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. We cannot take responsibly for things we cannot control. We must let go of the guilt and focus on the things we can control.
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. Yes, I really do struggle with admitting I have a chronic illness, but my body reminds me every day. I am learning to change the” you’re a failure because you can’t… “story into look at what you are overcoming and continuing to do.
It takes constant reframing of my thoughts. It is so easy to see and hear the negatives. It is important to recognize and deal with what you are feeling.Hiding and pushing your feelings aside only keeps them festering and making the story you hear in your head seem far worse that it really is. By reframing the negative thoughts and feelings we can continue to keep moving forward. For example, When those around you who believe they are being helpful constantly say things like- “Your standing with your knees locked “followed by “you’re not picking your feet up” or ”Get your feet under you , you are leaning to far forward.” And of course, I can feel the issues because my balance is off, my legs buckle and just standing is difficult. Instead of focusing on the negative I do my best to reframe my thoughts to something more like, “Look at you, you’re standing,” or “Wow, you just walked up hill and it was easy.”
It is perfectly okay to Give yourself a pass. Again, understand and realize that you are not choosing to do something. All of us that live with chronic pain/illness must accept that our bodies don’t care if we have plans. Our bodies are going to do what ever they want. So, take the time to rest and recover so that there will be better days ahead.
Be sure to treat yourself with kindness. Reframing your negative thoughts into positive ones helps tell a better story which will impact our emotional state. Remember our brain is powerful and it impacts what our bodies physically feel. Higher stress levels means more pain and a reduction in our ability to deal with the pain.
Reminding yourself and finding the things you can do is also of value. Pain often interrupts our plans, but instead of getting angry and down focus on the things that you have accomplished during the day. We cannot fix the past, but we can adjust and make changes to our future. Find things like painting, gardening, or other hobby to get out and meet others or to relax.
Every step I take is a miracle that God has given me, and it is so easy to lose sight of how far I have come. It is easy to let the negative thoughts and guilt in and start believing them. This affects my mood and my pain levels. Learning to reframe my thoughts, pushing all the yuck out helps reduce my pain levels, makes for a happier day to day life, and makes my mood much better. Stop feeling guilty about the things you cannot control because this only stops you from moving forward. I encourage you to let it go.
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
As someone who deals with Fibromyalgia daily there are just some things I wish people would stop saying to me and others that have the illness.
1) Fibromyalgia isn’t a real disease. Well, let me say for all of us who suffer from it, IT IS REAL! The pain and fatigue are real. The sleepless nights are real. Also, the FDA has approved medications to treat Fibromyalgia and they generally don’t approve medications for imaginary illnesses.
2) We all get aches and pains as we get older. Yes, we all to get more aches and pains, but the pains most of us with Fibromyalgia feel are intensified. And for a great many of us we begin to experience pain at an age when we shouldn’t hurt.
3) If you sleep more you will feel better. Well, sleep is important, but unfortunately the ability stay asleep is a challenge. Often even after a full night of sleep people with Fibromyalgia still do not awake refreshed because the body does not get into the deepest stage of sleep. Therefore, even if you manage to stay asleep for several hours, you’re most likely not going to awaken feeling refreshed. This is the reason that sleep aids are often prescribed.
4) You need to get more exercise. Most fibromyalgia treatment plans include exercise, but it must be approached slowly and carefully to avoid triggering a flare.
5) You don’t look sick. If I we let ourselves go and really showed how bad we feel then people would not want to be around us. Yet, when we try to focus on feeling better and but on a “brave face” then we do not look sick. I know that for me personally when I do my hair and make-up I tend to feel better even if I have to rest afterwards.
Our families and friends mean well. This is a note for them. Please be considerate and think before you speak. It is not easy for those of us with the illness. It can also prevent a very negative response for the person with the illness. People tend to be a bit grumpy when they do not feel at their best.