Tag Archive | spasticity

Take a moment

Take the time to enjoy all of God’s miracles. They are all around if you just cease the opportunity to look around. How often do you get to see a hummingbird perched in a tree? (Note- I took this photo in my

backyard yesterday morning)

Whether you are dealing with chronic illness, being overwhelmed, or any of life’s other downers you can still find positives. When we have grateful heart we open ourselves up to be able to taken in the beauty/miracles all around us. So, if we take a moment to just stop and take a breath we will find there are good things all around us. It could be a simple smile, someone opening a door for you, or just enjoying God’s beautiful sunshine.

Life is not always easy, but when we have a grateful heart we can all still find the positives. When we seek the positives, we discover our outlook can change allowing to keep moving forward and tell a better story. Miracles are all around us for us to enjoy.

Anything is possible

All we have to do is open our eyes and we can see all things He has created. If He created us and all things that surround us than how can we doubt that anything is impossible?

Have faith and hope because “Where there is faith, and there is hope, Miracles Transpire. ” No matter where we are or what circumstances we gave God is with us. All we have to do is ask Him. He loves us unconditionally and wants us to depend on Him.

Each morning I awake in pain facing the fact that I am disabled. Yet, I know that through every breath God is by my side. Even on the days I can barely get out of bed and requiring me to take extra medication just to move. He keeps me moving forward and helps me push through it all. Because of Him I am walking again instead of being in a wheelchair. Because of Him I am continuing to improve even almost 4 years out. They maybe baby steps but they are steps. Don’t give up hope because each day we are given is another day for a miracle to happen.

What is Allodynia

Allodynia is a pain response caused by stimuli that normally does not cause pain (i.e., a shirt touching the area, a hug, or a brush of a hand). Temperature and/or physical stimuli can cause it to flare. It often feels like a burning sensation. It often happens after injury to the site (i.e., amputation of a limb), or like in my case having a Spinal Cord Injury and Chiari Malformation causing myelopathy. (Wikipedia, Allodynia)

There are days when the thought of getting undressed, then showered and then dressed again seems impossible. The burning sensation feels more like my skin is stretched and swollen to capacity then as I move it feels like it is being ripped open. If I have excess gas build up from something I have eaten, for example, my torso feels like acid has been poured on it. Of course, this is not what is happening, but when you move at all and the neurological response sends the pain soring to a 7 or more it makes simple daily tasks seem out of reach.

There are three main types of Allodynia. A person may have one, two or all three types of Allodynia. They are:

  • Thermal allodynia: Thermal allodynia causes temperature-related pain. Pain occurs due to a mild change of temperature on the skin (hot or cold/or both) For example, exposure to heat like being in the sun can cause symptoms to increase.
  • Mechanical allodynia: This where sensation caused something moving across the skin. For instance, bedsheets pulled across a person’s skin may be painful or a towel rubbing the area.
  • Tactile allodynia: Tactile allodynia, also called static allodynia, happens when something touches the skin. For example, a tap on the shoulder may cause pain for someone with tactile allodynia. (Pietro, 2017)

Allodynia may occur due to increased responsiveness or malfunction of nociceptors, which are a type of nerve. There are “pain receptors” nerves located all over the body which includes the skin, muscles, joints, bones, and internal organs. The nociceptors respond to pain and send the signal from the body part to the spinal cord and brain. With people who have spinal cord injuries the signals get confused so a touch can be confused as pain. (Wikipedia, Nociceptor) There are medical conditions which can increase the risk of developing allodynia, such as: Spinal Cord Injury, Migraines, Postherpetic neuralgia, Fibromyalgia, Diabetes, and Complex regional pain syndrome. (Roland, 2017)

There is no cure for Allodynia. Currently the treatment is aimed and reducing the symptoms. The use of Pregabalin (Lyrica) and other medications like it are used to treat other conditions like spinal cord injuries, diabetes, and fibromyalgia and are now being used to reduce the Allodynia pain along with lifestyle changes such as reducing stress. Getting plenty of sleep and keeping stress low as well as eating healthy can all help reduce the symptoms. (Pietro, 2017)

Personally, I have tired various methods and so far, I have not found the magic mixture. I currently 1500 mg of Gabapentin a day for the nerve pain in my legs which does not help the Allodynia much. I also take 75 mg of Lyrica three times per day as well which marginally helps. My daytime control is much better as I can maintain my pain level at a 2 to 4, whereas, at night I am at a 5 to an 8+. In the past I have tried Cymbalta, but unfortunately, about 6 mos. in it stopped working at all. I have also tried Amitriptyline which also did not help at all except to make me drowsy all the time. About 2 yrs. ago I began using CBD and I discovered that it does help. I have had to play with the amount I must take to get a therapeutic level and get pain relief. I am currently taking 16.5 mg 5 times per day. I still have horrible nights and I am searching for better overall control. Currently, I continue to use my Oculus Go when the pain is out of control. I find that after about 10 mins. my pain is bearable and in about 15 mins. I can remove the helmet and begin to move around again.

Living in chronic pain takes its toll on the body so it is crucial to find ways to relieve the pain and allow the body to rest. I passionately believe that I will find the answer. Each day I am given I will keep moving forward even if it is just a baby step. God has continued to heal me, and He gives me strength to face each day. I am blessed to have such a great family who love me and support me every step of the way even on the days I do not treat them as well as I want to. So thankful for their forgiveness and understanding.

Pietro, M. d. (2017). Allodynia: Causes, types, and treatment. https://www.medicalnewstoday.com/articles/318867.php.

Roland, J. (2017). Everything You Should Know About Allodynia. https://www.healthline.com/health/allodynia.

Wikipedia. (n.d.). Allodynia.

Wikipedia. (n.d.). Nociceptor. https://en.wikipedia.org/wiki/Nociceptor.

I will continue to believe

It is easy to lose hope and find all the things I still cannot do. Waking up every day in pain doesn’t help. Almost two years ago I had a very dear friend and pastor lay hands on me. He told me that my legs were already being healed and to believe. So, although it is easy to fall into the negativity trap I have continued to believe and have hope.

A few days ago, my husband and I went on a walk while staying at the beach and using my LifeGlider. I have really missed being able to do things like jumping, dancing, and running. I decided to try running. Now this is more like a super-fast walk, but I can say I am on my way. I still have a way to go, but God has brought me from no feeling from the waist down and the inability to walk to regaining some feeling and standing to walking and now almost running.

Although it is difficult to sometimes see the progress and healing, there are times when God allows us to see and feel it. Never give up hope. Have faith because answers our prayers on His time. I refuse to give up and will do my best to keep moving forward telling a better story.

Working to run again. It will happen with pratice and believing in what God has done.

Our pain is real

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Every day can bring something different. Sometimes days start with low pain only to have it increase throughout the day. Living with chronic pain is draining not only for the body but for our mind.

Because you never know when pain is going to go from 3 to 7+ you worry about where you are going or who is going to be around. Are you going to be in public? Are you close to home? Is the a place where you can attempt to get some relief?

When living with chronic pain there are so many things to consider. Yes, medications do help some, but they never relieve the pain fully leaving us to find ways to cope.

Yoga and other forms of exercise can be beneficial. Learning to breathe and stretch can help during spasms allowing some relief. Everyone is different and we must all find what works for us.

Our struggle and pain is real even if we don’t look ill. Most people living with chronic pain do there best not to show it and to stay positive. But when we have high pain days and can not do much don’t call us lazy or think we are faking it . Instead show compassion and understanding. Pray for us in those moments and let God’s healing hands do the rest.