Welcome to FIRE IN THE HOUSE! – a reality show that takes an inside look at life with CRPS. Complex Regional Pain Syndrome is a dysfunction of the central nervous system. Its cause is unknown. There is no cure as of yet. Treatments are inconsistently successful. It causes nerves to become hypersensitive to the environment, overreacting to stimuli by perceiving extraordinary pain or misinterpreted sensations. At times and as CRPS progresses, it can lead to permanent damage to skin, bones, muscles and even internal organs. As a result, mobility becomes difficult or limited, and severe pain can spread to other parts of the body. [CRPS Fact Sheet, NINDS]
Symptoms of CRPS include:
- intense burning pain that worsens or spreads
- profuse sweating
- skin changes – color, dryness, temperature, texture
- thickened nails
- limited mobility due to stiffness or pain
Some people experience flare-ups that subside in time. Others, like my husband, get flare-ups that remain and become the “new normal” level of pain.
Why should people watch this show? Because with awareness, they can learn the early symptoms and try to find a treatment that works. Some research states that early diagnosis and treatment increase the chance of stopping CRPS’s progression. Through awareness, we also hope that researchers and those who fund research will take an interest in finding a cure for this crippling form of endless torture.
Getting an inside look at living with CRPS can round out the “invisible” aspect of this painful disease. Some people, including doctors and family members, don’t believe patients really experience the inordinate level of pain that they say they have. “It’s all in your head” or “You’re exaggerating!” they are told. Often, patients look fine until the pain makes them cringe in agony or physical changes become obvious. These can be skin peeling, reddening or turning purple-gray; swelling or spasms taking place.
This reality show would expose yet another “invisible” side effect of CRPS: depression. Many CRPS patients consider suicide as a preferable alternative to spending the rest of their life in unspeakable pain.
You won’t want to miss FIRE IN THE HOUSE!
PATIENT – in this case, my husband is the star of the show. A kind and quiet man with a brilliant mind, a PhD in Economics. He is homebound, suffers from brain fog, which makes him forgetful and unfocused. The intolerable pain keeps him at home, for vibrations intensify his pain and walking 10 feet is exhausting.
DOCTOR – makes house calls and monitors his vital signs, medications and mental well-being.
NEUROLOGIST – oversees his medications and is ever-vigilant for new research that may help relieve the pain.
OXYGEN PROVIDER – supplies the oxygen machine that helps treat sleep apnea.
OCCASIONAL MEDICAL STAFF – they make house calls to do blood work, take X-rays, perform oxygen testing or whatever else the doctors order.
PHARMACIST – fills meds monthly and resolves any insurance coverage issues that sporadically arise.
MEDICARE & BLUE MEDICARE Rx – provide health insurance and cover doctors and meds every month. They are amazing and have provided the care that my husband needs in a professional, timely and compassionate manner. The system has worked for us!
SOCIAL SECURITY – provides benefits upon disability and has been efficient and professional. We are grateful.
CAREGIVER / WIFE / EVENT PLANNER – I oversee my husband’s care, schedule appointments, pick up meds, resolve any and all issues regarding insurance, keep house and advocate for him.
DAUGHTER – Senior in high school, amazing person, crushed to see her father suffer so much and sad that he can no longer attend her theater performances or award ceremonies for her academic recognition. Notices other friends have fathers present at events…
A recliner in a home in the suburbs with a huge window to catch the sunrise.
(Because hubby’s feet must be elevated at all times due to very poor circulation, a recliner lets him rest comfortably with his feet up.)
SOCIAL SECURITY DISABILITY BENEFITS APPROVAL – filling out forms, explaining in detail the disability and why it keeps my husband from working. (Thankfully, approved!) A saga in itself!
COPING WITH PAIN LIKE NO OTHER – what do you do when the pain doesn’t end but only gets worse?
PREDICTABLE UNPREDICTABILITY – just like change is the only constant, CRPS presents all sorts of “symptoms” that come and go at random. These include inability to focus, not knowing what day it is, idiopathic fevers, aches, itching, weakness, peaches tasting like garlic, foods tasting fishy / offensive, muscle cramps, intense pressure, feeling like bones are being bent / crushed…
DISABILITY STEALS YOUR DREAMS – accepting disability is difficult but necessary. We have adjusted our plans and dreams.
CREATING A NEW LIFE – out with the old, in with the new! Exploring ways to make things work now. Finding ways to cope and making the best of the situation.
LOVE LOVE LOVE – we are blessed to have it! Life is about people – let’s be kind to each other. Let us not just talk about love and charity; let them be evident in our actions!