- CRPS Complex Regional Pain Syndrome
- Interviews
Destiny Warner's interview
How did all start?
When I was 10 I passed out at a concert rehersal. My dad thought I locked my knees, so we just brushed it off. I went in for a normal doctors checkup but my doctor was gone so I seen a new doctor. She checked my blood pressure and freaked out! She had me do an orthostatic blood pressure test. She admitted me RIGHT AWAY! She then told me I had Postural Orthostatic Tachycardia Syndrome. That same day we made my first appointment with a GI because I had chronic abdominal pain, he found H. Pylori in my stomach but was more concerned about my esophagus, he diagnosed me with Eosinophilic Esophagitis, I'm 18 and have had 15 scopes and have many more planned for the future. Once we got all of that under control, I was bit by a Brown Recluse spider October 3 of 2013. I didn't know at first I just thought it was a masquito bite so I didn't tell anyone, but the next day it turned black. My primary doctor brushed it off. I went in for another scope for my EoE and they FREAKED out! They got the bite all under control, but I still had an immense amount of pain! I was finally diagnosed with CRPS. I walked in to my doctors appointment on Cruches, was admitted, and by the end of the day I couldn't move my legs at all! After multiple hospital stays, long car rides for rehab stays and an OSKA Pulse machine I am finally walking with out assistance (Cane,Walker, Wheelchair etc)
Do you already have a diagnosis? How long did it take you to get it?
CRPS: 3 months (I was really fortunate with how short it took, there was a misdiagnosis of Guillan-Barre, but were able to get the correct diagnosis)
POTS: 1 year
EoE: that day, didn't really realize I had anything wrong with my throat until then
EDS: I went to the hospital for CRPS and they then diagnosed me with EDS type 3 and confirmed Fibromyalgia and CRPS
For what medical specialties have you been treated? What has been the most useful specialty for your?
Inpatient Rehab stays, OSKA Pulse, I do take pain medicine
Increase in Salt (salt tablets) Increase in fluids, IV fluids, I'm supposed to be wearing Compression stocking but have issues with the the extreme amount of pain I have in my legs, on my good pain days I can but otherwise I don't.
Elimination Diet for the EoE, I was also entered into a Study this year for it.
What has been the most useful thing for you so far?
OSKA Pulse,
IV Fluids, Salt Tablets
What have been your biggest difficulties?
I get Dizzy every time I change positions.
Having extreme pain ALL the time! It has calmed down a lot from the OSKA but I have only been using since May
Having all of these Invisible Illnesses so being judged for not being able to do things a normal teenager should be doing.
How has your social and family environment reacted? Have your social or family relationships changed?
Most of my family understood it, it took them a while though. However, not all of them have, I haven't talked to My uncle since 2013 because of how he reacted. When I was first diagnosed with CRPS I pushed a lot of my friends away, some stayed anyway.I made a lot of new ones though!! I was kicked out of school because the assitant principal wasn't willing to cooperate with my doctor.
What things have you stopped doing?
School..
There is a lot more but that is my biggest one!
What do you think about the future?
Honestly it depresses me! I wanted to Graduate high school go to college, then a medical school ( I assume, dont remember what it all required) to become an OB nurse. I'm pretty sure you can't become an OB nurse with a GED.
So far, which years have been the best years in your life? What have you done during them?
The Summer of 2013 was one of my favorites. 1, I was A LOT smaller! I gained a lot of weight from all of the medicines they had me on from the spider bite and then the CRPS. 2, I didn't have anything to worry about, School was out and I was young so I had Fun!
Now I am still young but I feel like I had to mature a lot! I still have fun some times but a lot of time I have to fake a smile.
What would you like to do if you didn’t have your condition?
Graduate High school, Be an OB nurse, have a family/kids
If you had to describe your life in a sentence, what would it be?
I never know what life it will bring, so I have to take it day by day.
Finally, what advice would you give to a person in a similar situation?
Stay Strong, even though it's hard. Don't worry about what other people think, you have other things to focus on. If you think there is something else going on/your doctor doesn't belive you say SOMETHING! If they don't acknowledge your concerns, find a new doctor.
