In the middle of the night I woke up with a back spasm. I know that is nothing big for “typical” person, but for a person in chronic pain, being woken up at all is bad. I don’t believe a person in as much pain as I am in can get into a normal sleep cycle at all. So if I get interrupted somewhere in the sleep cycle, then a few things happen:
- Excruciating pain that cannot be ignored and sometimes cannot be stopped comes stampeding back. The cramp might go down but then my mind is awake and aware of the full body pain which I try to ignore when I am awake. It is impossible to ignore when you are half asleep and not prepared. (it takes quite a lot of preparation during the day to meditate and ignore the pain.)
- I wake up my husband who also doesn’t get enough sleep because I am whimpering in my sleep or reaching for him constantly. He has to be ready to get up and get me a pill, an ice pack, or whatever is necessary to help me
- I might not go back to sleep-
If #3 happens, that is the worst. If I don’t get enough sleep, which some days might be 14 hrs, as I have chronic fatigue as well, I cannot function at all. By function I mean sit up, walk, do anything on the computer. It takes a lot of energy to ignore pain and keep pain under control.
Many of my friends and family don’t know what I go through so I thought I would be specific.
First I want to describe what my disability is and how I acquired it. I have arachnoiditis. I also have hashimoto’s thyroiditis and fibromyalgia, Degenerative Disc Disease, SI Joint Dysfunction, and Connective Tissue Disorder among other diagnoses’; but the AA (Adhesive arachnoiditis) is my number 1 problem. I got it from getting steroid injections into my back. I was lied to by a “pain specialist” and was told I would not be given pain meds unless I got the injections. Yes, I was bribed and from what I read on many of the facebook groups, it is a common occurrence. Little did I know that the injections of steroids into the spine is against FDA regulations even now in 2016 (I had mine done in 2011). Also, you are only supposed to have 3 a year. I had 12 in 10 months. All of mine were done with twilight anesthesia. Every time I got an injection, I hurt worse. Plus I would get fevers, and I would feel lightning bolts going down my legs, and the feeling of bugs crawling and my left leg started to hurt when it hadn’t hurt before. For me, a person with a legitimate bug phobia, it was a nightmare! Constantly slapping my legs thinking something was crawling on them and then it started to feel like bees stinging me all the time. When I mentioned this to the doctor, he just waved it off and said this was normal. However knowing what I know now, at some point, he had to have punctured my dura and injected steroid into my spinal canal.
Now granted at that time, I didn’t know what a “dura” was. For those that don’t know, the dura is a thick membrane that is the outermost of the three layers of the meninges that surround the brain and spinal cord. Inside the spinal cord is a pristine environment. It has cerebral spinal fluid (CSF) and nerves that dangle down and rope around called meninges I believe. If a foreign object enters the spinal canal, especially something harsh like a steroid, it causes those nerves to stick together like spaghetti.When that happens, it destroys connections to the legs, the arms, even the brain. It causes havoc with the body. As you may have been taught in school, the brain and spinal cord run everything in your body. It is the central nervous system of the body. Central nervous system, central nerves, meaning it controls all the nerves of the entire body. If the nerves become compromised, it wreaks havoc on your entire body. Click here to read about Arachnoiditis on WebMd
So in 2012, after he gave me all the blocks and injections he could and I was hurting worse, he decided to get another MRI done because it had been a year since the last one (and he was stumped, nothing was helping me). A year of him telling me it must be in my head. A year of excruciating pain, but mind you, I was still working from home as a support engineer and software tester. After the MRI, I never heard from my doctor again. Instead, I got a call from a surgeon’s office asking to make an appointment. Apparently they found something on the MRI, that had been there all along. Imagine that I could have skipped having all those injections had someone just known how to do his job right! You see, whoever read the first MRI, a year prior to all those injections, missed that I had a grade 4 tear in my L4/L5 disc!
Imagine your disc like a Jelly filled doughnut and when you squeeze the doughnut, the jelly starts to come out. Well depending on the size of the hole, more or less jelly might come out right? Same with a disc. In your back, in between vertebrae, are your discs which are filled with a gelatinous fluid. If there is a pinhole size hole, that is a level 1 tear. The levels only go out to 5. Mine was a 4. Most of the fluid in my disc was out, and since it has acid in the fluid, it burns the surrounding nerves and tissue. This is why my pain was a burning pain.
WELL moving on, surgery on your spine isn’t cut and dry like it is for say, an appendix. Don’t let any doctor tell you any different. They can’t guarantee the pain will go away or if they are even operating on the pain generator! So for 2012 I literally went insane and ended up in a mental hospital for a week because I was in a lot of pain, I was still working, my husband got laid off, and I was afraid to die and leave my kids. I had a lot of anxiety. All that year I contemplated surgery and googled and joined every Facebook group, trying to learn everything I could but I still didn’t know about arachnoiditis.
However,by getting therapy I remembered and found God again, and by doing that, I was no longer afraid of dying because I knew he would take care of everyone. By then it was 2013 and I had a second opinion from another neurosurgeon who only wanted to do one level and not two (I had a discogram, the most painful procedure I’ve ever had next to the surgery which I had no pain relief for for 3 days). The discogram is a diagnostic procedure that helps tell the doctor which disc is causing pain. I screamed when he injected saline into L4/L5 and S1 but it was the same stupid doc that had given me the injections so he wrote he thought only L4/L5 was the bad one. Here I am in 2016 with S1 herniated. UGH!
The short of it is, the surgery only made my arachnoiditis worse and the surgeon did something wrong because I woke up with both legs numb/paralyzed from the thighs down. Eventually when “feeling” came back months later (I walked with a walker for 3 months and dragged both legs), it was bug crawling, water trickling, lightning bolt electricity coming up and down both legs and my SI joints feeling. When I saw my surgeon for the 3 month follow up again he tried to dissuade me from asking the questions about why my legs were still having weird feelings.
Now how I live. I am bedridden 90% of the time. I can sit in a comfortable recliner, if I have icepacks, for about 2 hrs. That is on a good day. So all day I am in bed. If I try to walk without a cane or a walker, I have excruciating pain running down my pelvis, around to my SI joints, and into both legs. I interchange 6-8 ice packs throughout the day with the help of my adult son, who is autistic, but a great helper, and my husband when he comes home from work. I cannot drive, cook, or clean. I have a shower chair that I use with a shower head holder that allows me to take showers by myself but it is so painful, I only shower once a week if that. The rest of the time i use wipes or wash clothes.
This is my existence. The ONLY time I get to “get out” is when I am going to the doctors or once in a while, my husband takes me to a movie at the local theater which happens to have electric reclining seats. It’s the only theater I can go to because of the comfortable seats. We put my power chair on the electric lift on the back of the car (which cost us $1500) and when I get to the theater, I ride it into the theater room and then transfer to the reclining chairs. I do this because the cushion on my power chair is not soft enough to be comfortable and due to the nerve damage in my feet and legs, there are things poking me that make it uncomfortable to ride in for very long. Don’t get me wrong though, when I decided to get it, it became the best decision since becoming disabled. It allows me some independence and less pain then if i were to use the walker.
First let me describe the nerve damage that I incurred from having a spinal fusion. My legs from the knees down feel like they are on fire 24/7. More so, they feel like they are on fire, then the fire is put out and my skin is dripping/sloughing off, then someone comes along and uses a electric sander on them. That is how they feel. My feet (oh my feet!) feel like I am walking on glass. All day long there is an ice pick is stabbing me in between the toes. The top of my feet have the same burning feeling, but add a prickling, ant bite feeling to it. That is how my legs and feet feel all the time with no relief. (This is WITH having pain cream and medication)
Then there is my back. The pain only got worse after the surgery. The pain is a “burning from within” feeling. If you can picture a nerve with a Bunsen burner underneath it, that is how I picture it lol! This nerve looks like a pitch fork with a handle but with 2 tines, one on the left, and one on the right. The Bunsen burner is right in between the two, heating up each side. Now picture that the two tines are nerves that go down through my sacrum and down around my SI joints (the sit bones) and the tailbone. The burning is always there. Another way you could describe it is…well you know that feeling you get when you are exercising (maybe doing deep lunges) and your thigh muscle and gluteus maximus starts to burn? You know how it gets to the point right before you have to quit because it hurts? That is the burning I feel in my back, butt and tailbone. Only it never ends.
Sometimes, there is the deep ache. Maybe you have had that feeling like when you bend over and go to get back up and your back says No…and it “catches”. It’s a sharp pain at first but then mine just settles in and if I move the wrong way, I am doomed. If I don’t have that deep ache, I have the burning, and sometimes I have both and if I don’t have that, then I can’t sit because my tailbone sometimes gets sore.
Then there is the fibromyalgia pain. I was diagnosed only 2 months ago as of this writing July 28th 2014. I have learned that there are 18 tender points and I have 11 of them. Basically, I hurt to be touched. If you squeeze me, say on the arm, it feels like you are putting 10 times more pressure than you are. I guess that’s why they call them tender points. It makes it very hard to find clothing that doesn’t “hurt” to wear. It also makes it hard to have a relationship with friends (no hugging!) and with your husband (ahem!).
If you look at the image on the right, my tender points are on my elbows, hips, Sacroiliac joints, inner knees, chest, and shoulders. Once I learned the gluteal area (numbers 17 and 18) was part of the tender points, I realized I had double trouble since I also have SI joint dysfunction. (<—click the link, lots of good info there)
Finally there is the joint pain. I have an autoimmune disorder called unspecified connective tissue disorder as well as hashimoto’s thyroiditis. It is my body under attack…from itself. The pain can be described as an achy feeling in all of the joints. First, again, there is swelling around the joint, and swelling causes pressure on the joint, which makes the joint ache. Think of the pain that you have when you stick your hand in ice water, or go outside when it snows without gloves and make a snow ball. At first it is cold, then it burns, and then you have this ache. That is the joint pain I have. Every joint in my body, from my toes, on up to my neck (basically anything you can bend or twist) hurts me. All the time.
I take narcotic pain relievers and pain cream as well as use ice packs throughout the day for my back. I have good days and I have bad days. Us chronic pain people use a number system you might have heard of it. It’s called the “Pain Scale”.
My number is on average, a 5. Very rarely do I go under that. On a bad day I am an 8 or a 9. If I am a 10, I am in the hospital. That has happened only after procedures usually. For example I had a lumbar puncture and myelogram a couple weeks ago that unfortunately left me with a nasty spinal headache. I went to the ER and had to have a blood patch. That was definitely a 10 day.
Well hopefully I have sufficiently described my pain so that if you are reading this, you have a pretty good idea of what my day is like. Comment below how you would describe your pain. I found it very hard to describe my pain in this article!