At just 16 years old, Jonelle was hit by a drunk driver and suffered a broken neck. The only reason she survived is that a friend was driving behind her and rushed to her aid, holding her head in proper alignment to open the airway that had been cut off. After being life flighted to the hospital, Jonelle’s doctors were astonished that she not only survived her injuries, but did not suffer permanent paralysis. An even greater shock would come in her 20s, when Jonelle’s neck was broken a second time in another car accident. This would lead to several surgeries, leaving Jonelle with a poorly understood condition called complex regional pain syndrome (CRPS).
In episode 42 of the Major Pain podcast, Jonelle shares her incredible story of survival and subsequent pain journey. CRPS is not widely known among doctors, often leading to misdiagnosis and improper care. It is characterized by intense pain localized around the site of injury or surgery, disproportionate to the injury in both severity and it’s long-lasting nature. Patients face extreme difficulty in not only managing symptoms, but advocating for care in a system that often disbelieves their situation due to a lack of CRPS awareness. Jonelle shares stories of shocking negligence from multiple doctors, as well as deeply personal reflections on her difficult path. Jonelle has turned to activism through her work with the National Pain Council, helping other chronic pain sufferers get the care they deserve. She has learned a great deal about self-advocacy, and finding joy on the other side of trauma.
This week Jesse participated in a panel discussion on Invisible Disabilities with the ConnecTra Society. You can watch the archived live stream here: https://www.youtube.com/watch?v=mxM4GqjpHUM
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast
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Jonelle Elgaway · January 19, 2022 at 3:15 pm
Jesse thank you so much for having me on. You made my first time being interviewed comfortable, fun and easy. Conversation flowed, yet you pulled me back when I had a moment of major ADHD and jumping all around. Thank you! If any of your listeners would like to learn more about or sign up as a member of NPC, they can do so at NationalPainCouncil.org. I’ll be sharing this interview and your website on all my social media accounts. Until next time! #WeR1
Crystal Hughes · January 19, 2022 at 5:17 pm
Thank you for your advocacy ! Thank you Jonelle for your activism and work with the National Pain Council (which I support every month btw) and on behalf of chronic pain patients everywhere. ✊🏼
Karen Robson · February 1, 2022 at 4:51 pm
Just grateful for some recognition for CRPS/RSD…..as I have suffered with it for 16 years now. Most of my family do not “believe” in CRPS and think I can just exercise and get better that way. They also think I am an addict because I have to take regular pain medication so that I am not bed-bound. It’s truly a horrible way to live. Doctors know very little about it, and now that I have moved from Montreal, Quebec, Canada, to Ottawa, Ontario, Canada, to be closer to the son that does not “believe” in CRPS and that it can be cured with exercise…..he promised that he would find me a doctor here in Ottawa, and has not….I have no doctor, only one in Montreal, which is a three hour drive one way….so six hours round trip for an appointment. Even my doctor has told me that it is my “anxiety” causing the pain, that the pain is “not real”…….So, it’s been a rough ride. I’ve been here since September, and still have no medical help, even though there is a pain management clinic here, I can’t get to the pain management clinic as you need a family doctor from here to follow you. I don’t have that. So, it’s been more than rough. I’m glad to hear your podcast.
Major Pain Podcast · February 2, 2022 at 2:45 am
Karen, I’m so sorry to hear how hard your journey has been. A lot of us in the chronic pain community know what it’s like to not be believed by friends, doctors and loved ones. It never stops hurting to have your physical reality constantly questioned, I’m so sorry you are experiencing that from all sides right now. I have hope that you’ll find medical support! It took me switching doctors many times until I found someone willing to help.
Cocoaimee · February 11, 2022 at 6:39 pm
What’s the one thing you can give away and it change your whole life?
17 yrs ago when I laid on the bathroom floor screaming in pain and I was no longer a true person, but instead a helpless woman that had to make hard decisions. Like who will raise my kids, Bc I certainly can’t like this.
When I tried all the treatments and they failed. I was sent to a doctor that said he could help. Of course, I did not believe him, bc in two years everything just got worse with each invasive treatment.
He pulled out his script pad and wrote a script for 5 mg of oxycodone and my husband filled it. He was a wonderful doctor. I took that 5 mg oxycodone and it worked! The medicine brought my pain level down from a 10++ to a liveable 5. I had some concerns though and I had a long talk with him about my concerns. I voiced my worry about what if these pills just quit working or don’t work as well as they did as time goes by. He explained that usually does happen eventually, but it’s different for everyone. He said arpund year 4-10 I would probably need to be increased or I may not it would just depend on my disease process and my body. I asked him if this is safe and he told me of course it’s safe. He explained that he had patients on morphine for 30 years and they are on very high doses and are alive and doing well. I did the research and he was correct, So I said to myself “ok, something that lets me be a mom and wife again.” I still struggled Bc a 5 isn’t fun either, but you learn how to push thru that 5 and make life workable and sometimes enjoyable.
Well fast forward 6 yrs later and my pain doctor retires and the DEA/cdc guidelines start ramping up and a new dr has inherited me.
Unfortunately pain management has become a risky business and my new Dr. is scared of me, bc she does not know me,so I must prove myself all over again. Due to the guidelines I endured more unnecessary procedures and organ removal, so even though it was time to up me it never happened. So for 17 years I have been at the same beginning 5 mg dose. Only now my body has incurred more damaged. One of their surgeries damaged my prudendal nerve . Others surgeries removed my bladder, colon, uterus. All separate surgeries that I had to endure to prove myself. Iam now in kidney failure which never had to happen. My nephrologist has explained to me if they had just honored the original agreement I would not be in kidney failure. The oxycodone when taken correctly is the least damaging thing to my organs. The off label Lyrica, amitriptyline, topamax, Flomax and the list goes on and on. Those medications were not necessary if they honored the original agreement nor did any of those medicines help. They made me feel more sick. I lost my ability to live a full life. Oxycodone on its own never did that to me. I’ve never been high from any substance or medicine in my life so I struggle with that concept. I don’t drink alcohol never really did or smoke cigarettes, so this so called high I just don’t understand it. I don’t understand who would want to take opioids if you did not really need them. They have side effects too, but they are live able side affects compared to my pain conditions.
I’m grateful for the medicine the oxycodone saved my life and saved my family enormous grief from watching my suffering, but I gave away my free will!
What I mean by that statement is before oxycodone it was my pain on that bathroom floor. I owned it, but everyday after I started oxycodone it became their pain to play with like I was a lab rat. By their or them I mean the governments/CDC). The government and CDC control it, they decide wether I’m in pain or not. At least on that floor in the bathroom it was my free will. Now they own me like a piece of furniture. They can throw me out to the curb or be kind to me. The government tells my Doctor wether I can spend Christmas with my family, whether I can celebrate my children’s birthdays. Its pure ownership over my humanness. Its all up to them. Being under medicated all these years with additional damage from surgeries to my body has my pain levels of 5’s they are now 7’s and 8’s Bc a promise was not kept.
I use to have good and bad days. Now I just have bad days and worse days.
I don’t regret the medicine it saved me then, but I do regret how easily a promise can be broken when it’s about one of the most important things in your life, your health.
Its not the Drs fault! They are being bullied and are scared. The ones that stood up against the cdc guidelines would loose their license and their practice. We’ve all heard the stories about that happening.
So FREE WILL
Where does it stand now???
Major Pain Podcast · February 11, 2022 at 9:02 pm
Wow what a powerful message. I’m going to share this on next week’s podcast. You are so right that government agencies should not have control over dictating your pain, it is a severely broken system that is failing too many people. Pain patients deserve so much better.
Southern · February 16, 2022 at 11:36 pm
I’ve been in pain management for 17 years. I was living in one state and the pain management doctor was great. I was on 120mg of morphine. I got married to a lady in another state and relocated there. The trip back to my pain doctor was to far and costly so I went to a doctor close to our home. I was immediately taken off the morphine and put on 60mg of Norco. I went through withdrawals and it took months to get used to the Norco. My pain levels went from 3/4 to a 7/8. My conditions had rapidly worsened. I developed severe spinal stenosis in not one but 4 areas of my back as well as having several more degerative disc. I had a lot of arthritis in my neck. The stenosis caused a burning numbness in both legs and feet all the way up to my waist sometimes. I was scheduled to see a back surgeon to try and lessen the numbness and pain through surgery. The last MRI on my low back they seen a mass in my left kidney the size of a tennis ball. We have put on hold the neurosurgeon until we know what this mass is. A biopsy is scheduled in a week. I have been rapidly tapered from 6o mg of Norco to 40mg per day. I have gone from 120mg of Morphine to 40mg of Norco in the span of 2 years. My pain is unmanageable. I used to have a very active life on the morphine. I lost 70 lbs. while I was on it due to eating right and getting active. My weight was less than when I graduated high school at 178 lbs. I now weigh 190 lbs. All I can do is lay on the couch or in the bed. I have no quality of life anymore. It is criminal what the powers that be are doing to chronic pain patients. IMO we should be able to sign a waiver not holding the doctors responsible if we overdose or develop anything else from opioids because daily severe chronic pain is no life. My marriage has suffered. Our home needs work but I am unable to do it on my current dosage.