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

I have CRPS 1 & 2, In my foot and leg. I finally was diagnosed with it in 2014 after seeing quite a few doctors. Am here because the medication hasn't helped in a couple of years now. The Narco and Nerve meds just leave me in a fog. I had a spinal cord stimulator that would shock me all day for 3 years. They accused me of lying and finally Dr. Lubenow at Rush found out the leads were broken. Am tired, I can't sleep really and am very depressed. Really ready to just go home, can't imagine another 5 years like this. Any advise on new treatments.

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.

@rsnowflake Good morning I'm Lioness I use to live in the Pittsburg area before moving to Calif. I have fibromyalgia O.A. and had a fracture back that gives me pain. I know about the weather issues even when it rains here I feel the change and we are in a rainy pattern now. I am 76 now but remember by 40,s it was tough that's when fibro started my mind was all over the place with that and menopause I was a wrecking ball wonder my family didn't desert me. Its good days and bad we all have but I have developed a tool box of stuff I do. Ice ,heat Tens unit for relaxation, Tappingsolutions.om if your not familiar with tapping. Tai,Chai, I started a chair exercise program here where I live Ginger turmeric tea for imflamation and it just taste goods. I wish back in those days I would have known about some of those tools . Sometimes when Dr,s don't have the answers we have to look elsewhere . I do a lot of research on any subject ,computer is great for this . WebMD.com ,https://www. nich.nih.gov I'm here if you want to talk This is a good group of people on here that care and try to help others

Thank you. I will look into that for sure. I tried to order a CBD oil, one that is legal and supposed to be safe. I got scammed. It was infuriating with all I'm going through. Have you ever tried one of those?

Hi, I have found relief with retraining the brain with positivity. There are many great books on how to do this. I have also used Ketamine Infusions. They are rarely covered by insurance and are real expensive. These are only tools and are not cures. I have CRPS II almost full body. There are a 2 face book groups with positivity. Stay away from the negative groups. Positivity with CRPS/RSD.Org is a great group. Another one is P neuropathy success stories. Other neuropathy groups are negative and tend to make me feel worse yet compassionate towards the person suffering. Not allowed to post any other groups to those sites. I hope you find the positive groups. You will find so much help. your friend, Doreen