Shut out of medical community
 

Hi, I have been here before a long time ago. I have full body RSD. I have had 16 high dose ketamine infusions and 12 nerve blocks. I also am pretty sure I have PTSD caused by the VA, doctors and insurance companies. I have been on oral, nasal and topical ketamine for over 2 years and opiates give me hyperaglesia. I have no PC and no PM. I have been risk managed out of every doctors office due to falsified medical records and reduced to only mental health doctors, which honestly have been the only real support as limited as they are with meds.
I recently went to mexico and bought a bunch of 2% injectable lidocaine I stick in the back of my neck and use for a nasal spray because my face and eyes burn so bad. I have a bad cervical spine which I am sure is the mediator of my back, arms, head and face burning.
I am really afraid of not having meds or a doctor. Not that I ever found a PC who understands my symptoms are neuro and not like the normal causes of bladder, pelvic, organ, muscle and bone pain and ANS instability.
The medical community is a 15 minute revolving door, thousands of dollars in useless test and the DEA underground investigators. God forbid ketamine has a very bad rap and is so much safer than opiates, but when they see your med list they freak and you're suspect. I'm so tired of chasing help and fighting insurers and doctors for everything. I'm tired of traveling all over the country too. I just want my ketamine scripts and to be able to just show up every couple months to pee in the bottle and let me have some normalcy. Now I am at square one again.

so sorry; the stinging has spread to my eyes and nose so I understand...and wish you well in keeping up the fight....:grouphug:

Good Grief!!
 

GEEZ!!
I'm so sorry you've been through all of this! Knowing the problems my Dad had getting Cancer treatment from the local VA, diagnosed with Stage 4 cancer then given hydro 5's for pain only!!!! I can't imagine trying to have something as complex as Crps treated!! I have experienced being shunned treated as a drug seeker from the hospital that caused the injury that caused my Crps in the first place....
Thankfully, I've been blessed with finally finding a competent, caring, and knowledge doctor. I sincerely pray you find someone who will help you!

Where are you located? I might be able to reccomend somewhere nearby that has doctor who know how to treat Crps, or others here might be able to recommend if I don't!!

Sincerely wishing you relief
Emma

Jerie,

I am sorry to hear you are suffering so much and having so much trouble finding help. I know how hard it is not to just take matters into your own hands but please, please be careful with the lido. Depending on tissue density in the local area where you are "sticking it" the lido can really spread and 2% over time may have neurotoxic effects (5% is used as a one time chemical ablation...) and even 1% is commonly diluted. I know the last thing you want is to cause any more problems. Also be careful of product with epinephrine, causes bad vasoconstriction and potential damage over time. Okay, I've said my Mom thing, can't help it. Take care. I hope you find relief soon.

Sending Healing Love,
Littlepaw :hug:

Were you able to find a good doctor yet? :( This is terrible. Many people are going through this nightmare and it's, in my opinion, abuse of patients!