Hello.

A warm hello to everyone I'm new to neurotalk and I need help and support of possible.

Is it possible to lower full body RSD pain? I've read some post warning to get help before RSD reaches full body spread of RSD. Is all hope lost after that point?
Anyone here dealing with full body RSD? I have lots of questions I am just now learning about this disease after 17 years so everything is very new to me and there is alot of confusion.

Hello and Welcome,

This is a great place for sharing and support with a truly wonderful bunch of members. I hope we can help you with what you need.

Have you been dealing with CRPS for 17 years? Did I understand that correctly?
Have you had any treatment?

Early recognition and treatment of CRPS is important but I do not ever want to be one who says all hope is lost after that. We have several members who are full body who might see your post and chime in. Medical management at any stage or location is important for your overall comfort and wellbeing. Do you have a doctor (pain management, neurologist or physical medicine) taking care of you? Finding a specialist who knows and understands this illness is a huge victory.

Many of us recommend a video by Dr. Pradeep Chopra called "CRPS Diagnosis and Management" which is packed with info and tips, treatments and supplements. It is non-doomsday and rational. He is a highly regarded and exceptionally compassionate doctor. So much info out there is just plain out of date and it is hard to find reputable sources.
http://youtube.com/watch?v=s3LKhOZ8mAM

Sorry if I am telling you things you already know...it sounded from your post like you are just starting out on getting information. Please come see us to share, let us know how you are doing or get a virtual hug.

Sending healing love,

Hi sandalwoodsprings, I have full body RSD. I would be happy to answer any questions to the best of my ability.

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A warm hello to you as well. I really can not tell you if you will be able to rid all body pain associated with full body CRPS/RSD, but yes, it can be reduced. I do not have full body CRPS/RSD but since I initially started showing symptoms in my right ankle and foot in January of this year it has aggressively spread to include both legs and feet, both arms and hands, my shoulders, upper back, neck and even mild symptoms in the left side of my face. On any given day, I do experience pain, primarily in my right leg but also in my left arm. Quite often I do experience pain in all of the other areas mentioned, although with the medication that I am currently on, it usually is not as severe as my leg and arm.

It sounds as if you have dealt with this for quit some time. Just wondering if you have sought any medical attention for this in the past. I would suggest that as your first step, try to seek out the medical attention that you need. Try your old doctors, if you trust them, or seek out new ones if you don't or they are no longer reachable. There are quite a few newer medical treatment that have come out in the past 17 years. Perhaps there is something new out there that will work for you.

If you haven't tried Low Dose Naltrexone please, please try it. You have nothing to lose and everything to gain. I learned about LDN years ago when I had severe Ménière's attacks, but I was afraid to try it, instead I lost the hearing in my right ear. Then I was afraid to get it for my mother who had Parkinson's, because I was afraid that someone would say I was experimenting on a helpless old lady, instead I lost years of my life caring for her. Finally I was afraid to get it for CRPS, but I overcame that fear when the pain and misery got so bad I was terrified that I was going to be a crazy, recluse for the rest of my life. I was also diagnosed with an incidental brain anuerysm and the totality of what was ahead made me realize I no choice but to try LDN.

LDN has turned my life around. The pain muted. My mood changed and some energy returned. Within a short time after taking it I improved.

Dr.Pradeep Chopra, mentioned by Littlepaw, strongly recommends LDN in his video. Please watch it.

I have had full body and internal RSD for 8 years now, there are chances of lowering the pain. I was to the point I was bed ridden, all limbs were in dystonia, I was in so much pain my mom couldn't even kiss my forehead and just the sound of the machines going down the hall in the hospital that my body would start shaking even when I was sleeping, and I was being hospitalized every 1-2 weeks. I finally got a doctor to help find a med combination that helped me, starting with ketamine infusions. And at home something that really helps is the ketamine nasal spray and lozanges. It is possible, I don't know about full remission.
Anything I can do to help I will

Sam

Hi sandy,
Welcome to our family.
I hope you find friendship and answers.
I know I do...