What is it like living with the most painful pain condition on the planet? Well, this has been my reality for the past eight years. In March of 2018, I was recovering from viral pneumonia and so wasn’t feeling the best. I was walking down the sidewalk with my daughter and tripped over a lip on the sidewalk. When I fell, I landed on my right knee, right elbow, and then onto my shoulder. I was in excruciating pain. I made it back home as the fall occurred directly across the street from my house. The pain was awful, but I decided to wait it out. Five days later, I ended up going to see my Internist. My Internist ordered an x-ray of my knee and shoulder. The hospital radiologist said nothing was broken. My pain was a 10+ on the pain scale. I had a hard time sleeping at night. Functioning during the day was almost too much to bear. Just the simple act of breathing took all my energy. I have never in my life experienced pain like this. In April, I started seeing an Alternative Physiotherapist who used Electrophysiotherapy (Electro-Myopulse and Electro-Acuscope Machine) to help with the pain. I stopped in July due to getting no benefit. For the next two weeks, I merely survived. Walking was simply agonizing. After two weeks of unrelenting pain, I decided to get a copy of the x-ray's that had been performed at the hospital and go see my Orthopedic doctor. It was now the beginning of April. He took one look at the x-rays and said that my knee cap was broken. I had been walking on a broken knee cap for two full weeks. He also said that something was definitely very wrong with my shoulder due to my severe pain and my inability to move it. He ordered an MRI of my shoulder. He also ordered a full leg brace to be used for two months. Due to the pain, I was unable to use it for the most part. All I could do was cry because the pain was so intense. The pain was unbearable. The slightest touch sent me over the edge. The pain was so bad I could not imagine continuing to live each day in this pain. It was not humanly possible. Days later, I was back at my orthopedic doctor's office with my MRI results. The labrum in my shoulder was torn and there was a significant amount of inflammation. Two weeks later my orthopedic doctor ordered an MRI of my knee due to ongoing severe pain that was only getting worse by the day. I honestly did not know how my body was going to handle it! Most days, I laid in bed crying, gritting my teeth because the pain was so horrible that I truly just wanted to die. A couple of days later my orthopedic doctor ordered an MRI of my Cervical Spine due to uncontrollable migraines and worsening neck pain and stiffness. By the middle of May, now almost two months after my fall, I was back at my orthopedic doctor's office. My pain was only worsening instead of getting better. He was immediately concerned that I was developing Complex Regional Pain Syndrome as known as CRPS. My skin was freezing cold. I also had color changes to the affected limbs. He ordered a Three Phase Bone Scan the following week which revealed differences pre and post. This was not good news. By this time, I had also lost around eighteen pounds, and my body was struggling to survive the out-of-control pain. At the beginning of June, my orthopedic doctor, based on symptoms such as migrating pain, skin color changes, temperature changes to affected areas, severity of pain, and the kind of pain diagnosed me with CRPS. Complex Regional Pain Syndrome is a chronic pain condition typically affecting one limb, usually after an injury. It's characterized by intense pain, swelling, and changes in the skin temperature and color of the affected area. The exact cause of CRPS is not fully understood, but it is believed to involve an abnormal response of the nervous system. Over the months, my orthopedic doctor tried me on multiple medications that did absolutely nothing to touch the pain. The only way to begin to describe the pain is when you have a cracked tooth and you have shooting nerve pain in that tooth that radiates. I had excruciating nerve pain in both my arm and leg 24/7. I would lay in bed and cry and beg God to please take it away because I could not take the pain any longer. The pain overtook my body to the point that I thought I would pass out from the pain. At this point, my orthopedist referred me to Pain Management. I saw two Pain Management doctors locally. One prescribed Lyrica and said that Lyrica was the only thing that she could do for me. There was nothing else that could be done. The second Pain Management doctor put me on Hydromorphone which did absolutely nothing. He then wanted to do multiple nerve blocks which I refused based on research that I had been doing on CRPS. All of the literature pointed to nerve blocks not being effective for the treatment of CRPS. Over the next weeks, I spent hours upon hours researching CRPS and effective treatments. I stumbled upon a doctor in Rhode Island that was the leading expert on CRPS in the nation. In desperation ,I called to try and make an appointment. I live in Texas. The wait would be almost six months. I knew that I could not wait six months. I researched this doctor's pain management protocol for CRPS and called his office back and left a message for the nurse. About a week later she called back. I explained my situation and that my pain was so bad that I truly just wanted to die. That is not an exaggeration. She could not give advice since I wasn’t a patient yet, but I could ask questions and she could answer yes or no to my many questions so that I could get the answers that I needed until my appointment. By this point in my journey, I was suicidal and had daily thought of ended it. I began researching everything I could about this expert in Rhode Island and how he treated CRPS. In his expert opinion, Ketamine infusions were the gold standard for dealing with this beast. Ketamine works as a pain reliever by blocking NMDA receptors in the brain, which play a role in pain transmission and perception. By inhibiting these receptors, ketamine can reduce the intensity of pain signals sent to the brain, providing relief for patients with CRPS. Additionally, ketamine has been shown to have anti-inflammatory effects and can help in modulating mood, which contributes to its efficacy in managing both physical and psychological aspects of chronic pain. In desperation, I took the information that I had collected and took it to my Neurologist. I asked my neurologist who was treating me for my migraines if he would be willing to help me manage my CRPS until my appointment with the specialist in November. I had been seeing my neurologist for about two years for my migraines. He spent time researching this specialist's protocols regarding Ketamine infusions. He was more than willing to help. My first admission for Ketamine was in July of 2018. It was a 24-hour admission to see if I would tolerate it. I had a history of not tolerating anesthetics. I got complete relief of my pain and it was WONDERFUL! My pain came back with a vengeance fairly quick. My next admission was in August. I was admitted from August 7th – 14th for 24/7 Ketamine via infusion. They had a hard time getting my pain under control as well as the severe migraines that I was having. They were able to get my pain down to about a three on the pain scale. I was admitted again the beginning of October for several days. I continued to be admitted for inpatient Ketamine every six to eight weeks. The inpatient Ketamine infusions took my pain from a 10+ to about a three or a four. In between admissions I used nasal Ketamine on a daily basis to control pain. My neurologist was truly my saving grace. I probably would not be here today without his compassionate care and help. As I stated earlier, in the many weeks leading up to my neurologist beginning treatment with Ketamine, my pain was so bad I was having daily thoughts of suicide. The pain was so bad I could not imagine continuing to live each day with this amount of pain. In my eyes it was not humanly possible. With this protocol my pain was managed as much as it possibly could. In November, I flew to Rhode Island with my husband for my eight hour long appointment with the specialist. He not only confirmed my diagnosis of CRPS but also diagnosed me with a multitude of other health conditions. I was provided a twenty-two page summary of his findings. Some of the conditions were already previously diagnosed and others were not. He reiterated that Ketamine was the golden standard for treating CRPS. He cautioned me against certain treatments that would do nothing to treat the CRPS and others that he would not recommend. Before developing CRPS, I was already dealing with a multitude of other health issues. My neurologist took on the arduous task of working through the findings and began addressing them one by one. At this point, I need to state that my neurologist is not your typical doctor. He is the kind of doctor that you stumble upon once in a lifetime. I truly do not know what I would do without such an amazing, compassionate doctor willing to work with me throughout the years without giving up. Over the years, I had developed medical PTSD due to chronic, life-threatening medical conditions that a couple of my children suffered from. Well, since developing CRPS, I now deal with severe medical related PTSD due to various doctor's discounting my pain, accusing me of drug seeking, and more. Needless to say, I keep my medical team at a bare minimum. After eighteen months of beginning inpatient Ketamine infusions my beloved neurologist relocated to another state. To say that I was devastated would be an understatement. I sunk into a very deep depression and dealt with suicidal ideation. This would mean that I would no longer be able to receive inpatient Ketamine infusions. No other doctor's would even consider it. I did not stop seeing my neurologist after he relocated. There was no way that my health or life would be sustained without his care. Since the middle of 2019, I have been seeing him as a patient via televisit's every four weeks. He continues to manage my CRPS, migraines, and many of my other health conditions.
What impact has developing CRPS had on me personally? Well, my life has never be the same since that devastating day. I deal with moderate to severe pain on a daily basis. My CRPS has spread since my initial diagnosis. I now deal with full body CRPS pain. I have developed gastroparesis. I am extremely underweight. My body overall lacks strength. Emotionally, CRPS has taken a huge toll on me. I have been in therapy with a pain management therapist since 2019. I deal with depression, anxiety, and insomnia. Psychological support and counseling are important components of a comprehensive treatment plan, helping patients cope with the emotional toll of chronic pain. All of the things that I loved to do before developing CRPS are either no longer a part of my life or are very limited. Each day is a challenge as I never know how I will be feeling. Everyday activity and daily living exacerbates my pain. I am very sensitive to temperature change. Meteorological changes and seasons affect my CRPS. Stress affects my pain level. I am a shell of my former self. My diagnosis has greatly affected my family. My children lost their once outgoing, vibrant, on-the-go mother. The homemade meals and baking that they had learned to rely on became a thing of the past. Every task that I do, every errand that I run, every outing that I take is determined by my level of pain. Family time grew less. Time in my bed grew exponentially. I have missed precious opportunities to help my daughter after each of her births. I am stuck in a body that controls me day to day, month to month, and year to year. Living with CRPS is a very isolating and lonely life. Most people who pass me on a daily basis would never know the secrets my body holds. I have become really good at masking my pain and putting on a good front. This is definitely not the life that I ever imagined for myself.
I should state that for me STRESS greatly affects me.
Over the years, I have received so much unsolicited advice. I am sure that people are well meaning. They truly cannot fathom the extent of the pain that I live with and the very limited options available to those that suffer from CRPS . I have tried natural remedies. I have tried just about everything suggested by my pain management doctor. I am unable to take opioids due to severe reactions. I started seeing a chiropractor after two back-to-back rear end collisions within a span of nine months post CRPS diagnosis. Those car accidents only exacerbated my pain in unimaginable ways. They also added further injury to my already broken body. I currently see my chiropractor every other week. Despite the available treatments, managing CRPS can be challenging due to the variability in patient responses and the chronic nature of the condition.
Women are more likely to develop Complex Regional Pain Syndrome than men are. Statistics indicate that women are three times more likely to develop CRPS than men. The condition is most prevalent among individuals aged 40 to 60, though it can occur at any age. Children and teenagers can also be affected, particularly girls between the ages of 10 and 16.
More research and money needs to be invested in researching CRPS. Insurance companies need to be more open to covering proven treatments for this horrible pain condition. Currently, Ketamine is not covered by insurance for the treatment of CRPS. It is truly a tragedy. Ketamine has shown promise in alleviating the severe pain associated with CRPS by acting on the central nervous system to reduce pain signals. It helps improve mobility and quality of life for patients who have not responded well to other treatments. By addressing both the physical and psychological aspects of chronic pain, Ketamine offers hope to those suffering from this debilitating condition. Insurance companies hesitate to cover Ketamine due to its classification as an off-label use for CRPS, which lacks the extensive clinical trial data often required for coverage. On the other hand, they are more than willing to throw opioids at sufferers. Many studies have clinically shown that opioids do not work for CRPS. Insurers use the excuse that the high cost of Ketamine infusions without guaranteed long-term effectiveness contribute to their reluctance. From someone who lived with CRPS for eight years, Ketamine is the only treatment that has worked for me. To improve Ketamine accessibility for patients with CRPS, a collaborative effort between healthcare providers, researchers, and insurance companies is essential. By investing in large-scale clinical trials that demonstrate Ketamine's efficacy and safety for CRPS, insurers could be convinced to reconsider their coverage policies. Additionally, advocating for policy changes that recognize the unique needs of chronic pain sufferers could lead to more inclusive and compassionate insurance practices.
I am currently awaiting the delivery of a red light therapy mat, sleeping bag type, to see if I cant get any relief. My chiropractor uses red light therapy but on a much smaller scale.
There is so much more that I could add to this post, but due to time and privacy, I have chosen to leave it at this.
The cost of trying to treat my CRPS and other conditions have led to an exorbitant amount of money financially.
Posting this is very hard for me as I personally have a hard time sharing my journey. The reason that I chose to share is that I know I am not alone and if I can help even one person, it is worth it.
The following are some of the pictures that I have taken over the years showing how CRPS has affected my body starting with my initial injury.
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