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Find out more about the complex conditions Sarah has been diagnosed with

 

Lyme disease

Lyme disease, also known as Lyme borreliosis, is an infectious disease caused by the Borrelia bacterium which is spread by ticks.

 

After several months, untreated or inadequately treated people may go on to develop chronic symptoms that affect many parts of the body, including the joints, nerves, brain, eyes, and heart.

 

Chronic neurologic symptoms occur in up to 5% of untreated people. A peripheral neuropathy or polyneuropathy may develop, causing abnormal sensations such as numbness, tingling or burning starting at the feet or hands and over time possibly moving up the limbs. A test may show reduced sensation of vibrations in the feet. An affected person may feel as if wearing a stocking or glove without actually doing so.

A neurologic syndrome called Lyme encephalopathy is associated with subtle memory and cognitive difficulties, insomnia, a general sense of feeling unwell, and changes in personality. However, problems such as depression and fibromyalgia are as common in people with Lyme disease as in the general population. 

 

Lyme can cause a chronic encephalomyelitis that resembles multiple sclerosis. It may be progressive and can involve cognitive impairment, brain fog, migraines, balance issues, weakness in the legs, awkward gait, facial palsy, bladder problems, vertigo, and back pain. In rare cases, untreated Lyme disease may cause frank psychosis, which has been misdiagnosed as schizophrenia or bipolar disorder. Panic attacks and anxiety can occur; also, delusional behaviour may be seen, including somatoform delusions, sometimes accompanied by a depersonalisation or derealization syndrome, where the people begin to feel detached from themselves or from reality. 

 

Acrodermatitis chronica atrophicans (ACA) is a chronic skin disorder observed primarily in Europe among the elderly. ACA begins as a reddish-blue patch of discoloured skin, often on the backs of the hands or feet. The lesion slowly atrophies over several weeks or months, with the skin becoming first thin and wrinkled and then, if untreated, completely dry and hairless. 

 

Lyme arthritis occurs in up to 60% of untreated people, typically starting about six months after infection. It usually affects only one or a few joints, often a knee or possibly the hip, other large joints, or the temporomandibular joint. There is usually large joint effusion and swelling, but only mild or moderate pain. Without treatment, swelling and pain typically resolve over time but periodically return. Baker's cysts may form and rupture. In some cases, joint erosion occurs.

Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (ME/CFS)

Australia is leading the way in research at Griffith University. It has been discovered that people with ME/CFS have faulty calcium ion channels. This research has been published only recently. More information can be found here: https://www.griffith.edu.au/menzies-health-institute-queensland/about-menzieshiq/Infectious-Diseases-and-Immunology/neuroimmunology-and-emerging-diseases

Chronic fatigue syndrome (CFS) is a complicated disorder characterised by extreme fatigue that can't be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn't improve with rest.

This condition is also known as myalgic encephalomyelitis (ME). Sometimes it's abbreviated as ME/CFS.

Also called “core” symptoms, three primary symptoms are required for diagnosis:

  • Greatly lowered ability to do activities that were usual before the illness. This drop in activity level occurs along with fatigue and must last six months or longer. People with ME/CFS have fatigue that is very different from just being tired. The fatigue of ME/CFS:

    • Can be severe.

    • Is not a result of unusually difficult activity.

    • Is not relieved by sleep or rest.

    • Was not a problem before becoming ill (not life-long).

  • Worsening of ME/CFS symptoms after physical or mental activity that would not have caused a problem before illness. This is known as post-exertional malaise (PEM). People with ME/CFS often describe this experience as a “crash,” “relapse,” or “collapse.” During PEM, any ME/CFS symptoms may get worse or first appear, including difficulty thinking, problems sleeping, sore throat, headaches, feeling dizzy, or severe tiredness. It may take days, weeks, or longer to recover from a crash. Sometimes patients may be house-bound or even completely bed-bound during crashes. People with ME/CFS may not be able to predict what will cause a crash or how long it will last. As examples:

    • Attending a child’s school event may leave someone house-bound for a couple of days and not able to do needed tasks, like laundry.

    • Shopping at the grocery store may cause a physical crash that requires a nap in the car before driving home or a call for a ride home.

    • Taking a shower may leave someone with ME/CFS bed-bound and unable to do anything for days.

    • Keeping up with work may lead to spending evenings and weekends recovering from the effort.

  • Sleep problems. People with ME/CFS may not feel better or less tired, even after a full night of sleep. Some people with ME/CFS may have problems falling asleep or staying asleep.

In addition to these core symptoms, one of the following two symptoms is required for diagnosis:

  • Problems with thinking and memory. Most people with ME/CFS have trouble thinking quickly, remembering things, and paying attention to details. Patients often say they have “brain fog” to describe this problem because they feel “stuck in a fog” and not able to think clearly.

  • Worsening of symptoms while standing or sitting upright. This is called orthostatic intolerance. People with ME/CFS may be lightheaded, dizzy, weak, or faint while standing or sitting up. They may have vision changes like blurring or seeing spots.

Other Common Symptoms

Many but not all people with ME/CFS have other symptoms.

Pain is very common in people with ME/CFS. The type of pain, where it occurs, and how bad it is varies a lot. The pain people with ME/CFS feel is not caused by an injury. The most common types of pain in ME/CFS are:

  • Muscle pain and aches

  • Joint pain without swelling or redness

  • Headaches, either new or worsening

Some people with ME/CFS may also have:

  • Tender lymph nodes in the neck or armpits

  • A sore throat that happens often

  • Digestive issues, like irritable bowel syndrome

  • Chills and night sweats

  • Allergies and sensitivities to foods, odors, chemicals, or noise

Fibromyalgia

Fibromyalgia is a name given to a group of symptoms marked by generalised pain and muscle stiffness. These symptoms can be felt in all different areas of the body. Extreme fatigue (tiredness) and sleep problems are also common in fibromyalgia. 

Fibromyalgia does not cause inflammation or damage to the painful areas, but may be due to an overactive pain system. Fibromyalgia  is different to polymyalgia rheumatica, a type of arthritis in which symptoms are felt more in the muscles.

 

The most common symptoms of fibromyalgia are:

·      pain – usually aching, stiffness and tiredness of muscles. Pain may be worse after rest (eg. first thing in the morning) or after activity

·      extreme fatigue (tiredness), making it difficult to do your normal daily activities

·      poor sleep

·      problems with concentration and memory

·      irritable bowel (diarrhoea, stomach pain).

 

It is not known what causes fibromyalgia. It may be more common in people who have:

  • inflammatory arthritis (for example, rheumatoid arthritis)

  • an illness, such as a virus (or following an illness or infection)

  • pain from an injury or trauma

  • experienced emotional stress and depression.

·      For many people fibromyalgia starts without any obvious cause.

Research suggests that the body may become extra sensitive in the way it signals and processes pain in people with fibromyalgia.