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
Catching a cold normally would not bother me much, but since my spinal cord injury it causes all kinds of issues. I can deal with the sore throat, runny nose, and congestion, but the extra pain and spasms it causes are unbearable at times, sending my pain soring to an 8+ at times. The overall skin sensitivity is also elevated making it difficult to get dressed and move around.
Most people when they catch a cold are still able to somewhat function and don’t have to worry about loosing bladder function. Unfortunately for me, getting a cold means stronger more severe muscle spams in my back which then trigger my bladder to want to empty. Even if I have just gone it will still trigger the response and I have to make a mad dash for the nearest restroom. Just another fun issue associated with living with a spinal cord injury.
Having a cold also reeks on my spasticity. It increases the muscle stiffness and the rate at which my muscle tire. Most people tend to tire more easily when they have a cold, but they can continue to do things like go to work or pick up a bit around the house. For me, it makes just getting out of bed a massive task. The stiffness in my legs is intense and makes them feel like they weigh 100 lbs a piece. Walking becomes more difficult because my legs feel like they are dragging through heavy cement and my balance is reduced even more than normal.
Being sick with a common cold suck for everyone, but it has much more of an impact on those of us with impaired bodies. From increased pain and exacerbation spasticity it is not just a simple cold. The only way to stop it is prevention. I do my part by washing my hands frequently, staying away from those who appear to be ill, take my supplements drink plenty of water and get plenty of rest. Now all we need is for others to do their part-Stay home when you are sick and do not share your germs.
The gorgeous sunset tonight. Enjoying the view while navigating the pain and spams. Have enjoyed the day watching my grandkids and nephew hang out and boogie board. So thankful for the special moments when my pain is down. Ugh!!!!Spams and burning. Man it sucks! The pain often interrupts my life in so many ways. Doing my best to enjoy as many moments as possible. God has painted the sky yet again!
Taking time to relax and rest. After a week of being sick as well as dealing with the daily issue my hubby and I are enjoying visiting our family and relaxing in New Port Beach,Ca. This will be our view for the weekend. Hoping this will bring more healing into my body. Enjoying some of the wonders God has given us!
At about 9:15 pm Wednesday my pain climbing to an 8. I was hanging with the family and my left side just below my shoulder blade began to spasm which then triggered the burning sensation. This was one of those times where the burning rolled down my entire left side leaving me feeling like my skin was being stretched and slitting open. I had taken my night dosages and they weren’t helping much. So with my husbands help I got into bed and placed the VR helmet on and played one of my favorite games Pet Lab.
As I began to play my spasms continued for about 10 mins, but they were not lasting as long and the severity was lessened. I had gone from an 8 to a six . I was immersed in a virtual world of making and train monsters. In Pet Lab you have orders to fulfill. So you take an egg and you follow the recipe on how to hatch the little creature. Once hatched you then take to you mixing room and you add features like change the color of the monsters fur color or had horns. Sometimes you have to increase the little creatures ability and take it to the training room. Once you complete all the pieces to head back to the shop and send it to the individual that ordered it. If you complete the order precisely you earn money which you can then use to buy items for future creature making. As you can tell Pet Lab requires focus.
The focus and immersion cause my brain to change course. The interruption of pain signals helped reduce my pain. At about 15 minutes into the game Wednesday night I noticed that my pain level was reduce from a 6 to 4. At a 4 I was able to take the helmet off, get comfortable in bed and drift off to sleep. I am thankful to have found another tool besides more medications to help reduce my pain. Who knows, maybe overtime the use of VR to interrupt the pain signals will trick my mind to stopping my pain and spasms completely allowing me to reduce the use of opioid medications.
Every morning I wake up I am so thankful to have another day, but I know that I will have to deal with the muscle spasms and the unrelenting burning pain. I start my day at 5 a.m. with taking my cocktail of meds.: Baclofen for spasticity, Gabapentin for neuropathic pain, Oxycodone for pain, and 1:1 CBD for pain and spasticity. Throughout the day and evening, I continue to take my prescribed medications, but often at some point during my day and/or night my pain reaches a 6 or more on the pain scale. So to disrupt the pain signals being sent from my brain to my back and legs I use VR (virtual reality). I use the Oculus Go and immerse myself in VR by doing things like swimming with manatees, creating monsters, traveling, meditating or any other variety of things.
So when my pain starts to climb even after I have taken my medications., I grab my Oculus Go, put the device on, and open the program I want and begin interrupting my brain’s pain signals. In about 10 minutes, I notice that the my pain and spasms have diminished. I usually will continue to use the VR for about 45mins. to an hour . By this time my spasms have stopped and my burning is down to a 3 or 4. I can then take the device off and continue with my day or at night go to sleep. Note: At night I mostly use relaxing programs like meditation or swimming with the manatees or dolphins in Ocean Rift.
The Oculus Go is a contained unit. Meaning you do not need a phone or computer to use to use it. This is perfect for me as I use it sitting down or lying in bed because of my spinal cord injury. The more immersive the program the better. Warning: It can cause motion sickness especially the first time you use it. This briefly happened to me in a floating game I tried. I now able to use the game and have not had any further issues with feeling light-headed or dizzy. I have been using my Oculus for about 3 months. So far, I love it and it offers hope to being able to reduce my pain.
Me on my Oculus Go