Chronic Pain Is Not the End!
There Is
Hope & Healing 

Hi, I'm Heather.

I'm a survivor.  For over 6 years I lived with a disease so painful it is called the suicide disease.  Many of you are living life with pain, anger, frustration, and hopelessness and don't know where to go or whom to turn to.  I am here to tell you THERE IS HOPE!


After years of searching, I found just the breakthrough I needed.  I found a clinic that understood just what I was going through and knew exactly what to do.  I am a testament to the power of faith, prayer, and determination.  I found Healing in My Journey.


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Encouragement

08 May, 2021
Several years ago, a journey began that I didn’t see coming. A journey that I didn’t plan which was unlike my nature. A journey that took over my days and nights, my awake time and the time that I was looking for sleep, my thoughts and my everyday activities. A journey that had a name, one that I had never heard of, nor did I understand. I’m forever grateful to my husband for walking me through every day, every doctor visit and step of my healing journey. My journey is not over, but my journey has found hope and I am thankful to be able to share it with you. For me, Complex Regional Pain Syndrome meant a life of finding a new normal. Life for me was no longer like it had been. I was forced to accept a life of chronic pain and fatigue and all of the ugly symptoms that came with it. Life became survival. In the spring of 2013, I began to feel as if my body was no longer my own, that I was no longer in control of its actions, and it was spiraling out of control. I was very much accustomed to my routine. I was living life with my husband and girls, I had a job that I loved, and we were active in our church community. The symptoms of CRPS came on so quickly that I couldn’t keep up with trying to understand what was happening with my body. I loved exercising, I ate healthy, and overall took care of my body. For me, CRPS meant symptoms of a disease without a diagnosis.
12 Mar, 2019
Exodus 17: 12 “When Moses’s hands grew heavy…Aaron and Hur supported his hands, one on one side and one on the other so that his hands remained steady until the sun went down.” I was reading this morning and in the book of Exodus where the Israelites were to battle with Amalek’s army, God told Moses to use his staff and raise it up while the battle was in progress. God’s army, Israel prevailed as long as Moses’s hands were held high. The Bible says that when Moses’s hands grew heavy, they took a stone and put it under him, and he sat down on it. Then Aaron and Hur supported his hands, one on one side and one on the other so that his hands remained steady until the sun went down. In fighting through the journey of Complex Regional Pain Syndrome, it is definitely a battle, one that you cannot fight on your own. When the journey gets heavy, you need someone to provide for you, to support you just as Aaron and Hur did for Moses. CRPS is a physical, mental, emotional, and spiritual battle. I am so thankful for my husband, who physically helped me when I did not have strength. I am thankful that when the journey through healing was heavy mentally and emotionally, he provided rest for me and took over the care of our children and household responsibilities in addition to being a dad and having a job in the workplace of his own. I am thankful that in my battle, when spiritually it was difficult to pray, he was my intercessor. The battle in Exodus is a battle that occurred in biblical times, but I believe that the bible was provided as a guide for us to read and follow and provide help and assistance and encouragement especially when life’s journey does not fold out as planned. But I also believe that God provides a helper for us to be apart of our journey when life is too difficult for us to understand. I am thankful for my helper, Matthew, whom the Lord has provided to help me in the battle, to hold my hand on one side and to hold my hand on the other side so that I can remain steady in fighting and healing until the sun goes down.
By Matthew Russell 12 Mar, 2019
Living with someone who has CRPS is a very frustrating experience. Until we figured out she had CRPS we had already lived with it for over 5 years. Not knowing what CRPS was, or even being able to put a name to it was one of the most frustrating things. I went through my ups and downs just like she did. I dealt with heavy frustration, anger, doubt, feeling of helplessness. Through it all, I never gave up hope that we would find out what was wrong, my faith in Christ never wavered and I trusted that He held us tightly in His arms. I stayed by her side because I promised her I would over 17 years earlier. Here is a little of Heather’s story through my lens of being her husband. 6 years ago Heather began to have pain in her lower back on the right side. It got so bad that it was beginning to inhibit her mobility. We decided to go to an Orthopedic and a few exams, the diagnosis was that she had only tweaked her back and she needed physical therapy. We did this per the doctor’s instruction and after several weeks of therapy, it had not gotten better but worse. We began to feel that it was more than just a “tweak” and we asked to be referred to a Neurologist. This Neurologist is one of the best in our area and after exams, x-rays, and a couple MRI’s he didn’t have an answer either but he did say he thought she had Fibromyalgia and something called CRPS (Complex Regional Pain Syndrome) which we had never heard of before. We asked him what we could do about it and he didn’t know. He said he didn’t know of a cure or any treatments for it or if there were any local doctors we could go to. He made a couple suggestions but nothing we were very happy with. We were very discouraged as whatever was happening to her was getting worse and beginning to spread to other parts of her body. From that point forward we faced an unimaginable foe that attacked her body in so many different ways and only got stronger the longer it went unchallenged. Over the next 5 years here is a shortened list of the testing Heather went through to try and understand what was going on: 2 More Neurologists Several brain scans – Was first thought she had MS but has now been ruled out Countless more MRI’s and x-ray’s – back, torso, spine, legs, brain, feet, arms, hands– nothing was found 6 weeks at a specialty Back & Spine center – nothing was found and therapies slightly improved a couple of things but that pain eventually came back Sleep studies – nothing abnormal Countless blood panels – We had tested for anything that could be tested. Some samples were sent out of the country. Every one of them came back normal. Vitamin deficiency tests – All normal / Ran Yearly Extensive hormone testing – All normal / Ran yearly Mineral testing – All normal / Ran Yearly Cancer Screenings Doppler studies on her circulatory system – We did find that she has valve issues in her legs and Deep Vein Thrombosis. Nothing that would cause whole body pain that she has been experiencing. Applied for Mayo Clinic twice – Denied twice due to her case being “too vague” Chiropractors Multiple Internal Medicine Dr’s – they all have referred us to another doctor as they don’t know what to do Rheumatoid Dr’s – All panels have come back normal / Ran yearly Pain specialists Centers– Nothing has worked Vascular Dr’s I may be missing some things but I’m sure you get the picture. We had explored every avenue we and local doctors could think of. No one had a clue. All anyone could do was treat the symptoms in hopes of lessening the pain she was constantly in. You can imagine our disappointment and discouragement. Disappointment turned into anger, anger turned into despair, despair turned into hopelessness as each day passed and then into years. I continued to pray daily for Heather’s healing, that we would be lead to a doctor that knew just what to do, who had seen these symptoms, or could point us in the right direction. That day never came. But still, I stayed strong and vigilant as each person dealing with CRPS needs their loved one to be. They may want to give up and may have given up hope but you can’t, for their sake. On her best days Heather was in a constant state of whole-body pain. She described it as a “buzzing” that she would feel from head to toe. Her limbs felt like they were on fire. Her entire sensory system was heightened. Every normal thing for you and I was times 1,000 for her. For example, her skin would be so sensitive to the slightest thing and the smallest touch would cause excruciating pain. This is why she eventually cut her hair short because she couldn’t stand having it touching her neck and face. At times, I would spend 30 minutes looking in her clothing because she said something was poking her back that felt like a needle. It always turned out to be the smallest hair. Something that you and I wouldn’t even feel. So, every morning I would “de-lint” her clothing (LOL) looking for anything that would cause her discomfort and remove it. Yes, even tiny hairs. Her feet and fingertips were constantly numb and had that terrible feeling of when a body part is finally getting circulation back after being “asleep” for a period of time, but that feeling never went away. Her hands, feet, and legs would turn red and purple with terrible pain. She had to wear flats because she couldn’t feel the ground beneath her and she was afraid she would lose her balance and fall with a shoe that had a heel. She dealt with fine motor skill issues like picking up a paperclip or holding a pencil. Heather had always had beautiful handwriting but while she had Complex Regional Pain Syndrome her handwriting became deteriorated due to not being able to feel the pen in her fingers or hold it well due to the pain. On her worst days, in addition to the above, I would have to help her in and out of bed. Help her in and out of the shower. Help her get dressed and undressed, put on her shoes and take them off. There were days she lost complete use of her arms, legs or both. Her right arm would draw up and she would hold it close to her. Her legs just wouldn’t work and she would drag them behind her. I specifically remember one Sunday in church, Heather leaned over to me and said she needed to get up and go home but she couldn’t get up out of her seat and needed help. So, in front of everyone I got her out of her chair and we began the long walk through the church past rows and rows of people who watched and into the parking lot. My arm held tightly around her keeping her upright. “My legs just won’t work” is what she would say as she apologized over and over. On the way to the car we passed several people we knew and they were shocked to see her in this state. “Matt what’s wrong?” and with tears streaming down my face all I could think to say was “we don’t know” and we kept walking. How do you describe to someone all the things you have been dealing with when you don’t even understand what is going on and can’t even give it a name? The bag full of medication Heather would take each day. Each one trying to treat a specific symptom Heather was in a constant state of extreme fatigue even though on most nights she got more than the recommended amount of sleep often going to bed before our children. Almost every morning I would ask her if she slept. Most of the time she would say she didn’t know. She would typically go to bed around 8:00 or 9:00 but wake up around 1:00 a.m. due to her back pain. If her back wasn’t waking her up then her constant leg pains would. We later found out the constant fatigue was due to how CRPS can put the nervous system in a constant state of fight or flight which keeps the adrenal glands constantly drained. No matter how much time she gave herself to sleep it was never enough. I remember there were times she would cry while sitting in bed because she didn’t want to close her eyes. Most parents look forward to that time of the day when they could finally lay their head down and rest. For her, it was agonizing. She was exhausted, she was in pain, she wanted to rest but her body wouldn’t let her. She would wake up feeling just as tired as when she went to bed. And now it was time to do it all over again, day after day, year after year. Up until the Fall of 2018 we had been seeing an internal medicine doctor that has been willing to hang in there with us for over a year and a half. We’ll call her Dr. B. We really liked her a lot and she was a very good doctor. She would spend as much time as we needed discussing Heather’s condition. She really worked hard at listening to her and recommending medications. We have tried at least 30-40 different medications and she was regularly taking 12-15 medications daily. Each one trying to target and treat a specific symptom she was dealing with. And each one with its own side effects. It came to a point where there really wasn’t any traditional medication left to try and we had begun to move into a “pain management” discussion. Infusions, shots, nerve and spinal blocks and oh yes even medical marijuana. Heather didn’t like the sound of any of them for obvious reasons but mainly because she felt that if she accepted the doctors recommendation and went forward with them then she was accepting a lifestyle of only trying to improve her quality of life and not beat the illness. I was ok with whatever decision she would have chosen. Who was I to tell her what she could do and not do to help ease the pain. When you are in physical pain all the time you consider anything that will help and I so desperately wanted her pain to ease. The past 6 years haven’t been a journey of finding out what Heather has but really understanding what she didn’t have. It’s all about perspective. Oh, and remember that Neurologist from 6 years ago? He was right on the mark but didn’t know what to do for us. But, in the fall of 2018 we came across a doctor who knew just what to do.
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