My Diagnoses

Jase is sitting in their wheelchair holding a sign that says Millions Missing: Stop CBT and GET for ME

Myalgic Encephalomyelitis (ME)

This is also known as Chronic Fatigue Syndrome, although I hate that name! It makes it sound like you’re just a bit tired, when the reality of this illness is very different. There are four ‘categories’ of this illness, although they all have a lot of crossover, but generally speaking they are Mild, Moderate, Severe, and Very Severe. I am classified as Severe, which means I am housebound (unable to go out alone) and mostly bedbound (I spend all my time lying down in bed or on the sofa!) although I am able to get myself to the bathroom most of the time, with use of mobility aids

The symptoms of ME vary wildly from day to day. It is a fluctuating condition, and quite often symptoms can appear randomly and with no apparent pattern, which is why this is a very difficult condition to diagnose. It took me four years to get my diagnosis, during which I was incredibly ill with little to no medical support. Symptoms can include the following, but not everyone gets all of them, and they can vary in severity from person to person. I also may have missed some off this list!

Symptoms:

  • Chronic fatigue
  • Post-Exertional Malaise (feeling awful after activity, which can hit either a few hours later or up to two days later and can last for days, weeks, or even months)
  • Widespread pain, often located in the joints
  • Dizziness
  • Sore throat
  • Enlarged glands in throat
  • Orthostatic intolerance (difficulty in remaining standing)
  • Insomnia or oversleeping
  • Cognitive difficulties
  • Nausea
  • Pins and needles/numbness
  • Sensitivity to light and sound
  • Gastrointestinal issues

HSD (Generalised Hypermobility Spectrum Disorder)

This is a connective tissue disorder that causes a wide variety of symptoms effecting almost every system in the body. Connective tissue is the stuff that holds joints together, as well as holding your organs in place, so it causes multi-system problems which often make it challenging to diagnose. This is a recent diagnosis for me so I’m still learning about it and the ways to manage it, but braces and assistive devices like my wheelchair, sleeping with a body pillow, my electric blanket, etc. are invaluable for managing the pain.

Symptoms include:

  • Chronic joint paint
  • Joint subluxations (partial dislocations)
  • Hypermobile joints (joints that bend further than they should)
  • Dysautonomia/autonomic nervous system dysfunction e.g. dizziness, high heart rate, low blood pressure, issues with temperature regulation
  • Gastric issues e.g. low appetite, nausea, feeling of fullness, difficulty swallowing
  • Bladder issues e.g. frequent infections
  • Fatigue

Fibromyalgia

This condition causes widespread pain everywhere in the body without there being another obvious cause e.g. arthritis. The pain is thought to come from the nervous system. Touch can also cause pain, and even wearing clothes can be extremely uncomfortable, making it difficult to manage and navigate daily life. I wear braces at my particularly sore spots (wrists, ankles, knees, etc.) and that can help me mobilise a little easier. I also take painkillers.

Again, symptoms of this condition vary from person-to-person, but here are a few to look out for:

Symptoms:

  • Pain, often located in muscles
  • Fatigue
  • Pins and needles/numbness
  • Taking longer to recover from injury/pain
  • Poor sleep
  • Stiffness
  • Cognitive problems
  • Headaches
  • Painful periods (for uterus owners)
  • Sensitivity to touch

Costochondritis

This comes hand-in-hand with my other conditions (especially HSD and ME), but it is actually the first thing I was officially diagnosed with. It’s often overlooked, but it is extremely painful and one of my most disabling conditions. Costochondritis affects the costochondral joints in the ribcage, leaving them inflamed and extremely painful. It is described as a temporary condition that lasts only six months to a year, but I’ve been suffering since I was a teenager and it’s definitely chronic for me. Anti-inflammatory medication can help, as does heat treatment like hot water bottles or microwavable bags.

Symptoms of costochondritis are:

  • Severe pain at the top of the ribcage that can spread to one or more rib
  • Chest is sensitive to touch
  • Pain that comes and goes and can feel like a deep ache or sharp and stabbing
  • Difficulty breathing

Irritable Bowel Syndrome (IBS)

This is a very common condition that affects the digestive system. Cramps and painful bloating are common symptoms, often made worse by certain foods that may be intolerances. For me, I have had a lot of success with following a low-fodmap diet with the help of a dietitian, though not everyone finds this helpful.

Symptoms:

  • Painful cramping in the stomach
  • Bloating
  • Diarrhoea
  • Constipation
  • Food intolerances
  • Nausea
  • Vomiting

Benign Paroxysmal Positional Vertigo (BPPV)

This condition, in my case, is caused by three inner ear infections which have permanently changed the crystals in my inner ear. Diagnosis is made by performing a manoeuvre called the Dix-Hallpike test, or Nylen-Barany test, in which the patient lies down and moves their head in a specific way to bring on symptoms of dizziness and nausea. The doctor also looks for a distinctive pattern of eye movement. When I did this test, Charlotte tells me that I went green!

Symptoms:

  • Dizziness at changes of position, turning the head etc. that lasts a few seconds/minutes before passing
  • Nausea
  • Vertigo with a distinct spinning sensation
  • Vomiting if the dizziness is severe
  • Feeling faint/fainting
  • Difficulty reading during an episode

Functional Neurological Disorder (FND)/ Non-Epileptic Attack Disorder (NEAD)

This is a controversial diagnosis for many reasons. In the past, it was called ‘hysteria’ and today is sometimes also known as ‘conversion disorder’, which theorises that a trauma that the patient cannot remember is causing the patient to experience physical symptoms. Sometimes, it can appear that this diagnosis means ‘it’s all in your head’.

That is difficult to digest when experiencing severe physical symptoms, therefore there are many patients who contest this diagnosis. However, the neurologist who diagnosed me was very specific that in my case there is no mental illness causing my physical symptoms. Rather, he explained that the constant signals of fatigue and pain that bombard my brain due to my other chronic illnesses sometimes cause my brain to overload and ‘act out’, giving me these physical symptoms. He stressed that talking therapy would not help me control my symptoms, but that I need to treat the fatigue and pain to get them under control to better manage my FND symptoms (if only that were possible!)

Despite this, it is nearly impossible to find doctors who will take this diagnosis seriously. As such, I have left it off a lot of my official paperwork because I don’t want to deal with the stigma that assumes I have some sort of untreated psychiatric condition that is causing these ‘psychosomatic’ symptoms, when I know that is not the case. There is very little treatment for this condition, and indeed, not very much is known about it at all. It’s official definition is ‘medically unexplained symptoms’: that should tell you all you need to know!!

Symptoms:

  • Severe tremors (mine are so bad that I cannot walk or weightbear at all when my leg tremors are active)
  • Non-epileptic seizures (these mimic epileptic seizures and are incredibly painful and distressing)
  • Paralysis
  • Numbness/pins and needles
  • Falls

Asthma

This is a common respiratory condition that affects the lungs. When coming into contact with a trigger, the airways constrict and fill with mucus, making it difficult to breathe. It is usually managed with the use of inhalers and avoidance of triggers. My triggers include cold air, humid weather, cigarette smoke, traffic fumes, exercise, and aerosol sprays, along with most cleaning products. I wear a mask most of the time when I go outside (even pre-pandemic!). Asthma attacks can be fatal so it is vital to manage the condition well and take inhalers as prescribed, and to seek emergency medical help if an attack becomes severe.

Symptoms:

  • Shortness of breath
  • Coughing
  • Wheezing/rattling sounds in chest
  • Pain in chest
  • Gasping for air
  • Lips/tips of fingers turning blue