Tag Archive | restless

Pain Is it real or just in my head

As I awake each morning my body reminds me of how damaged it is because the pain never seems to go away. But the question I continue to ask myself is, Is my pain real or just in my head? I ask myself this because I have been told repeatedly 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?

Over the past few years, I have been to many doctors which deal with my physical conditions of incomplete spinal cord injury, arachnoid cysts in my thoracic spine, Chiari malformation 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 all in my head and is going to go away. Regardless I am still left with the “real” limitations that my pain creates.

Some days I can move around with less pain than others. Often, I get asked questions like, why is your pain better? Why aren’t you hurting as bad? Why are you moving better? The response of ” I don’t know” never seems acceptable.  Instead I often hear comments like- 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 every day 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 every day would be better?

For now, all I can do is keep moving forward by continuing to deal with my pain by taking my prescribed medications at the same time daily, stretching and doing balance exercises to help strengthen my brain’ s communication with my legs and back. Right now, my brain still doesn’t fully realize I even have legs. For example, if I stand at the kitchen counter without looking down at my feet periodically my brain sometimes forgets I am standing, which causes me to fall. This is caused by the loss of proprioception in both legs.

The communication from my brain to my nerves is also on overdrive causing my nerves to overact. This causes the skin on my back, stomach and upper legs to feel like it is being stretched, sliced and 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 which normally has very little feeling to feel like there are a million spiders with sharp needles on theirs legs are poking me repeatedly.  I am prescribed Gabapentin 700 mg three times a day for my neuropathic pain in conjunction with other pain medications which I take every 4 hours to “help” control the pain. None of this works well. I find that the pain medication takes about an hour to start working then only work 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, is my pain real or in my head? I say both.  The pain is real, but it can be exacerbated by my brain response to stressful situations and by physical changes. For example, if my body is fighting a cold my pain often increases until the illness runs its course. Stressful situations often lead to more pain. It is easy for me to start doubting myself and lose my perspective therefore, creating stress and more pain. But because I have hope that I will get better, whether it is via a new medication and/or treatment or answered prayer I will 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, they 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 a few short months after my 8th surgery.  Currently, I still walk with a walker, but I can walk some without any assistive devices. I refuse to give up as I know God will keep His promise and we all have a better story we can tell.

Weekend Relaxation

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!

Another day

So thankful to be alive another day. I only wish I didn’t have to live in pain all the time. Even with pain meds I can’t control the pain. Living with a spinal cord injury is not what I planned for. Nobody plans for this. Who would want to wake up everyday with a pain level of 5+? Who would want to find it difficult to even stand or walk? I realize that there are those who can’t even walk. I am thankful that I at least am able to walk with a walker and I am working on improving my ability by going to physical therapy three times a week.

Even so the questions keep coming. When is it my turn to wake up not hurting? Will I ever get a break from the pain? Will my legs ever get better? Will I ever get feeling back in my right leg? Will my proprioception ever get better? When do I get to run and play with my grandchildren or will I ever get to kick a ball with them? These are just a few of the questions that run through my head daily and sometimes several times a day.

Some days it is hard to deal with it at all. Just getting up and taking a shower takes all I have sometimes. First, just getting undressed is extremely painful. Taking my shirt off feels like the skin on my back is being sliced open by sharp pieces of foil. Next, the water that should be refreshing feels like spiked fireballs hitting my skin.Then drying off feels like being my skin being dried off by sandpaper. So you can only imagine how hard it is for me to put clothes on. I put on my Lidocaine pain patches first which is a not an easy task. I have to balance myself and use both hands to apply the patches to my back in the areas where the burning and pain come from.  Often it takes several tries to get them on correctly, on days when my husband is home he helps me. This task alone causes extra pain, but eventually the patches help to reduce the pain some by numbing the area some.

I hate having to take so many medications. I take Baclofen 20 mg three times a day to help reduce the spasms in my back and legs, Gabapectin/Lyrica ( changing  meds slowly), OxyContin 30 mg every 8 hrs., and Oxycodone 15 mg every 4 hrs as needed for break-through pain.  I also have to take Senna 2 tabs every morning along with Miralax and Metamucil to help keep myself from getting constipated as taking all the narcotics slows my bowls done. Even so, my pain is often not controlled well. This makes life  difficult and causes me not to be able to do many of the things I like to do.

Getting out with family and friends is very difficult. Most people don’t understand the amount of discomfort I am in nor do they understand how to be around me. Yes, I need help with some things but not everything. People tend to want to help by treating like I am incapable of doing anything. For example,  I can walk with a walker slowly, but I don’t need to be held like I am going to fall over. I can also walk up and down stairs fairly well and don’t have be held up. But when I need to stop and rest, I need to stop and rest not be treated like I am falling over or I am about to die. What people forget is that doing as much as I can for myself is important. It helps me recover and feel a sense of accomplishment especially since I have lost the ability to do so many things. Feeling like I have value is important to recovery. I only wish those around me understood that.

My hope is that people who read this will understand that if they or someone they know is going through anything similar that they are not alone and that are others that understand what they are going through. Whether it be pain or loss of function or both, we still have value. We still want to be treated like we count not like we are fragile and incapable of contributing. Yes, we may need more time to complete a task, but give us the chance and if we need help we will ask for it.