. Instead of diagnosing me correctly with the TBI, that I later was finally diagnosed with; they sent up a Psych consult. They told us that I was “acting that way due to being abused”. My husband stayed with me the whole time and it was still a horrible experience. I left the hospital and that’s when questions started being answered. My then, G.P. and Neurologist helped get me the testing that was needed. I was found to have 2 torn rotator cuffs and multiple herniated/bulging lumbar and cervical discs. I had a torn Meniscus, sprained ankles and wrist. Also, I was diagnosed with Chiari I malformation, which I was born with but until the MVA, it was “sleeping”. Well, it awakened and I started having the worst migraines in the back of my neck and head. I could not hold my head by myself. My husband had to put me in a wheelchair with a yardstick behind my back and head with a pillow holding up my head. I couldn’t dress or undress myself or even go to the restroom alone. I couldn’t cut my own food or sleep in my bed. The insurance company sent a hospital bed for me to use or I slept in our recliner. I was in the most pain I’d ever known, outside of childbirth. The Physical Medicine & Rehab Dr. sent me for Neuro-Psych testing and I was found to have a TBI or “Traumatic Brain Injury”. The report said that my “short term memory was in the toilet”!! I went to a TBI Rehabilitation Center, daily from 9:00 am – 3:00 pm for 3 years. I had several different areas of nerve damage. It was discovered that I have a convergence insufficiency in my eyes and Moderate hearing loss in my ears. I needed Prisms on my glasses and 2 hearing aids. As I continued to faint nobody would help me or even listen. My husband knew something else was wrong and so did I. But to get Dr’s to listen when things are complicated and when so many things wrong; is very difficult. I saw a Neuro-Cardiologist because the TBI center sent me to him finally because of the fainting. I was diagnosed with Dysautonomia and POTS. I had Coronary spasms and a permanent pacemaker was placed. I ended up having 8 surgeries! I had visited so many shoulder Dr’s but none of them would listen to my issue regarding a “nerve zing” that went down my left arm from my left shoulder. One Dr. said to me “What part of “I can’t fix it, don’t you understand? Is it your brain injury?” OMG!! He was horrible and while I was walking out with my walker; the girls in his office looked horrified by what their boss had just said to me. I had several awful experiences with physicians, until one finally listened to me. It only takes ONE Dr. Folks! One to listen to you and help you. I ended up finding out that during that entire year that I was visiting shoulder Doctors; my biceps tendon had ruptured during the accident and it had grown onto the bone incorrectly. I had to have open shoulder surgery! They had to un-attach my Biceps tendon and reattach it with 2 screws. It was very painful.
I went through so much! Later, I had my 7th surgery, which was in 2007 on my right foot. It was the start of another nightmare! I was told that it would be a 30 minute surgery. I had been put on Coumadin, a blood thinner; due to having a heart attack in 2005. Following that Heart attack, I was diagnosed with Atrial fibrillation. After that, in 2006, I suffered a CVA or stroke. The surgeon didn’t want to take me off of the Coumadin and so she put a blood pressure cuff around my ankle to stop blood flow to the right foot. The surgeon came out and told my husband after 90 minutes, that “once inside, the foot was much more gnarly” than she originally had thought. It took much longer than expected and there was no blood going into my foot during that time. Five days after my surgery, I was hobbling along in our kitchen and suddenly a big golfball sized lump popped out of my ankle and was purple, black and blue instantly! It felt like knives sticking in my ankle and I was writhing in pain. My husband took me to the E. R. but nobody wanted to help me. I sat there crying in so much pain while they “were waiting for another ambulance to come for the girl in the next bed who was “stable”. I was crushed again that no one would help me. We paged the Dr. who did the surgery and left the E. R.! She told us to meet her at the surgery center the next morning. I had to make it through the night like that! It was so much pain! She said that the “synovial joint sac had burst over my ankle joint “ and that is why it was so painful! She gave me Fentanyl Lollipops and told me to take them until the swelling could go down. That would take time & then the pain would lessen, slowly. I went for my 6 week check up and told her that the pain was worse than before I started. She told me that I had “a little RSD” and gave me some “Lyrica” I waited and things got worse and the Lyrica was horrible with nasty side effects. It did nothing but make things worse for me. I went to another Orthopedic Dr. and got a 2nd opinion. He walked by the room and said that my foot looked like “classic RSD” and he sent me directly to a pain clinic.
Prior to that MVA, I had only known the pain of abuse, and non physical types of pain. Childbirth was painful because I had 2 C-sections. The second time was a C-section after 43 hours of labor! But it was worth it because I got to have a beautiful baby both times! Also, there was an end to the pain of labor! There is no end to my current pain. The CRPS or “RSD” has gone systemic or full body since my 2nd pacemaker placement in 2013. Everything that could go wrong, has gone wrong. Mostly, because Dr.’s would not listen or had a preconceived notion of me and who I am. But I am strong! I am a survivor and it’s time to listen to me! I’m fighting for the pain patients and I won’t give up.
Are your medical conditions/illnesses very complicated? Do you have more than the average person’s share of visit’s to medical specialists’? If you are anything like me, with a variety of high pain illnesses, then the answer to these questions is a definite “YES”. Most of us who are “complicated cases” have had experiences that most healthy people wouldn’t be able to fathom. It feels as though I’ve been treated with less respect, since I’ve become a chronic pain patient. I know this because I was once a healthy person. I was listened to and given treatments or tests to find answers. I went to a specialist several years ago, who should have known what “RSD/CRPS” is all about. A Dr. who should have known what the letters represent. He took my husband and I into his office and sat us down in small chairs in front of his huge desk. He barely glanced at the packet of information that I’d given to him. I bring it to each new Dr. appointment. The idea is to make it easier for them and for me. I don’t have to continuously re-write answers on every new patient questionnaire. The physician can flip through very clear descriptions of my medical history. This Dr. looked down at the packet of information for just a couple of short seconds. He looked up at me and said “So what is R.D.S.”? Really…. What is “R.D.S.”? I looked at my husband, gave him the signal and we got up and left. But not before I explained to that Dr. that “It is not called R.D.S., it is R.S.D. and also known as Reflex Sympathetic Dystrophy and/or Complex Regional Pain Syndrome”.
I went to another specialist who told me that even though I have legitimate high pain illnesses, including systemic CRPS, my “pain meds are way out of his league”, and “there is no reason for me to do P.T. or O.T.” Then he told me if I “wanted a Cortisone injection I could have one”, but otherwise nothing he could do because “everyone over 50 has a torn meniscus”. It was so strange because the first few times I’d seen this Dr., it was right after my car accident. He did the appropriate tests and then he did surgery on my 2 torn meniscus’. But some time had passed and now I was a “chronic pain patient” with several illnesses. I felt like a Pariah, as if now I was not to be taken seriously. Next, he entered the room with a large needle. I knew what it was because I’d already had Cortisone injections to my knees s/p my MVA in 2002. I started to cry. I’d done this 7 times before, but never with a diagnosis of “severe full body/systemic CRPS”. I’d always been stoic and therefore felt respected by this particular specialist. He told me “I’ll come back when you’re not hysterical anymore”. I told him that injections can make CRPS worse. In between tears I reminded him that it hurt me very much to even blow air on or touch my knee. I just couldn’t imagine that kind of injection with this kind of pain. He left the room and came back a few minutes later. I was afraid that he wouldn’t help me again if I didn’t comply. I should have listened to my heart. But fear of a person in a position of “power” over me (or so I felt at the time), allowed me to let him hurt me even more. He had the nurse spray the Lidocaine skin numbing spray, continuously, as he put the Cortisone injection into my already burning, aching, freezing, sensitive left knee. In the end, my pain worsened and the swelling was more than when I started.
Another series of unfortunate events was when I visited several specialists for my shoulder injuries after the car accident. I kept getting told that I had a “torn Rotator cuff” time after time. But I knew that something else had to be wrong because they were saying that I had a torn Rotator cuff in both shoulders. But my left arm had a nerve pain that went down my inner arm whenever I moved a certain way. I went through this pain for over a year and through at least 5 physicians of the same specialty. I didn’t give up, not even after one of the Dr’s said to me “What part of -“I can’t fix it, don’t you understand? Is it your Brain injury?” I quickly left in tears that day (*because I do have a TBI from the MVA) and never looked back. I finally found a Dr. who listened to me and I was finally diagnosed with a ruptured biceps tendon, that required surgery with 2 screws to repair it. Someone finally listened to me and my inner feelings were correct.
Several similar incidents have happened to me and I know they’ve happened to many of you. I’d like to share one more experience; the most dangerous one for me. There was a time when I was passing out again and again. I was vomiting from all of the different medications they’d been giving me to “help” with the various pains s/p the MVA. I was in a “Six months and out” rehabilitation center. Meaning whether you get better or not, you are “kicked out after 6 months”. It was a terrible program and it is a story for another day. But what they did to me was unforgivable. Nobody was listening and no one was helping me. They forced me to swim in a pool & get dressed when I could barely button or unbutton anything for myself. They tried to blame it all on the fact that “I’d been abused”. They truly thought I was “faking” or manufacturing the fainting spells! This was the one and only time I’ve ever been accused of anything like that. They strapped onto an exercise bike while I was suffering from 2 torn rotator cuffs & 2 torn meniscus’. I tried to yell out to two physical therapists who were talking to each other. I yelled to them that I felt faint and thought I might pass out. I did faint while still strapped onto that bike. They had to call an ambulance and as I lay there waiting, there was fear in their faces. A shakiness in their voices as they told me to “lie very still”. My heart rate was only 24 bpm and my blood pressure was only 70/40. I was later told that I could have had a stroke with my stats this low. I was hospitalized and that’s when I received my first permanent dual chamber pacemaker. I was watched all night and then diagnosed with “Sick Sinus Syndrome”, a bradycardia/tachycardia arrythmia in my heart. I was also diagnosed with Prinzmetal Angina or Cornonary spasms, Long QT syndrome, Atrial fibrillation and more. After my recovery, I found a great specialist in Autonomic system failure, POTS, pacemakers and EPS. I’ve been treated by him ever since 2003. He is the best Dr. I’ve ever known and I feel very lucky to have him.
But do you see how we are not listened to or believed at times? We are sometimes not taken seriously because we are “too complicated” or just because we have many illnesses. Some Dr’s don’t want to get involved in more than earaches and sore throats. Things they can “fix”. They can’t “fix” us and so some don’t want us as patients. Many pain patients have been through bad experiences such as car accidents etc. We deserve to be respected the same as anyone else, if not, just a bit more!
If you go to a Dr. and:
- he/she stands by the door and cannot wait for you to finish speaking, before telling you “Ok, we’ll see you in 6 months, nice to meet you”.
- If you go to a physician who acts like you have “too many things wrong with you”.
- If you can tell that they think you are just too complicated and they don’t want to be involved.
- If you bring your records and all of your information and they go against your other physicians diagnosis’
- If you get put down, made fun of or called names
- If the Physician doesn’t have a clue about your illness(es), for ex: “RDS or RSD”
- If They want to ignore your other Dr’s treatments and start all over again
- If they act like you’re just too much trouble and they don’t want to be bothered
LEAVE….DO NOT PASS GO! Don’t feel that you have to finish your appointment! Many times I give my husband our secret “nod” and we just leave before the appointment is over. There’s no reason that you need to stay anyplace that you do not feel comfortable. You don’t owe any Physician your time or money, if they aren’t treating you respectfully. Remember that you’re paying for their services. If you aren’t being listened to or taken seriously, please be on your way. It doesn’t matter how many Dr’s you visit until you find the one that finally “clicks”. Don’t give up; there will be one that finally “gets it” and understands your issues. There will be that one to finally help you