How did your CRPS journey begin? Did it start after an injury, surgery, illness, or another event? What was that experience like?
It started after a misdiagnosed Lisfranc Fracture in my left foot.
When were you diagnosed with CRPS, and what was your journey to getting a diagnosis like?
I was first diagnosed in 2023 thanks to a great primary that fought for me.
What was it like to finally have a name for what you had been experiencing?
It was great to have a name but to find out there is not really a treatment that works for everyone was discouraging.
Do you live with any other health conditions alongside CRPS? If so, how do they affect one another?
I have Hashimotos, Lupus, Fibromyalgia, and Chronic Migraines as well. Everything except the migraines I was diagnosed with around the same time as CRPS.
Where in your body does CRPS affect you, and what is the experience like in those areas?
I first got it in my left foot. After much trial and error with treatment, I decided to have an elective amputation of the left foot. Now I have CRPS in my residual limb. I am unable to walk with a prosthetic as the pain is unbearable. I really never leave the house. The crushing pain and sensitivity is to much.
How would you describe the pain of CRPS? What does it actually feel like for you?
It feels like my bones are being crushed, my skin is on fire, electric shocks shooting through my leg and stabbing pain when anything touches my leg.
How has CRPS changed the way you experience touch, pressure, or contact with your body? Do things that wouldn’t normally hurt, such as clothing or a light touch, cause pain or discomfort?
Everything hurts including blankets.
How does CRPS affect your body’s temperature or your sensitivity to heat and cold?
I am sensitive to all temperature and changing of the weather.
Have you experienced changes in the color, appearance, swelling, sweating, or texture of the affected part of your body? If so, what has that been like?
Excessive sweating and hair growth. My leg swells and turns a deep purple color when I have it down for to long.
How has CRPS affected your movement, strength, coordination, or ability to use the affected part of your body?
I am wasting away pretty much.
Are there parts of your CRPS experience that are particularly difficult to explain to someone who hasn’t experienced them?
All of it.
Do your symptoms ever change or spread to different parts of your body over time? If so, what has that experience been like?
It has been spreading up my left leg.
What is a particularly severe CRPS day like for you?
I do not get out of bed.
Are there times when your CRPS feels more manageable? What do those days look like?
No
Have you noticed anything that seems to trigger, worsen, or ease your CRPS symptoms?
No
How has CRPS affected your everyday life, including work, education, household tasks, hobbies, or the things you enjoy doing?
I don’t do anything.
How has CRPS affected your ability to leave the house, travel, or make plans?
I don’t do anything
What adaptations, routines, equipment, or changes to your surroundings have become part of your life because of CRPS?
I am in a wheelchair now.
How has CRPS affected your sleep and ability to rest?
I sleep in about 2 hour periods
How has living with CRPS affected your independence or ability to do things for yourself?
Yes
Has CRPS had an impact on your finances or access to care?
Yes
What has your experience been like with doctors, pain specialists, and navigating the healthcare system? Have you felt taken seriously and properly understood when seeking care for your CRPS?
No one knows CRPS so I have to advocate and inform every medical person.
What has your experience been with the treatments, medications, therapies, procedures, or other approaches you’ve tried to manage your CRPS?
No treatment has worked. Not even pain medication. I read a lot to help keep my mind busy.
Beyond formal treatment, have you found anything that genuinely helps you live with CRPS or make your days more manageable?
Reading
What has it been like living with CRPS when other people may not understand the condition or be able to see what you’re experiencing?
I lost 90 % of my social group
What has the emotional or mental side of living with CRPS been like for you?
Depression and PTSD
How has living with CRPS changed the way you see your body, your abilities, yourself, or your identity?
Yes
How has CRPS affected your family relationships, friendships, or dating life? Do you feel supported and understood by the people closest to you?
Yes
Has CRPS affected your intimacy or sexual life in any way?
Yes
Have you connected with other people living with CRPS, either online or in person? What has that experience been like?
No
What would you like doctors and other healthcare professionals to understand about living with CRPS?
Yes
What would you like more people to understand about CRPS?
The extreme pain
How do you feel CRPS is understood or represented in society and the media? What would you like to see change?
It is not