Disclaimer: This is just my story, I do not mean to speak for others about what this illness entails.
I had been struggling with poor sleep, adrenal issues and diminishing energy for about a year before December 2015 when I caught what I thought was a common cold. I was sick for about a week with the usual symptoms until all hell broke loose; I started to experience severe, debilitating joint pain and stiffness that required strong painkillers from the doctor. I had reactive arthritis and my joints would become so stiff that they seized up and became locked in position and to move them would cause a loud cracking followed by more pain, redness and remained sore for hours. There was clearly a unique viral component to what I was experiencing.
Over the next few weeks the arthritis improved but the pain migrated from my joints to my muscles, but left a significant weakening of all my joints and loud crepitus (cracking) – something I had not experienced before. It felt like my body was falling apart rapidly as any tissue that became effected, also weakened.
If you think this sounds bad enough already – this was just the start! Over the following months, the pain migrated around my body. The next main symptom being quite severe costochondritis (Inflammation of the rib plate) which means that every time you breathe in and out, you are in pain, and it feels as though somebody is grappling and squeezing your heart. Horrible. Because of this I had a high heart rate and felt like I was having a cardiac issue for which I went to a walk-in clinic and had an ECG, it showed up as Sinus Tachycardia, which I later found out to be caused by infection but was at the time told to be ‘just anxious’ by the doctor.
Throughout all of this, I was working at a new job, I just muddled on and it became the norm that every few days to a week there would be a new scary symptom. I just kept telling myself that it would end at some point and I just had to brave it out, but it didn’t, I started to experience plantar fascilitis which is an inflammation and tightness of a tendon in the heel of your foot – hence making it very difficult to walk – so I found myself hobbling to work or tentatively cruising on my bike. Everything was becoming really difficult as my physiology was just shutting down. Terrible lower back pain, Bursitis in my hip, neck pain and jaw pain.
As many Chronic Illness patients will be familiar with, my visits to the doctor were not at all helpful as all my blood tests and physical examinations presented as normal, leading the doctor to jump towards it being a psychological condition that would just magically improve over time. The traditional view towards an onset of symptoms like this would be to jump to the conclusion that this was ”All in your head” or a manifestation of depression or anxiety. But this was something much more unusual and mainstream medicine is just so far behind that it is almost laughable.
The pain and stiffness in my jaw migrated from the Temporomandibular Joint to the Trigeminal nerve to put me in further agony. TN can only be described as somebody hammering a nail into your jaw, a throbbing pain that shifts around without warning, not at all fun! One of the strangest things that I started to go through was MCS or Multiple Chemical Sensitivity, a syndrome that science doesn’t really have an answer for and sounds like complete nonsense until you experience it yourself. For months I would react to holding or being near electrical devices, so a mobile phone for example, would stimulate awful pain and stiffness throughout my hand, arm and then whole body. Anything that was slightly damp such as certain vegetables or a cleaning cloth would have the same effect, Mushrooms were one of the worst things for this when holding and preparing. It all sounds a bit mad but it’s very real and a lot of people go through MCS in coordination with other illnesses or by itself.
I won’t go into too much detail but an important thing to note was the gastrointestinal effects of this illness, with there being no consistency in stool and clear reactions to certain foods that could trigger diarrhoea or very unfirm stool, then consipation the next day – clearly the gut and colon were very affected. Hence Gut Microbiome research into ME/CFS.
By the way, the symptoms are endless.
Peripheral Neuropathy was one of the scariest, when certain foods or triggers would mean that I could wake up and not be able to feel or move my limbs with temporary paralysis which would take atleast 30 minutes to pass, even after that, severe muscle weakness would persist for the entire day. Alcohol was a pretty bad trigger for this, so I cut that out fairly swiftly, as well as processed sugars and Gluten etc.
Throughout this painful endurance challenge, I was feeling CFS or Chronic Fatigue Syndrome setting in gradually. I was still able to work, but absolutely glued to the sofa after work and horizontal all weekend to rebuild my energy for Monday. Noticing more and more that PEM or Post-exertional malaise was and issue as I pushed too hard one day and then was hit by heavy fatigue and a flare up of all of the above symptoms the next day.
Not for everyone but for most people, OI (Orthostatic Intolerance) and POTS (Postural Orthostatic Tachycardia Syndrome) are comorbid with CFS, and this was the case for me. OI being the inability to stand upright for periods of time without becoming nauseous, having all-over postural muscle pain and abnormally increased Heart Rate . I first realised this at a concert with friends that I pushed myself to go to but had to sit in the stalls after the first five minutes as my knees, hips, back were incredibly sore and I nearly passed out. In my case, POTS was quite mild, but it affected me in that when I would get out of bed in the morning, or get up from a chair, then I would feel light headed and see flashing lights in my eyes – it can make you feel quite sick.
I still remember touching my scalp one day at work and masses of hair falling out, which continued for months and turned a thick head of hair into a much thinner crop. Eye brows too falling out at a rapid pace – this can be linked to Thyroid disorder or autoimmune issues. I had had Eczema in the past anyway but intermittently I would break out in various rashes all over, including a HUGE one that covered my entire left side and was super-itchy.
Multiple food allergies had developed that triggered and accelerated all of the above but also stimulated new symptoms such as ‘air hunger’ (deep, rapid, and labored breathing caused by an increased respiratory drive due to abnormally low blood oxygen levels).
You are probably starting to get the picture now; there is a lot of stuff going on, completely out of your control and it is certainly not in your head!
Over the course of a year, while still working a 9-5 job (only I can give myself credit for this as noone really knows what a trial it was!), I also had to find hours in my own time to research and trawl through patient forums, study medical papers and figure out how to calm some of these symptoms down – it was like an additional part-time job. The reason for this is that the NHS (National health service in the UK) is way behind on such immune disorders and still operates with a lack of research in this area, being bound by NICE health guidelines that are influenced by incredibly dated ideas that any illness that presents in such a way but does not show abnormalities within the basic spectrum of blood testing that they use, must therefore be a ”Functional or Psychological disorder”.
So with ME/CFS, which I should mention is something of an umbrella term for a number of illnesses and symptoms (with patients later finding they had a misdiagnosis but were neglected as their doctors viewed their symptoms as psychiatric), it really is a fend for yourself job.
I made some leaps and bounds with various interventions including dietary changes, supplements, use of probiotics and other functional health methods to improve my energy levels, lower pain levels and generally improve many of the above symptoms. By using private testing and doctors, and acting on various nutrient and mineral deficiencies, reducing toxic overload, and beginning to correct the Gut microbiome (But I will talk about all of this in another post).
I was doing fairly well with it all and felt that I was generally on the recovery path as my symptoms were improving all the time, but the one thing that I got wrong that I was not advised upon at the onset of illness was ”Pacing” and was ill-advised towards ”Graded Exercise Therapy” – one of the very dated and unproven ”treatments” for these illnesses. I also took on more hours at work and started pushing myself harder in that sense, believing that it would be sustainable as I gradually improved. It’s important to say that I did not feel stressed – I feel that I managed my mental health very well. I started to relax my treatment protocols and diet but sadly I got the balance wrong and suddenly noticed that I had stopped improving, and while a lot of the pain and muscular symptoms held off, my fatigue was rapidly increasing again, and so begins the second phase of my illness – ME/CFS (rather than just CFS and Fibromyalgia in phase one)
Strange things started happening, like unexpected falls, I recall standing at a bus stop, stepping to one side and collapsing. Not passing out but just instantly losing all balance and coordination and falling to the floor. At my place of work, I started to find it hard to just navigate corridors, stairs and snaking between desks without bumping into things. This was a concern. After some late nights at work one week, it really started to feel like I had been hit by a brick wall, and one day I woke up and JUST COULD NOT MOVE, it was like I was made of lead. I had to call in sick and was off for atleast a month then as I was literally bedbound, all my energy for the day was required to make a trip to the toilet and to reach the kitchen for food. Walking up the stairs was like scaling Mount Everest in a Deep sea diver’s suit. It was what I had been dreading, as I had noticed other patients experiencing this big ”Crash” and the onset of ME via a period of CFS and Fibromyalgia.
This is the point at which you might feel like giving up, well sadly I did have to give up my job (one that I really enjoyed) as it was impossible to reach the bus stop, let alone the office. BUT I was not going to give up on my health, as I knew that I had already made such improvement from a dire state of health the year before and that I had the tools to do it again. The past year has been a very slow, arduous and frustrating process of trying hard to heal, making some steps, leaps, annoying setbacks but generally I am gradually improving again (with methods that I will post about).
I am still at a moderate to severe level of ME/CFS, in that I am mostly housebound except for having the energy to get out for around 1-2 hours a day, 30-45 minute walks at a decent pace. These figures are with pacing myself, I can occasionally manage 3-4 hours out but it comes at a huge cost of PEM (Post exertional malaise – which is not simply feeling tired, but better described as an immune attack on the body – what some researchers believe happens) and something of a setback for a week or so. So to remain on this steady trajectory of improvement and healing, I need to keep myself within these limitations of exertion – it’s a very fine science! If PEM strikes then it can mean a number of uncomfortable issues including muscle spasms and fasciculations (Basically involuntary vibrating or contractions of muscles), Adrenaline and cortisol spikes that puts you in a state of restlessness as the body is repeatedly telling itself it is under threat, sleep issues like sleep apnoea and breathlessness, vision problems and many more issues that make PEM worth avoiding by pacing.
My sleep is much improved and I sleep right through the night now, it is a misconception that people with ME/CFS sleep all of the time, in fact most find it very hard to sleep and suffer insomnia as the nervous system is overactive. Despite better length and depth of sleep time, I still wake up feeling very exhausted and it can take half a day to get my body into gear for achieving the aforementioned activity levels.
The main symptoms that have persisted throughout both phases of my illness are issues with balance and coordination (neurological effects), there is rarely a moment in the day when I can stand upright and manage a task without feeling poorly coordinated and off balance, and with this I still suffer with Orthostatic intolerance somewhat and will need to sit after ten minutes or so of standing. After my daily walk or stroll, I can become very dizzy and lose all balance, so my daily routine consists of carefully measured pacing between lying down, sitting up right to strengthen postural muscles, standing, walking. From much experimentation, this is the way that I have found the best improvement and halt worsening. I continue to experiment with low-risk treatments and protocols to reach the next level of improvement and will talk more about these in other posts.
As this post has become quite long, my final message is to say that throughout my life I have known or known of people with ME who have clearly struggled, some using wheelchairs to get around. And I can hold my hands up now and say that at the time I did not understand how they were disabled, especially when they could get up from their chair and walk, but now I understand and hopefully as more of this illness becomes transparent and less ‘invisible’, more people will understand. I hope my post helps.
