- March 11, 2012
What is CRPS
A young beautiful woman of 33, Jennifer Aebi, in Enid, Oklahoma, suffers every day from CRPS. The medical definition regarding this rare disease is as follows: CRPS is a complex regional pain syndrome, also known as Reflex Sympathetic Dystrophy, a chronic neurological syndrome characterized by:
· Severe burning pain
· Pathological changes in bone and skin
· Excessive sweating
· Tissue swelling
· Extreme sensitivity to touch
For Jennifer Aebi, CRPS has been life changing and an emotional roller coaster ride. She was once a busy ER nurse, taking care of people, loving them, loving her job, loving her life, and then one day at work her right arm started hurting. She thought the pain came from having over used her muscles to plant some trees around her house. She saw a doctor about her shoulder pain and all X-rays and MRI’s were normal. Soon the pain became so sharp even wearing her jacket became too much to bear. One night while working in ER her arm started to sweat, turned purple and red in different areas, and was swelling. The ER doctor told her he didn’t know what to do with her. He could not figure out what was causing such a reaction.
She worked the next few days, dealing with the pain by taking over-the-counter Ibuprofen and Acetaminophen. The medicine helped her get through until her doctor appointment. Finally the day of her appointment came. Her doctor sternly looked at her and said, “You are not returning to work and you are leaving here and going straight to the hospital for a stat ultrasound of your right arm.” He was looking for a possible blood clot.
When the tests came back they were normal. Jennifer wondered what in the world was wrong with her. Then a stat CT of her chest was ordered to make sure the possible clot had not moved to her chest, once again, normal. Everything was coming back normal, but there was nothing normal about her arm.
Next she was referred to an orthopedic doctor who gave her Lortab 5 Mg pain pills and more X-rays. Once again, normal. His diagnosis was, Biceps Tendonitis. She asked, “What about my arm?”
His reply to her was, “Let’s not look for zebra’s yet.”
She felt like she had a whole zoo sitting on her arm. So much for questioning that doctor.
Two weeks later, she finally got an answer. The ER doctor that was on the first day her symptoms started and one of the (Integris’) orthopedic doctors continued looking into her symptoms to help her find an answer. She will never forget that moment when they said, “We think we found something, but it’s not a disease you want.”
All she heard was disease. She was young and strong, she couldn’t have a disease.
The next day at her scheduled PT appointment for her “Biceps Tendonitis,” the Physical Therapist took one look at her arm and came up with the same diagnosis she heard the day before from the ER and Orthopedic doctor; RSD, Reflex Sympathetic Dystrophy.
She had an appointment the following morning with a new doctor. The diagnosis was confirmed. She sat there stunned. She had a disease that very few people are familiar with, the cause is usually unknown and there’s, NO CURE! She sat motionless while her mind raced with the words..no cure, no cure, no cure, no cure….disease, disease, disease….
Jennifer was in shock, this was too much to comprehend.
The doctor explained to her she had brachial viral plexopathy and this is what caused her disease. He sent her for blood work….unbelievable; none of the other doctors had ordered blood work. Her liver enzymes were three times higher than normal. Other than that her blood was normal.
She was started on a 28 day regime of steroids and a hand full of other medications. A total of 28 pills a day not including the steroids. She was taking different pills every three to four hours.
She was set up with yet another doctor to start, Stellate Ganglion Nerve Blocks, for pain control. A month had gone by since the onset of the disease. When she met this new doctor, she found out he moved to Enid from Philadelphia and he had worked with the disease there. She felt her luck was changing.
The nerve block worked. “Halleluiah,” she wanted to scream. It worked. She was cured despite everyone telling her there was no cure. She wanted to have a party, she wanted to get off all the pills she was taking, she wanted to go back to work, and she wanted her normal life back.
Less than 24 hours after the nerve block, the party, her hopes, her happiness, was gone. Everything was right back to where it had started. Five nerve blocks later with no avail, extremely painful physical therapy, and medication change after medication change, she relented to the fact she was STUCK with a disease very few people knew anything about.
Her arm was purple, swollen, painful and sweaty. She started to teach herself to write with her left hand, she started to depend on family to help her with cleaning her house, going to the grocery store, and so many more things. This was her lowest point and suddenly she felt blessed by God. She felt blessed because of the loving care and support of her family and friends and she wondered how people who did not have this support made it through.
Jennifer is young and she could not sit still for the rest of her life. She was determined to go back to work, to learn to live with the pain, and to learn to start IV’s with her left hand. She loved the ER and that’s where she wanted to return. She had been stuck in her house and depended on others to get her out for months on end. She was 33, she should be having the time of her life, but the disease dictated a different world for her. The four walls of her house were driving her crazy, the handfuls of pills, her swollen body, her pain, her lack of energy, and the financial struggles, simply put; her world had become a living hell.
Finally there was hope once again, a Spinal Cord Simulator. It blocked the nerve impulses in her arm so it could not send the wrong signals to her brain. A temporary one was placed in her spine for 7 days. Within 24 hours after placement her arm looked almost normal and it didn’t hurt as bad. On the 7th day they removed it and within hours her arm was right back to where it was. She was preparing for the permanent stimulator to go in.
She was never so excited for a surgery in her life. She was given conscious sedation drugs at first when they placed the wires in her back so she could talk to them and tell them what she felt. After they were satisfied with the placement of the leads into her cervical spine they put her under and placed the battery in her left lower back. She has a remote control to operate her stimulator.
She gradually regained use of her right arm and her back pain gradually went down. A little under five months later she was able to return to work. She was on top of the world. She felt she had overcome the disease that had no cure. She was happy again; no more endless crying. She said, “I was ME again.”
Fifteen days later her left arm started the same symptoms as her right arm had months earlier. She was at work when it happened. Crying and in pain, arm swollen, purple and getting worse, she went home. She had been knocked down again by the same disease on the opposite side of her body. She was devastated.
She saw her surgeon the next day. He told her the CRPS had “mirrored” itself to her left arm. She knew the routine, another 28 days cycle of steroids, no driving, learning to function with one arm on the other side, and the worst thing of all….those four walls of the house again. How was her family going to survive another pay cut while she went back on disability? Were they going to want to do all her chores again? She decided she had overcome this once…she would do it again.
She had the surgery for a second time. She started physical therapy again. She talked to her boss on a daily basis so she could keep him informed as to when she could come back to work.
Two weeks after the surgery she went Black Friday Shopping. She went with her Christmas list and her mother. Despite the decrease in pay she wanted her family to have a normal Christmas. While they were out shopping she started having trouble going from a squatting position to a standing position The next day she had to spend the day in bed. Her right leg was swollen, purple, painful, and burning. She just looked at her leg in disbelief and sighed aloud, “How could this be?”
She went from walking with crutches to a Winnie walker within days. It had travelled to her left leg as well. Nerve blocks were started; she was waiting on approval from the insurance company for a temporary stimulator for her legs and was required to see a psychiatrist because of the mental toll the disease had taken on her.
She now has the permanent spinal cord stimulator in place. She told me, “Thanks to God, my family’s support, my wonderful doctors that knew what they were doing and a determined physical therapist I am walking on two feet and using two arms and will be able to return to work. It will have to be a desk job, no longer can I be an ER nurse, but I will find a desk job related to nursing.”
Jennifer’s inner strength and determination have paid off. The 19th of March, she will start a new desk job in the medical field.
The disease is disabling and affects many people but there aren’t any celebrities on television talking about it. There aren’t any doctors on TV talking about it. There are not many people in the medical field talking about it. It’s an extremely painful disease. Jennifer stated, “It feels like someone has a blow torch on your extremity, along with knifes stabbing, and cramping all the time. The simple touch of someone hurts.”
Jennifer Aebi wants there to be more research for a cure. She wants more people to know about the disease. She wants to wake up one day and not have constant pain. Jennifer Aebi wants to be normal.
If you would like more information on CRPS go to the CRPS website at www.rsds.org.
She wants anyone else who is going through this disease, has questions about this disease, or thinks they may have it, to contact her via email at firstname.lastname@example.org.
Jennifer Aebi, just a young woman, looking for any way possible to find a cure for this disease, so no one else will have to suffer. The word needs to get out and research dollars need to be directed toward CRPS. This is why Jennifer Aebi is telling her story.
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