Tag Archive | Allodynia

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.

Smile even when you think you can’ t

During the times when the news is negative, and people fail to treat each other with love and respect we can still live with joy and smile. Often my days are long, and my nights are short and restless because my pain is all over the place thanks to living with an Incomplete Spinal Cord Injury and Chiari Malformation, but I still have joy and can smile because God has promised that I will be healed and  will succeed. He gives me each day to enjoy all the little moments even through the pain.

I pray of ten for total healing. A healing that will take the muscle spasms away, the leg electrical zaps, the pain of 6+ that I fight several times a day that include allodynia on most of my torso. and one that will give me the total use of my legs. Although that t day has not come yet I know it will. But God has performed many great things in my life. He has taken me out of a wheelchair and given me the ability to stand and walk with a walker and at times without one. He has allowed me to continue to use my hands which allow me to paint, draw, take photos, but most of to hug all those around me so that I may spread the joy and love.

No matter what life throws at us there is always something to be thankful for. Even when life feels like we are walking through the mud with extra weight on our backs we can still smile and have joy because the little things matter. The smiles we share, the hugs we give to our family, the elbow bumps we share with our friends and/or co-workers. If we focus on the good the and keep moving forward, we will soon find ourselves on the other side of all the bad. So, smile even when you don’t believe you can and start telling a better story. His promise is real.

Hope and Not Guilt

It has been difficult to get motivated to write or do much of anything being that I have been more pain than normal. I am having a flare up that has caused by pain to remain high despite medications. My spasticity has also been high making it very difficult to walk and stand. I do my best to stay positive and not get grumpy or angry. Unfortunately, no matter how hard I work at it the guilt mixed with the pain wear me down and I do snap at those around me. Of course, this causes even more guilt. Learning to let the guilt go is hard but necessary. Flare ups for anyone living with chronic pain, be it from a SCI or an illness like Fibromyalgia, cause not only physical pain, but mental as well. For me it is difficult because it means not being able to take care of my family the way I normally do. It means not being able to do something I love, cook a meal for my family. Heck just getting up, showered, and dressed are major feats. But the physical limitations often lead to feelings of guilt and inadequacy. It is easy to see all the negatives-I can’t make the bed, I can’t get the laundry done, I can’t pick up around the house, I can’t cook a meal, and I can’t… All these negatives creep in over time, but it is important to change that running line in your head to a more positive one and realize that you really do have an illness. When anyone of us get a cold or the flu we take medications to help and allow ourselves to rest. So why is it that we cannot do this when we have a flare up of symptoms? Admitting that I really do have an ongoing illness continues to be difficult, but through prayer and learning to give it to God I have been able to continue to move forward. Changing the” you’re a failure because you can’t… ” story into look at what you are overcoming and continuing to do is crucial. Everyday we have a choice to live, find the positives, and keep moving forward or to focus on all the negatives and give up. We all have a purpose even if we don’t realize it yet.

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

Moving forward

Made it to the gym! When I awoke on Thursday I wasn’t sure I would make it. I had a rough night on Wednesday because of pain. My left side spasmed and burned at an 7 to 8, off and on most of the night despite taking my extra medication. When I awoke on Thursday I immediately laid back down because I was dizzy and I got nauseated. After about 30 mins. I was able to get up. I got myself ready and headed to the gym. I still was not feeling 100%, but I knew not working out would slow my progress down.

I started off by warming up on the treadmill for 12 mins. I realize that this is not very long, but for me it is a workout especially with it inclined at 5.0. For safety, my trainer stands by me the entire time. We then worked our way over to the TRX (Total Resistance Exercise) area. I do 4 sets of 12 to 15 reps of squats (sit to stands). This exercise is still very difficult for me. I have to be very cautious as doing any exercise that engages my back has the potential to set off my spasming which then leads to the burning (Allodynia). As you can see below that working on the TRX takes energy and a lot of concentration. My right leg wants to turn in instead of out when I squat/sit.

Working on

the TRX

machine

I then moved on to working on some coordination exercises which engage my brain and muscles. The only way to build new pathways is through repetition and concentrating on what I feel and don’t feel.

Simple leg lift-not so simple for me. Hard to control my legs.

Simple tasks

take a lot of

effort.

I will keep working on building new pathways and helping my body heal. I am continuing to crawl daily and practice getting up and down off the floor. I really miss things like dancing and running, but I know that with hard work I can get there some day. God continues to heal me and get me through. Without God and my wonderful family none of this would be possible.