Lisa Nieblas - our kind-hearted friend, has been diagnosed with a rare, progressive neurological disorder, called Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy. Otherwise known as CRPS / RSD. Or by its nickname “The Suicide Disease.”
What’s CRPS? It means either localized or widespread excruciating, debilitating pain coursing through your body. Every moment. Of every day.
The pain you experience with CRPS / RSD is unimaginable. This condition is considered the most painful condition that exists on the planet today. Worse than childbirth, worse than amputating a limb, and although the pain goes up and down in intensity, it’s always there in some form.
In November 2014, Lisa had an accident at work. The accident tore her right rotator cuff so severely that the surgeon had to cut and shorten 2 tendons and her bicep… thread them through a metal plug and drill them into the bone. They also shaved down the bone and drilled little holes into her shoulder so it would bleed to create a false cartilage. It took 7 months to get the surgery approved and it occurred in June 2015. Little did she know, this would spark a pain a 1000 times worse than the rotator cuff injury.
At first, the pain from the surgery masked the CRPS. She was rushed to the ER several times thinking she had blood clots from the surgery. The reality was the onset of CRPS was rearing its ugly head. It wasn’t until the swelling from the surgery went down that the doctors realized it was CRPS or RSD. The disease spread like wildfire from her right arm and hand into her right leg and foot.
This is when the fun really began… A myriad of treatments, trips to the ER, drugs, injections and terrible, terrible side effects and times when Lisa just wanted to die… and thought about it and she believed that it may be the only answer.
Lisa has described the sensation as” THE WORST SUNBURN AND BEING BURNED FROM THE INSIDE OUT”. There are times when even a sheet laying across her body is too much pain. Another terrible side effect is CRPS attacks your short term memory. You know the feeling of having something on the tip of your tongue but can’t remember??? Well, this is an everyday occurrence with this fun disease. This is the Limbic System that is ROCKED. See here for more systems of this crazy disease to understand:
With the pain, comes the loss of sleep. Lisa sleeps at most 4-5 hours of broken sleep a day. Thus adding to the terrible side effects of this disease as only sleep can give relief. She can’t lie down, sit or function without pain. A good day pain level is at a 6. She can’t work and barely leaves the house. A dinner out or a day sitting at the beach means days of being in bed trying to recover from the inevitable “Flare Up” that jumps to a 10.
Lisa is on pain medication daily as well as 15 different supplements. She has had a very bad reaction to the Band-Aid medications of Lyrica and Gabapentin. She does weekly acupuncture and sees a therapist for the debilitating depression. Physical therapy and massage has helped but is just too costly.
Lisa started Scrambler or Calmare treatment’s in April and this seemed to start helping. The treatments are expensive and insurance would only pay for 4 treatments and she needs a round of 50 to be administered daily. She is also waiting to see if she can be accepted for the US trial of Neridronate Acid treatment. This is highly practiced in Italy with an 80% success rate. This is a HUGE opportunity to be able to have access to this without traveling out of the country. She is scared but this and the Scrambler treatments are her best shot at some relief and the possibility of getting her life back. If she is not picked for the US trial, then we will look to Italy.
Here is where you come in… with Lisa not working and insurance refusing to pay, it is becoming desperate. Her wonderful husband is working full time as well as side work but the demand is too great.
Those of you that know Lisa, know that she works tirelessly for others. She gives of herself for a list of causes that are dear to her heart. She is a wish grantor at the Make A Wish Foundation. She works with several animal rescue groups as well as shelters. Her husband and Lisa have been fostering animals for years. She is the first to see a problem with one of her friends or the community ad rally for a fundraiser or solution. She is fierce, kind and loving. Her heart wants to help the world and her body is telling her no.
Asking for help is not in Lisa’s nature… so let’s see what WE can do to help her.
The Scrambler treatments are $300 a session and she needs a series of 50 to start.
If she is denied the trial, the Neridronate Acid treatment is in Italy and the cost is not 100% verified but with treatments, travel, and accommodations, the cost is approximately $15k
The additional weekly costs for acupuncture, physical therapy, and pain therapist is $150 a week.
The Pain Management doctor visit is $165 a visit per month.
We will be giving updates here on this page as Lisa progresses through her treatments. Your help will enable Lisa to focus on trying to minimize her pain or possibly send her condition into remission and be able to go back to work and start living a normal life outside her bedroom and house.
Thanks for the support,
On behalf of her friends,
Tiffany, Cindy, and Nichole
- Magaly Migoya
- Adrienne Elicker
- James Thompson
- Donna Mason
Organizer and beneficiary
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