As each day passes my physical pain never seems to go away. The question I ask myself is, Is my pain real or just in my head? I ask myself this because I have been told over and over again that, your brain controls everything and you have the ability to control your brain. Well, when you have a physical condition that creates pain how does that constitute that your pain is all in your head?
I have been to so many doctors over the past few years that deal with my physical conditions of spinal cord injury, arachnoid cysts in my thoracic spine, and nerve damage related to the 8 surgeries to decompress my spinal cord. Some of my doctors recognize that my pain is real and others like to pretend that my pain is going to go away. Regardless I am still left with the limitations that my pain creates.
Some days I am able to move around with less pain than others. Often I am asked, why is your pain better? Why aren’t you hurting as bad? Why are you moving better? The response of ” I don’t know” is never acceptable. Instead I often hear, Well, you’re the only one that tell us why Or What did you do different? When I explain that I have done nothing different, that I have taken all the same medications in the same order as I do everyday it is still not acceptable. The frustration is beyond what one person should have to deal with. Why don’t others get that if I could figure it out I would duplicate it so that everyday would be better?
All I can do is keep moving forward. Continue to deal with my pain with the use of medications, natural remedies, and daily exercises to help strengthen my brain’ s communication with my legs and back. Right now my brain doesn’t fully realize I even have legs. With the loss of proprioception in both legs, my brain forgets things like I am standing, which causes me to fall if attempt to do “normal things” like try to stand and take a picture or walk without look down at my feet or legs.
My brain is also hyper over sending signals which make my nerves overactive. This causes my back to feel like my skin is being stretched and it is on fire. Even the slightest touch feels intense and painful. Putting on clothing hurts to the point of giving me the chills at times. It also causes my right leg that is almost completely numb and heavy to feel like there are a million spiders with sharp needles on theirs legs to keep poking me repeatedly. I am prescribed Gabapectin 700 mg three times a day for my neuropathic pain in conjunction with Oxycodone 15 mg every 3.5 hours to control pain. None of this works well. I find that the Oxy takes about an hour to start working than only works at its full capacity for about two hours then decreases quickly. This leaves me in pain most of the day. It is often hard to get motivated to do much or to really want to be around people.
So what is left? Self help and prayer. It is easy for me to understand how depression can set in for quickly. This is where the power of prayer and hope come in. Continuing to have hope that I will get better and that new medications and/or treatments will be discovered to help me and others like me are what keep me moving forward. God has promised that if we have faith and ask Him to heal us that it will be done. ” And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, the will be forgiven” James 5:15. Having hope is what helps me continue each day even though I know I will wake up in pain and end my day in pain. My prayers continue to be answered as each day I improve even if it is only a small bit. I went from being mostly in a wheelchair to walking with a walker in just two months after my 8th surgery. I refuse to give up as I know God will keep His promise.
It is now just over two months after my 8th surgery in less than a year decompress my spinal cord from Arachnoid Cysts which have been compressing spinal cord. I continue to have almost no feeling in my right leg other than it feeling heavy. I have lost the ability to feel hot and cold on my right leg from the waist down with one exception of a small space on my inner calf where I feel touch and slight temperature. My left leg is numb in the thigh area but mostly has feeling. I continue to have proprioception loss in both legs. What all this means is that standing and walking are extremely difficult even with assistive devices such as a Swedish Knee Cage, ankle braces, and walkers. The most frustrating part is that after all of this the amount I pain I have is unexplainable at times. I live at a pain level of 4 to 5 most days with it increasing several times during the day to about an 8 sometimes more.
Proprioception loss means I have difficulty knowing where my legs are in space which affects my ability to know the position of my legs. This affects my ability of motion and equilibrium. For example, if a person is blindfolded they can tell if the leg/ arm is moved up or down or to the right or left. They also know if their toe is up or down. With the loss of proprioception I cannot do this. Through therapy proprioception can be improved. I am currently working on this yet again. Some of the things I do is wear weights around my ankles when I walk at home. This does two things. One it helps build the muscles in my legs and hips which became very weak after my surgeries. Two it gives sensory input into my pain by on my leg and hip as well as giving it a different feeling. Another thing I do is the spell out the alphabet in the air with each foot several times a day. This also helps make connections between my legs/feet and brain. I also do many other exercises at home and at therapy to improve my muscle strength and coordination.
Along with the proprioception problems I continue to have lots of pain. My pain now appears to be more nerve pain with less spasms. My nerve pain feels like burning. My back often feels like it is on fire. So often when I walk, each step sends signals of intense burning running up the back of my leg, through my buttocks and up my back mainly on my left side with it radiating to the right side at times. There are times that even while sitting do nothing or sleeping that the intense burning sensation happens. By the end of the day I am exhausted because of the pain. I am currently taking several medications to help combat the nerve pain as well as the pain caused by my spasms. Currently I take Neurotin 700 mg three times a day for the nerve pain as well as Oxycodone 15 mg every 3 1/2 hrs. with acetaminophen 325 mg. Yet, the pain continues to be intense and out of control at times. I have already tried Lyrica, Cymbalta and amitriptyline with no real impact. The side effects of the medications were awful. The worst one was Cymbalta.
I am not sure what to do next or if there is anything out there that can help. It is frustrating and at times debilitating. All I can do is pray and ask God to protect and continue to heal me. I have gotten through each day by God’s grace even the days when I have a huge set back such as a fall. God has prevented me from having any new injuries and kept me from having to have another surgery. His love is what keeps me going each day. I am thankful He is with me. May He continue to love me and help me. My faith is sometimes weak and I want to give up, but He doesn’t let me as His presence is felt and I get a renewed push forward.