Because the weekend was difficult, I stayed home from work on Monday, which was the third day after the procedure. I returned to school on Tuesday, and after spending most of the day on my feet, I was absolutely exhausted by the end of it. An early dinner and spending the evening lying down was a good strategy, as it gave relief to both my lower back and everything else that was hurting.
The injection site was progressively less tender as the week wore on, so was able to lie down and sleep on my back. As the steroids started to do their thing, I began to experience a lot less sciatic pain. I continued to have the consistent pain related to my fibromyalgia, but at least my butt and legs were no longer on fire.
That I began to see improvement on Monday and Tuesday was right on schedule for the time frame the doctor gave me – the injections would start working in 2-3 days and build up effect over the next couple of weeks. So far so good. Now, we wait to see how long that lasts.
The ESI hasn’t made any difference to my lower back pain – that’s not what the treatment was meant to do – but having the sciatic pain diminished makes a huge difference. I know how to manage my lower back and fibromyalgia pain. I can lie down comfortably for rest and sleep – and what a blessing that is!
The one-week verdict is positive. Despite the initial pain and discomfort, the procedure appears to have done what it was intended to do. If the sciatic pain returns, I’ll definitely have the treatment again.
Epidural Spinal Injection: One Week Later #spinalhealth #BackPain
I wrote yesterday about waiting to receive a CT guided epidural spinal injection to treat the constant lower lumbar and sciatic pain I have been suffering due to further degeneration of the disks on my spine.
I am sincerely touched and thankful for every message of support and encouragement that I have received since publishing that post.
In the light of the fact that there are some good medical sites available but relatively few “this is what it was like for me” posts to be found, this post is intended to address that imbalance.
When I got to the treatment room, I was provided a hospital gown and asked to change. I was able to leave my underwear on, so I wasn’t completely exposed.
I was then invited to lie face down/on my stomach on the Ct scanner table. The nurse and radiologist helped me to get as comfortable as I could, reminding me that I wouldn’t be able to move during the scans and injections.
Once I was settled, they did some test scans to give the doctor initial images to work with.
When the doctor came in and introductions were done, he proceeded to wash my lower back with iodine and prepare the injection site.
That was all completely fine until we got to the initial local anaesthetics. Knowing I couldn’t move, I gritted my teeth and made some indiscriminate grungy noises that communicated more than “ouch”.
Then came the insertion, at a precise location in my lower back, of the needle and cannula for the delivery of the rest of the injections.
“Just a scratch now,” said the doctor.
In response, I laid very still but made more ugly noises.
“How is that?” he asked me.
Showing significant restraint, I responded with “I’m not sure what scratches you, but it’s very different than anything that usually scratches me.”
He didn’t say anything, but the nurse and radiologist laughed at that, which I found rather satisfying: I may be lying prone and vulnerable while a very clever person with a tendency toward understatement sticks sharp, pointy things into my spine, but I’m still hilarious.
The radiologist scanned my back again to make sure the needle and cannula were in the right place, and the doctor proceeded to administer the prescribed anaesthetic and steroids.
In the course of the procedure, counting anaesthetics and steroids, the doctor made multiple injections . It wasn’t unbearable but it definitely wasn’t painless. I wouldn’t have wanted it to happen without the local anaesthetics, but I could still feel the injections.
After the procedure, I had to lie down with my upper body elevated for about 90 minutes before being declared able to go home.
The advice given to me before being allowed to leave was as follows:
Do not lie flat for 12 hours as nobody wants the anaesthetic heading north instead of south, which could cause significant complications.
When the local anaesthetics wear off, I would probably not feel both my original pain and some pain around the injection site. .
The injection usually takes 2-3 days to start taking effect. Full effect is generally reached after 10 days to 2weeks.
Rest for a couple of days to give things the best chance of healing.
The injection deals with the symptoms, not the actual degeneration in my back. I will still have the same limitations as before, but hopefully with a lot less pain.
I came home feeling quite tender and a bit jelly-legs, which I am told is normal.
I spent the afternoon and evening in my recliner with my feet up, changing the angle of the chair every now and then. I made sure I drank plenty of water, and that I got up regularly for necessary short walks.
I have experienced an increase in my fibromyalgia pain — which is a different kind of pain altogether from my back and sciatic pain, so it is easily distinguishable. Such pain flares are totally standard whenever my body experience stress or trauma. It’s fair to say that’s not helpful in the sleep department m, either.
Twelve hours later, the injection site is fairly painful , so lying on my back and trying to sleep isn’t much of an option right now. Some bruising is coming out, but I haven’t had any bleeding from the injection site. There is no significant swelling, redness or heat in the area, so I am assuming this is just par for the course and not anything I need to follow up.
It was a great relief to get into bed and lie down, albeit with an extra pillow, but even with my usual pain medication, sleep seems unlikely at this point. Not only am I a rubbish sleeper at the best of times, I have to lie on my back to sleep — I can’t ever sleep on my side or stomach because it’s just too uncomfortable for my back. So, 2.43am seemed like an opportune time to write an update post.
I am really hoping that I do see some improvement over the next couple of days, and that some consistent relief from pain is imminent,
I am writing this while waiting for today’s instalment of treatment on my problematic lower back and spine.
I’ve been having increasingly constant and aggressive pain in my back and sciatic pain in both my legs over recent months. I cannot sit, stand, or lie down without pain, which is both affecting everything I do and depriving me of sleep.
My neurosurgeon has prescribed an epidural injection of steroids into my back, done under CT scan guidance.
I know it is a treatment a lot of people have, but that doesn’t stop me feeling anxious about it. I am looking forward to the respite from constant pain, but it’s not a process I am looking forward to.
So, I am filling in the time by wondering about the meaning and origin of the word ‘epidural’. It’s a frequently used word in relation to one of the kinds of anaesthetic used during childbirth, and people generally understand that is blocks pain from the waist down, but that is not my circumstance. I’m definitely not giving birth today!
The Macquarie Dictionary definition, while accurate, was not entirely helpful.
Having looked up ’epidural’, I then had to look up ‘dura’. Just like that, I’m already learning things I didn’t know.
So, I can deduce that I am having an injection through the tough outer lining of my spinal cord.
To be honest, this research isn’t really reassuring me about the procedure at all.
According to Etymonline, the prefix epi- means on or above, and came into English from Greek. The term dura mater dates back to about 1400 AD, coming from the Medieval Latin ‘dura mater cerebri’ which translates to “hard mother of the brain,” a term which was borrowed from the Arabic ‘umm al-dimagh as-safiqa’, which means “thick mother of the brain.”
And so I wait, informed and still apprehensive of what is to come.
All I can say is I really, really hope this works.
Uhtcare translates to ‘dawn care’ and relates to the anxiety of lying in bed worrying about the coming day before it has even really started. It comes from the OE words uht meaning before dawn and cearu/caru meaning anxiety.
It wasn’t just the beauty of the word that struck me, but also the timeliness of hearing it today. Completely forwallowed after a night of very little sleep courtesy of painsomnia, I could totally relate to that feeling! I was lying in bed before dawn this morning wondering if it were at all possible for me to actually make it to work today. I thought about the lessons I wanted to teach, and how much effort it always takes to ensure that a substitute teacher has everything they need to deliver my lessons effectively.I also felt incredibly guilty about the fact that we have only just returned to face to face teaching, and there I was thinking about staying home.
Still, I knew I wouldn’t be a safe driver today, and I also knew there was very little likelihood of me teaching anything effectively at all.
So, I got up at 5.45 am and made sure all my lessons, material and extra notes for my replacement for the day were loaded in the school’s system and ready to go.
Given that we don’t really have an adequate alternative for such a useful and expressive word in today’s English, It is a shame that this word has fallen out of use. Maybe it’s time to bring it back.
Uhtcare: lying awake before dawn, worrying about the day. Anglo-Saxon/Old English #English #words #blogpost
It’s been a rough week, both emotionally and physically. Sleep has been patchy, which isn’t unusual for me, and my back pain has been relentless.
Naturally, my fibromyalgia decided to join the pain party with some extra bass beats and neon flares of its own.
Yesterday I chose to work through it. I’m a teacher working from home and my students are depending on me. It’s not that easy for substitute teachers to step into a remote learning classroom and make things happen the way I want them to. And, you know, I didn’t have to drive to school, which helps when you wake up in crushing pain. My classes were great, and spending ninety minutes with Genghis Khan in my Year 8 History class was a good distraction.
When my classes finished, I had to go to town to pick up my much needed new glasses, I’ve been struggling with eye fatigue while doing so much remote teaching, and it’s fair to say that the curriculum planning and lesson preparation don’t stop just because we’re working off campus. It was a 45 minute drive, but I just went there, got my glasses, and came home. I am not interested in shopping or spending any more time around people than I need to right now.
When I got home, I rested. Dinner was easy – the soup was already made, and just waiting for us to enjoy it with a spinach and feta bread twist.
I really hoped the evening of rest would be enough to make the pain flare back off.
So, by necessity, this weekend has to be a quiet one.
My new glasses are great, but I’m not going to be spending much time on screen. I’d love to read a book, but my hands hurt too much to hold one for long.
So, I will do what needs doing, and that’s it. I have a couple of new podcasts to road test, and then I’m going to indulge in an audiobook. I’ve got my recliner, my quilt, my cat, and the sound of rain falling outside.
Choosing my content is important for my mental and emotional wellbeing. I’m taking care to exclude anything negative, so I’m avoiding the news and social media. Throughout the whole Covid-19 pandemic and working from home experience, I have found that to be a good strategy for keeping my mental and physical spaces positive and healthy.
I’ve also got my pain medications handy in the drawer just beside me, because those things are my friends. It’s all well and good to be idealistic about managing pain and not relying on drugs, but on flare-up days, there is absolutely zero chance of that happening. A girl has to do what a girl has to do.
Since I began posting about my experiences of Fibromyalgia, a number of friends have asked me to explain what it is. I always start with “I can really only tell you what it’s like for me…”
I was recently introduced to a video by Dr Andrea Furlan, a pain specialist from Toronto, in which she explains the symptoms, possible causes and treatments for Fibromyalgia far better than I ever could. While some GPS are still fairly dismissive of this disease, Dr Furlan explains with empathy and understanding of both the physical and mental effects of Fibromyalgia on those who endure it.
Even though everyone experiences it a bit differently, it felt as though she spent most of the time actually talking about me. This tells me two things: she really knows what she is talking about, and she is a very good communicator.
So, if you want to know more about Fibromyalgia, take the time to watch this video and find out why the people you know with this condition I find it so debilitating.
There are many things I have learned to do again, albeit differently, since my spinal surgery 15 months ago.
It seems, however, that stairs are still my nemesis. I can manage one or two steps if I go slowly and carefully but, as I discovered tonight, walking up a whole flight of stairs still causes me significant pain.
We went out for dinner with friends, who had booked at a first floor restaurant that had no elevator. It did, however, have a beautiful circular staircase. Beautiful… and an enormous challenge.
I went very slowly, but by the fifth or sixth stair my lower back was screaming. Before I got to the top, I could feel the sciatic pain in my butt and staring to extend down my legs. I couldn’t stay there, so I had to either keep going or go back down. Slower still, and even more carefully, I made it to the top.
The first thing I did was hit my friends up for whatever analgesics they had. One had ibuprofen, the other had paracetamol. I took both, as my doctors have instructed me to do when I need to. I also chose not to sit until my meal was delivered, even though standing up in a large room of diners made me feel very self-conscious.
It didn’t help that some people were quite obvious about the way they looked at me – and all I was doing was standing up. Once again, it reminded me of how much harder it must be for those whose differences or disabilities are more obviously noticeable.
Dinner was delicious, but as soon as I had finished, I stood up again. We took the rear door out of the pub, as it opened onto the driveway. Even through it was quite a slope, it was still easier than the stairs.
It’s disappointing that the establishment had not been more thoughtful about accessibility. An assumption that everyone who visits is able-bodied enough to use the stairs is ignorant at best. Perhaps if there were a “disabled access” sign pointing to the rear of the building, I might have been able to enjoy my meal and the great company without either kind of discomfort. I cannot imagine I am the only person who would benefit from that,
And, if you’re ever out for dinner and there’s someone standing up for most of the evening, or doing anything else out of the ordinary, just know they have their reasons and be kind enough to pretend you haven’t noticed.
The aim of this post is not to complain. My spirit is still quite positive, albeit a little weary after working hard to tick things off my “do or die” list this week. Instead, my purpose is to raise awareness of what it’s like to live with Fibromyalgia.
People cannot see my illness. It’s easy to feel sympathy for someone in a cast, a wheelchair or a hospital bed. I notice an immediate difference in people’s responses on the days I need to use my walking stick. Some are kinder, and most are more physically careful around me.
Of course, there are always some who couldn’t care less about someone with a cane, but there is no point losing time or sleep getting upset about them. Their attitude only highlights the good in others’.
My disease is invisible, although some of its effects are not. I may look tired, or upset, at times. My emotions sometimes get a bit messy, although I am a good actor so most people don’t know that.
After a busy and somewhat stressful week, my body is letting me know how unimpressed it is. My pain levels are in the “stupid” range. My legs don’t want to bend anymore. I have zero need to take my pulse because everything is throbbing. Even typing this is slow because my fingers hurt too.
To anyone else, I probably just look like someone in a recliner, covered with a quilt on a cold night, typing on her iPad. The truth is, I want to go to bed but I don’t want to move because I ache so badly.
I have medicated, but it’s not touching the pain. That’s always good.
In a further act of bodily insubordination, my very dodgy spine is giving me spasms— yet another an indication that I have probably (read: definitely) overdone it, yet again.
I don’t want sympathy. I don’t want medals or admiration, or people telling me I’m brave.
What I want is for people to understand that Fibromyalgia and other “invisible illnesses” are not imaginary. They are not something we adopt because they are “trendy”.
Fibromyalgia hurts. And it sucks. And it doesn’t go away.
And if you think I “don’t look sick”? Just remember, you can’t see my superhero cape, either.
‘Les Miserables’ is among my favourite books of all time, and it is also one of my favourite musicals.
I saw a fabulous production of ‘Les Mis’ last night at the theatre in Warrnambool.
My major achievement for the evening was not singing along out loud— which took more self-discipline than you might ever realise.
I was moved to tears by the emotion and beauty of the performances, but also— as always— by the power of the lyrics.
There are many moments and several songs in the show that I love, but my absolute favourite lines are sung by Fantine:
“But the tigers come at night With their voices soft as thunder…”
‘I Dreamed a Dream’
Those words are so profound.I find them powerful because I know that whatever it is that a person struggles with – pain, grief, depression, anxiety, worry… those tigers visit more often at night, and stay for longer, than they ever do during daylight hours.
One of the reasons I began taking my writing more seriously a number of years ago was because I found it an excellent way of dealing with my night tigers and answering their voices with my own.
That’s why many of my poems deal with themes of mental health, pain, depression, grief, and resilience. Its also why I insist that writing is the most effective therapy I have ever had. It hasn’t cured me or solved my problems, but it has certainly helped to heal me and enable me to deal with the challenges I face in life in a much healthier way.
Those tigers still come at night, but they have discovered that I, too, can roar.
I could have spent most of Fibromyalgia Awareness Month writing about my experience of this condition. I could spend a year writing what people don’t know or understand about it.
However, I plan for this to be my only post on that topic during this Fibromyalgia Awareness Month, because I don’t like to complain and I don’t want to sound like I am hiding behind my disease or making excuses.
Fibromyalgia is a diagnosed medical condition— now. It wasn’t always. It has a wide variety of symptoms, although they basically all contribute to chronic pain and overwhelming fatigue.
Because of Fibromyalgia, I have pain all the time. Think about that.
Pain. All. The. Time.
It doesn’t ever completely go away. The best I can hope for is that it will ease off a bit, and that I’ll have more good days than awful ones.
When people present to the Emergency Department or paramedics with pain, the standard procedure is to ask them to rank it between 1 and 10, assuming that 10 is the worst pain they have experienced. I wake up most days to a starting level of about 4 or 5 for me. With medication, I can generally keep it down to about a 3.
That’s why I have structured my working week so that I start a bit later in the mornings. It’s not because I don’t want to get out of bed: it’s because when I do, I am stiff and sore and it’s really hard to get moving. As the day wears on, my pain levels start to increase. My legs feel heavy and hard to lift when I walk. My feet begin to ache, and that often turns into a throbbing pain that starts to work its way up my legs. It can take hours for the aching to subside enough to let me sleep, especially if I have been on my feet a lot. A similar thing happens with my hands and arms if I am using them a lot, and especially if it involves holding or carrying anything with a bit of weight in it. It’s not unusual to end each day feeling like I’ve been either beaten up or body slammed by someone or something a lot larger than me.
Anytime I get stressed or anxious, or when my depression is messing with me, my pain levels flare. Overtiredness also increases my pain. Sometimes, I reach that level of tiredness by lunchtime and still have two classes to teach and a 40 minute drive home before I can rest. Add in a work deadline or two and things can get pretty horrid.
All of this is completely separate from my back pain, which is a different thing and a different type of pain altogether, and which I am able to manage fairly effective for the most part.
The problem with pain is that people can’t see it like they can if you have cuts and bruises or a cast. You can hide a lot behind makeup and a smile.
When they call this an invisible illness, they’re not kidding. If I had a dollar for every time someone said to me “But you don’t look sick,” I could quit work and live very nicely on the interest. It’s such a shame I can’t bill people for their insensitivity or ignorance.
I know it’s not a death sentence like some other diseases are. It is, however, a life sentence. As things stand, there’s no cure in sight. All I can do is keep up my painkillers and anti-inflammatories and hope for the best.
None of this makes me, or anyone else with Fibromyalgia, weak.
It takes strength and courage to get through each day, and sometimes that’s on a moment-by-moment basis. It takes resolve to blink away the tears and keep showing up for work or social or family occasions. It takes guts to say, “Actually, I’m not doing so well” when people ask, or to write a post like this one. In a world that prioritises health and beauty, brokenness is often an unpopular confession.
I have Fibromyalgia. I don’t want sympathy or pity. I don’t want people to tell me I am strong or brave. You bet I am!
What I really want is more awareness, better understanding, and more effective pain relief. And a cape. They can’t see my pain or my superpowers, but they’d be sure to know I have something if I were wearing a cape.