see if they set up a video chat room lol
Country of Residence
United States of America
Allergies, Bone, joint, and muscle disorders, Caregivers, Chronic pain, Digestive disorders, Healthy Living, Hormonal and metabolic disorders, Infectious diseases, Lung and airway disorders, Neurology (brain and nervous system), Palliative and end-of-life care
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. :)\
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.
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.
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.
My pain specialist wants to prescribe Ketamine orally for me for my CRPS (type 2.) I've discussed it with my neurologists and they don't believe it will be effective and I'm a high risk due to my Seizure Disorder and migraines. It may "help" or not either one of those at the risk of sending their controlled status out of whack as well.
I really don't know what to do. Both neurologists recommend IV ketamine for CRPS especially since I am progressing, but no other method.
Pain is an indicator. You've had experience with TKR rehab. Call your doctor. I'd rest, ice (and heat depending on variables and swelling), compression, and elevate until you see PT again. Maybe try gentle massage or stretching exercises only unless pain drastically changes to keep what mobility you've gained. MMO
Your story sounds so familiar to my own parents. They packed up and moved to Florida after my brothers begged them. Did they help? Nope. (Sorry, long story.) We support my parents when and if they ever need it and we are both disabled and live on a fixed income. Why? Because we want to. My folks have now left Florida (please note that one brother no longer lives there as well.)
I only have two questions for you and please know you are in my thoughts and prayers. I hope you seek and find the strength and hope to do what makes you happy.
1. What's wrong with the "girls" helping you like your son does? (If you stay, that is.)
2. What's stopping you from going back to Maryland? Decide to do it. Start the process! Job, home, friend to help? Go for it!