UPDATE: This campaign was originally created to get Elise to Arkansas for treatment. The expected treatment time was about 2 months. We were partially successful in raising funds and she went in February 2018. The treatment was a large success and she is extremely grateful. But, she ended up needing 4 months of treatment instead... and the bills piled up fast!
When she came home there were minor symptoms remaining. Within three months of returning home she encountered periodic flare ups. Some have been pretty major.
The biggest success in Arkansas was that she found modalities to put the CRPS in check... she found treatments that helped keep the symptoms away. Her main home run was with something called ARPwave. It's a device that does neuromuscular re-education.
Now, she needs to buy her own ARPwave machine so that she can use it as needed. This device helps keep her nerves, muscles and body in shape and healthy. It keeps her pain away significantly.
But, the device is $20,000!!
We are asking you to donate and help Elise get the medical equipment she needs to stay well.
Please read her story below to get an idea of what she is going through.
Imagine the day you’re diagnosed with something nicknamed the “Suicide Disease.” That is a day my best friend, Elise, will never forget. It was a devastating moment when she was diagnosed with a rare neurological disorder called CRPS which causes excruciating pain throughout the body 24 hours a day, 7 days a week.
It’s the most painful condition known to human kind. It ranks the highest score on the pain index (worse than amputation and childbirth).
CRPS stands for ‘Complex Regional Pain Syndrome.’ It is believed to be caused by damage or malfunction of the peripheral and central nervous systems. But, the cause is not definitively known, it has no known cure and is progressive in nature. CRPS has a very high chance of spreading and it can go full body.
This type of pain typically robs a person of their ability to go to work, to enjoy time with friends and family, or to even get out of bed on most days.
CRPS pain is scary and debilitating!
This is the reality for my best friend, Elise.
She describes her pain as: “It feels like someone dipped my skin in boiling oil – like being burned alive - and then having it covered with biting fire ants. On a good day, the sensation is like a never ending frostbite with pins and needles, where the slightest touch makes you scream – it is relentless."
The constant burning and sharp pain to touch...together make her body ache as though she has the flu all the time. Her nervous system never gets a break with pain signaling at every moment of the day. She struggles to get out of bed because her pain flares at night and her body stays in shock, so she doesn’t sleep well. When she is awake, she is always lethargic and wears down from mild activity.
Anything physically strenuous isn't even possible because if her heart rate gets high then it inflames her CRPS.
Most of the time her pain is invisible. The red and swollen pain is not always obvious, but the pain doesn't go away. So she suffers in silence as her disease is not noticeable to most people. Understandably, she deals with depression.
Burning, swelling and on fire!
Her husband describes: “I cannot put into words the true suffering I see in her eyes when her condition flares...it breaks my heart. It is so sad because she is tired of fighting her own body every day. I truly see how it is the most painful condition ever recorded.”
Following sections are:
A. Why are we asking you to help
B. What the funds will be used for
C. Please donate
D. Details about the treatment
E. Elise's Story
F. Attempted treatments, info, and updates.
A. Why are we asking you to help?
We want to give Elise remission and stop it from spreading. We want to help her get her life back.
We are rallying around Elise to crowdfund her trip to a rehab treatment center that specializes in neurological diseases. It’s called the Neurologic Relief Center, and it has shown to help people with CRPS tremendously. The center is in Fayetteville, Arkansas.
Her hope is to make it there by February 2018.
Please help raise funds to get her treatment for this agonizing disease.
Elise has already tried the recommended treatments for CRPS. They have not worked. In fact, the pain is showing signs of trying to spread into her left leg.
Both her and her husband have drained their savings and maxed out the credit they have available. The options to get better have become limited.
She needs help as soon as possible.
I started this campaign because Elise is an old and dear friend to me, and it has been so hard to watch her quality of life slip away.
Please donate! And please help me get the word out by sharing this link on all of your social media sites and timelines.
Elise has always been a solid friend to count on when you need her. She has often created an environment of community and refuge. Elise was always the one to get us all together for a celebration. The friend you can always call… or just show up at her door knowing she will help. She shows compassion to everyone she meets and so often puts the needs and wants of other’s before her own.
If you know Elise, then you know she has always been a strong and independent person...and asking for this kind of help is not in her nature.
As her friend for over 20 years, I can tell you… it was a really hard decision for her to consent in letting me start a fundraiser. She even chose her life’s work to help people financially. So I promise, she doesn’t take it lightly when asking others for assistance monetarily.
But, Elise has hit a point where she is fighting to get her life back.
The path to wellness seems like an impossible scenario.
And now, she needs our help!
B. What the funds will be used for (~ cost ):
• $18,000 -- $20,000 at The Neurologic Relief Center in Fayetteville, AR.
• $10,000 for Additional medical equipment and ongoing care
TOTAL GOAL FOR FUNDRASING = $30,000
C. Please donate.
Use this page to donate to Elise's GoFundMe campaign.
All she needs is a few hundred people to donate $20 and that would get us almost half way to the goal! Every dollar counts!
Using GoFundMe is safe and easy. Just a $5 dollar donation could impact her life greatly!
D. Details about the treatment:
The Neurologic Relief Center, in Fayetteville, Arkansas, is a rehab center that specializes in CRPS. https://www.facebook.com/TheNeurologicReliefCenter
They use the latest and most promising treatments to slow and even halt the progression of the disease. She is hoping and praying to have the chance to go and stop the disease before it spreads.
She is scheduled to start ~Feb 26th 2018. This was the first available time slot.
Treatment is expected to last 10 weeks.
This center uses FDA approved tools and medically proven techniques to address the root cause of a patient’s symptoms. The center is run by renowned doctor and author of the book, "Putting out the Fire/ New Hope for RSD/CRPS", Katinka van der Merwe.
Unfortunately, insurance does not cover the vast majority of the treatments at this center. As the patient’s response to treatments are assessed, the funds are applied accordingly by the center. Any remaining funds are returned to the patient and will be used towards other future treatment and medical costs.
Any amount will help. And, if you can’t donate, then please help spread awareness about this horrible condition that needs a lot of research to find a cure.
All funds donated will be used directly for the treatment at the Neurologic Relief Center, treating her CRPS and any ongoing care needed. We will post updates and copies of the receipts as they become available.
We appreciate any help or support with funding. This condition causes little to no quality of life and the sooner it’s treated, the better chance there is for remission. If you have any questions, then please feel free to reach out to me or Elise on her Facebook Page.
E. Elise’s story:
Elise passing the CFP board exam and working at her old job.
Before developing CRPS, Elise was a successful professional who was extremely driven and independent. She had been working since she was 15 years old. Elise worked hard through college to obtain a degree in finance. After years of working her way up and learning the industry, she was then inspired to take the board exam to be a Certified Financial Planner.
She always had a will to succeed and seize life’s opportunities. She enjoyed being social and active. She’s also the kind of person who will go out of her way tremendously to help her friends and others.
It all began in December of 2015 when she went to Aruba and her husband proposed. Life was full of bliss and possibilities!
Only days after they returned... she started to feel like she had fiberglass in the skin on her hand. Within weeks the pain turned into burning fire, biting fire ants and frost bite pins-and-needles. It crept up her hand and into her arm. Naturally, she was freaking out!
Now her CRPS is so bad that she can’t wear her engagement ring on her left hand. In fact, nothing can even touch her left arm without causing pain.
Elise's left arm when she got engaged (before CRPS ) - and after when the pain set in.
Being in so much pain day after day has taken its toll on Elise’s abilities. Not only has Elise been prevented from enjoying her life and passions, but CRPS caused the loss of her job as a Certified Financial Planner, which she worked very hard to achieve. She describes it as losing a part of herself. Being a professional was a large part of her identity.
Because of her worsening pain and loss of function, she cannot perform many daily basic functions. Every day is a struggle. Nerve pain is very intense and, sadly, robs many patients from their lives.
Video after her nerve block injection in the neck containing ketamine.
Elise has tried countless standard protocols for treatment, as well as alternative options (read more below about previous attempts). Unfortunately, they have not sent her CRPS into remission.
She needs help as soon as possible.
Since Elise’s diagnosis, she has kept a positive attitude. She is such a strong woman and I see the face of determination on her even when she is silently suffering 24/7.
She has dedicated all of her time to researching every avenue that can assist her in healing and combating this disease. She has spent hours on consults with doctors from Georgia, Idaho, and the famous Shepard Center in Atlanta.
She spends every moment investigating solutions or going to the next doctor appointment. She is constantly planning and formulating a plan to get better.
She has created her own Facebook page to help spread awareness and to share her journey with everyone. Please visit her page if you would like to know more about her condition and offer positive encouragement.
F. Attempted treatments, info, and updates.
- What treatments has Elise already tried?
List of Medical Specialist and treatment attempts already made:
Neurologist – 3 opinions
Rheumatologist – 2 opinions
Orthopedist – 4 opinions
Infectious Disease doctor – multiple visits
Anesthesiologists / Pain Specialist – 6 different docs across multiple states
Physical Therapist – 3 centers
Chiropractors – 2 docs
Acupuncturists – 2 docs
Opioids and pain meds- none have worked
Anti-epileptic meds - side effects made situation worse
Nerve pain antidepressants - did not work
Ketamine - did not work
Nerve block injections - did not work
Creams, supplements, diet - only mask the pain
Massage and essential oils
Biphosphonates via IV injections (typically used for osteoporosis) - FDA medical trial - Hardcore treatment - did not work
Scrambler Therapy (Calmare) - short term results
CBD Oil - sadly, not available in Georgia
- Why does CRPS seem so difficult to treat?
Most people don’t even know about CRPS. Medical science doesn't know why it happens or how to cure it. Most advice is only given about how to treat the pain symptoms. It also presents itself differently in every person. It doesn't show up in blood work, in x-rays, and MRI’s can’t detect it. This makes it hard for most doctors to diagnose people or to specialize in the knowledge needed to treat it.
CRPS desperately needs awareness and education in the medical community and the world.
Standard treatments are invasive and have shown to make it spread... or the effects just stop working. They only mask the pain and do not address the root of the problem. Opioids or potent pain meds barely touch the pain.
Current research is showing that CRPS could possibly be autoimmune in nature and causes chronic inflammation and dysfunction of the nervous system.
As I mentioned, Elise has tried many of these standard protocols (sadly they are the ones covered by insurance, but the ones typically recommended by doctors).
Unfortunately, they have not helped Elise or sent her CRPS into remission. The options to get better have become limited.
- Will I get updates on Elise’s treatment as she goes through treatment?
Yes! We will be posting updates on this page and also on Elise’s CRPS journey Facebook page to let everyone know how her treatments are going and if she is responding positively. fb.me/HealingElisefromCRPS
With love, we thank you.
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