Hi everyone
I've been living with the confusing and enormously frustrating diagnosis of FND illness for about 7 years now, although I only came across the forum today. I thought I would introduce myself and say a little (or a lot) about what I've been going through. It would be great to connect with others who might be able to relate to my situation.
My first real symptoms began at University in 2009, and things have got progressively worst since, although there have been periods where I have regained much of my health, only to loose it again.
As a child I was otherwise well, but I did have some moderate learning difficulties and trouble focusing. I also had problems with controlling my anger and had frequent temper tantrums. As an adolescent I suffered from tiredness, lethargy, a continuing lack of focus, and low mood. Looking back, these were signs of ADD that were missed, and I am looking into this now. Aside from this, my childhood was quite unremarkable; family life was loving and stable. However, at the age of 17 I experienced a traumatic incident with a close friend where I was falsely accused of sexual assault and arrested. It did not go to court. It was a deeply upsetting and humiliating time; I was forced out of the closet before I had even given my sexuality much thought, horrible homophobic rumours were spread around the small town I lived in at the time, my house was regularly vandalised and on one occasion I was violently attacked and publicly shamed when out with friends. The reason I mention this is because it had a profoundly detrimental affect on my mental health, which I think may explain some of the somatization I now experience as part of my FND. It was also when I started to use drugs as a means to cope with stress, which has also subsequently impacted on my mental and physical health in a huge way.
My first real symptoms began at university several years later; a sudden onset of palpitations and breathlessness. I remember how anxious I was about this at the time, and I convinced myself I had a heart problem. I soon began to develop aches and pains, fatigue, and strange muscular and skin sensations. I saw a cardiologist at the time who ran some tests which all came back normal. I followed up with my GP who prescribed me citalopram to deal with the anxiety.
This was the start of my FND journey and I believe epitomises the inadequate response from the medical profession towards "medically unexplained" symptoms, which I think could benefit from a more holistic bio-pycho-social approach, an approach I subsequently found a few years later when I started seeing a natural medicine practitioner. I look back to this time and think how easy it would be if I were still only dealing with palpitations and fatigue. I was scared at the time, but I really had no idea what was to come...
By the time I graduated from University things began to really deteriorate. I started to experience frequent spells of dizziness, lightheadedness on standing, weakness in my arms and legs, pain in my joints, jelly legs and foot-dragging when walking, muscle spasms, and tremor in my hands. I was also suffering from frequent mind blanks, some mild memory problems, difficulty thinking clearly, and forgetfulness. Incidentally, around this time I also started thinking a lot about the trauma I experienced when I was 17. I remember that as my health deteriorated I became increasingly preoccupied with this, and began to feel hugely guiltridden.l and uncertain about the whole thing. It was apparent that I had not dealt with it properly at the time and had probably repressed many of my emotions and thoughts associated with it.
I saw a neurologist at the beginning of 2012 and this is when I received my first FND diagnosis. He said that what I was experiencing was "severe anxiety state with somatisation" and recommended that I resume my anti-anxiety medication which I had since stopped. He had nothing specific to say about my drug use. Whilst I was reassured that he didn't believe I had a progressive neurological condition, I was still deeply worried by the severity and debilitating nature of my symptoms and asked for an MRI of my head, to which he agreed. It came back normal, and I was told this conclusively ruled out MS.
Around this time I also started seeing a natural medicine practitioner, who I am eternally grateful for. This was the beginning of understanding the true complexity of my "medically unexplained symptoms". One thing that was apparent to her was the likelihood that my recreational drug use had caused some damage, and she was certain that what I was experiencing wasn't simply psychogenic. She also believed that I was dealing with several food intolerances, and that my poor diet was a significant contributing factor, and that my inability to process what had happened to me when I was 17 was preventing me from healing. Importantly, she provided a solution based on addressing the underlying causes rather than simply managing symptoms. She strongly advised against anti-anxiety medication and to this day I have stayed away from them.
Over the years that I have been seeing her, there have been times when I regained much of my health. I put this down to 3 main things. First, a nutritional programme to promote physiological healing of the brain and nervous system, which included specific nutritional supplements and the elimination of certain foods, including wheat, dairy, and sugar. Second, the cessation of regular alcohol use, and all drugs. And third, dealing with unresolved trauma, learning how to effectively managing my emotional health, and reducing stress regarding my health and symptoms.
Unfortunately, a few years ago, after regaining my health up to a point that I was able to return to work, I began to regularly use drugs and alcohol again. I also stopped investing time in managing my mental health, and took on a demanding job which caused more anxiety and stress. Over the course of about a year my health progressively deteriorated and by Christmas 2014 I experienced a huge relapse of my symptoms. This time it was the worst I have ever experienced, and I am yet to make any significant recovery.
Over the last few years I have experienced a whole range of debilitating physical and mental symptoms which come and go, fluctuate in severity, disappear and then return, and some which seem to have gone completely, and some new ones altogether. They include:
- Partial-seizure-like episodes at night and sleep paralysis. As I am drifting off to sleep my entire body goes stiff and a feeling of paralysis occurs, where I feel compelled to move in order to prevent the paralysis. Simultaneously I feel brain zaps and flashing lights, and feelings of confusion and disorientation like I don't know where I am. By body temperature drops and I shiver uncontrollably. This keeps me up for hours and the next day I often have a terrible headache and feel absolutely exhausted. Fortunately, I experience this less frequently now.
- Insomnia - struggling to fall asleep or falling sleep but waking up after 15 minutes with racing heart, confussion, and cravings for food.
- Racing jumbled / incoherent thoughts and confussion when trying to sleep at night and upon waking.
- Breathlessness and difficulties breathing at rest and when trying to sleep. Sleep apnea symptoms, such as a feeling that my airwaves are closing when drifting off to sleep and waking seconds later gasping for air.
- Pain and pins and needles in legs at night
- Problems with my vision and hearing - sensitivity to light and noise, and an inability to hear people in crowded places + tunnel vision, and lack of clarity / difficulty identifying things or people.
- Shooting pains and numbness down my right side accompanied with nausea and weakness.
- Difficulty understanding what people have said to me or following conversations.
- Delayed response when trying to keep up a conversation and scrambling feeling in my head when trying to figure things out.
- Difficulty multitasking or concentrating
- Difficulty organising my thoughts or thinking straight
- Slurred speech and difficulties projecting my voice with weakness in my throat and chest
- Severe exercise intolerance and tight chested when exercising
- Racing heart and erratic heart beat associated with dizziness and nausea, during exercise and sex / masturbation. For a period this seemed to trigger arrhythmia-like episodes which brought on severe dizziness and paralysis feeling, although this was never caught on an ECG.
- Uncharacteristically angry and irritable, with severe mood disturbances.
- Severe anxiety and depression
- Feeling of impending doom
- A feeling that my world is fading away and everyone / everything is more distant and inaccessible.
- Forgetting what day it is + my plans, over and over.
- Socially withdrawn - feeling that I can't relate to anyone
- Overwhelmed by places with lots of people
- Lack of motivation for anything
- Weakness in my arms and legs, problems with dexterity and using hands.
- Pain, soreness and pin pricks / crawling feeling on skin
- IBS
- Excessive mucus in throat and nasal drip
- Lack of coordination and clumsiness.
- Overactive bladder and pain when bladder full
- Weak urine stream and need to push forcefully to empty bladder
- A degree of incontinence.
- Inability to think about things on demand - mind blocks and inability to access thoughts or pieces of information.
- Thoughts that come and go and inability to develop thinking.
- Severe mind blanks mid-thought or mid-activity - What was I thinking? What was I doing?
- Difficulty following instructions or directions
- Difficulty transposing information or filling out forms.
- Almost completely unable to use numbers or do mental arithmetic.
- Long-term and short term memory problems - difficulty remembering university and childhood memories - fuzzy memory or complete lack of recollection.
- Inability to put memories in chronological order
- Unable to recall what I have just been doing or recent events when asked.
- Delayed recognition of people's faces
- Inability to remember names
- Inability to follow conversations or to think of what to say
- Difficulty reading and writing - delayed recognition of the meaning of words and spellings.
- Difficulty speaking and articulating myself
- Difficulty thinking and speaking at the same time - constant pauses when speaking
- Unable to multitask
- Unable to learn new information
- Forgetting what day it is
Over the last two years I have seen two more neurologists who both agree that my symptoms are not the result of neurological disease but a functional disorder whereby my nervous system isn't quite functioning as it should be. One described it as, "the hardware of your nervous system is intact, but the software isn't working properly". They both also agreed that my memory problems can be explained by impaired concentration caused by anxiety, low mood, and poor sleep, and potentially exasperated by drug use. I have since seen a sleep specialist who has ruled out any primary sleep disorder. No one ever says anything specific about the affects of drug use. I have also seen another cardiologist, a respitary specialist, and a rheumatologist, and none of them could diagnose anything. I have been discharged from all their care still none the wiser.
Things were again further complicated when I was diagnosed HIV positive last year. All my symptoms were greately exasperated. This is hands down the worst I've felt and I've barely made any recovery in over a year. It seems that whatever resilience my body had before has been lost and it also points to the fact that my symptoms have a physiological basis, although the doctors have tried to suggest that the stress of being diagnosed has contributed to my anxiety and that's why I am feeling this way!
For those that don't know, HIV is now a completely manageable condition and very few people experience neurological complications these days - that's if they are diagnosed in good time and start effective treatment - both of which are true of me. I was diagnosed just weeks after infection and I started treatment a few weeks later. I've now been undetectable for 6 months, my immune system is functioning fine, and my life expectancy is near normal. The last neurologist I saw assured me that I do not have neurological HIV.
So where does this leave me? My symptoms are now so debilitating I have almost no quality of life. I have been unemployed for over two years, my mental disabilities are so profound I can barely read or learn new things, which means distracting myself with anything is nearly impossible, I can only do light exercise, and my social skills are almost non-existence. Just the thought of leaving the house on most days feels me with darkness. Not only this but my memory problems are now so profound I spend most days feeling confused and agitated and it's almost impossible to find any respite.
I think my story highlights a few things. Firstly, the medical profession is great at diagnosing common known conditions, but anyone with anything more nuanced or complicated is completely missed. Second, it's clear to me that many people diagnosed with "psychosomatic" illness have some contributing physiological dysfunction, and yet without advanced testing or the help of a functional or natural medicine practitioner they are unlikely ever to get the help they need. In many cases simply dealing with psychological factors wont resolve everything. Thirdly, a holistic approach in-line with functional medicine is greatly needed, and I strongly suggest that people consider seeing a natural health practitioner who understands illness as a systems-based mind-body interconnected problem, not simply a single disease-state phenomenon.
I would love to hear from anyone who can relate to my story or may have some advice or comments.
Tom
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