Steroids and the aftermath...

Two weeks after I had seen Dr #1 (I end up seeing quite a few doctors, so I figured that I would just label some of them by numbers...), I was back in the office to review the MRI results.  In the meantime, I was going to physical therapy three times a week.  I was lucky to have a therapist that knew me very well, as he has been in practice for a very long time and seen me many times after I had injured my back in the past.  I have been to other physical therapist over the years, but this one was by far the best.  Too bad that even with my insurance, it was $40 a visit.

Dr #1 said I had two lumbar disc bulges, one was significant at L4-5 and impinging on my nerve root.  This nerve  root travels down through the hip into the sciatic nerve, which reaches all the way down the leg.  He suggested an epidural injection.  A lot of you know what that is, but basically an epidural is done by an anesthesiologist, usually under sedation.  Steroids and numbing medication are injected into the epidural space, which is where the nerve and disc space are.  Steroids help decrease inflammation and also help the healing process in general.  Goal- disc bulge shrinks up and irritated root heals.   The numbing medicine is a diagnostic tool.  If, after the injection, the pain is gone, theoretically, you can assume the injection targeted the right place.  Sometimes it takes the steroids a week or two to feel the benefits of it.  The problem with the numbing medicine is that when it is injected, it can leak up and down to other nerve roots, so it's not a perfect test.  Also, usually a patient needs a series of 2-3 epidurals.  I had some relief in my leg pain immediately after, but not completely.  Two weeks later my pain was unchanged.  So I had another epidural two weeks after that.  Again, no change.  In fact, three days after that injection, I bent over to pick up a sock on the floor and when I did I felt a pull and could barely get upright.  Luckily I was steps from my bed and my sons were home.  I could barely move.  My parents came down to help me because I couldn't even get to the bathroom on my own.  I was flat on my back with ice packs for another three days.  I was in such excruciating pain that it hurt to breathe.  I finally had to take a vicodin to get some relief.  Luckily I got better about 3 days later and only had to take a few vicodin.

I called Dr #1 and we discussed options at this point.  He said that surgery would would be difficult because the surgery itself may cause nerve pain for 3 months after.  He suggested trying another epidural.  At this point, I was not any better.  In fact, The sciatica seemed worse than ever, and I was already 3 months into this.  It was time for me to think about maybe another opinion. So I asked around.  My anesthesiologist (who did the 2 epidurals) had suggested someone.  So I went to see Dr #2.

Dr #2 spent a good amount of time with me, really examined me well (Dr #1 really didn't do that).  He thought my pain might be from sacro-iliitis- inflammation of the sacro-iliac joint that is located in the hip.  He suggested an injection into that joint space- basically same medications and idea as an epidural, but in a different location.  I thought he was going to have me schedule it with an anesthesiologist but he said he could do one for me right then and there in the office.  I said okay.  My mom had come with me so I wasn't worried about driving afterward.

This injection hurt, a lot.  And I can handle a lot of pain.  He was moving the needle around deep in my hip trying to get to the right place.  At one point, I am 99% sure he hit my sciatic nerve because i felt an electric shock shoot down my leg that literally caused me to jump off the table.  His nurse had to hold me down.  I was sobbing and shaking, face down into that white tissue paper they put on the tables.  I remember it vividly because the paper, wet with my tears, was sticking to my face and I couldn't reach up to remove it because they were holding my arms down.  And I remember glancing up at my mom and she had a look of horror on her face.  Not fun.

When I left my entire leg from the hip down was numb.  I could walk but it was very difficult because I couldn't feel it at all.  So since my entire leg was numb, it was really hard to know if it helped me or not.  It took away all feeling, not just the pain! We scheduled an EMG (nerve test).  Nerve tests help tell if there is nerve damage that could be causing the pain.  We also scheduled another follow-up sacro-iliac injection- this time to be done by the anesthesiologist under sedation (thank god).

Two days later, I awoke at 3am with burning pain in my left knee and ankle.  Burning from the inside, and a sensation of my skin burning as well.  My skin was itchy and flushed on my legs.  It hurt so bad and any movement of my legs made it worse.  Honestly, it felt like my legs were on fire. I had to take vicodin, this time one didn't touch the pain, had to take two at a time to get any relief.  I called Dr #2's office later and spoke to his nurse.  She said it sounded like neuropathic pain and that she would tell the doctor but there was nothing to do.

I had a follow up appointment with the anesthesiologist the next day.  I was still in agony.  In his office, my blood pressure was 156/92 and my heart rate was 122- I usually run around 105/60 and my heart rate is usually 70.  He started me on Lyrica (Pregabalin)- it's a med for nerve pain, as he agreed that this pain appeared to be neuropathic.

Another few days later, I finally started feeling better in terms of pain, but I still has this burning sensation.  I noticed that I had a rash on the back of my upper hip.  It started in the middle and extended in stripe like pattern to the left.  It was red and raised, like clusters of small blisters.  I had SHINGLES.  Crap.  What else can go wrong?  I had taken care of patients with shingles and knew that it was painful, but I had NO IDEA how bad it was.  Now I know.  It's bad. 

The next day was my Nerve Test/EMG.  It was in the same office as Dr #2 so the nurse looked at the rash, as well as the doctor conducting the Nerve Test and they agreed that I had shingles.  I had the nerve test, which showed some abnormalities along the S1 nerve.  Which really didn't help us because that was not the nerve being pushed on by the bulging disc.  Great.

Next trip was to my General Practitioner ("family doctor") to treat the shingles.  I was started on an anti-viral, Acyclovir, that I had to take five times a day for two weeks.  Ironically, the Lyrica that I started for nerve pain is exactly what they prescribe for the nerve pain associated with Shingles.  The next day I awoke with a pasty feeling mouth.  When I looked at it, my entire mouth all the way down my throat was covered in a white film.  When I brushed my teeth, my gums bled.  Now I had THRUSH.  Super.  Steroids are great but they have serious side effects- one of which is that they surpress a person's natural immune system.  This, and all the stress I was under, probably led to my shingles and thrush.  I called my GP and he started me on Nystatin mouthwash and Diflucan.  The medication list kept growing.

I felt like I was slowly starting to fall apart.  I got pretty sick from the shingles- felt like I had a really bad case of the flu.   I was in bed all the time.  The Lyrica made me very sleepy.  I needed a lot of help at this point with the boys as I couldn't drive safely and could barely cook.  I was miserable and sick and in pain.

When I showed up 2 weeks later to have that second sacro-iliac injection, I told the anesthesiologist what had been going on.  He didn't want to inject the same place again and was hesitant to give me any more steroids at all.  He looked at my Nerve Test results and said he thought we should try to inject the S1 nerve since it was the abnormal one on the test and my pain fit that pattern.  I agreed.  But I didn't get any relief from this one either.  I checked in with Dr #1 and we discussed surgery, but he still didn't think it was a good idea.  I wasn't feeling too great about Dr #2.  The anesthesiologist looked concerned when I told him about the office injection.  I wasn't going back to see him.  A few people gave me names of doctors they had seen and thought were good, and the same name popped up a few times.  I ran it by my sister and she agreed... so I made an appointment with Dr #3.  I was turning into the patient that I hated treating as a nurse (we used to call them 'doctor-shoppers"- people who would change doctors again and again until they found someone who would do what they want).  I don't think I fit into that category, I was honestly motivated to finding someone who was committed to help me get some pain relief and get me back to work and my usual living.  But I was starting to feel like I was in an un-popular category of patients.

This time was extremely emotionally draining.  Being in chronic pain is indescribable to people who have never experienced it.  There were days that I thought it was all in my head.  I felt like people around me were watching my every move- looking for proof that I was in pain.  I had to respond to invitations or potential plans with "I will try to be there it just depends on how I feel."  I hated that phrase.  I had an appointment with my OB-GYN around this time.  On the day of my appointment, I was in so much pain that I could not get my legs up into the stirrups.  I was crying as my doctor worked with me to get the pelvic exam done in a not-so-traditional way.  We talked a bit about what was going on and she suggested I start an anti-depressant.  She prescribed Celexa, told me it was a mild mood stabilizer and began to work relatively quickly. 


The steroids had affected me. I was wired all the time.  My hands shook.  I had gained 15 pounds.  I had a steroid "moon" face.  I hated the way I looked.  Months later, my parents told me that the way I looked was so different and so awful that both my mom and dad cried one day after visiting me.  People I hadn't seen for a while told me how different I looked.  I was missing a lot of the boys activities- not all of them, but more than I wanted.  I was usually very active with their sports and school activities, and I couldn't do those things.  I felt bad for them, and I truly missed it.  I needed help with so much- shopping, cleaning, laundry, driving the boys.... and I was not good at asking for help.  I was a strong, accomplished, proud mother who had overcome some huge obstacles in my life.  I had to humble myself (like I did when I was in rehab) and realize my limits, and ask for help.  Once I did that, and realized that people wanted to help, that they were happy to help me, things got easier.  I actually got to hang out with my folks a lot, and I enjoyed that.  I was home every day with the boys- something I never thought would be possible since I had to work full time.  Things were tough but I was feeling very blessed at this point for so many things: for having people in my life that cared and helped, that I had an employer that was treating me fairly and compassionately, and that I had medical insurance...because the bills were rolling in and piling up.  Mostly I was glad that I was clean and sober so that I could make decisions with a clear mind and face this all without having to drink or drug my way through.