Want to talk with others. Have you found relief from CRPS?

I have Chiari malformation and the nerve pain is hell! I can't sleep from the pain,and really need help blocking it out! How do you do that??

Hi there, I was diagnosed with CRPS Type 2 (Causalgia) in August of 2018 although it actually developed after my right TKR in May of 2017. The only reasons I was diagnosed? I knew something was wrong with my body and it wasn't going away and getting "better with physical therapy." It wasn't in my head. I worked in the healthcare field as a pharmacist for 22 years and knew how it operated, especially in the rural state of Wyoming where it is hard to get informed care. I never gave up even after eight healthcare providers told me I was "normal" or the pain would subside with "time and rest," even after fourteen months.
To this day, I still have to do my own research for pain management and treatment and consult my neurologists and primary care before accepting recommendations from my current pain management provider because she isn't versed in the latest therapies for CRPS Treatment especially with someone who has grand-mal seizure disorder and migraines as well as being a recurrent high-risk C difficile infectious colitis patient.
She's made serious treatment errors that I've only managed to stop on my own by calling my other doctors and consulting my PT myself BEFORE taking the medications and I'M a pharmacist! Can you imagine what could have happened to someone who wasn't a healthcare provider?
The point is to do your own research. Be informed and know about your health, medications, conditions, and treatment options before you go to the doctors and definitely before you start them. Consult ALL your providers! Don't assume anything is being done on your behalf.
It can save your life.

Hi there, I was diagnosed with CRPS Type 2 (Causalgia) in August of 2018 although it actually developed after my right TKR in May of 2017. The only reasons I was diagnosed? I knew something was wrong with my body and it wasn't going away and getting "better with physical therapy." It wasn't in my head. I worked in the healthcare field as a pharmacist for 22 years and knew how it operated, especially in the rural state of Wyoming where it is hard to get informed care. I never gave up even after eight healthcare providers told me I was "normal" or the pain would subside with "time and rest," even after fourteen months.
To this day, I still have to do my own research for pain management and treatment and consult my neurologists and primary care before accepting recommendations from my current pain management provider because she isn't versed in the latest therapies for CRPS Treatment especially with someone who has grand-mal seizure disorder and migraines as well as being a recurrent high-risk C difficile infectious colitis patient.
She's made serious treatment errors that I've only managed to stop on my own by calling my other doctors and consulting my PT myself BEFORE taking the medications and I'M a pharmacist! Can you imagine what could have happened to someone who wasn't a healthcare provider?
The point is to do your own research. Be informed and know about your health, medications, conditions, and treatment options before you go to the doctors and definitely before you start them. Consult ALL your providers! Don't assume anything is being done on your behalf.
It can save your life.

You are right, its best to be Proactive and read everything you can. I find Doctors are severely lacking in compassion, and are more interested in numbers. I feel like a "hot potato" passed from doctor to doctor because I ask questions. My trust is in Jesus.

@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

You have very well stated my assessment all the way down to my having had enjoyed excellent health all my life as well - until now. I have a 3 page list of Neurological, ENT, Spine Surgeons, etc., yet I am treated like a "hot potato" passed from doctor to doctor. I have letters from Doctors firing me as a patient because I ask too many questions. One doctor I saw at a teaching hospital yelled at the Resident who actually spent time with me reading my file, that "You need to move on, there is a full room of patients outside!" My faith and trust is in Jesus.

You have very well stated my assessment all the way down to my having had enjoyed excellent health all my life as well - until now. I have a 3 page list of Neurological, ENT, Spine Surgeons, etc., yet I am treated like a "hot potato" passed from doctor to doctor. I have letters from Doctors firing me as a patient because I ask too many questions. One doctor I saw at a teaching hospital yelled at the Resident who actually spent time with me reading my file, that "You need to move on, there is a full room of patients outside!" My faith and trust is in Jesus.

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.