Mayo Clinic Connect
I was diagnosed with complex regional pain syndrome a year ago. It has since spread and I am experiencing a decline in my health at an alarming rate. I am hoping to talk to others that may have found relief.
Liked by Jen, Alumna Mentor, Leonard, teetee7, rsnowflake ... see all
@speechless623 I agree, one needs to take charge of one's own health. Some Dr's do have compassion, for example my PCP. However, she can only do so much for a potentially serious condition such as mine (SFN) which is, as yet, undiagnosed. What is needed is a coordinated effort by physicians in such and all cases. Instead, one has to go to many specialists as each specialist only looks at one aspect of the symptoms/causes. The results is that the patient, such as myself, and probably you, going to multiple Dr's and wait months between visits. Meanwhile, the symptoms get worse and the patient, like myself again, spends many hours researching the literature on-line and elsewhere obtaining a "self-diagnosis". The patient thus becomes fearful of the outcome and results in developing serious anxiety about the outcome. This can result in years of searching, Dr's visits and expense on the patient's part.
But such a system is, in fact, advantageous to the Dr's as they can bill the patient and the insurance companies and make more money. When one does get the long anticipated office visit, the amount of time spent with the patient is minimal. One cannot even get all one's questions answered because of the scheduling of patients at 15 minute intervals. Some Dr's even admit they have to do this for Medicare patients and all patients because Medicare does not pay much. I can understand this to some degree. However, even if one is self-pay, as I was for many years before I qualified for Medicare, everyone is treated the same. I view this as a serious, expensive problem within the medical system. Coordinated care would help but there are more systemic issues here being debated all the time. Unfortunately, no one wants to address this "wicked" problem (well not as "wicked" as global climate change and wealthy disparity).
I think Mayo has developed a model for this by assigning and involving a team of Dr's in the patient's case and providing a "care coordinator" to insure that the patient's condition and symptoms are treated in coordinated manner by necessary participants. This could serve as a template for other Dr's and specialists. However, there are added costs and outcomes here as well. Mind you the cost of not doing this are even more expensive as this often results in unnecessary surgeries, treatments, prescription drugs (multiple drug combinations that have adverse effects not to mention costs) and other mistakes, once again not beneficial to the patient and those paying for the treatments (self or insurance companies). The bottom line is that health care reform is necessary. There are some very smart people working on this problem and I have read many books (some by the those involved in reform – including books by Dr's who agree with the need for reform and compassionate care) and others. My supposed SFN is my first foray into the medical system having been in good health most of my life. Now I am seeing the problem first hand and am getting an appreciation for what the books and others have been telling about for years. Enough rambling for now…thanks for listening to this long diatribe…Pam
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You hit the nail on the head!
Liked by Leonard
I recommended my doctor read Compassionomics: The Revolutionary Scientific Evidence that Caring Makes a Difference written by physician-scientist team Stephen Trzeciak and Anthony Mazzareli as it provides overwhelming evidence for the healing power of compassion. As a patient very adversely impacted by Physicians callous lack of compassion and discriminatory treatment of me, a handicapped person, I strongly recommend Doctors read this book, put its content to work into their practice and those of their students/staff. Truly, no one knows the human body better than God – He created us. I am praying for our healing in Jesus name. I am praying for Doctors to be compassionate in patient care.
@speechless623 et. al. Here are books I recommend per my previous post on Dr's and the healthcare system. These are written by Dr's who have stood up Dr's and told it like it is. I am listing the audiobook versions here but they are out in all forms including ebook. ALL Atul Gawande's books are all good and he is working to reform the healthcare reform…
A Surgeon's Notes on Performance
By: Atul Gawande
Narrated by: John Bedford Lloyd
Length: 7 hrs and 34 mins
Release date: 03-21-07
Publisher: Macmillan Audio
4.5 out of 5 stars4.6 (1,546 ratings)
What Hospitals Won't Tell You and How Transparency Can Revolutionize Health Care
By: Marty Makary
Narrated by: Robertson Dean
Length: 7 hrs and 16 mins
Release date: 04-22-13
Publisher: Tantor Audio
4.5 out of 5 stars4.6 (131 ratings)
I doubt that a doctor like that would even benefit from the book, let alone read it.
I was finally diagnosed with CRPS Type 2 (permanent nerve damage of the lumbosacral plexus) by my neurologist at 6:30 pm in his office after a six-hour appointment, multiple tests, MRIs, and consultation. He's a Christian and thoughtful, kind man who refused to give up. He was the eighth provider I had seen in a year and a half. I had been told that the excruciating pain, abnormal gait, numbness, burning, well, this list goes on, was "in my head," "would subside with rest and time," "was part of the knee replacement rehabilitation," and of course, "me over-reacting or just being a wimp." I love the last one, don't you?
Within three months of his diagnosis, I was diagnosed with progressive Complex Regional Pain Syndrome, Type 2, high-risk recurrent C difficile infection colitis.
Since May 2017, I have gone from a productive 22-year career pharmacist who provided for her disabled husband to a woman who can't drive, care for her home, or leave her home. I can't walk, stand, sit, or lie down for any length of time. I rarely sleep. Today, I was told by another "pain management specialist" that the answer is to wean off of all "opiates" and I would miraculously be free of pain. All I needed was to change out my Spinal Cord Stimulator leads and I would be able to go back to work! Woohoo! Everything would be hunky-dory. (Sorry, that's sarcasm. I didn't have the temperament at the time to correct him that I take opioids, not opiates.) He actually sounded like the poster child for the DEA agents I spoke to about ten years ago when they thought they had the answer to the Nation's Opioid Addiction Problem. I simply popped their bubble and told them that they were missing the Gabapentin that everyone was using as an additive and stimulant with their opioids at the time and nobody bothered to notice. They dismissed me. Too bad I was right.
The issue is that NOT taking opioids won't make my pain go away. Changing my leads won't make my pain go away. And working as a pharmacist OR anything else will NOT make my pain go away. The issue is that I have CRPS Type 2 and my pain will never go away. When asked, he didn't know the difference between Type 1 and Type 2. He didn't know what the cutting edge treatments were for CRPS. What LDN was… He said he gave Ketamine IV in his OFFICE!
BE CAREFUL WHO YOU TRUST WITH YOUR BODY, BRAIN, AND EMOTIONS. YOU ONLY HAVE THIS ONE LIFE ON EARTH. God gave us a brain to use it. Do so. Get prepared. Listen, learn, and be armed with knowledge and faith before YOU decide what to do with your body. God will be with you the entire way. He will not leave or forsake you. He will walk through fire if need be.
PLEASE, PLEASE, KNOW YOUR BODY. KNOW YOUR DISEASE. KNOW YOUR TREATMENTS. KNOW WHAT IS ACCEPTABLE, WHAT IS NOT. Don't be fooled by fancy words or a white coat.
AGAIN, your life may depend on it. So far I have kept multiple errors from occurring in my own case merely by doing this.
YES, the best approach is the TEAM approach. Unfortunately, many physicians and specialists are too prideful or busy to consult with other doctors about their patients, relying on medical records, incomplete at that, to give them the "required" information that they base their pre-visit, and sometimes, conclusions about the visit on. They are too busy or too booked up to spend adequate time with their patients to confirm, clarify, or simply take a complete history and examination either. Therefore, they go with their "gut," a conference or statistical approach, or simply what a previous specialist's opinion. Why spend the time on a complicated case when they don't have the time for the easy ones?
That is the truth about the majority of our healthcare system today, especially in rural America like Wyoming.
YOU MUST BE THE CAPTAIN OF YOUR HEALTHCARE TEAM. YOU must make sure that all your providers are on the same page when it comes to your care. YOU must make sure that everyone has the most up to date information, test results, imaging, and medication lists. YOU must carry the information everywhere so no one needs to guess how to treat you if they need to. YES, it's sad. YES, it's bad. But your LIFE DEPENDS ON IT.
If you have a chronic health disease and are treated by more than one specialist or doctor, YOU are the one responsible for your healthcare. NOBODY will do it for you. Please don't let yourself down. I care too much about you to NOT tell you the truth.
@faithwalker007 Hello Renee, I am Lori. My middle name is Renee! I am so saddened by your diagnosis. I have nerve damage in my feet, and it is excruciating at times. I read everything you wrote, and I agree, fully. For what it is worth, there are a few things that have helped me. One is Scrambler Therapy. It did not take pain away, but brought it down a few notches, some of the time. I had met CRPS patients getting Scrambler treatment when I went for mine, and some said they got a lot of relief from it. Of course, everyone is different. The other thing that seems to take pain away for a few hours, is Kratom. I have several posts on the Neuropathy site about it, but if you want to know about it, let me know. Living with chronic pain is human torture. No other way to say it. Take care, as best you can. No answers here….. Lori Renee
Liked by Faithwalker007 (Renee)
Thank you, Lori. I appreciate your reply and advice. I will definitely look into Scrambler Therapy and Kratom. I live in a very small town in Wyoming so I will need to see how I can access the Kratom as well as any interactions and contraindications it may have. Thanks again! It's nice to be responded to in this site. :)\
@faithwalker007 It's Lori, again. If you research Kratom, and decide you want it, let me know. I have an online vendor I get it from, who is also in Chicago, Illinois, where I live. I have been to the shop, and it is a bustling, clean, friendly place. Kratom comes from trees in SE Asia. The leaves are ground into a powder, and you basically take a few teaspoons into water, and chug it down. I find I am pain free, after having serious pain, for about two hours or so. I find it works better than everything, for pain, except marijuana. However, I am not too nuts about marijuana, because I don't like the high. Kratom does not cause a high. As far as Scrambler Therapy, I have no idea if it is available where you live. But it did bring my pain down. Anyway, good luck, and if you need any info, let me know. Lori Renee
Hi everyone I recently had been diagnosed with complex regional pain syndrome after undergoing a complete knee replacement surgery and would like to know if anyone else is familiar with this issue. This is a pain in my leg like I've never experienced before in my life
Liked by sunnyflower
Hello @smallengineguy, Welcome to Mayo Clinic Connect. You will notice that we moved your post to an existing discussion and changed the title to describe the purpose of the discussion a little better. If you click the VIEW & REPLY button at the bottom of the email notification, it will take you to the new discussion where you can meet other members with similar symptoms.
You may also be interested in another discussion – Complex regional pain syndrome or reflex sympathetic dystrophy: https://connect.mayoclinic.org/discussion/after-knee-replacement-i-developed-rsd-i-have-had-severe-pain-in/
@rsnowflake, @mam14, @lioness, @carolhope, @struggler23, and other members may have suggestions or experience to share on CRPS after knee replacement.
Have you discussed the pain with your surgeon or care team?
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor, smallengineguy
Thank you for your guidance. I do appreciate it
Liked by John, Volunteer Mentor
I am currently working with a pain management center at NURA pain management in Edina. We are exploring otions… already had the nerve block injections…my body did not like it and had seizures and confulsions.doc felt the meds may have triggered them. I am currently taking pain meds to help. I did send a request to Mayo clinic for a second opinion and hope to hear from them midweek .I feel any information is worth it and it helps knowing that I am definitely not ALONE!!!
@smallengineguy You are definitely not alone! Here's some more information you might find helpful on Mayo Clinic's Pain Rehabilitation Center.
Pain Rehabilitation Center – Overview – Mayo Clinic: https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
Patient story – Pain Rehabilitation Center Offers Freedom From Debilitating Symptoms: https://sharing.mayoclinic.org/2020/03/11/pain-rehabilitation-center-offers-freedom-from-debilitating-symptoms/
Liked by smallengineguy
Thank you John for all your support. This is a new experience for me and it's a little scary. I'm 57 and with 4 granddaughters who mean the world to me I am trying to stay active in their lives but it's been HARD…VERY HARD
Liked by John, Volunteer Mentor, sunnyflower
Dear smallengineguy, I am so sorry to hear this! CRS is supposed to be one of the most painful conditions in the world. I will be upholding you in prayer. Warmest regards, Sunny flower. 🙏😥
Thank you very much sunny flower. I've been looking for a board like this where we can share our own stories and hope to find answers but most of all…..support. I feel we all need each other during these most difficult times. I will be asking Mayo clinic for a second opinion just to make sure but I feel ive all ready have my answers (albeit difficult) to comprehend and accept right now. I pray the other doctors are wrong but 3 different docs???
Liked by Colleen Young, Connect Director
Dearest smallengineguy, I really do get it. My whole life all I ever wanted to do was have kids and be a grandmother. I am have so many diseases and conditions, quite a few that are extremely painful in nature, that limites me greatly from being the Grammy that I want to be. I do grieve over this loss in my life however, at the same time, I am acutely aware of my innumerable blessings that surround me. It is really difficult to understand how, at the same time, I can be begging the Lord to take me now because I have reached my human tolerance threshold, and yet, at the same time, telling Him that I want His will for my life because I know that ultimately that is where I will have the most peace.
Were it not my intimate relationship with our living God oh, I would never have made it this far.
I wish for you the same comfort and the peace of God through Christ which surpasses all human understanding, Philippians 4:7, that keeps me going. And also knowing and understanding his plan for my temporary life here: Psalm 139 ;16 "Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be", and eternal life, and try to keep focused on His promises which never fail.
No matter how bad it gets and believe me it does as you well know, I never lose the hope and assurance within me, Hebrews 11:1 "Now faith is being sure of what we hope for and certain of what we do not see"
I care deeply and hope and pray you will find Solace for your soul. Fondly, Sunny flower. 🙏😊 @johnbishop
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