Often I refer to myself as someone in their 40s with a body of a 75year old. Since my 20s, I’ve been in pain and had some form of treatment to remedy it, with only small periods of respite over the past 22 years.
HOW IT BEGAN
It all started as an AIN in a nursing home; I was showering someone, and unfortunately, they passed away; I went against the manual handling policy, and unknowing they had passed, tried to catch them to prevent injury/fall. My back injury was my first interaction with a multidisciplinary team. I spent 6months off work working on my recovery (without the knowledge and experience I have now was taken advantage of by my employer). As a newly married couple, we survived on weetbix and noodles (and the occasional horse poo shovelling job for a spare $20.) Weekly Physiotherapy, biweekly hydrotherapy, and a personal trainer three times a week at a gym.
This time I made good progress, lost a heap of weight, and, although still in pain, lived a relatively busy and normal life (we brought two houses, had four kids, ran a church, started studying & worked various jobs etc.).
DIAGNOSIS AFTER DIAGNOSIS
It wasn’t long after my youngest son was born that things started going downhill for me physically, with a comical but harrowing experience of dislocating my hip standing up off the toilet. This event started the endless cycle of doctors trying to explain the ‘why’; that was in 2008.
SEVEN YEARS OF UNKNOWN
I’ve had so many diagnoses over the years that it’s laughable. Muscle strain, muscle spasms, cramping, bursitis, partial dislocations of the hip, ataxia of unknown origin, arthritis (at various times noted in the hips, knees, and back), deferred pain, mainly in the stomach (which led to so many stomach-related investigations), chronic pain, lower back pain, slipped disc, disc bulges, neurological disorders (functional gait disorder, functional neurological disorder, primary orthostatic tremor) and many more that I can’t remember.
I have had numerous MRIs, phycological assessments, CT scans, ultrasounds, nerve conduction studies, countless blood tests, neurologist appointments, radio-frequency ablation (RFA) (over three years, was getting this treatment three times per year), installation of a spinal cord stimulator in 2021, appointments with social and mental health workers, physiotherapy, occupational therapy, massage, and natural therapies (and some that have slipped my mind). None of these treatments provided sustained absolute relief, nor pinpoints and treated all my symptoms, nor produced a holistic treatment plan or honestly extended comfort.
I’ve been ‘unwell’ in my current state since 2015/16, so seven years of not understanding the ‘WHY’ about my chronic pain, tremors, and functional neurological disorder. Therefore I needed to focus on one avenue to ensure some kind of normality for myself and my family. I’ve focused on pain management for the past seven years, getting my first pain specialist in 2016. My logic is that with effective pain management, I can live a somewhat normal life, continue working and mask whatever is going on with painkillers. Trust me; I needed to try them all and constantly titrate the dosage as my body became tolerant. Although pain killers provide relief, they have side effects (brain fog, tiredness, and weight gain, to name a few); addiction and dependency are problems, too, with some drugs worse than others. I have gone through horrendous withdrawals that have taken me months to overcome (night terrors, night sweats, fatigue.) It’s been a constant juggle, figuring out the drug with the most negligible side effects but will target my pain effectively.
As my symptoms look like I am drunk, I have been ridiculed, the butt of numerous jokes, and the rumour mill has been rampant about why my body movements were not ‘normal.’
JUDGING MY SYMPTOMS
These uncontrolled body movements have caused some family members to stop talking to me because they don’t condone my drunken behaviour. Some family members believe that I have significant mental health episodes and not coping at work or any other life events that are occurring at this time (having a busy lifestyle, four children, a child with a disability, and the need to move a lot for work, travelling for work so on and on.) Although I acknowledge that friendly banter and a laugh have been good therapy, I refer to my orthostatic tremors and unusual gait as the character from star wars Jar Jar Binks. There is a fine line between a friendly joke and a hurtful unfiltered uninformed, and hurtful remark.
FUNCTIONAL NEUROLOGICAL DISORDER (FND)
For at least six years, I had been skirting around a functional neurological (FND) diagnosis. FND studies have shown there can be many triggering factors for the onset of FND, for example, a physical injury, infectious illness, a degeneration of mental health, a pain flair-up or migraines. Any of these illnesses can cause someone’s first experience of FND symptoms, and once you have your first episodes, you likely have it for life. Historically functional neurological disorders were not understood in the clinical and academic world. Until recently, this disorder is thought to only result from the uncontrolled or a manifestation of a mental health condition. FND has traditionally been viewed as an entirely psychological disorder, a theory that repressed psychological stress or trauma gets ‘converted’ into a physical symptom; therefore, FND is referenced in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) as a phycological disorder. In recent years, FND has only started to be recognised as a stand-alone neurological condition.
Therefore I have unfortunately needed to be tested, questioned, and uncomfortably labelled as someone with a complex mental health disorder. I would not be ashamed if that were correct; however, treatment is significantly different if you treat unmanaged chronic pain as a mental health condition. Making the problem worse, many of my medications are used for mental health conditions and epilepsy. Thus when presenting to the hospital, or a new specialist, I need to reexplain my triggers and the root cause of FND. I have been using these medications for nearly seven years and constantly need to explain why I am using this medication for an alternative reason. Note: With the realisation that FND is a neurological disorder that affects the nervous system (although still not sure why), the medication is not questioned as often these days.
The other issue with FND is that symptoms can come and go; this is a relief as I get some much-needed respite. But come on quickly and without warning at other times, and when they do, I need to retell my story and jump through all the hoops before I get the correct treatment.
WHERE I AM AT NOW
So currently, I am sitting in a hospital, day 12. We have a plan that will get me out of the hospital in the next few weeks and a plan that should stabilise my gait and have less reliance on mobility aides over the next 2-3months. I currently do 2-3hours of allied health supervised physical therapy per day, from the basics, of learning to get out of my bed and car safely, to strengthening exercises to stabilise my core and legs to extremely simplified brain exercises, where I am learning to walk again and retrain my brain in the correct movement patterns required to mobilise on my own safely.
‘FND, the symptoms become ‘stuck’ in a ‘pattern’ in the nervous system. That ‘pattern’ is reflected in altered brain functioning. The result is a genuine and disabling problem that the patient cannot control. Treatment aims to ‘retrain the brain’, for example, by unlearning abnormal and dysfunctional movement patterns and relearning normal movement. One way of thinking about FND is looking at it like a ‘software’ problem on a computer. The ‘hardware’ is not damaged, but there is a problem with the ‘software’, so the computer doesn’t work correctly.’ (https://rarediseases.org/rare-diseases/fnd/)
The following steps are, for me, the scary ones; for some people with FND, the symptoms don’t go away, and some people with FND will remain in a wheelchair or need mobility assistance for the remainder of their life. This is my sixth episode in seven years, resulting in hospitalisation and an extensive rehabilitation program to retrain and rewire my brain. Honestly, I am not looking forward to the eighth, and I am searching for an avenue to slow down and reduce my flare-ups.
Although I have had considerable relief with my pain specialist (50% reduction in pain over the past 18 months) with the addition of the spinal cord stimulator, the reduction in tremors and FND symptoms has mainly been a fluke (or a side effect.) This single method treatment method (acknowledging that I still see physiotherapy at the gym and walk 10-20km per week when I am well) can not be my golden ticket, and I need to focus on holistically more elements of my treatment.
So the current plan is to work with a social worker at the hospital, link in OT & Physio, develop a treatment plan that will be sustainable in the community, explore whether I need external support long-term (parking permits, NDIS etc.) and finally admit to myself that I need to regularly see a Neurologist as part of my regular treating team.
I need to realise that people want to help me and that I am a time, my biggest roadblock, instilling the Aussie male persona of ‘she’ll be right.’ I have built a career in supporting and caring for others, which is a strong point at home with the family. However, I constantly fail at asking for and receiving help from those in my network.
Definitely something to ponder and a start of a new journey for me.
This Blog is also shared on The Mighty
We’ve followed your life and watched you raise a family, study and work hard to develop a successful career provide for your family.
We have seen you struggle with your health and have witnessed the effects that pain and the loss of mobility has had on you.
I have seen you tirelessly support one of your children who has a disability, fighting stereotyped diagnoses, discrimination, and outdated treatments making sure that she received the best support possible for her to succeed. You deliberately educated us and helped us understand what was happening for her so that we could be informed and be part of her life, helping her and surrounding her with love in the most appropriate way.
You are doing this again now, educating us, helping us to understand FND and explaining what is happening to you and why. Thank you.
We love you, I love you, keep going, you’ve got this.
Thank You, Bryan (Dad); this was definitely a hard one to write; I am not so good at self-reflection and self-care. I love you both, too and appreciate the encouragement. I feel strongly about education and helping to update and challenge the social norms, whether that be in the disablilty space or, for me, neurological disorders.
All the best with it Jeramy. I am sorry to hear of your ongoing struggle with mobility and pain.
Having had one back surgery myself I have a little insight into your predicament.
Thank you Rebekah , backs can be the worst of things sometimes, but on the road to recovery
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