A diagnosis of chronic regional pain syndrome (CRPS) can turn life upside down, bringing not only persistent pain but also a range of financial challenges. From specialized treatments and medications to adaptive equipment and daily living expenses, the costs quickly add up, leaving many people searching for ways to manage the financial strain.  

This post explores different ways to seek financial assistance and support to help manage the costs of living with CRPS. 


Average Cost of Chronic Regional Pain Syndrome Treatment

Living with CRPS can involve significant long-term expenses, as managing pain and preserving quality of life often requires a multidisciplinary approach.  

While individual expenses vary, the average annual cost for CRPS in the U.S., including therapies, medications, and interventions, is highest in the 1st year of diagnosis, with median total expenses around $8,500 and prescription costs about $2,000. In the years following diagnosis, annual costs stabilize at approximately $3,900 to $4,800 per year, even before factoring in indirect costs like lost income or transportation. 


Does Insurance Cover the Cost of CRPS Treatments?

Insurance coverage for CRPS treatments is unpredictable and frequently incomplete. 

Treatment for CRPS may involve prescription pain management, nerve blocks, spinal cord stimulation, physical and occupational therapy, mental health counseling, and adaptive support for daily living – and not all associated costs will be fully covered by insurance. 

Many health plans may partially cover certain therapies or physician visits, but significant out-of-pocket expenses for medications, pain interventions, psychological support, and adaptive equipment are common.  

High deductibles, copays, and non-covered or “experimental” treatments can place a heavy financial burden on those with CRPS and their families. 


Common Out-of-Pocket Costs Associated with CRPS

Managing CRPS often means facing a wide array of financial challenges, such as: 

  • Health insurance premiums, deductibles, and co-payments
  • Medications
  • Medical travel expenses for therapy or treatment
  • Relocation or moving expenses due to diagnosis (such as in the case of moving to be closer to a therapy center or hospital for treatment)
  • Temporary housing due to medical relocation
  • Mileage, tolls, and parking fees for visits to therapy center or hospital
  • Specially equipped vans, specialized wheelchairs, and durable medical equipment
  • Home modifications for accessibility
  • Home health care services and caregiving
  • Activity-based therapy and rehabilitation
  • Assistive technology


Get CRPS Financial Assistance with Help Hope Live

Every individual living with CRPS experiences unique challenges, and unique care costs. As chronic pain management strategies and advanced treatments become more accessible, securing robust financial support is often essential to accessing the best care and maintaining quality of life. 


How CRPS Medical Fundraising Works

Starting a fundraising campaign with Help Hope Live is simple and supportive. Here’s how it works: 

The fundraising process with our nonprofit starts with a few simple steps: 

  1. Complete a short campaign request at helphopelive.org/get-started/apply  
  2. We will contact you if community-based fundraising is a possible option 
  3. You’ll be paired with a Client Services Coordinator 
  4. Your Coordinator will provide you with one-on-one fundraising help, including personalized materials and guidance on rallying your community, sharing your story on social media, reaching out to the press, planning in-person or virtual fundraising events, and much more 


Why Choose Help Hope Live Over GoFundMe?

Help Hope Live differs from GoFundMe by: 

  • Verifying your medical need for complete donor confidence 
  • Enabling donations that are tax-deductible 
  • Providing one-on-one fundraising help 
  • Managing all funds raised to protect your state-based benefits (funds raised are not considered personal income/assets to you) 
  • Paying bills directly, allowing you to focus on treatment and recovery 

We are a nonprofit with more than four decades of fundraising experience and a 4-star Charity Navigator rating. 


Does Medical Fundraising Work?

Yes! We have helped thousands of people successfully cover crucial medical expenses and related costs through our non-profit, Help Hope Live. Here are just a few of their stories. 

Three photos of Help Hope Live clients living with mobility-impacting disabilities. The first photo is a man seated in a manual wheelchair outside with light skin and a blue collared shirt. Behind him walk two teenagers, one boy with light skin and red hair and a girl with long blonde hair.


"I'm so happy to have Help Hope Live as my fundraising resource: they've been amazing to work with and have made the fundraising aspect a lot less intimidating."

Liz Barnett has been living with complex heart issues since birth. Once she was listed for a dual heart and liver transplant, Elizabeth turned to Help Hope Live to fundraise for overwhelming out-of-pocket medical expenses. With personalized fundraising support from us, Elizabeth raised $14,000 in less than four months. 

"So glad to report that he is still in remission."

At 28 years old, Patrick “PJ” Kent experienced aches and pains that led to a completely unexpected medical diagnosis: acute lymphocytic leukemia. With over $24,000 raised in PJ’s honor with Help Hope Live, fundraising became a critical and successful part of his family’s plan to assist with urgent needs ranging from specialized treatments to inpatient care and unexpected hospitalizations.  

COMMON CRPS COSTS

Health insurance premiums
Medical travel
Medications
Home health care

RESOURCES

READY TO GET STARTED?

If you choose to fundraise with our nonprofit, here’s how the process will look:

1. APPLY for assistance

2. YOU’LL BE PAIRED with a Client Services Coordinator

3. YOUR COORDINATOR will provide you with one-on-one fundraising help, including personalized fundraising materials and guidance on how to rally your community, share your story on social media, reach out to the press, plan in-person or virtual fundraising events, and more.


Need Other Financial Help Options?

For alternatives to fundraising, you can find information on a variety of other financial assistance options. Please view our Catastrophic Illness Resource Directory for insight into sources of direct financial aid, support groups, and other resources for spina bifida patients and their families.