Hello Renee. Thanks for your note. I have had one grandular nerve block and another in March. I was told about the pump but will not go that route. I have been prescribed some creams that are working very well along with a patch. No pharma drugs for me, I was told of a few that I can take at night. But due to another drug I must take, there may be a contradiction. I guess I can bear some pain over taking more pills. I use CBD in vaping form, cream and tincture, that helps take pain or anxiety edge off. It’s my new normal and I intend on moving forward. One thing I do have is inflammation In my knee so when I walk my leg feels heavy. Did you have this problem? What a nasty condition, sorry to hear you too are affected. Sucks.
Liked by rsnowflake
Yes unfortunately it has effects on other parts of my body. I get sick more often than I used to, my doctor said it is normal with this disorder. It never has the same medical effects on each person that has it. So basically I do my own research and try to make it not change my life…… which sometimes it does. Not enough research because it's so rare. Again keep in touch. I'll always be hear to listen or trade information. Feel good today.
I've had RSD for 7 years now. It started after a total hip replacement. I woke up screaming and had drop foot. You are right about one thing. The weather plays alot with this disease. I live in Florida and when hurricanes comes near us and the barometric pressure changes my RSD is out of control. What started in my left leg is now in my right foot and both hands. I see a pain management Dr who uses ketamine to help me with the pain. He's wonderful. He's even on the news from Time to time. His name is Ashraf Hanna. He is in Clearwater Florida and sees people from all over the country.. I also developed Gastropyrisis. It's a disease where my stomach doesn't empty. Instead my food comes back up sometimes even when I'm sleeping. I take several medications for my stomach. I'm also taking gabapentin and methadone for my RSD. It does spread. I've met a few people who have it full body. The disease has been around for over 100 years. It started back in world War 2. Dr's couldn't understand why soldiers who had to have a limb amputated were in this insane pain. At the time they called it phantom pain. The patients were given high doses of morphine to control their pain. Sometimes it worked and others would scream constantly. It has only been a few years since the Fda began to recognize it as a chronic pain. I hope I've been able to answer your questions. If I can help I will… In peace ✌ ❤ 🌟 Mary
Liked by rsnowflake
Thank you for your information I'm only 45 and I would love to get the ketamine treatment, but unfortunately I can't afford it and my insurance won't cover or reimburse any of it. I like near Philadelphia and have only heard amazing things about this clinic. And the clinic even tried to negotiate with my insurance, but with no luck. So at this point I have spinal stimulator that works for my arms. But it seems that my health has deteriorated since I've been diagnosed, which I have heard from some of the other people I've been speaking with. Feel free to chat anytime or just vent. Renee
Hi I'm sorry you have this disease. It can be very complicated as yes it is different for everyone. You are still young. I'm 60 now and deal with it daily. I'm one of those people who get ketamine infusions and then within a few days the pain slowly comes back. I'm sorry your insurance won't cover it but I think if you get just an appointment with Dr Hanna to see if he can help with your problem it may be to your benefit. I've seen him work with people who have financial difficulties. Also you can get in touch with the Rsd/CRPS. Association in Connecticut. They also have helped people as well. Google for the phone number and ask to speak to Jim Broatch. He's the president.. He's a very kind man who talked to me a few times when I first got RSD. Good man. He's also on Facebook and there are groups of people who have RSD /CRPS. I really hope you can get in a good group. I personally don't want the stimulator. I have a dear friend who has it and she has gone through a few problems with it. The leads came off and she had to have the surgery again. I wish you luck with it and I hope it helps you. God bless ✌ ❤🌟 Mary Edwards
Liked by rsnowflake
Thank you so much for your kind words and helpful advice. I'll definitely try to contact your doctor and the rsd,/crps association in Connecticut. Please check in any time…I know many people don't know what this horrible disease is like. I had 2 c a neurologist, two psychiatrists, and rheumatologist and MY spinal surgeon and pain management specialist. To get the stimulator approved. But I have a 16 year old daughter who needs my 2b as healthy as I can. That's why I chose to get the spinal stimulator, I was like a pain level 10 every day, it saved my hand and got an 80% improvement in pain. God bless
Liked by rsnowflake, mary121658
@overwhelmed, I am so very sorry you are suffering.
I don't think @janetpr meant it is "all in your head" as a "psychological" issue but rather the "physiological" process that takes place in the body with CRPS. Our brain is amazing but also complex, it drives the central nervous system throughout our entire body.
In CRPS, the brain makes pathways to the effected are of our body that is out of proportion to the injury which occurred. The new pathway send pain signals, in which we stop using that area, then glia cells (and free radicals) build up and the process continues, the brain keeps sending signals. By using the area, it is painful but can build a new pathway and tell the painful pathway there is no injury and try to reverse. In explaining it to others, I sometimes refer to phantom limb pain. The pain is very real, the brain is indeed sending pain signals, but out of proportion to what actually exists.
I am very open to both traditional, alternative, functional medicine and research the underlying scientific & physiologica basis for any treatment.
Nice lecture from Dr. Chopra at CRPS /RSD Conference.
My preteen daughter was diagnosed with CRPS (foot) and after weeks of sifting through medical research, abtracts, watching lectures and presentations, speaking with others I've personally come to conclusion for treating her. Build new pathways to the brain by desensitizing "moving & using" her foot. Relearning to walk again. It is a slow process, takes time and perseverance. It is also painful for her but she is improving. In fact, on days she isn't moving, the pain seems to be worse at night.
I am corresponding with other patients and parents of children w CRPS & CRPS patients all over the country and the world. Several are treating their children at Pediatric Pain Rehab Programs such as Boston's Children's, Nemours Orlando, Seattle Children's, Philly CHOP, etc. which 4-5 week daily programs 9-4p, outpatient. I believe there is a program for adults at Mayo. Still a long way to go and teaching her how to manage her disease and equipping her with tools in the future.
She is in outpatient physical therapy, PT at home ~ off crutches now but walking tip toe on her effected foot. Still painful but a little less and gaining function.
Not for everyone, but many patients respond to this treatment, retraining the brain and makes a new pathway to the brain regarding pain response.
Kind Regards.
Fascinating! Hypnosis is a way to re-process how we experience pain. It is a powerful intervention. I use some of what another hypnotist uses. A process of giving the "pain" ( I prefer discomfort) a number ; then hypnotically a color and shape. Then back and forth imagine color is lighter; shape is softening and discomfort is decreasing. Then color is fading; shape is much softer; discomfort is fading…back and forth. Re-processing pain… works. Best, Jan
Liked by rwinney
@rsnowflake
Hey overwhelmed, I'm renee. Have crps from a broken ankle. Everything went crazy after that. Got diagnosed early. Had tons of nerve blockers and was on gabapentin. Nothing worked I took my life back by getting a spinal stimulator. I had almost lost my hand. When I got the implant my hand and arm were back 2 normal. Unfortunately it jumped to my other arm and my spine. I've had no problem with the implant I got it April 2018. And medical marijuana helps with keeping my stress down. But weather changes also effect my pain immediately. I keep a daily journal to c what helps and which days r bad.