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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.
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CHAPTER 2
Post Surgery - Hydrocodone was prescribed by surgeon Dr. P for 3 prescriptions and then ORDERED Stopped as per his Personal Physician Opioid Policy, re CDC. Both Dr. P and Dr. L are unable to prescribe narcotics, BUT both support my continued Opioid use, to try to break my pain cycle, which is the cause of my Insomnia. I have also signed a Medication Contract with Dr. C for opioid use which he did not sign..
As Medicare documents all my physician visits, test, procedures, diagnosis and referral to new Physicians - Dr. L sent me to Orthopedic Surgeon Dr. H (Bloomington) for surgery referral. Dr. H admitted that he did not have the skills for Nerve Compression Surgery/Tarsal Tunnel. I FEEL HE DID NOT WANT TO ATTEMPT SURGERIES DUE TO high probability of failures - He directed me to Dr. P to perform the Necessary Procedures - Bloomington.
Dr. P diagnosed me with Tarsal Tunnel in both ankles and Progressive Peroneal Nerve Disease/Damage in both Ankles/Legs. Dr. P counseled me that there would be no guarantees as to the final outcome of the surgical procedures and, he also acknowledged that I am being treated for Neuromas, RLS, depression, arthritis, insomnia, chronic pain, high blood pressure, Peripheral Neuropathy, medication problems (Requip/Gabapentin/Tramadol), and, that I am a mild smoker. He explained that I should expect a nerve recovery rate of just less than an inch per month - smoking slows recovery. I smoke ONLY because of the stress and pain caused by my feet/ankles/legs/wrists/hand/fingers and knees. I was/am totally unprepared for the painful outcome that has resulted in the WORST PAIN of my life. I have long been diagnosed with acute/chronic foot pain due to Neuromas in both balls of my feet, directly as a result of an Injury (Postal Service DOL), while engaged in my duties as a US Postal Service Mail Carrier. Injury date was 33 years ago on Tuesday, September 4, 1984.
In October of 2009 I was granted a SSDI disability due to my Postal Service Neuromas injury (9/4/84) along with a disability for Major/Chronic Depression. In January of 2013, I was activated on MEDICARE. I am currently on SSDI and I will soon transfer to Regular Social Security next year.
In June of 2016, I signed a Surgical Contract with Dr. P in which he acknowledged my treatment of Depression. Dr. Powers advised a period of 6 to 12 mths (now longer) for Recovery. I expected Dr. Powers to provide adequate Pre/Post Op care for any resulting complications. I feel that his Post Op care was lacking and now - non existent. I completed his Post Surgery Instructions/Therapy successfully. Dr. P insisted he had cured my nerve damage and ordered me to walk, walk walk, then he declined to sign form for a parking Handicap Placard for me. I left Dr. P care with a much larger problem that I came to him with, and, I feel that is simply wrong for him to turn his back on me - abandon/neglect me. He did agree to research possible medication providers for me. To possibly have lifelong consequences including chronic and excruciating pain, the likes of which no person should have to endure, is morally reprehensible on the part of any physician who denies access to ANY treatment for Peripheral Poly/Neuropathy, CRPS Type 2 (Causalgia), Insomnia or Mental Health. All services that are Important to recovery from my surgeries/ CRPS Type 2. I believe that my complaints should be taken seriously and that "Time is/was of the Essence" in providing appropriate care. Dr. L, Nurse N (and his staff) have guided me appropriately through this most challenging Health Plan, his office has documented my care properly and, I acknowledge that Dr. L explained on our very First visit (2014) that he does not/will not prescribe narcotics to me for chronic pain due facility rules/laws. I agreed to accept his direction and care and I appreciate the efforts he has made to guide me through this difficult time.
I have kept my mind busy to counteract the effects of this pain. I believe that I have a sound mind but am constantly challenged from the excessive pain, psychological damage and lack of sleep. During the last 3 years, I have systematically designed and developed 5 Professional Digital Media Studios. I hope to make a few extra bucks, when I feel better, with a business online. If I can just get some deep sleep.....
CHAPTER 3
As of today, this condition remains untreated. No pain meds, no physical therapy no further tests or procedures except for a possible invasive Spinal Column Implant. It feels like my muscles are wasting and a contracting in my hands, fingers and feet, as my muscles seem to tighten and tingle - it is as if my balls of feet and toes are becoming petrified. After Surgery, my feet became ULTRA Hypersensitive to Light Touch, Air/Water (Cold/Hot), Weather, any type of contact with - cloth, socks, Capsaicin ointment or massage. I don't know if I am suffering from a pre surgery neuroma injury, post surgery or reaction in my central nervous system/sympathetic nervous system.
I do feel that this disease has now Spread to both wrists, hands, fingers and knees, and I also experienced trigger finger events in both thumbs - all AFTER my foot surgeries. I am afraid of this "condition" spreading further and, afraid of the prospect of a lifetime of dealing with this, apparent, CRPS Type 2 pain .(Causalgia) What matters to me most is just how severe the pain is, how long it might last, and just how much that it interferes with my Everyday Life activities. I also experience dizziness, nausea, vomiting, depression, anxiety, falls, PTSD and panic - regularly.
The pain, as well as the mental, PSYCHOLOGICAL and emotional trauma that I experience, is something no person should EVER have to experience.
I have been treated for chronic pain induced Insomnia since 2009 FOR restless leg syndrome. The pain is at it worst when my feet are elevated or when I try to sleep. Since the beginning of June 2016, I have only slept for 3 hours straight - ONCE. I average 2-3 hours of Broken Sleep (if I'm lucky) on a Daily Basis since 2013.
The pain, as well as the mental and emotional trauma, sent me to the Hospital ER Unit on Jan 31,2017 at 8 am. I I traveled by ambulance and was admitted to the Psychiatric Ward, for Suicidal Thoughts, Anxiety, Chronic Pain and Depression at 10 pm that evening. Dr. M (my appointed Psychiatrist), sent me home (Feb 2nd) stating that she does Not/Will Not, Treat ANY patients for Pain and, that the Psychiatric Ward - Does Not, Treat Pain Patients. No Alternative care was discussed with me. After being delivered in an Ambulance Gurney, I was forced to walk out of the facility painfully, as the Release Nurse did not provide me a wheelchair.
However, Dr. M THEN Diagnosed me with sleep Apnea for no reason and DOCUMENTED that it is Most Essential to my Physical Recovery (ANY RECOVERY) to address my Insomnia, and, that MY vicious cycle of Chronic Foot pain, Depression and Insomnia MUST END asap! COMORBIDITY LOOP ... Dr. L 2014 to present date.
Conflicting opinions have arisen as PHYSICIANS struggle to understand CRPS Type 1 or Type 2. Dr. P states that I do Not have CRPS but, he does not treat for this. Dr. P tells me that he cured ne and the pain is from my Nerves Healing . I Then made an appointment at Health Pain Clinic and SPECIALIST Dr. G spent a whole appointment telling me I have RSD and that Dr. P ACTUALLY told him, that I do HAVE RSD! Dr. G told me that my pain is due to the Nerves in my feet DYING, and that My Feet Do NOT have The APPEARANCE of CRPS Type 1 = RSD, and later wrote to Dr. Lomasney that he was more comfortable with the diagnosis of Peripheral Neuropathy. Dr. G, took no notes, left me for 35 minutes to take a personal phone call and then said No Meds, No Epidural, No Nerve/Sympathetic Blocks and no further interest in my condition. He was laughing when he told me that NO DOCTOR will ever prescribe me an opioid for my pain. Dr. G did comment that a Dr. C might like to perform a Spinal Cord Implant on me - and that he would speak directly with Dr. C. Dr. G never followed up on that conversation with Dr. C and I instead, arranged an appointment for myself with Dr. C.
At my appointment with Dr. C (Bloomington), he dismissed my complaints of Pain medication stating that he already had too many Pain Patients and would not be willing to treat me for Insomnia, Depression. Causalgia, is associated with Nerve Damage/Trauma). CRPS Type 2 is also found in Type 1 patients. Dr. C advised me to sign up for his Spinal Column Implant PROGRAM. He refused to discuss the cost of the Surgery and yearly cost of care or a psychological evaluation. He did not discuss the negative aspects of this surgery with me and only highlighted the potential benefits, Gave me a DVD and and encouraged me to make up my mind based on his DVD education disk, and his expertise. I have tried my best to educate myself on All Aspects of my condition. In 2014 I started smoking (minimal) as my life cycled out of control. I plan to end my smoking just as soon as I can find help to minimize my Pain/Insomnia/Depressive Cycle. (Cigarette smoking can affect circulation, increasing the risk of foot problems and other neuropathy complications.)
CHAPTER 4
Thank you for reading thus far and, I am ready to provide any additional documentation in my History Database.
Here are just some of the physical activities that I enjoyed, prior to my surgeries, that I can no longer perform adequately:
Personal daily hygiene
Caring for my 3 story Cabin and 200 ft of Prime lakefront property
Stairs / 40 stair steps from my 3rd floor master Bdrm down to Boat Dock on lake
Fish/Boat
35 pound weight loss
Cook/Eat/Diet
Travel / Nausea, Vomit
Shopping / require electric cart
Clean/Maintain house, yard
Lawn care
Handle Finances
Intimate Relationship
Visit/Travel with friends or family (New Zealand)
Drive Car
Play any of my many musical instruments
Walks with family/friends/pets
Social Interaction with people
Sleep/Dream
Short Term Memory
Pick up small objects with fingers
Keep from falling
This was 8 years ago and my CRPS Type 2 has spread to Brain, Organs and totally destroyed my relationship and Quality of Life. MY LIFE IS ROTTING AWAY JUST LIKE MY CAR DID AND MY LAKE HOUSE IS, DUE TO TOTAL LOSS OF CONTROL OF MY LIFE. Not ONE DOCTOR OR PAIN SPECIALIST HAS TRIED TO HELP ME AS CRPS TYPE 2 HAS NO CURE, NO TREATMENT AND NO APPROVED USE OF OPIOIDS FOR PAIN CONTROL due to laws passed in the War Against Pain patients. The CDC started it all and Pain Patients will Never REGAIN THEIR RIGHTS to Proper Pain Care until the Government repeals laws passed to discriminate against pain patients and were only designed to keep Physicians in their jobs and OUT OF JAIL.
The Nickname for CRPS IS - the Suicide Disease - IS CURRENTLY LISTED BY THE McGILL Pain Scale lists it as the MOST PAINFUL CHRONIC DISEASE EVER KNOWN TO HUMAN BEINGS... 8 YEARS I HAVE SUFFERED. HOW LONG CAN I take this before I TAKE MY OWN life?
I am so saddened upon reading your story. You are right, no one will ever understand the pain that we who suffer from severe, chronic pain are going through(am I making any sense?). I have been fighting chronic pain for eight years as well. My pain originated from a ski fall. I had the pain under decent control up to 2021 when it all came flooding back. Even then I was able to perform most of my normal activities with some exceptions. We moved to another state last year. I fought the move because I had lived in our home for almost fifty years. It turned out to be a good thing. My pain level is sometimes off the chart. Even in the last nine months I am experiencing many new symptoms. What is so discouraging to me is going into my pain docs office with all this pain, and he just sits there and tells me to contact my PCP. No empathy at all. I am nowhere near your condition but am afraid that I may be heading in that direction. I'm not afraid of passing away, but I don't want to burden my wife with a shell of a man who cannot do anything for himself. I can only pray that God will deliver you form your pain according to His perfect will. Try to have a Merry Christmas.
@creyn51, welcome. I merged your 4 discussions into one discussion so fellow CRPS patients can follow your story in one place.
It sounds like you might be looking for medical professional advice. If you are looking for a second opinion from Mayo Clinic, you can submit a request for an appointment http://mayocl.in/1mtmR63
I can't begin to imagine suffering from unmitigated pain for 8 years. I wonder if the Pain Rehabilitation program at Mayo Clinic or elsewhere might be an option for you?
have you looked into calmare/scrambler therapy? for some it has been miraculous. it is non invasive, non addictive, pain free, and the expense won't break the bank. there are several hospitals, military bases, va's, and private docs/chiros that have this device.
Calmare or Scrambler Therapy is a very remarkable non-invasive way in treating chronic neuropathic pain with NO side effects. The Mayo Clinic has conducted four studies while Johns Hopkins has done five studies and recently had an abstract published in Journal of Hospice and Palliative Medicine showing an amazing 95% reduction in pain on the average for patients with PHN with NO side effects.. http://www.ncbi.nlm.nih.gov/pubmed/23838448?dopt=Abstract
The Mayo Clinic Nov. Health Letter featured Calmare. (see attachment) In addition, The Foundation For Peripheral Neuropathy put out a positive report on Calmare. The article was a collaboration between Johns Hopkins and The Mayo Clinic. https://www.foundationforpn.org/?s=scrambler+therapy :
The MCA-5A treatment is FDA cleared and creates a series of complex artificial neuronal messages that are transmitted to the brain via the body's dermatome pathways. Five independent channels are available to transmit the artificial messages via surface electrodes attached to the skin in the dermatome region of the patient's pain.
The perception of pain during the treatment is inhibited by artificial messages of "no pain" that replace those of pain. You know it's working because during the therapy sessions, when proper electrode placement is attained, patients typically report zero pain.
Calmare 52 patient study.pdf
Calmare New england Journal of Medicine.pdf
After a series of treatments, the patient may experience significant pain reduction for an extended period of time. The duration of time depends upon the underlying cause and intensity of the pain and other factors. It is usually between 3 to 6 months. After which the patients would receive a booster treatment of 1 to 3 treatments to achieve zero pain again.
Here is a recent PBS story on Calmare: https://calmaretherapynj.com/dr-michael-cooney-featured-on-pbs-pain-management-program/
The Mayo Clinic recently released a video about treating CIPN with Calmare. http://sharing.mayoclinic.org/2015/02/19/breaking-away-from-the-pain-with-the-help-of-the-scrambler/
Here is an article published in Pain Medicine News.
http://www.painmedicinenews.com/Complementary-and-Alternative/Article/08-16/Scrambler-Therapy-Found-Promising-in-Pilot-Study/37477
MD Anderson produced this video about Calmare:
https://www.mdanderson.org/publications/cancer-newsline/spring-2017/pain-management-with-scrambler.html?intcmp=Highlights5_ScramblerTherapyCancerPain
.
The Mayo Clinic is currently conducting several studies with Calmare. They published an abstract in May 2014 at ASCO showing both a reduction in pain and durability of the treatment 10 weeks later. https://meetinglibrary.asco.org/record/93592/abstract
The Massey Cancer Center announced the completion of a back study with a sham device. The study showed a significant difference in pain reduction between the Calmare patients and those treated with the sham device.http://www.clinicaltrials.gov/ct2/show/results/NCT01896687?term=calmare&rank=3 (This study shows Calmare works for back pain and is not a placebo)
There are multiple studies that have been done by both The Mayo Clinic and Johns Hopkins (see attachments)
RSDs.org talks about CRPS and Calmare: http://rsds.org/calmare-scrambler-therapy-crps/
Dr. Thomas Smith from Johns Hopkins talks about Calmare: http://nationalpainreport.com/researcher-says-calmare-scrambler-provides-pain-relief-8821495.html
The US military has purchased 20 machines for several U.S. military medical facilities in the U.S. and overseas including The VA, The US Army, The US Air Force and The US Navy.
Calmare is currently in several hospitals and cancer centers including MD Anderson, The Mayo Clinic in Rochester, Minn, Johns Hopkins, Dignity Health in Phoenix, Providence Regional Cancer Partnership, Seattle, Regional Health in Rapid City, Mercy Hospital in St. Louis, Walter Reed in Baltimore, Andrews Air Force Hospital in Washington D.C., Stony Brook University Medical Center, New York, The Hartford Hospital in Connecticut, The Medical University in South Carolina and The City of Hope in Los Angeles. And recently UCSF.
Here are some links to media coverage about Calmare , also called Scrambler Therapy: (including the" Doctors Show")
PBS: https://calmaretherapynj.com/dr-michael-cooney-featured-on-pbs-pain-management-program/
https://www.ksl.com/article/25506361/fda-approved-device-offers-non-drug-option-for-pain
http://www.ksl.com/?nid=148&sid=35487450
https://www.ksl.com/article/13770113/teen-hit-by-lightning-trying-out-new-device-to-deal-with-pain
https://www.ksl.com/article/16580318/medical-device-gives-new-life-to-utah-boy
https://www.youtube.com/watch?v=lsk6vTU9TcM (Doctors Show)
http://sharing.mayoclinic.org/2015/02/19/breaking-away-from-the-pain-with-the-help-of-the-scrambler
https://www.facebook.com/1737083399933677/videos/1766148400360510/
Here are some Calmare websites:
http://www.calmarett.com
http://www.cprcenters.com
https://calmaretherapynj.com
Conditions treated by Calmare:
https://cprcenters.com/conditions-treated
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Your story and heisenberg34’s story are so disheartening as they highlight the recurring theme in so many stories: doctors who don’t seem to care and no or little access to drugs that might help for patients who have struggled for years with no relief. I don’t have any answers but I pray for solutions. Merry Christmas to you all!
Check out The Spero Clinic in Fayetteville, Arkansas. I think they can help you.
Calmare/scrambler therapy has been around for over a decade. Not for me and in excess of $3000 and travel for full therapy.
Not an option. I am waiting for a Trial on Opioids when they become a reality again.