My Experience with Degenerative Spine Conditions, Disease, Disorders

arthritis of the spine, degenerative spine diagnosis, Sciatica, Foraminal stenosis, Bone spurs, spinal stenosis, Degenerative scoliosis, Spondylolisthesis, Bulging discs, herniated discs, Spinal osteoarthritis, degenerative spine, degenerative disc, pinched spinal nerveI have a few of the 11 identified degenerative spine disorders which you can read a synapsis of here if you’re curious about the different kinds.

Through an MRI in the fall of 2017 on my lower back (and I should have one done on my neck as well), mine includes some spinal stenosis, degenerative disc disease, definite bulging discs and the beginning of arthritis. Later, I had a horrific pinched spinal nerve (read more about that below) which I will hopefully never have to endure again.

Our Family History of Degenerative Spine Diseases and Conditions

The “bad back” and neck runs in my family on my father’s side. A cousin in her late twenties or early thirties had surgery on her lower back when suddenly she couldn’t walk. My uncles have it as far as I know. My grandfather has had it for decades and I believe had previous surgery but now where’s a c-collar full time in his 80s as his heart is not healthy enough to live through another surgery. My father is currently around the age of 66 and has had it in his lower back for decades, as well as had surgery on his neck. They went in through the front of his neck and replaced discs with cadaver bone. I do not know exactly how many are affected in my family, but I’d say a significant number are.

My Personal History of Degenerative Spine Disorders

I’ve had lower back pain since maybe 12 years old (and while it got progressively worse, it was not debilitating until around 2014 at the age of 38).

I’ve also had significant neck pain since my late teens. In my early twenties, a chiropractor took x-rays and told me that my natural S curve is 90% straight and will fuse that way and cause problems if I do not have any intervention to fix it.

That particular degenerative spine disease is called spondylolisthesis but has not been recognized by my current back doctor’s office since they did not bother to order the MRI for my neck when I went in for my lower back, despite my asking them to.

My pain and symptoms increased significantly from late 2015 when I was basically on bed rest with my feet up for lipedema and lymphedema and subsequent infections (like body sepsis) due to those ravaging my body before diagnosis.

This just completely messed up what mobility I had left. I slept upright in a chair for over a year and sat in that chair almost 24/7. Those things I mentioned above that were already a problem seemed to increase tenfold. Spinal stenosis, degenerative disc disease, bulging discs and the beginning of arthritis.

At some point after that first year from fall 2015 to fall 2016, I was at least able to start sleeping in my bed again for 2-4 hours at a time before pain would chase me back to the chair. What a nightmare that was.

Unfortunately, my chronic back pain from the degenerative spine diseases that I have also comes with excruciating muscle spasms when I stand or walk for just a few moments.

I was no longer able to get around, walk through stores, etc. I am very limited in mobility and could only walk a few feet before the spasms would start. I have to do cleaning and food preparation while sitting on a stool. I can’t do much of anything that I used to do or love.

With all of the diseases/conditions, pain, and loss of independence that I have, it felt like my life was ending at 41 years old.

This is what finally took me to see a back specialist.

Understandably, they do not want to do huge surgical interventions if things can be fixed or pain can be tolerated by other means. I’m also not the best surgical candidate because of my other diseases/conditions and my weight.

I’d heard great things about this surgeon and his office, yet when I got in, I was seen by a young doctor who, to be quite honest, was just not interested in my case and helping me in the least. Seems I was not an interesting surgical case? Or he judges me because of my lipedema?

However, I’ve followed their script so far and I need more. Something more needs to be done. I will have to update this post in the future after appointments and discussions and hopefully interventions.

Having said that, I knew I would need to jump through hoops and try what they suggested first.

First, we discussed medications. Tylenol or prescription Tramadol for pain are useless for me. I used to take great quantities of Ibuprofen with little more than hope as an effect, but am no longer able to due to being on blood thinners. Muscle relaxers did absolutely nothing to stop the spasms or pain either.

Physical therapy was up next. I began the first round of physical therapy and then a second round as well as water therapy. Months of appointments.

I use a Tens unit as needed and I sit with a heating pad on my back several times per day.

What Physical Therapy Has Done for My Degenerative Spine Disease

When I first began, I was told I needed to work on my core strength and it made sense that straightening and strengthening would help with the bulging discs. No idea what would help with the muscle spasms, it was all a gamble. The therapists were amazing, validating, etc.

I’d been told by the newly medical school minted back doctor that I shouldn’t have so much pain for what I had wrong with my back, and yet there I was, completely disabled and not feeling believed or validated.

My physical therapist team leader knew I was in pain and knew that everyone is different. In fact, she told me through our time together that she knew I had a high tolerance for pain (something I’d been told and seen in life under other circumstances). My physical therapists are so knowledgeable and are advocates as best they can be in their limited scope.

Initially, with just a few exercises, I saw immediate changes in how things felt in my spine and that’s when it went terribly wrong for a month. It was by far the worst pain I have ever endured. (I wrote about it just below this section.)

After that cleared up in approximately 4-6 weeks, we could get back to the pain and muscle spasms that originally took me there. Through two rounds of PT (24 appointments) and water therapy over several months, I was able to make a little progress.

By the way, I wholeheartedly advise anyone with chronic pain to exercise in a light water class or water therapy. Your body moves in ways it cannot on land and you get farther, faster, if not at least without as much pain during PT.

I was able to begin to walk more steps before the spasms kick in and I was able to sleep longer in my bed and turn to my other side in bed without jarring my back. I cannot sleep on my back or stomach or I get painfully stuck, but at least now I can turn to another side once or twice per night.

My posture is better with less pain and I can sit up in the car or in a chair for longer periods without a pillow behind me to hold me up.

I can stay in bed 5-7 hours total before I must get up. I am in less pain and with less stiffness upon getting up in the morning. I still walk with an odd gait and my mobility comes and goes from hour to hour, depending on the whims of my back.

If I get to the counter at the pharmacy or bank without the spasms starting, I can bend over and go down on my elbows on the counter to hold them off. There is pain when I stand, but at least no spasms until I’m headed towards the door. I won’t get into how humiliating it is to have to do this bend-over-the-counter thing in public though.

Unfortunately, this month has brought a new symptom. When I am standing to do laundry or something, just a tiny shift in my stance or when I begin walking, my lower spine pop pop pop pops as if something is rubbing against something it shouldn’t be and popping off of it. No extra pain, just a popping sensation. I assume it’s a bulging disc issue since they act as shock absorbers for the spine; my vertebra is probably rubbing against each other.

This is simultaneous with the muscle spasms, so I can’t stay up longer than a minute or three.

Before moving on in this post, one of the things the physical therapists did for me was pep talk me into getting a cane to assist me in walking and using an electric scooter through the store. These types of things I had been putting off to my detriment.

Read: Does Pride Stop You From Using Assistive Devices or Mobility Aids?

So that’s where I am at currently after physical therapy. Overall there were surprising changes I never thought I’d see, and yet they are so small in the grand scheme. For instance, I’m glad to be in bed for 5-7 hours a night, but I wish I wasn’t chased out of bed in pain.

I’m glad I can walk for one minute longer than I could before months of physical therapy. I’ve learned that one minute makes a difference. But come on, that just means I can get from my house into my car before my back wrenches into spasm! I still cannot walk 30 feet, shop standing up, do laundry like a normal person, or anything else like every other able-bodied person.

I am still in pain every single day of my life and now have that new popping sensation.

So, I have a new appointment with the back doctor’s office in a couple of weeks and hope to update this post if anything changes.

But first, remember I promised to tell you about the pinched spinal nerve caused by changing my posture:

I do not recommend you saying no to physical therapy out of fear this will happen to you. It was a fluke, maybe. Bodies are weird. I needed to go to physical therapy, I just hit a painful hiccup for a bit.

I had been working on my core and posture and when the change shifted things, by week two or three of PT, I had a pinched spinal nerve. The pain was excruciating and never-ending, day and night. I was awake in pain for hours, just trying desperately to find a comfortable enough position to go to sleep for even just a little while.

The Tens unit didn’t help, Ibuprofen, changes in position, hot packs, cold packs, Lidocaine medicated patches – nothing worked. I was unable to lay down in bed, let alone sleep there. I was unable to get any work done. Life was all about catching a tiny sliver of relief and sleep for weeks. It drove me insane.

I called the back doctor’s office in crisis and they had me come in for an epidural. It is not the most comfortable of treatments to have needles in your spine, but I thought I would at least be cured of this nerve pain. I wasn’t. It did not work.

I called again the next few days and reception always answered, but never booked me and said that someone would call me back. They never did. I was devastated. I was not a problem patient. I was nice. I made them laugh. I was a new patient. I was young-ish at 41 and a single mom with no help at home and needed someone to do something. I was just in the worst pain of my life and begging for that help.

My legs sometimes stopped working correctly and I became a fall risk. One morning while stepping out of the shower, I was lifting my leg and my leg just stopped, causing me to trip over the side of the tub. It did that when I was walking too.

The next morning, I almost couldn’t make it to the toilet and when I did, I almost couldn’t stand again.

I was alone, crying on my toilet, unable to move. I thought I am 41, my life is over. I cannot live like this.

I had to drive myself to the ER that morning of the toilet incident — which is not a smart move when your legs are not working right.

My experience in the ER was awful. I was labeled a problem patient I guess because I was crying and telling them they could help me if they wanted to and their reaction to me went south. They wanted to give me a shot for pain and send me home and that wasn’t going to work for me. I’d gone through weeks upon weeks of this pain.

Luckily I’d had a friend who went through something similar after a back injury (and is a nurse in another state) tell me what kind of steroid to ask for. I asked the ER doctor for that and he agreed. They give you a shot of steroid and then send you home on I think 5 days of steroids, gradually weaning you off.

This worked. Whatever was inflamed in there was able to settle down enough from the steroid to make a difference.

Interestingly, as much of a mess as I was at the ER that day, never once did they ask me if I was in a mental health crisis and needed intervention, someone to talk to, or had I had any suicidal thoughts. Because yes I did and yes I had. I was at the end of my rope.

In fact, they took such great offense to my crying to the doctor and telling him he wasn’t even trying to help me, that even though they knew I was a fall risk when it was time to go, they didn’t roll me out. They didn’t walk me out. They gave me my papers and said goodbye. I walked out alone, in pain, in spasms, with legs not working well and I almost fell in the parking lot. I could barely lift a leg to get into my car, and once I was in, I just sat there and sobbed.

That was approximately eight months ago and nothing has gotten significantly better other than the pinched nerve finally subsided. I live in fear of its return every day. Every time I roll over in bed or bend or feel pain, I live in fear of that pinched nerve.

And I live in fear of going to the doctor’s office or the ER because they judge me instantly based on my weight and all seem uninterested in helping me. I am filled with anxiety before appointments. I’ll try to keep you updated though as I try to push for intervention even though I’m exhausted from it because I can’t continue like this for the next 30 or 40 years.

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