Tag Archive | spasticity

Our pain is real

www.instagram.com/p/CEzIOshjxSX/

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.

Little steps

Yoga continues to be a must for continued progress in regaining more stability. Because without proprioception and balance just standing is difficult. Each day continues to bring challenges whether it is high pain, increased spasticity, or both. Yoga helps with reducing spasticity through stretching while reducing pain through breathing and relaxation. There are times on high pain days where all I can do is rest, but whenever possible taking time to do at least 30m mins. of yoga seems to help me to continue to progress. 

When I first started I could barely lift my leg/legs and had to hold on with both hands. My body is gradually regaining more balance and proprioception allowing me to tell where my leg/legs are in space. This is crucial for walking.

Being able to balance and lift my leg behind while holding for 3 full breaths is such an improvement. I can feel my leg and ankle adjusting while I hold the position. This is also being done without engaging the breaks on my walker making use my core.

As you can see, I can elevate one leg high than the other. Because of the loss of proprioception and balance on the left side of my body it is much more difficult to engage fully.

Yoga continues to be a must for continued progress in regaining more stability. Because without proprioception and balance just standing is difficult. Each day continues to bring challenges whether it is high pain, increased spasticity, or both. Yoga helps with reducing spasticity through stretching while reducing pain through breathing and relaxation. There are times on high pain days where all I can do is rest, but whenever possible taking time to do at least 30m mins. of yoga seems to help me to continue to progress.  I am so thankful for all God has brought me through over the past few years. All glory belongs to Him!

 

 

Getting back to “normal”

Having the ability to cook without worrying about falling has helped me feel more confident. Using my LifeGlider has given me the use of my hands while having better balance. I have always enjoyed cooking for my family, but when I lost proprioception and balance it was almost impossible to stand and cook using a regular walker because I had to constantly had look a my legs/feet so that my brain could register where my legs were at all times otherwise any slight weight shift would send me falling. So blessed to have found a great device that allows me to stand up straight, walk more correctly all the while being safe.

Love each other…

Love each other with genuine affection and take delight in honoring each other. Romans 12:10 (NLT)

 

Love and honor each other. So simple, yet it often appears that people cannot understand nor follow this. All you have to do is open up the newspaper or turn on the news to see how people treat each one another. During these trying times it would benefit us to take the time to respect and show compassion to one another. So often people are so caught up in their own point of view that they cannot and do not take the time to consider the other side. 

Recently, I personally have experienced nasty comments and bad behavior instead of love and understanding because I defended the “continue to wear face masks” view. Instead of taking the time to understand why I supported the “ continue to wear face masks” point of view, people told me: “butt out”, “ there’s no real risks because the media is lying”, “your stupid for listening to hype,”  “continue to follow the herd” and many other negative comments. Not once was I asked why I believed that wearing face masks was important instead it was negative comment after negative comment. Even when it was explained the response was, “then stay home” and other unpleasant words.  Why must I be forced to stay home and not enjoy the occasional outing with my family?

It would benefit all of us to love and honor each other regardless of our opinions. There is no reason to be hateful and disrespectful to one another. We all have our own agenda, but there is no reason we cannot take the time to understand the why and maybe learn something new. Taking the time to listen and respond with understanding even if our opinions differ can change the mood. After all, we were all given free will so why not choose to love and honor each other regardless of our opinions? Showing others affection and honoring them does not take a lot of effort, but it can change the way we interact and may even turn a negative situation into a mutually beneficial one.

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. Spinal Cord Injury or amputation of a limb), like in my case.

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. Spinal Cord Injury or amputation of a limb), like in my case. (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. Of course, this is not what is happening, but when you move at all and the neurological response sends the pain to about a 7 or 8 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. They are the “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 700 mg of Gabapentin for the nerve pain in my legs which does not help the Allodynia. I have tried Lyrica as well to no avail. I have use Cymbalta in the past, but unfortunately, about 6 mos. in it stopped working. I have also tried Amitriptyline. I began using CBD and I have found that it does help. I currently take 10 mg 5 times per day. I still have horrible nights and am searching for better control. I currently 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 firmly 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 don’t 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. s