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
Im so sorry you have been diagnosed with this horrible didease. You won't want to talk to me. I'm taking gabapentine. The onlyreason I know I works is if i miss a dose. Althoughi have been told they will never let me suffer. After 6 Drs I'm in screaming pain every waking moment. I sleep well fortunately. Ive been dealing with it for 2 years 4 months. Sorry i cant help you.
Liked by Leonard, mlross4508
I am asking for a friend who has a lot of female problems. She has familial hemiplegic migraines (inherited migraines that mimic stroke symptoms). Also has endometriosis, fibromyalgia, seizures, and abdominal migraines. She is on a lot of opioid pain meds that in my opinion are making things worse. I want to help her, but don't know how. She has had a hysterectomy 2 years ago and kept 1 ovary.
Liked by Leonard
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I was diagnosed a little over a year ago. It started after a broken ankle. It never really healed. Got purple and blue..really bizarre. Went back 2 orthopedic surgeon and he knew someone who studied crps for 2 years at Jefferson hospital in Philadelphia. I was very lucky 2 get diagnosed early, but it all went down hill after that. I got a nerve blocker on my leg. It worked great. Unfortunately it jumped quickly 2 my arm about a month after the nerve blocker. I didn't get that lucky that time….it got really bad and nothing worked. So I got a spinal implant. Sounds scary, but saved my hand!!! They put 2 leads in in case it jumped 2 my other arm…which it did. I use an ipod to control my pain day 2 day. Weather plays a big part of good and bad days, and so is stress. So try and find something just for u 2 do on those rough days….. really! I'm a 45 year young woman and I'm coloring to calm me down and I listen to music and tune out the pain. Would like to talk more I'm rsnowflake!
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.
I understand about not being able to block out the pain to sleep. I can usually distract myself enough to make it bearable with medication during the day but nights suck. I have no words of wisdom for you. I don't take sleep meds every night but if it's been over 4 or 5 days without sleep and my body refuses to crater, I will. Eventually, my body does crater and I sleep. It's a hard way to live but that's life with chronic pain.
All I CAN suggest is to talk to your primary care provider about your dietary nourishment and vitamin intake. Have them check your B12, Vitamin D, B, and all the levels that reflect your energy and dietary requirements. Make sure you are getting all you need. Sleep is when the body heals and replenishes what it needs and when we don't sleep, our body and mind suffer. The body breaks down in more ways than merely being fatigued. That's why we get grumpy, don't feel like eating, and eventually end up sick with colds, the flu, and much, much worse.
Battle it on more that just one front (diet, rest, exercise if possible), and you may be surprised how much better you feel.
Liked by Chris Trout, Volunteer Mentor, Leonard
Thanks for the wisdom.
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.
Liked by Leonard, barbbie, Faithwalker007 (Renee)
@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.
Liked by Leonard, barbbie
@speechless623 I wish I had your faith. All I have is science and it is failing me at the moment! Pam
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.
Liked by Leonard, Jennifer Hunter
I too have been fired by many doctors, not for asking questions as much as for stumping them, which they don't like to admit. My Christian faith has provided two doctors for me who actually asked me to be their patient! One asked me when I visited a clinic he supervised. He has been my PCP for 11 years. The other called me on the phone and asked if I would like to see him for pain management. I have been seeing him for 7 years. I believe God, in His incredible way, was responsible. I have yet to meet another who was asked by a reputable doctor to be their patient., much less by two. Both of these men are the same age as my older son and I call them both by their first names.My PCP cares about my physical, emotional, and spiritual being. He sees me for 30 – 40 minutes a visit. He is a D.O. and also provides OMT which is great for me as I have numerous allergies to meds and much prefer his treating my muscle and nerve problems with hands on. Pain Management doctor is exceedingly talented and knowledgeable about so much and is so very current. on methods and treatments. He shows his care for me by avoiding the many things I am allergic to, by his fantastic sense of humor, by his not being intimidated by my many "weird" neurological conditions, and simply caring for me as a person. I feel truly blessed.
My prayer for you is that the right doctor(s) for you will be provided soon.
I doubt that a doctor like that would even benefit from the book, let alone read it.
True – but I was raised in a large Christian family (12th child) to believe you do your best and God will do the rest.
Liked by Leonard, Leonard
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