Teresa Marie's Story
 

Hi my Fellow Friends at Neurotalk,

I have been a visitor to this site for the past few months and so far have just read stories about others struggle to maintain lives with RSD. While I've made a few posts I have not commented much...feeling too new to do anything but get to know the site. Now I feel confident in sharing my story.

In August of 2005 I woke up to pain in my feet. Pain that had no reason to be there. Realizing the pain wasn't going away I began popping ibuprofen to try to reduce it. Not only didn't it go away it got worse! Great! I had to go back to school the next week to prepare for the new year as an 8th gr. Algebra teacher and wondered why this cropped up now when it had the whole summer to come and go. Yikes! By the time I left the cabin to prepare for the new year I could hardly walk for the pain in my feet. I couldn't even hop!

So I started the new year in pain that only increased with each day. I saw my general physician who thought I should see a foot doc. So off to the podiatrist I went. By this time it was almost time for the school year to begin and I was getting desperate. The podiatrist thought I had tarsel tunnel syndrome of the feet/ankles and I would need to have surgery to relieve the pain. Well, having never been a fan of surgery I asked my general physician for a second opinion at Mayo Clinic in Roch, MN.

I spent the next four months going from one specialist to another. Test after test, going from crutches at the beginning of school to a wheelchair by the beginning of November. Nothing made sense and I was going out of my mind with the raw, ragged, stabbing, bed of nails pain that I now had all of the time. I refused any medication until these special doctors at the Mayo Clinic could find a diagnosis. Needing my job and insurance I had to continue to work. it wasn't until I saw one doctor who suggested I focused on getting better and signed a note that said I would be unable to return to work for a few weeks. That was Dec 23, 2011. At the time I didn't know it, but I would not return to work that school year or for the next six either.

After that I finally was able to see the neurologist and the foot and ankle specialist (they were so booked that there was no way I could get in before that time). The neurologist said, "It is not neurologically based" and that I should begin walking again w/o the wheelchair. Ohhh, every footstep was agony. Finally I got in to see that foot and ankle specialist. I rejected the idea to just put a shot into my feet to make them feel better and challenged the doctor to look closer. He thought a few moments and then ordered the test that has changed my life. He ordered a nuclear bone scan of my feet. After the scan I met with the doctor. He came in, showed me the scan results on the computer, and while tracking a point on my foot he explained about the reasons why my foot looked like cottage cheese. Then all at once that point disappeared. The point was not a hole in my bone but a nerve misfiring. The doctor turned to me and said that I had Reflex Sympathetic Dystrophy. His fellow explained the disease to me and said I would be forwarded to the pain specialist for help with this very misunderstood disease. One that is not curable but only managed. My heart fell 10 stories. After that it was years of pain blocks, physical therapy, pain medications, pain clinics, pool therapy and a bunch of tests which included several EMG's. The pain began to migrate. First from the foot to the ankle. Then from the ankle to the knee, and then up to my hips and lastly to my arm/neck and hands.

This June (2011) I found myself confined to my recliner at our lake cabin with my feet up as high as I could get them, my knee up on a pillow and each of my hands on pillows as well. After considering the pain that spiked so high I couldn't rate it I finally came to the conclusion it was time to follow-up with the doctor about a spinal cord stimulator. From there I had the trial implant on June 20. It went so wonderful I cried for an entire day--tears of joy.

Today, almost exactly 6 years to the date I had a Boston Scientific Precision spinal cord stimulator placed into my spine with the battery inserted in my right butt cheek. I'm sitting in my recliner now without pain in my lower half of my body for the first time since that fatal August day. For the next 6 months I will continue to take the Lyrica, Cymbalta, Trazadone, Celebrex and Rinitadine and then at that time I will try to tapper off my medications as much as the pain will allow.

The spinal cord stimulator trial and surgery were not as painful as I thought. However, I realized the trauma it inflicted on my back after the trial was taken out to be considerable. The doctor recommended a minimum of 3 weeks before implanting the final stim. Boy, did he get that right! The two incisions on my back are about 3-1/2 to 4 inches long each--one on the lower part of my spine and the other down about 2 inches and to the right about 4 inches. They should heal like a fine line. No showering for 4 days (Yikes) and no submersing for 4 to 6 weeks.

So, there it is. My story. It only took up 8 inches of typing but a lifetime's worth of agonizing pain. Now I'm onto part 2 of my story; one which has yet to be played out. Thank you for reading about me. Let me know if I can help in any way. ~Teresa Marie

Thank you for Sharing
 

Teresa Marie- It is so good that you shared your story here, taking us on the adventure hoping for part II to be a revelation of the benefit your implant has given as it addresses your pain from RSD. Your open heart and willingness to share is both testimony and inspiration to others who hurt.

May all be well, may all go well with your Boston Sci implant,
Mark56:hug:z

Harrowing stories of individuals surviving hardship and struggle cross our paths on a daily basis. Reflex Sympathetic Dystrophy (RSD)/Complex Regional Pain Syndrome (CRPS) have wholly shattered the lives of my family and my own. No one, including our Nation’s medical community, knows enough about this life altering chronic pain disease. In April 2010 I had my 7th revision shoulder surgery at one of the best orthopedic clinics in the world, The Steadman Clinic, in Vail Colorado. Waking up from that surgery brought a whole new dimension of pain and anguish into my soul.

I was an athlete throughout high school and college. Athleticism was my outlet to escape the erratic home environment I was raised within. I competed in swimming, water polo, and rowed intercollegiate women’s crew. This maturing period of my life, which I refer to as “stupidity while incessantly yearning for an athletic high”, I destroyed my shoulder. One dislocation turned into two; before I knew the severity of my actions my left shoulder was constantly dislocating. Yet the idea of ceasing my athletic activities never occurred to me, or was suggested to me by coaches, trainers, or doctors. I would ask the athletic trainers to tape my shoulder before my races so the tape could operate as my shoulder socket while my arm would dislocate. In my unstable life as a young adult athletics was a place where I was able to find my inner peace. I could not tolerate a threat at the only harmony in my being.

Each occasion I underwent a surgery I would dutifully follow all requirements for immobilization, physical therapy, and rehabilitation. I would work to strengthen my body and was continually given a medical release within a minimum of three months to resume any and all activity. In the course of my athletic stupidity and splendor, four shoulder surgeries were included in my college career. Eventually my brain and ignorant heart caught on to my deteriorating body and I abstained from competing competitively, yet will always remain an athlete at heart. I will never give up the ambition and desire to push my body and mind to their athletic and intellectual potential.

If I were sightless upon awakening from the April shoulder revision surgery, and still to this day, no one could convince me that my arm is not filleted open, bleeding out, hanging worthlessly next to me. The pain I began to experience from that day forward is the most powerful smoldering pain. I am in constant amazement that my body is able to sustain life daily through such constant high levels of pain. I am now fifteen months from that surgery and yet I could count on one hand the number of days where my pain level has been at a point that it does not bring me to my knees with the constant, relentless pain. It persistently feels like searing needles shoving themselves through the veins from my neck to my wrist on my left side.

By May of 2010, I had developed a deep red/purple rash and discoloration on my left shoulder and arm. I would have periods where the arm would feel on fire and then freezing cold covered in goose bumps. The pain was so excruciating I could not drive myself any longer. Most days getting out of bed to move to the couch caused too much pain. I could not sleep for more than a few hours at a time. The pain would alternate between a burning acid running through my veins, to a pain so cold it felt like someone was driving frozen ice pins throughout the inside of my arm. I am tough; at this point, I had under gone seven shoulder surgeries, two C-sections, and an appendectomy. I used to row with my shoulder-dislocated; begging the athletic trainers just to tape it up for one more race. I am not a sissy and continually tolerated unbearable pain levels but in my heart, I knew that something was going terribly wrong in my arm. My doctors and I just did not understand the true nature of the disease behind the pain.
The next few months’ were an assault of constant testing, poking, prodding and an endless stream of doctors shaking their heads at my discolored throbbing limb. It was not until I was begging my orthopedic surgeon to cut my arm off that he began actually looking at me as if something may be going on here that he and I did not understand. The true recognition of the disease began with my miraculous physical therapist, Theresa Bailey. She was the first person who listened to me, as a person, about the drastic effects of the pain in my shoulder. She spent endless hours working with me, and one day said she thought she knew what this may be and asked me to talk with my orthopedic surgeon about the possibility of CRPS.

At my next appointment with my surgeon, I mentioned the possibility of CRPS as suggested by my physical therapist, but the doctor was not convinced and felt we needed to continue ruling out other possibilities. In July of 2010, I allowed my orthopedic surgeon to try an eight surgery to manually unfreeze my shoulder joint under anesthesia and clean up scar tissue in hopes of relieving pain. It was unfortunate but this procedure only made my pain worse. My mother was in the recovery room with me when I woke up from this surgery. Although I do not personally remember, she says I awoke screaming explicit language in atrocious pain. We try to joke about this time now, as horrific as it was, as she also recalls how I would alternate between bouts of screaming and cussing in pain to apologizing to my religious mother and the nursing staff around us. I was fortunate also for the wonderful nurses that encouraged me to cuss to my heart’s content if it helped with the pain. Looking back, I try to find the small humor and joy that different people have brought into my life throughout all the painful procedures I have endured.

During this time, I had to quit working the part time job that I had held onto with dear life since becoming a full time stay at home mom. Being able to leave my house for that one afternoon every other week and speak with adults was pure bliss. It was my mommy haven. The pain and medication made it impossible for me to continue my bi-weekly visits to mommy haven. Instead my world became my bed and my couch while my mother-in-law, Lisa, spent virtually every waking moment of my children’s lives at my home, caring for them and me. I appreciate and love my mother in law dearly. She is a remarkable woman for the amount of love and compassion she has shown me in the past year. She has become like my own mother through this experience. Honestly though no one should have to trade in independence, mommy haven, and feeling like a competent mother and wife, to watching from my prison of pain as someone else does my jobs all day, every day.

The voyage of wandering through the medical community became my new full time job. I found an interventional pain management doctor, an anesthesiologist, which had prior experience with the disease and then received a diagnosis we began the journey of trying to get proper treatment. With my new diagnosis, I went to my primary care as he had also seen me for the rash and pain. He then asked me to find a new primary care doctor, as he did not have the aptitude to deal with a patient with RSD. At the time, I appreciated his honesty in his lack of knowledge about the disease, yet his dumping me simply because I have a disease is heartbreaking. He told me then, “you don’t need a doctor, you need a team.” I then had over 40 doctors verbally tell me they would not take me on as a patient for my primary care needs only, because of the RSD/CRPS diagnosis, their lack of knowledge and understanding of the disease, the lack of treatments, and various other defenses. I would go at length to explain I had separates doctors for my orthopedic needs, pain management needs, and physical therapy. I was only looking for someone to perform my yearly physicals and see me on the off chance that I caught a bug. It required over a month of phone calls before I felt relief by finding an empathetic osteopathic physician who was welcoming of me in his practice.
During this period, I continued working with my physical therapist and interventional pain management doctor in attempts to diminish the fiery pain. With every ounce of fortitude I could muster, I tried and completed every test and procedure the physicians asked of me. Unfortunately everything proved unable to lower my pain level. I tried nerve blocks with mammoth needles being jabbed through the front of my neck, Chinese herbs and acupuncture, physical therapy, aqua therapy, nerve medications, meditation, visualization, counseling, and every ugly pain medication that this country has to offer.
I then read about neruostimulators, or spinal cord stimulators (SCS). It is an electronic paddle implant that a neurosurgeon implants on your spinal column or percutaneous leads that a doctor guides up a patient’s spinal canal. The theory being that the SCS interrupts the pain signal to your brain. Instead of the agonizing neuropathic pain you feel, your brain receives a signal of a tingling sensation on the affected nerves. I was captivated in researching this amazing bionic device, and assuring that I undertook all the mandatory actions and procedures, my insurance required of me to be a candidate for such a procedure. My family finally had a renewed hope that something could help me.

My remarkable orthopedic surgeon referred me to the best neurosurgeon that is versed in neruostimulation. After a two month wait I was able to see him, and finally had a doctor who was educated in neuropathic pain and neruostimulator. He solidified my hope of relief, and offered the chance at getting my families’ lives back. I informed my interventional pain management doctor that I was opting to a neurosurgeon perform the SCS paddle lead procedure, and he could only offer me the percutaneous lead procedure, which I believed with the advice of my neurosurgeon, would have a higher chance of success. My pain management doctor’s offices had a nurse call and inform me that it would be unethical for them to continue my pain management if I was going to allow a different surgeon to perform the SCS procedure. My neurosurgeon’s office was compassionate enough to refer me to a wonderful osteopathic pain management doctor, who has worked with me endlessly in hopes of reducing the pain.

My neurosurgeon provided a miracle on that day. On February 22, 2011 I had the trial stimulator implanted. When it proved to be successful on March 1, 2011 we implanted my final battery pack. As I live six hours from my new doctors on March 2 before leaving the area, my aunt, mother in law and myself went and picked up my medication. The rational women waited in the car while I fresh out of the hospital, on morphine, in a cervical collar went in alone. Looking back this was probably not our brightest moment. While walking out of the pharmacy I was robbed. I was holding my wallet in one hand and my bag of medication in the other. We struggled for a moment and by some miracle I was able to keep a hold of my wallet, the bag ripped though and he ran off with my medication. Now this shouldn’t be humorous in any way, and perhaps the morphine played a factor, but there is nothing quite like seeing your 65 your old mother in law, Lisa, and 58 year old aunt (on a cane), Susan, go chasing after a 6’2” man running down an alley in Denver! I shudder to think if they had actually caught up with him. I consider us all very lucky at the time simply to be unharmed. If only I had grasped the implications that brief interaction would prove to have on my families’ lives.

Before leaving, we dutifully filed our police reports and were able to get my medication replaced. At the time we did not consider the impacts that brief struggle had on my neruostimulator or on my psyche. My only thoughts were to get swiftly out of the big city and back to my husband and kids, who I had not seen for 12 days at this point.
When I returned a week later for my post op check up, and reprogramming, things seemed to be off on where I was feeling my stimulation. My programmer is remarkable and she was able to find a programming combination that for the first time in eleven months brought some minor relief to the pain in my arm. I made an appointment to be back in about four weeks for additional programming and a general surgical check as well as my monthly appointment with my pain management doctor.

The following weeks brought this misplaced joy back into my family’s lives. I was getting about 25% pain reductions from my stimulator, and combined with my medications I was finally able to be Mom again. For the first time in a year, I saw my children play at the park. I sat out in the sunshine just for the sheer joy of feeling the sun on my face. At this time, I finally began to have hope that I was capable of reducing my medications and rescuing my life back from this demon RSD.

This phase of healing also brought various moments of terror for me. My stimulation was not what I thought it should be and seemed to be changing. I was having stimulation in my right arm, which is unaffected from the RSD. The stimulation was so intense in my right arm I was losing feeling in my hand and arm. After various phone calls to my team of doctors and some entertaining neurological testing over speakerphone, my husband and I were back on the twelve-hour round trip journey to see my medical team.

We attempted reprogramming on April 20th. I could immediately see the distress on their faces. They sent me to the hospital to get x-rays. The paddle lead had shifted from the left side of my spinal column more toward the center of my spinal column, most likely during the struggle with the criminal who mugged me. They began explaining that they needed to get back in and move the paddle onto the left side, which is when for the first time I felt my light at the end of the tunnel closing in around me. I just lay my head on the exam table and sobbed. This surgery required cutting through all the muscle in my neck, cutting a piece of bone out of my spinal column, inserting the paddle lead, waking me up to discuss coverage while I’m sliced open on the operating table. It then requires the tunneling of wires and the implantation of a battery pack. This surgery was the hardest thing I had ever gone through in my life, and if we knew each other more intimately, you could better understand the severity of that statement.

I do not know how many moments of stunned disbelief I sat through in that exam room. I heard them say various things about insurance approvals, CT scans needed, and scheduling surgeries six weeks out at this point. My husband, Greg, who is my biggest supporter and advocate, was thankfully being the dutiful patient for us both at that moment. Although I was physically present my brain was somewhere stuck in the world of how I could possibly muster up the strength and courage necessary to make it through this surgery a second time. The six-hour expedition home gave Greg and I plenty of time to discuss how we would handle this surgery. We always try to remember at times like these that we are setting an example for our children always. If we gave up now, what future precedent would we set for our family values? Our only choice was to move forward, so my family began making logistical arrangements, awaiting my insurance approval and surgery date.

Days turned into weeks and still no surgery date was being scheduled. My “team” of doctors all began to have different viewpoints and suggestions about how to best move forward. My neurosurgeon was very hesitant to actually pull out the existing paddle lead and insert a new one further to the left of my spinal column. The surgery is risky and technical. Although no amount of testing could show what was causing the numbness, tingling and pain in my right arm, I knew the paddle lead was hurting me. I feel as if I had to convince my neurosurgeon at that point to perform the procedure that on all logical levels would provide the best results.

On June 7, 2011 I underwent a revision SCS procedure. My neurosurgeon removed the existing paddle lead, which requires scraping scar tissue off the spinal cord. He performed a second laminectomy and reinserted a paddle lead on the left side of my cervical spinal column. The anesthesiologist then woke me up to enable a discussion on where I was feeling the stimulation. I recall bits and pieces of being awake during this time. It is hard not to remember the frustration everyone in the room was feeling after three hours of moving the paddle lead millimeters in different directions and never being able to feel the stimulation in my shoulder on my left arm, the epicenter of my pain.

After a return visit for a surgical checkup and additional programming, we were still unable to cover the area around my left shoulder. We left the appointment with the hope that running the SCS would help overtime. The theory being that eventually the painful nerves in my shoulder would surrender to the sensation. We also agreed to try an alternative approach called the Associated Awareness Technique on my next visit. This technique, developed by physical therapists in Boulder, Colorado, is a non-invasive treatment that helps retrain the way you brain remembers and responds to pain. It also allows your body to release some of the built up pain and get some long sought after relief. Greg and I do our best to keep an open mind to all treatments that may help my RSD. For us a non-invasive option is always the best course, especially considering the ambush of invasive treatments I have endured the past fifteen months.

Within a few hours of leaving that reprogramming appointment, I began to notice an actual physical twitch that would occur with the pulse of the stimulation in my arm. The physical twitch began to set off my RSD into a painful flare up that I cannot control. The next few days I could not get out of bed, the pain would bring tears to my eyes when I would try and get up to use the restroom. Showering was out of the question for days as each droplet of water that hit my RSD affected area felt like ice picks piercing into my skin. The only way to stop the twitch, and the constant flare up, was to turn my SCS off. The programmers wanted to work with me immediately to try to stop the problem, but arranging for a 12-hourround trip ride takes some planning when you have a family. We set an appointment for one week later and the programmer stated that if I could not keep it from making the RSD worse than to leave it off for a few days and give the nerves a chance to rest. I was unable to use the stimulator at all that week without flaring up the RSD. I felt as if for an entire year, my family had battled at my side against RSD, and my body was failing everyone’s efforts.

My mother in law was kind enough to drive me the vast distance to see my pain management doctor, and my neurologist’s office where we could try the Associate Awareness Technique and attempt to reprogram my SCS in an effort to relieve some of my torturous pain. Although everyone involved made every effort we were unable to bring my pain level down, or keep my arm from twitching if I turn the stimulation up to any level where I can feel the sensation. We left with the suggestion of leaving the stimulation on but turned down to a level where I cannot feel the sensation, with the expectations of the nerves accepting the stimulator over time. I also have had to begin taking stronger acting medications in hopes of controlling the pain. I will call my doctors next week as instructed to update them on the progress, or lack thereof. As I lay here in bed today, though I cannot feel the SCS working and the pain from my Reflex Sympathetic Dystrophy is unbearable.

I have experienced such an array of emotion while being diagnosed with Reflex Sympathetic Dystrophy. My pain psychologist told me that my family and myself that we needed to properly mourn and grieve the life that we had. We needed to grieve the dreams and goals we had planned for our lives, as pain drains the energy from me daily. I have tried to let go of things like my freakishly clean house, so that I can hope to spend five minutes sitting on the floor hugging my kids. Life feels impossible some days. We made the hard decision to the have our home foreclosed on, our dreams crushed. My health is now in perpetual crisis, we have looming medical debt, and my marriage in a state of perpetual miscommunication. It can all be overwhelming on a day-to-day basis to say the least. Yet somehow, I feel hope when I see progress as we try and work to grow into a stronger family unit throughout these years of hardship.

Work is all our family life has become these past fifteen months. Working towards understand and resolving my medical issues. The stress and pressure such evil incurable chronic pain diseases puts on a family is almost insurmountable. My husband and I have begun regular counseling visits to open up communication, as chronic pain makes is extremely difficult for me to communicate. I try and explain it to my husband by having him imagine someone cutting off his genitals and while standing there having that happen, have a rational logical conversation with me. My pain is screaming in my head all the time. The pain screams while I try to hug my children, even though often just their touch is too excruciating. The pain screams at the top of its lungs while my family works endlessly to exist.

My sister, Sarah, is been my angel these past few months. She has been staying with our family, caring for our children, through the end of the month. She came in May and has been the stay at home mother that I long to be, as I lay in my bedroom watching my children play thru the doorway. I feel guilt at the sacrifice she has made in giving up her summer before starting college. Thankfully, I am so grateful to have her here with my family and me right now that the guilt does not often overwhelm my love for her spending this agonizing time with us. She has taken incredible care for my children at a time when I can rarely leave my bed, I hope to one day repay her kindness.

After my sister returns home, putting our children in childcare for the first time in their lives is our only option. Being a stay at home Mom has been a dream of mine since I was a child. Having a husband that helped that dream come true was such a blessing for the past four years. Although I am devastated at the thought of my children being away from me during the day, I know being in a positive atmosphere amongst their peers is what they need in their lives right now. I struggle with the guilt of my husband, who is a full time accountant with a BS degree, is trying to get a job stocking shelves at Wal-Mart at night to afford the cost of childcare, along with my healthcare. Greg is a remarkable man that has picked up all the slack of the loss of a parent, with no complaints. It rips my heart apart to see the stress on his face over the various struggles we have undergone the past fifteen months. The strength in our marriage comes from the strength of our friendship that we have always had. Our marriage also now relies on us communicating with a counselor as the medication and the pain make it hard to communicate with me.
Remission with Reflex Sympathetic Dystrophy appears possibly if treated aggressively and quickly, from my research. The lack of knowledge within the medical community is atrocious. The lack of treatment options is heartbreaking. Awareness is the only hope I have of helping the community of people I have met through this catastrophic disease. For the thousands of people suffering with RSD/CRPS I hope to send my story to as many people as possible with the ambition of raising awareness.

Starting a blog, and participating in these support groups is what I hope to be a way of sharing our personal family struggles with chronic pain and Reflex Sympathetic Dystrophy. From the very few support groups I have found for chronic pain there seems to be a lack of discussion on the effects of our families lives, our futures, and our heartaches. I want my blog to be a place free from judgments. Where families, patients, friends, and the medical community can come and share the ways chronic pain disease has affected their lives.

It is impossible for me to communicate effectively the amount of pain that RSD causes me on a daily basis. If cutting my arm off had even the remote possibility of relieving even a small amount of the pain I would not hesitate. I know there are many others out there suffering just like me, and many much worse. I hope we can all reach out and form a community along with our caretakers and medical teams to help bring a better understanding to not only Reflex Sympathetic Dystrophy, but also the effects of chronic pain, medication, and health care treatments on patients and family life.

Today I await the phone call from my doctor telling me if I’m eligible for the experimental treatment. This is our last hope for controlling my spreading chronic pain. This is my last hope at becoming the mother and wife I used to love so dearly.

Thank you for taking the time to listen to my personal struggle with this disease. So far I’ve been kicked in the gut and punched in the face but I’m still swinging. I refuse to give in to the disease for myself, for my family, and for anyone that has been afflicted with a chronic pain disease.

Thank you Eli
 

For sharing your life struggles as only you can described them; for holding up strength, when it seems strength eludes you; for hanging in there for yourself and your family; for communicating with your husband as he needs to know you are responsive to him now more than ever, if even to share thoughts, prayers, hopes as pain prevents much more; and for your FIGHT to overcome.

You are in my prayers,
Mark56 :hug:zz

hHow is your hubby doing?
 

Welcome to the NT!

You are so fortunate to have such great family support!! Your hubby has a lot on his plate. How is he doing? He received good support from Jim here on NT but hasn't posted lately. There are many folks here who can offer much needed support!

Take Care!

Where do you live in western Canada? I'm in the same situation and location. It's hard to keep the hope going.

hello
 

my son was injury 3 years ago he was told he had carpal tunnel syndrome he was in therapy for 2 years then they did a nerve test to find out he had nerve damage. His doctor did surgery he made 2 cut 1 in the upper part of the arm and one in the palm of his hand,he had a really bad infection a few days later end up in the er his arm smell from where he was cut during surgery.He went back to therapy unit they said it was useless and a new doctor said he has rsd it will be a few weeks until after a bone test and another nerve test we find out how bad things are.
He is in constant pain and having trouble walking and lifting his legs his arm is starting to jerking causing pain in his neck and shoulder this has been going on for months.

Welcome DID
 

Hello Did in Pain-

I very much feel for your son regarding the carpal tunnel issue, the pain, the follow on diagnosis of rsd, the therapy and all along with potential relationship with the legs...... you and he must feel overcome. There is an active RSD and Peripheral Neuropathy forum here chock full of folks who will embrace you and your family with these difficulties, thoughts, experiences of their own, treatments they have endured, both positive and negative, and just a Whole Lot of Caring. Take a look and plug in, for I am sure it will be of help to you.

After the wreck which pretty much wracked my body, among all of the other surgeries, I had 4 carpal tunnel surgeries, one on the left and three on the right. My doc was so somber and sad in front of my wife and I as he administered the 5th or 6th EMG test.... you know, I think I have forgotten how many I really had, for there were more, I am sure, but he looked up and said "I am so sorry..... it is bad news, the test shows the entire nerve in yoru right arm is dying." He had tears in his eyes as we have developed a bond so strong over the last 6 1/2 years that he is equally friend and physician, who knows HOW HARD I have fought All of the issues the wreck brought to my body.

READ THIS- that is NOT by any stretch the end of the story. Doc said there is one last thing we can try or you will lose the arm, and he promptly sent me to the hand surgeon whom physicians use here in the Denver area. Doc said we all trust him so we as docs go to him and he started making the appointment for me. A new doc, a miracle worker with his practiced hands along with the guidance of God, he studied my chart volumes, looked at my hands, the scars on both, the results of the EMG and he shared with my wife and me HOPE.

My last hand surgery was 2 October 2009. I type this message using both hands as though nothing had ever been wrong. Sure I have to be careful not to overdo it on the keyboard because I NEVER want to risk my hands or arms again.

So, I share this note with you and your son for the sake of knowing it IS possible for help out there in the world. You have my prayers that God will share much grace and healing with your son.
Caring Much,
Mark56 :grouphug:

I guess it's my turn!
I was diagnosed in 2007 after being involved in a truck accident. I had surgery from a upper arm break and had a rod put in from my shoulder to elbow. Then while going through PT the therapist noticed the onset of RSD and my hand going into a claw position. Also never being able to straighten my arm so he sent me to a neurologist.
While being tested she found significant nerve damage and the symptoms of RSD. Also she gave me a CAT scan which showed degenerative cerebral atrophy. I also had head trauma.
I had surgery to fuse my wrist and put a 4 inch plate across the top to at best keep it straight.
Fast forward to now we found that my DCA is affecting my balance, speech, waking and motor skills. Back in Feb. I fell in my kitchen and broke my other wrist as my RSD arm didn't stick out to help break my fall. That resulted in another surgery to insert a small plate to hold one of my wrist bones together. It still works like a wrist. Although I'm presently going to PT for that.
I used to play bass guitar in bands and also six and twelve strings. But now one hand is useless so I taught myself to play the keyboard only using one hand. My profile pic is a pic of my gear.
Talk to you all later...

New to crps
 

Hi everyone, I am just here to introduce myself I guess. My name is bryan, I have been told I have crps for months now by a few doctors and a physical therapist. Just today though I have been "officially" diagnosed by a wcb doctor. I've read up on it... and it seems my crps is different than alot of people. My foot is like burning cold... not hot. Feels like my foot has permanent frost bite:( It sucks. I live in central Alberta, and I'm definitely not looking forward to the long winter again. Cold aggravates my foot making it feel impossibly colder than it already does. All I know is that I am going to have to deal with this one day at a time, and keep trying new treatments until I find one that hopefully will work for me.

Hey There Original Cool!
 

Yeah, I have had a foot since my permanent nerve injury which has been HOT, don't stop neither. Often I try to take off socks and shoes in order to be a little more comfortable...... even have applied blue ice gels to my foot. It is just the way it is.

Anyway, I was thinking a good nickname for you might be Elvis..... theoriginalcool..... :)

Hope your doc has miracles a waitin for you,
Mark56:)

I have frozen foot, too.
 

Hi Bryan,
I wanted to tell you that I too have that frozen foot sensation, like your foot is stuck in dry ice & it actually freezes your bones & is impossible to warm up & really hurts. I didn't get the burning sensation until I was into it a ways & even then it was random, mostly at night in my attempts at sleep when it would feel like my heel was on fire where it touched the mattress but it was never as bad as the frozen feeling which I get most often. Winter is tough as is extreme heat. I used to live at the beach in L.A. so I had perfect weather but after 4 years of being off work I had to give up & move back to my parents in North Central Washington State & the temperature extremes of summer & winter are a struggle. I just hit my 6 year mark on Aug. 19th & you will find that we all have somethings in common but that there doesn't seem to be an exact formula for how each persons symptoms come about. I had serious color changes for the first year that got better or changed the second year & so on. Now I only get color changes once in a while but I have serious deep bone pain, stinging, cramping & sensitivity to cold & heat, cold is worse....taking a shower can be dangerous until you learn to find the right medium before you get in. I have passed out from the pain & shock of it in the beginning when the water was too cold or too hot. Don't ice it! Ice is bad for us & it took some time to figure this out, too, even for my original PT people. If you were athletic at all it is probably the first instinct to do for an injury but don't do it.
Good luck Bryan.
Darla

It's good to know there is support around
 

Thanks for sharing your story and thoughts about crps Darla. I was actually quite athletic before this happened to me. I am still trying to stay as mobile as possible. I've been using a cane for months now, ever since my physio therapist suggested it. My calf muscles on my affected foot/leg have been shrinking for a long time now. I've lost about 2 inches circumference as compared to my right leg. I've actually got some family up for a visit this week, and I'm planning to go float on a lake with them today. I know I'll probably have a horrible flare up tonight from doing so, but I have already found that a balance must be struck between my pain and my social life. If I lock myself up because I know I'll be in pain, then I'll never experience any sort of fun again. I just can't let my pain get in my way, or I'll be stuck dwelling on it, every minute of every day.

new to neurotalk
 

Hi my name is anita
I am 42 a registered nurse (was), I fell and fractured my right ankle May 29, 2009, had plates and screws placed and immediately started having senory issues. My surgeon didn't believe me when I told him, every step hurt and it hurt when things touched my ankle, and it felt like ice water running from my knee down. So in November I went and found another Dr. that was the first time I had heard of RSD. I cried when I read the signs and symptoms and looked at the pictures. Sincce then I had a second surgery, removed all but one screw and the dr. found that I had a large ball of scar tissue in the joint, arthritis and one of the nerves where scared down to the bone. Now I am being followed by pain management. We have tried sympathic blocks with only 7-10 days of relief. Neurostimulator with less then 50% relief. I currently use a rollabout, bedcradle and shower chair. Weather changes and stress are horrible factors. I have applied to SSdisability, but have not heard anything. Workers comp. dr. disagrees with all the other dr.'s on my diagnosis and says I can work fulltime with modified duties.

So sorry you are dealing with WC. What modified duties does workman's comp think you can do? Did your doctors advise you to apply for SSDI? If so, did WC review those recommendations?

Counsel
 

Dear Anita- Please consider being proactive on your own behalf. I was especially concerned regarding the reality of medical care for my situation over the remainder of my life since I was injured on the job. For this reason primarily, I hired counsel to protect me, go after the benefits I should receive as a disabled individual, and..... well, in general FIGHT for me.

If you are attempting to protect yourself by yourself it is possible you could be one of whom advantage is taken. This and this only is why I suggest you find counsel to view your situation and give their thoughts. Often the initial consult is without charge as they evaluate whether you would be a client whose case bears representation.

As for me, well, I am a lawyer and have been in court with some of the best, but so far as working on my own situation, I was not too fond of that euphemism of the "surgeon practicing surgery on themself." I am glad I have had representation and my medical team backing me up every step of the way. Social Security was decided in my favor and the Workers Comp case has settled in principal although we have waited for over six months for the folks at Medicare to give their blessing to the settlement.

Just food for thought Anita,
Caring deeply,
Mark56:grouphug:

Anita,

I was a nurse before I was injured also and dealt with Workman's Comp. They are complete idiots and they will battle this until the end since it's a life long disease. They don't believe in this disease at all and told me it was all in my head. I gave up after 2 years of fighting them and losing my car, house and eventually my Twin Soul in the process and with an idiot for attorney at the time and settled for a small lump sum. However, fight them for all it's worth is my advice. You deserve it all after being injured at work. Don't give up like I did. I'm currently in the process of getting ready for my SSDI hearing in October. It's a battle to get it and this time I hope I win as my CRPS has spread from just my knee area to almost my entire leg and it's now slowing creeping up my back. Get attorneys and lawyers to help you in the process of SSDI...and don't give up hope...I hope they find you a treatment or medications that work...*painless hugs*

~*~ Ky ~*~

Thannk you Ky
 

Anita- Ky brings up a valid point, that of needing to vet the selection of lawyer you may make. Of course, I had connections a many, and I was able to drill down to the right person..... traced him from large firm practice where he cut his teeth to the shared practice he has with his father. Others whom I know recommended him.

If you have any friend, think in your neighborhood, your church, your social gatherings, who has legal experience, ask them to check around for you as a beginning, then follow the trail of that person's practice to determine whether they emerged from large firm practice as a primer to do work comp and social security. This would be a good indicator. Then ask questions of your friend what their reputation is like, schedule and initial interview with them and size them up, ask about their success representing clients such as you, what their fee structure is [it is generally regulated in this arena], and do your best....... that is if you think in terms of pursuing protection as I did.

All the best,
Mark56 :grouphug:

life in ruins
 

Hi all

Can't believe I have only just found a group who actually know what I'm going through. 2yrs ago I could never imagine living how I am now. I was in the British army. Spent my life helping injured soliders, I was a front line combat medic. Then switched to doing physiotherapy in the military. I spent my spare time doing skiing, mountaineering, Kayaking, triathlons, teaching medical skills to people, scuba diving and crazy adventure sports.

My life changed when 5mins from my parents house a car driver pulled off a kerb from behind a bus stop. The car hit my motorbike whilst I was doing 10mph or less! My life changed in seconds. 2yrs later and I am confined to a wheelchair, can not move my legs. I am in constant severe pain. I struggle to get clothes on, I want to cry. I thought i was a really strong women but now question everything I was before. I am starting to get that awful stabbing in my right hand. Not sure what I will do with no legs and one ARM out of action. I live by myself and can not cope as things are. Trying to explain to my family what the rsd is like for someone. About 99% of doctors have no idea, here in the uk rsd seems not to be known about! I can not work. It is a real effort to pretend to enjoy anything. I don't really have any one to chat with about things. I feel forced to put a brave face on for family and freinds so just build all the worries inside myself. I am on a list of drugs, which do not work. I am caught up in an insurance case but in the UK I seem to be at the mercy of the othersides insurance. I have no money for help or a carer. Ant suggestions would be amazing. All positions are agony, I force myself to do everything I need to everyday. I hate the wheelchair and not having my legs. I fall trying to transfer a lot, then am stuck on tge fall untill I get it together enough to drag myself back into my wheelchair with one and a half arms in use. You all sound like you are dealing with everything much better than me. You are all so strong. I was assured by the doctors the rsd can not spread but really feels like it is. It is going further up my legs, now up to and in my bottom. The doctor just looks at me as if I am an alien or making it up. Keep the strength you all have. Take care. N x

Dear Hotddiver You Are Home
 

This is the special place for folks who with unrelenting pain can find like minded and like situated folks who KNOW what you suffer. Earlier on this thread, I wrote on behalf of my Sis Terri the story which became her lot after merely having knee surgery, not knee replacement, just a scope surgery. Yes, it did travel in her situation as you have read has been the case for others on here, and yes, her life has changed drastically from one of activity in the community she loved to wheelchair and many meds to help endure the pain.

She has come to realize the wheelchair is not a symbol of what she lost so much as it is her pathway to movement and freedom. Hers is electrically propelled, and when she has felt more strong, has been known in the small town where she lives to go out to the center of the street and pop wheelies with her wheelchair just to show she is not beaten down by the evil of RSD. Then that Great Big Smile she shares, not because she is putting on a face for me, because she knows full well my own issues, BUT, it comes from within her heart as God has helped her find peace in counting the blessings she has for now.

This is not intended as some rah rah pep talk, just an introductory hug to let you know here you will feel the care of others. My Sis will not get on the computer any longer, so I tend to be her "secretary" if there is a post to be made. So from Terri in Colorado to you, a special hug is given.

Blessings on you,
Peace,
Mark56:grouphug:

Well said Mark,
Once we realize it is what it is and understand such things as wheelchairs or any sort of assistance is in fact just that. A means of helping and not an alert of our inabilities.
I had to overcome the same thing. My balance is bad and so I'm in a wheelchair most of the time and yes it was depressing but it keeps me from falling. Mobility, how ever it's gotten, is a good thing...

Hi, my name is Alisa and I'm new to the forum, although I've been a lurker for awhile now.

I first developed RSD in my left knee in April 2009 when I slipped and fell on my knee on a hard ceramic floor. After several months of having the pain get worse instead of better, I finally saw a doctor. Thus began the long process of seeing an orthopedic surgeon, who eventually performed arthroscopic surgery on my knee in October 2009, still not knowing what was wrong. Shortly after this surgery, the pain began to spread to my right knee. The pain just kept only getting worse in both knees as I went to several different doctors, only to hear them all end up telling me that they didn't know what was wrong with me and couldn't do anything more. It was really discouraging and a took a break from doctors for awhile but I eventually saw a pain management doctor who at my first appointment with her, was able to give me the diagnosis of RSD. It was such a relief to have a name to put with the pain that had taken over my life and I couldn't believe that there was finally something that fit all of my symptoms perfectly.

I had 2 series of 3 sympathetic nerve blocks each with her (all but one with ketamine as well), and while she was very nice, things were moving way too slowly so I started going to a university hospital and seeing a doctor in the pain center there. I first tried 5 bier blocks, but there was only temporary relief as was the results of the nerve blocks too. The next step was to do a 5 day inpatient epidural. That went well, so we decided to do a tunneled epidural catheter for 6 weeks, which brings me to where I am now. I am a little over 4 weeks into this epidural being in. While it has provided me with some pain relief for which I am very grateful, I still have burning most every night and sometimes throughout the day, I still have all of the sensitivity, and I sometimes still have swelling and inflammation and redness when I've been on my feet a good amount that day. Obviously I do a lot more in the real life than I did in the hospital. Like I said, though, I am grateful for the relief it has given me. When this comes out, if the pain comes back full force, the next step is the SCS.

I've tried lots of different meds, the only one that has done anything for me at all is nucynta. I have a TENS unit which can really provide some nice temporary relief sometimes. And I've done a ton of physical therapy which in the last several months has been a real help and it's the only thing that's ever provided me any lasting relief. I did a total of 19 weeks of PT before the diagnosis and then May of this year was the first time I went back since finding out I have RSD and everything fell into place. I have the best therapist and before my hospital stay she had me running for 2 minute periods. It was an amazing step at feeling more normal again, and I can't believe how my pain is less when I leave there then when I come in!

But still, I'm only 21 and I just feel like I can't accept living with the pain until I've tried everything I can. It's taken away so much of my life since it started over 2 years ago. I'm a full time college student and a part time nanny and sometimes it's all way too much for me to handle. I decided to finally register and I look forward to talking with you all!

Hi Yellow!!
 

Welcome to NeuroTalk! I am glad to learn you have received some relief through your hospital visits with the catheter treatment and also in the meantime with your TENS unit. If that is helping your RSD, then approaching a Trial for SCS implant if it has been recommended as a possible course of action for treatment AND you are in the US where the Trial lasts up to a week or more, you can truly give a good try to the unit while temporarily emplaced.

Many, many folks will reach out and offer help, information, and support while you are among us. Just ask away!

Caring,
Mark56:hug:

Mark56, thank you for the welcome! Although I'm trying to stay positive, realistically I fear that my pain will go back to baseline after the catheter comes out, so I have been doing research on the SCS implant and I think the trial is definitely something that I want to pursue as scared as I might be about all of it. If it can be the answer to bringing my pain level down for a long time or even getting rid of the pain, there's no way I'm not going to give it a try! :)

Well Yellow, if your doc recommends SCS
 

Research all you can regarding the efficacy of SCS as it may relate to RSD. I had talked it over with my Sis, Terri, but, then she is way to far down the road timewise and has lost so much weight, the doc would not recommend it for her. If you are earlier on in your RSD dx, then you may still have a good deal of muscle mass, and the rest of that stuff some of us would like to lose which makes up the body. There is NO REASON not to consider possibilities.

Since I am an SCS permanent implant patient, I have some experience with it, especially with the Trial, written about in early May 2010 on the following thread: http://neurotalk.psychcentral.com/thread117854.html

I have tried to chronologically give the process some points of reflection for others, so, there it is. If you have any questions in particular, fell welcome to run them out for us to ponder and respond. You are surely welcome to take a stroll over to the SCS subforum added here at the long suffering request of Rrae, our SCS leader of sorts. She is fun and full of information AND wit. The forum thread listings are found at: http://neurotalk.psychcentral.com/forum118.html

Many warm hearted friendly folks are found there willing to share of themselves with you as you wish.

Hope to see you there,
Mark56:hug:

Hi my name is Samantha and I am 23 and a Fine Arts Studente.

I live in Dieppe New-Brunswick and I have had RSD sens my accident on the 30th of September 2010. and I have completed 3/4 of my Fine Arts Bac. During my last year of my Bac I was having troubles getting my student loan an was forced to leave university to work for a semester and it just so happens that I got injured at work and developped my rsd in result of the accident.

I love art , Painting lage paintings (5x8 feet) and ceramic suclptures. I love playine with Texture in clay paint and drawing. I was very talented and my University teachers had hight hopes for me. I find it very hard thinking about what I love to do because I wont be able to do it again. I hope that some day ill have a chance to find my art again in another form.

Almost a year later and my leg is unusable because my spasems twisted in into a hook and im starting to loose function because the spasmes moved un my spin into my shoulder blade and my armes. I am in a whealchair & havent been able to straighten my leg of walk for over 4 months ( sens may 12th)

Of course i was early on cut off from worksafe & my doc from the pain clinic is furious because during the whole 10 weeks i spent at the rehab clinic in st john was a waste of presious time. They changed my diagnosis and gave me treatements not related to my rsd. During this time i could have had beter treatment at the pain clinic and my leg would never have gotten were it has.

In my opinion the centre(in place of wsnb) had noticed the signs of the advancement of my RSD it was planly ovious that all the times i had told them about the jumping in my foot, the ligament in my knee would jump out of track when i bent it(I know know that this is cause by to much tension in my ligaments), the seperation of my knee from swelling and all the different kind of nerve pain. The last exame i had my whole foot had been taken in a huge spasm.... the signs that the spasmes were increasing should have been clear to the staff if they actually knew what they were doing.

So know im waiting for 3 braces to help & prevent my limb of being pulled out of place. I need a brace to straigthen my leg, a brace for my knee to keep it in place and on for my hand to stop my thumb to spasme backward and keep the wrist in place.

I forgot to say that im allergic to anestetics and most treatments arent a option for me ... but we are trying the laser ... im also waiting to know when my apeal with wsnb is going to be.

Dear Samantha
 

Here is a basketfull of hope that your WSNB appeal will go to your benefit. I am in the US, and the corollary to your benefit system is referred to as Workmen's Compensation. I will say the system has been extremely beneficial to me in providing the medical care I required throughout and without the need for the appeal process you are enduring, so, from one sufferer to another, I well and truly hope your situation in that regard is resolved VERY soon!!

In the meantime, those medical issues regarding handling the RSD are complicated more especially given your body intolerance of some of the therapies commonly used to attempt arresting the pain RSD can and does cause. I will pray, if I may, that your situation is brought to the forefront of those who are your caregivers and to the effect that your treatment may be beneficial to you. There is a forum on NT regarding RSD specifically so you may tie in with them to compare notes, discuss therapies, grieve over the pain and gain their support. It is found here: http://neurotalk.psychcentral.com/forum21.html

May all ultimately be well with you, may all be well with you, and may all manner of things be well with you,
Prayin,
Mark56:hug:z

RSD from knee surgeries at start of this year.
 

Hello everyone! I have been reading and posting on here for maybe a week or so and I figured maybe I should tell a little of my story. I had a lateral release with chondroplasty on both of my knees at the start of this year. After surgery #1, the toes on my right foot started to get meat locker cold and then set your oven to broil hot. Then the left foot did the same thing. Then all the other symptoms started to come along one after the other. Edema, red hot shiney skin, burning pain, and all the other fun things that come with it. Fast forward 7 to 8 months and I am seeing a neurologist and pain specialist. I did not get a diagnosis until about 6 months in or so. Anyway, I'm now just starting to get my head around this disease and what comes with it. You all have been so wonderful and helpful to me. Can't ever thank you enough. Really. Thank you, ALL of you for being so generous with your time and thoughts and prayers.:grouphug: Karen

Soak in epsoms salts, Lukewarm works both ways. It hurts like crazy but after an hour or so relief comes. Get ready for winter, it's hard. Before my accident I wore size 6 boots, now I have size 8 but they still cause major pain. Hard bottom slippers are my preference, which means I only go where it is cleared of water and snow in winter.

I have a soft piece of light weight fleece that I use to wrap them in at bedtime, but sometimes even that is too much to bear.

Glad you found this place, a gold mine of resources, support and friends. Thanks for adding me as one of yours. Forgive me if I miss seeing a post or message, I don't get the opportunity to check everyday.

Have a less pain weekend
GramE

GRRRRRRR Winter,
Living in the mountains for sure doesn't help. The cold temps really do a number on me. I really feel sorry for those who live far up north...

Hi, Im Nat. Im 22 years old and live in East Sussex in England. Just signed up.

About 18 months ago I was bitten on the wrist by my grandmothers (very old!) dog. The wrist healed up fine physically, but the pain never really went away. About a month after the bite, my wrist swelled right up and I wasnt able to move it. The doctor I saw wasnt my normal one, and he diagnosed it as tendinitis, gave me anti-inflamatories, and sent me on my way saying it should heal itself within a couple of weeks.

Well those couple of weeks went by and although the swelling lessened, the pain was still there so went back to my own doctor. Once again, I was given anti-inflamatories and told to come back in a month if it wasnt better, and to rest it as much as possible. The swelling finally went down but I was still unable to move the wrist properly and it hurt a lot!

Went back to the doctor, who still believed it was tendonitis and sent me to see a physiotherepist. She told me right away that she didnt think the doctors diagnosis was correct and gave me some excersizes to do to improve the movement in the wrist, and she also gave me a splint to wear whenever it was painful and at night. Within a couple of weeks she sent me back to the doctor saying there was no improvement and suggested looking further into it.

Over the next few months I was given tramadol for the pain, and sent to the local hospital for an xray (while still being told to splint the wrist as much as possible to prevent the tendons being injured further). The xray showed nothing unusual so they sent me for a blood test to rule out any infection. This came back clear too, so I was booked in for an MRI.

They strap the limb in place for an MRI and this was one of the most painful things they'd ever done. by this time it had been over year since the first doctors appointment, but as usual, the MRI scan also came back clear! so the hospital just sent me to another physiotherepist, and I went back to my own doctor.

The first appointment with this physio was a complete disaster. He pulled my wrist about and said to keep moving it and come back and see him in a weeks time. A couple of days later I had an appointment with my doctor, and he game me the diagnosis of RSD... but he didnt explain anything to me, he just told me to go on the internet and research it. He also said he would contact the physio and make sure this was taken into account. He also started me on Amatrpitalyn (sp?), 2 weeks on 1 tablet at night then 2 weeks on 2 tablets at night. So far its not had an effect, but I see the doctor again in a few days time.

My second physio appointment was a few days ago. I asked him about RSD and what it means and his explaination was "the brain thinks your arm hurts so we have to retrain it" and he once again made me go through a load of excersizes while pressing on my wrist and moving it about which is extremely painful! and at the end of the session he said "Well its obviously getting better because you dont look like you're in as much pain now as you did when we started". I was not very pleased and told him I was in a lot more pain now, and he didnt respond.

I have an appointment with the physio again tomorrow which im dreading, then friday im seeing my own doctor again and seeing another doctor at the hospital next tuesday!

Well thats my story so far... Im glad I finally have a real diagnosis, even if it isnt a good one. and im very glad there are others who understand, because my family and friends certainly dont... They think a few painkillers and everything will be back to normal! I just wish it were that easy!!

I want to say I am glad I found this site I am hoping I will meet some people that understand what this monster has done to all of us , and will support me and let me support them.
I am 43 years old I have full body RSD I was a nurse for over 25 years, a wheel chair lift on a van came done on my foot ( the weight of the van and lift was on my right foot) I was in a parking lot and they were redoing their parking lot thank goodness. It took 5 big guys to lift the van off my foot so they could pull me out. I was sent to Indy to a big hospital and was seen by a specialist who decided that immobilizing my right leg for 6 months was the right thing to do and to give me large doses of medication to keep me out of pain. They said I would never walk again, I was in a chair for 2 years. I worked hard and got to where I could walk again I went through many Drs. and treatments. spinal blocks and spinal cord stimulator large doses of pain medications, therapy. I am no longer able to work, I dont sleep and the pain you cant describe, I fell and my stimulator has to be taken out and replaced but I also have a bad heart so they are having problems. I cant find a dr that understands and knows what they are doing that can really help me....

My Story...
 

Hi!
Just spent the whole day trying to write my story, only to have it time out on me and lost the works.:mad:
I'll have to try an other day.

Oh no! How frustrating!

May I suggest when you try again, you type it out in a Word Document, then copy and paste it to here. If you're not sure how to do that, type it out as an email, and instead of sending to any-one, save it to your drafts, and copy and paste it from there.

Also, when you log in each time, don't forget to click "remember me" to reduce the chance of this happening again.

Hello, i'm 31 and was diagnosed with CRPS/RSD in May 2011
 

I had a freak accident in December of 2009 where I broke my right hand and tore my posterior labrum cuff in my right shoulder (with 2 cysts that sit very close to the suprascapular nerve). The tingling, zapping, crushing, intense nerve pain started about a month later. It started in my shoulder and worked its way to my elbow then eventually to my right hand. My PCP was baffled, so she referred me out to neuro. The 1st neuro was a joke. He dx'd me with spinal stenosis and put me on gabapentin & did an EMG/NC study. He ordered a bunch of MRI's that showed three protruding discs in my C-4/5/6, and a herniation in my T-6/7. When I told him my pain started in my shoulder he blew me off. So, then my PCP referred me to Ortho. From ortho I had the shoulder MRI done and it confirmed my suspicion of the cuff tear. I was then referred to a new Othro surgeon because my 1st one retired. That Ortho was awesome and said that with the nerve pain, something else was going on. They did NOT recommend surgery on the cuff tear due to the chance of it tearing and fraying even more. Looking back I am glad, because I read all the stories here about RSD caused from surgery. Though, my shoulder causes immense pain. My right hand has an atrophy. It often feels ice cold, or burning hot, turns a dark shade of purple, gets edema, and loses total feeling.

Once the nerve pain made it to my hand, the nerve pain in my shoulder radiated to my neck and down my spine. My shoulder pops in and out of socket a lot. I can't type too much or write, or use my hand too much because of the numbness. The pain is ridiculous. There are days I can't even get out of bed. I am have damage to the Trigeminal nerve and it affects my lower and upper teeth. I am extremely sensitive to all weather changes, hot & cold, breezes, ect. My teeth are always so hypersensitive that I lost 80 lbs in 9 months (in 2010). From Ortho I was then referred to a wonderful, educated, Christian, caring pain mgt dr. He diagnosed me within 30 mins of his exam. He gave me a lot of info on it and started me on new meds and recommended PT. The PT helped a lot and I was put on Lyrica and the new Tramadol ER 300mg. They both worked great, but were too expensive, so I had to go back on gabapentin (which barely takes the edge off). I started a 6week long series of stellate and cervical nerve blocks that worked wonderfully. I can go about 4 months between blocks until I need them again. Last week I had another stellate and 3 in my c-spine. My dr is very compassionate and puts me under with light general sedation and fentanyl. I hardley feel a thing. We had to change my meds again because winter is the hardest time of year. I freeze like snow! My body cannot regulate it's internal temp correctly, so I am either freezing cold, or burning hot. I am not bothered much by clothing, except really heavy fleece or jackets that put weight on my shoulder. I am now taking 3,300 mg of gabapentin, 3 aleve a day, 150mg regular Tramadol, 60 mg of cymbalta (which I get for free from my dr), and 3 mg a day of xanax xr, and trazadone for sleep. I'll be going back next week for more blocks. It takes a few weeks of them to get to where I can function half normally without feeling like I am dying. My teeth are sensitive again, so I am not eating and losing more weight.

My husband walked out on my and our three daughters after 12 yrs of marriage (he cheated for 10 yrs and our marriage was ruined). I have no job and have been out of work for over a yr. My unemployment ended in July. We have started divorce proceedings, so the added stress of the divorce, the wintery weather, and trying to cope with my daughters has magnified the pain x1000000!!!!! I cannot type very long before I lose all feeling in my fingers and hand. My shoulder constantly hurts. I had to quit PT because my husband cut us off financially and our first hearing for the child and spousal support order was cancelled, so my dr is seeing me just for insurance and not charging me anything for copays or the injections! He is such a wonderful dr!!!!! I got really lucky with him! He is very familar with CRPS/RSD and treatments. He is always willing to play with my meds to find the most effective route of treatment.

Living with RSD is like living with a monster. It hurts so bad, drives me insane at times, and it's so not fair! None of us should be suffering like this! I hate it and I feel that other people do not understand what it is, why I am constantly in pain, or why I can no longer do activities I was able to do before. Right now because its so cold my neck and back are aching so much and I just want to roll into a ball and cry!!!!!! :-( Luckily, I found this group and enjoyed reading all the stories and the support. I though I would never find a support group. My tens unit used to help, but now it just puts my nerves on FIRE! I use my heating pad a lot, sometimes dry, sometimes moist. I am now a left side sleeper, with a body pillow, a memory foam beck pillow under my head, and an extra pillow to tuck under my arm so my shoulder doesn't "hang" down. That hurts! Now that I know that surgery can cause RSD to spread like a wildfire, I don't think I will opt for any kind of surgery anytime soon on my discs or the cuff tear. I do great with PT and am looking for a job (i'm a social worker, btw) so I can afford to pay my copays for PT.

Oh, I also get bad migraines that last for days and my face and head hurt so much. I suspect I have a slipped disc in my lumbar, but need an MRI to confirm it. If I do, i'll try the lumbar nerve blocks. Ok, well the hand is turning lavendar and going numb, and my scalp is tingling (the weirdest feeling ever), and it feels like someone just took an icepick to my teeth and crushed them, so I am off to bed now! Already took my meds. Sleep is the only break I get from the pain! It's to "meet" you all! I wish you all a less pain day tomorrow! Have a great evening everyone!

C

Hi C,
Welcome to the family.
After reading your story my heart goes out to you. I'm sorry your hubby is such an *******.
Your doc sounds great so I'm glad for that. Fighting this monster sure sucks.
I just wanted to let you know someone read your story.
I'll be here like so many of us to listen and maybe help in some way.
Later...:grouphug:

Thanks, jimbo
 

Thank you for the welcome. And yes, my soon to be ex (not soon enough, lol) is a total jerk! It's icy cold today and freezing rain, so I stayed inside all day, except when I had to pick my kids up from school! I love my isotoner gloves, my scarf, and lots of layers with my ugg boots! They keep me warm! I haven't been able to eat, though...my tummy is used to not being fed enough, but I get headaches from not eating. As soon as I can figure out how to post a pic, i'll post some of my lovely discolored hand!

Thanks for the hugs, right back at ya!:grouphug:

New to NeuroTalk
 

I am 42yr old female. I have RSD in my left arm because of a surgery to create an AV Fistula for LDL Apheresis (Dialysis for Cholesterol) in 2006. I live in a suburb just outside of Oklahoma City, OK. I got a SCS a year ago this month. So far, every doctor I have seen in Oklahoma does will not prescribe narcotic medications, no matter what. So, needless to say, my daily pain level is pretty high. I have broken 3 of my teeth because of the lack of pain control. I grit my teeth when I am hurting very bad. I have gritted my teeth so hard and for so long, that I have broken 3 teeth. I am hoping to find other ways to decrease my pain. Thanks for taking the time to read my post.
Leah

Welcome to the family Leah,
So sorry to hear of what you're going thru.
I'm trying to stay away from narcotics and found that combining Lyrica and Cymbalta does fairly well.
I thought you'd like to know...