I Believe You
CRPS is a rare disease with less than 200,000 US cases per year. CRPS is incurable, degenerative, and can last a lifetime. And if we suffer from CRPS we know that many people just don’t believe us—even doctors and other medical professionals. Diagnosing CRPS takes time, a lot of frustration and pain, and knowledgeable doctors. Unfortunately, CRPS almost has to get worse before we are believed.
I have lost many friends in the process of diagnosis and learning to live with this disease. People just don’t know what to say or do for us. Around the time of diagnosis, we are literally a hot mess. People think we are exaggerating our pain, like a whiner or complainer. Friends, family, and doctor’s alike think we are just seeking pain medications. After all of this rejection coming at us from all sides, we begin to feel that they are right, and we are wrong.
It’s easy to feel defeated when so many people reject us. I was fortunate to have found a General Practitioner who said to me, “You have CRPS? That’s brutal. I’m so sorry.” It was the first time I felt validated. I’ve also had an experience in the Emergency Room with six doctors and nurses standing around my bed talking to each other about what was wrong with me. I was vomiting from the pain and between breaths I yelled, “I have CRPS. Just f-ing Google it!” Within minutes I was given a healthy dose of pain medication.
Let me just say that I believe you. Your pain is real. If I can suggest anything it’s to become as informed as you can about CRPS in order to explain it to the people around you, including doctors and nurses. Be your own advocate. CRPS does not have to be dubbed the “suicide disease.” There are great treatments available, and more studies are being done to get a handle on this condition.
There is hope. I promise you.
I don’t know what happened regarding my CRPS, but I believe the root cause stems back to a botched tailor’s bunion procedure in 2019. My foot nor I were ever the same so I located a London orthopedic surgeon for revision surgery.
He referred me to a pain specialist who diagnosed CRPS, prescribed Pregabalin 150, and until the foot ‘settles’ no foot surgery can be performed. Any walking has all but been halted except mandatory items, and the worst time is at night with numbness, burning sensation, tight leg muscles, etc.
It DOES drive you mad especially since I have two other autoimmune diseases. I DON’T need another disorder.
I hear you! Nighttime is the worst. And with immobility, I’ve gained 80 pounds and now have Diabetes. Plus, four other rare diseases. It’s crazy how our bodies react and act to disease. I got a Dorsal Root Ganglion Spinal Cord Stimulator to settle the nerves in my left foot (original limb). It has worked wonders, though I still take Pregabalin at 300 mg/day. I also take some antidepressants to help too. It’s so hard to go from a normal functioning adult to where I am now. You are not alone!
Thanks Jana for your support, and also comments concerning what you’re going through. Specialists don’t mention side effects, and weigh gain is a given although I do ‘home’ workouts with yoga and the stationary bike. Still gained around 20 pounds though. So sorry about your Diabetes – my sister found she had Type 1 at age 46; initially was bitter and angry with all she had to contend with. I do worry about her as we live in different countries, but she’s managing with a support group. You have four other rare diseases? Wow. Where do they all come from I wonder? One of my autoimmune diseases is when white blood cells attack the skin – 12 years of it even with Dapsone and light therapy. My parents had none of these issues. Genetic/inherited from another generation? Anyway, good to talk with you, glad I’m not alone, and will try to sleep the night away with my lidocaine patches! Take care.
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I do think there are generational attachments to our diseases. I also have Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Psychogenic Non-Epileptic Seizures, and Dissociative Identity Disorder. It’s a lot to handle, but I get encouraged by doing blog posts and hearing from wonderful people like you!
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That’s an incredible amount to grapple with – mine seem minuscule in comparison. Though anything that attacks our body, mind, and lessens our ability to grasp the ‘ordinary’ things in life, has a profound difference in how we react/who we are and how did it come to this?? Did you ever have a manifestation of trauma in your life that brought on PNES? In England, there’s the Rare Disease UK providing a unified voice for the community, capturing the experience of patients, and raising the profile of rare diseases across the UK. You’re an amazing person, and it’s therapeutic talking with you!
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Yes, childhood trauma is a factor for the PNES and DID. I think trauma plays a part in every disease to whatever degree. I’ll check into a group for rare diseases. I had never thought about that! Thank you so much for your praise and input. It helps me to talk things out with people too.