Did Your Search for Initial Help for CRPS Go Something Like Mine?

CHAPTER 1 Letter to Dr.
My experience
re: Tarsal Tunnel/CRPS Type 2 Diagnosis
CRPS I (RSD)
CRPS II (Causalgia)
Peripheral POLYNEUROPATHY - The effect of this Nerve Damage/Disease, is to cause symptoms in more than one part of the body, often symmetrically on left and right sides. As for any neuropathy, the chief symptoms include motor symptoms such as weakness or clumsiness of movement; and sensory symptoms such as unusual or unpleasant sensations such as tingling or burning; reduced ability to feel sensations such as texture or temperature, and impaired balance when standing or walking. In many polyneuropathies, these symptoms occur first and most severely in the feet. Autonomic symptoms also may occur, such as dizziness on standing up, erectile dysfunction, and difficulty controlling urination. In the 3 types of polyneuropathy, many nerve cells in various parts of the body are affected, without regard to the nerve through which they pass; not all nerve cells are affected in any particular case.
3/1/17
Dr. T,
I am asking for your help today in order to bring a certain clarity and focus, to the
current painful condition that I now find myself in. I submit this letter to you, in hopes that it will help to put a name to this long process of pain/suffering that has brought me back to you. I understand that you treat CRPS in your practice and Dr. L has referred me to you in the past for your Podiatry expertise. Any further recovery for me will depend on the combined efforts of Pain, Mental and Physical Therapy experts who can properly identify the Pain Cycle/Co-morbidity Loop that I continue to find myself battling. Thank you again for agreeing to meet with me to discuss the possibility of CRPS Type 2 (Causalgia), in my life.
9/4/1984 Neuromas Bilaterally - 2009 RLS - 2016 Tarsal Tunnel/Peroneal Nerve Damage
From 2009 till today, I have NOT been able to Sleep, due to the vicious/evil diseases/damages that occur in both legs/feet/ankles. As soon as I lay down, recline or try to sleep (horizontal/prone), Pain will start and will keep me from falling asleep - I am then forced to sit or walk/pace in order to disperse some of the pain - then try again and again and again to go to sleep. If I'm lucky enough to pass out/fall asleep, Pain shooting through my legs/ankles/feet will wake me and restart the Insomnia Cycle all over and over, again and again....
The Worst Pain exploded following both of my foot/ankle/leg surgeries. I have NEVER experienced this much Pain. My Nerve Pain spiked in August of 2016 following my second surgery. The pain in both feet quickly became much more than I can endure. My feet feel like they are "On Fire" burning with a “pins and needles” sensation, and as if someone is squeezing my feet so hard that they will explode. The pain PEAKS when I am in a prone or elevated leg position. The neuromas in both feet are activated like painful marbles, my Big Toes are both a major pain source, Both Heels - were severely damaged by the Tarsal Tunnel surgeries. Noth heel feel like burning ten inch railroad spikes are driven up through my bones/heels. (Tennis ball size) spikes of intense pain - all when standing or walking. Tops of feet, along front, burn. I recently completed the McGill pain scale Test and scored a whopping 105 - with a score of 78 being a guide for excessive pain. My foot and ankle history includes arthritis, fractures, sprains/strains, and Morton's Neuromas'. I have had an MRI, EMG/NCV, multiple Blood Tests, Chest Xray, Inflammation Levels, Testosterone injections and I have promptly attended dozens of Dr. appointments traveling thousands of miles. I was hospitalized/admitted Jan. 31, 2017 - 2/2/17 for Chronic Pain/Depression/Anxiety at a Behavioral Health Hospital for pain and contemplating suicide.
Thank you for seeing me today and for your prior help in January of 2016, when you properly diagnosed Tarsal Tunnel bilaterally for me and Dr. L. You advised that an EMG/NCV be performed and then to follow with a visit with Neurologist - Dr. H.
I had Dr L add Peroneal Nerve damage in both ankles to the EMG/NVC order based on my complaints of Peripheral Neuropathy and Peroneal Nerve problems. Dr. W performed the EMG/NCV Nerve Tests and found Peroneal Nerve Damage but, only "Possible Tarsal Tunnel" as he could get no response from several nerves in the Tarsal Tunnel Test. I understand that this is fairly common for TTS.
NO TESTS ON METATARSAL NEUROMAS. Neurologist Dr. H recommended Surgery during our appointment.
Current Medications include Lisinopril, Celexa/Citalopram and Tylenol. I receive regular Testosterone shots from Dr. L for Hypogonadism and, to help body my repair. I have been on an Antidepressant since my Postal Service Injury on 9/4/1984. In 1992, I was ordered off Motrin/NSAIDS out of Physicians (Dr. B) concerns for my kidneys. I have concerns over Tylenol use - it is the only pain reliever that I can use. My concern is for liver damage if I have to continue. Dr. L continues to monitor my condition closely.
IMPORTANT; ANY med that makes me tired/sleepy, sleep aids like ambien, Tylenol PM or Melatonin - will NOT keep the Pain from waking me and making things worse as now I'm Double Tired and unable to get back to sleep. Very dangerous as I have to walk to recover from the intense pain..fall.
Dr. S (Oncology) also ordered Blood Tests/Chest Xray and ruled out RA, Fibromyalgia and Inflammation. Xray revealed Thoracic DISH and Rib Fracture from a Postal Service Dog Attack Incident/Injury from 1986.
I regularly use topical analgesics lidocaine, but it does not reduce hypersensitivity. Capsaicin severely aggravates the nerve pain when applied.