Dear Fairlight,

So sorry to here you are suffering. It sounds like you just might not be with the correct doctors. My suggestion is to try and get to a Pain Managment Facility, possilby with a big teaching hosptial. I see you live in TN maybe Vanderbelt in Nashville I believe they are medical teaching facility.

I hope this helps. Feel better.

Gabbycakes

Hello-
I'm new to chats and RSD. I was diagnosed in 12/10. I had a crush injury to my right wrist and the pain has never gone away. Most of the time I can "feel" all the bones in my hand and shoulder (if I close my eyes I can picture the bones/joints). I also have pain in the arm (feels like it is being squeezed). I have faint pains in my left arm and my legs go numb often (feel heavy and like they can't hold my weight). There are times when I have pain on the bottom of my feet (pins and needles) and I have been having migraines for 2/3 weeks.

I have recently moved and my primary is questioning the diagnosis. It is so frustrating that I have to start all over again. Can anyone tell me if these are symptoms? I have no history of migraines or other health issues.

Life has not been the same since involving in the accident on 11/11/2009. Sudden sharp pain and burning pain has been keeping me accompany 24/7. Was given an official diagnosis Stating that i have Complex Regional Pain Syndrome (CRPS) type 2 on 05/10/10 almost a year later; by the pain management Dr. Since then visiting to the pain management Dr., pain psychology and pain physiotherapist has been part of my life. Used to be a foodie, enjoy hunting declicios food; enjoy cooking and get my family members to be my geninny pigs wahahaha...., gathering and partying with friend in night spot such as St.James or having BBQ session followed by mahjong session and traveling to Genting Highland to enjoy the cool weather, to gamble and most importantly able to speed driving at 160 to 180 throughout the trip^^. Now it's totally different, has been trying hard to regain my life my lifestyle with the management of my pain with a 30% plus improvement. It's difficult, it's tough...... Has been living in pain riding on a pain roller coastal. To be honest I have totally lost the interest of staying alive; don't even mention about going back to my old lifestyle. Pain medications I am taking did help to reduce my pain but there are side effects. Taking my medications after dinner I will starts to walk in a manner as if I am drunk and by 9pm plus I am being knock out by drowsiness, if I take the medication too late, I will be very stone in the morning till noon. Pain medications don't always wins the battle. If pain monster wins, I have to endure the excitement of pain till the pain dies off on its own for 4 to 5hours my emotions my thought will be totally controlled by this monster. The worst is when it gets so painful that my tears starts to activate suicide thoughts will join in the fun. I don't*know when I will be totally defeated in this war. Lol...... No life at all. I wanted encouragements from my family and my friends but I don't have the courage to open up. Every time whenever I wanted to open my mouth to tell my family members I ended up swallowing my words. Afraid to bring disturbance to them leading them to join my misery.

Hello all -

My name is Vicky and live in Cadillac Michigan. I was just diagnosed today with CRPS type 1. I fell back in January and was diagnosed with a wrist that was fractured in 2 places. Was sent to a local bone specialist. After 2 visits with him, he sent me off for a MRI. About a week later, he called me personally to tell me that I had a torn ligament and he was sending me to Traverse to a hand/wrist specialist. This was about a month after my fall, and by then I was beginning to think that I was going crazy. My hand would swell, turn red/purple and my whole arm up to my elbow was on fire. It was bizarre, and I couldn't figure it out. This far in, it should not still hurt. Let alone hurt more then it did when I first fell. I was beginning to think that I was nuts. I would get comments from people about what a low pain tolorance I must have, even from my best friend. These are the same people that would mention that my hand was purple or red. I saw the hand specialist last week, and spent some time with him at which point he thought that the pain was from carpel tunnel, and wanted me to go for the nerve test. Meanwhile, I was asking my original specialist for a refill on my pain med (vicodine). I get a nasty message from his nurse yesterday about how this was the last time (please keep in mind this was the 3rd script at 30 pills per and 1-2 every 6 hrs as needed since the accident). And if I needed FURTHER narcotics that I needed to contact my pcp or the specialist. Here I didn't ask my specialist last week for meds. I was just trying to ride it out - thinking that one dr should manage my meds. That way there would be no confusion. It was like I was a drug addict. I type alot with my job, and yesterday (it wasn't the first but definitely the worst) day my arm was on fire! Nothing would make it feel better, I was crying - it was just awful. Today, I go to for my nerve test, and see a new dr. She listened, and examined me. At which point she proceeded to tell me that we would not be having the test, that I had RSD and the good news was that we caught it early. Now, tomorrow I am having the first in a series of 5 nerve blocks. Not to mention my mri did show some problems so now I still see the specialist, and have a new doctor. She told me this, and I started to cry because I really thought I was going crazy! She kept saying things like "remission" "agressive treatment" and so forth. Then I came home, and looked it up. Now, I am scared to death and freaking out about the block tomorrow. My other wrist hurts, and has been for a couple of weeks, thinking I was compensating and that was why. Not so relieved now that I have read a bit. More scared than anything. Wondering if anyone else has felt that way? Also, where would you go for real research and to get the facts. Thank you for listening to me. I appreciate it!

Vicky

Hi all: I have been battling RSD/CRPS since 1998. My right foot and leg are constantly swollen, and shinny, and painful. I use compression hose when out and about to try and keep the edema down some.

I take tylenol or aspirin or aleve for pain, and if the pain gets to severe, I see the doctor to get a perscription for a few days.

Walking is difficult most of the time, and I use cane. On the days that my leg is nearly normal, I rejoice for the good days which are far and few between.

Hello everyone: I have had 7 breaks and countless sprains since the age of 19; at age 35 the ankle would no longer support my body weight, the pain was excruciating and falling down stairs seemed to be my new past time. This is what triggered me to seek out medical attention from the VA. It was discovered the ankle was in pretty bad shape and was in need of a total reconstructive surgery. When recovery was finished and rehab began I noticed that the ankle did not feel quite right. It seemed to always be cold, stiff and painful. When I brought these symptoms up to the doctor, his response was “it’s all in your head” This was in 2008.

By 2009 a podiatrist came into the picture and determined another surgery was necessary to fix my symptoms. X-rays showed osteoarthritis was present. By this time I had lost my job and was losing my home. I moved out of state and took up residence with my parents.

6 months later I am back at the VA, this time a fusion of the Right ankle is necessary, no more maintenance surgeries. Approximately 3 months after the fusion the foot become very angry and turns a bluish/deep burgundy color, it felt like an ice cube. This is when the Doctor’s got a clue. An EMG was ordered and a never conductor test; Results: severe nerve and muscle damage; Diagnosis: CRPS/RSD (go figure) Next step pain management.

1. We began this step with aggressive sympathetic nerve blocks (every two weeks) FAILED.

2. Directly Blocking the nerve (every three weeks) FAILED.

3. Now a Spinal Cord Stimulator is desired, unfortunately the VA’s standard rule is: any elective surgery the patient must have a mental health evaluation and the Physiologist must approve the procedure. FAILED

Reason: The mental health department does not believe that I understand my situation to the full extent and because of depression in the past (which I believe all who live with chronic pain become depressed) the worry is that I will spiral downhill if this final step (SCS) does not work.

Requirements for Approval: I must begin individual therapy and join group therapy for RSD sufferer’s so I can get a better understanding of my situation.

When I first heard this news I was very angry; how dare they deny me the right to try; then tell I don’t understand my situation. However, after reading through some of your posts it has occurred to me that I am completely in the dark about this disease. I had no clue, and I don’t believe that I have stopped crying all day.

I am sorry that this is such a long description of my life but, I have no one else to talk to, the doctors either don’t know what will happen or they have been refusing to tell me truth for fear of hurting my feelings.

Please tell me, what is going to happen to my body? As far as I can tell I have had it for 3 years and have entered stage 3 recently. Things have been happening fast; the blue/red freezing foot; a rash of some sort is on my toes and on the ball of my foot (does not itch) but, have become scaly and I have spots of paralyses. Will this disease invade all of my body eventually? How deformed will my limb get? I’ve seen the pictures; does that happen to all of us? Please help find the answers. I am completely lost.

Thank you so much for your time:
Angelique

I am a 34 year old female that just got diagnosed with CRPS. I had wrist surgery for osteochondritis and then in physical therapy, started noticing extreme pain. The therapist mentioned this disorder and it has been crazy ever since...I also have Keinbock's which is a bone that is dying in my wrist. My pain doctor told me that is the least of my concerns right now because we have to get my pain under control. I am doing ganglion nerve blocks every two weeks and just started on neurotin. That is a wicked drug. I only have the pain up to my elbow so we are hoping we caught it early enough. This is a scary thing to live with. I just started reading the other stories and I am finding encouragement from them. Good luck to everyone in their journey.

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.

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 zz

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!