RSD help needed.
 

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 So much info out there is just plain out of date and it is hard to find reputable sources.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, :hug:

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

Sent from my XT1028 using Tapatalk

A warm hello to you as well. :hug: 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...

welcome sandy. i am sorry you have rsd but you found a great place for support and friendship. everyone here is so nice. i have had rsd for almost five years and it has spread to all of my limbs, stomach, mouth and head. i don't have it internally yet though i have alot of bone loss due to it and some trouble with my heart which i think is due to the rsd but the drs aren't sure. (but i think it's because of the rsd.)

i manage my pain by taking pain meds and gabapentin that my dr prescribes to me. i have extra pain meds for breakthru pain meds from my dr too. i also take advil sometimes and use voltaren gel that my dr prescribes for breakthru pain too.

i also take warm epsom salt baths and use a heating pad to help manage my pain. and a good cup of chamomile tea and cookies, soft jammies and a good comedy on tv help distract me from my pain a little.

i also do mild stretches that my pt prescribed for me to do at home like the putty ball and picking up marbles and typing a little to try to keep my initial rsd hand from atrophying any more then it has.

i hope that you are able to ease your rsd pain. a good pm dr can help alot to manage you rsd pain.

i am sending soft hugs your way. take care.

Hey....do the doctors say your bone loss due to rsd? I think my crps is the cause of my dissolving teeth (I did have a bone break as well), but I am trying to explain this to my doctors. But the studies aren't really there with rsd and teeth.......

i've had rsd for almost five years and have had dental problems for almost five years too. i first thought it was the meds causing the dry mouth which caused my teeth to crumble and hurt. but meds don't cause massive infections in the gums and roots of the teeth almost overnight.

my pm dr believes that rsd can spread to the mouth and that it can cause infections because of our weakened immune systems due to rsd. he also believes that dentists who want to try to "save" the teeth just make things worse by putting us through painful and expensive root canals that don't help.

i still had pain in the five teeth i've had root canals in because rsd makes the nerves in our mouth hypersensitive to pain just like it does to the rest of our body, which make root canals unsuccessful. the only thing that helped to alleviate my dental pain was to have my teeth pulled. some drs don't want to do this because they think having the teeth pulled will cause rsd to spread. but in my case it was the root canals that caused the spread.

i'm not a dr but if i were you i would ask your pm dr if he will write you a referral to a dentist and oral surgeon who will do whatever it takes to alleviate your dental pain. a note from your pm dr saying it's okay to pull teeth (if that's what you want) then to do root canals because root canals can cause spread and are painful and expensive and at least for do not work.

but since everyone is different with rsd, you have to decide what is best for you. my oral surgeon said she had another rsd patient who had the same problem so i'm convinced rsd can spread to the mouth.

i chew on one side of my mouth where there are more teeth too because it hurts to chew on "just gums". and i can't get dental implants because that could cause a chance of more rsd spread. i don't want to take the chance but it's a personal decision.

whatever you decide to do with your teeth, just make sure you don't allow any dr to tell you the pain is all in your head. because some may think that and they are wrong. a good dr like my pm dr knows they are wrong. and i know they are wrong because i am the one still feeling the pain.

i hope you don't have anymore dental problems and that you will be able to feel less pain in your mouth.
sending healing thoughts and soft hugs your way.

p.s. if you do have to have a dental work done, i've found that having lots of novacaine along with lots of laughing gas helps minimize the pain during your dental procedure. of course make sure the dr agrees. it helps to minimize my dental pain more when i'm having a cavity filled, etc.

p.s.s. rsd can also cause bone loss in other areas of the body. i have had bone loss in my hips and now have osteopnia. and my original rsd hand has atrophed a bit and has had bone loss. it is acually smaller then my other hand now. i get a bone density test every year to check for bone loss. if you do have bone loss taking certain vitamins like vitamin D can help.

Thank you so much everyone.

It took me a minute to get back online due to the pain. I have a lot of pain with sound, touch, lights, it all hurts a lot of burning on the lower half of my body.

I don't know if that means i have full body or its only in the lower half of my body? I have a Doctor now who i hope will shed light on this disorder.

I will look up LDN however I don't know what that is. I've done a wee bit of research on Ketamine infusions, but i still need more information to understand what it is, how it works, and the process. I will also view that video if its still on Ytube.

I'm still trying to process what RSD is... More the why than anything else. I would really love to gain more control over my daily functions.

I'm very thankful for all the information everyone. gentle :hug:.

Please Please forgive me if i sound down in the dumps because thats not who i am I still have a lot hope :) just going through a lot.

Oh if only I knew why! That is just a hard one. Don't worry about sounding down. We all do sometimes.

LDN is low dose naltrexone. Dr Chopra discusses it in the video. There are a lot of studies on ketamine Pubmed.

I have a thread called "Getting ketamine infusion" where I have been documenting my infusions if you are interested in reading a "single case study" with a slant on patient experience.

I am glad you found a doctor!

:hug:

My CRPS/RSD has recently spread to my entire body and if you ever want to talk I'm here :)

SWS,
Wishing you a late welcome. I was not on the forum much when you came on. Please don't apologize for your mood. We get it! There is no way that I have found to have this illness and not be down, depressed, confused, scared, etc. Luckily there are room for other emotions too, but probably not when you are suffering as much as you are. If you haven't read the sticky threads on lifesavers and success stories I strongly recommend them. They offered me many great suggestions and inspiration when I first joined. Again welcome, mac