FND, TMD, PLP, CRPS and other rare disorders

While reading several client emails over recent weeks which all said something along the lines of: "You will never have heard of this condition before", " You will probably not want to take me on as a client", "You won't be able to help me I don't think", I realised it was time that I raised awareness and brought attention to these conditions and disorders that many people are suffering from.

Yes, some of them are rare. Some quote that less than one in a million people will suffer from these conditions. Some even quote that less than one in two million people will suffer from these conditions. However, I would say it is many more. And help is available.

Functional neurological disorder

Functional neurological disorder (FND) is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals, rather than a structural disease process such as multiple sclerosis or stroke.

FND can encompass a wide variety of neurological symptoms, such as limb weakness or seizures. FND is a condition at the interface between the specialties of neurology and psychiatry.

Functional neurologic disorder, a newer and broader term, features nervous system (neurological) symptoms that cannot be explained by a neurological disease or other medical condition. However, the symptoms are real and cause significant distress or problems functioning.

In addition to this, patients and clients also suffer a loss in their well-being, and a deterioration in their quality of life. This can then cause or exacerbate stress, anxiety, trauma, PTSD and depression. And sadly, this can also lead to thanatophobia, an intense fear of death or dying.

The most common symptoms of thanatophobia include:

• Unreasonable, excessive fear – the person exhibits excessive or unreasonable, persistent, and intense fear triggered by a specific object or situation.
• Avoidance of situations in which thinking about death or dying may be necessary – in severe cases, this can lead to the person avoiding leaving home altogether.

As well as:

• more frequent panic attacks
• increased anxiety
• dizziness
• sweating
• heart palpitations or irregular heartbeats
• nausea
• stomach pain
• sensitivity to hot or cold temperatures

The phobia can be life-limiting, significantly impacting the individual’s work, school, or personal life. The duration of symptoms must last for at least six months.

When episodes of thanatophobia begin or worsen, you may also experience several emotional symptoms. These may include:

• avoidance of friends and family for long periods of time
• anger
• sadness
• agitation
• guilt
• persistent worry

Note: Morbidity refers to the consequences and complications (other than death) that result from a disease.

And so, it is clear that often one condition or disorder can then lead to other complications, issues or phobias.

Conversion disorder

Conversion disorder is a mental condition in which a person has blindness, paralysis, or other nervous system (neurologic) symptoms that cannot be explained by medical evaluation.

Causes

Researchers are still looking for a specific cause, but they think conversion disorder happens as a way for your brain to deal with emotional stress. It is almost always triggered by upsetting situations and other mental disorders.

• Conversion disorder symptoms may occur because of a psychological conflict.
• Symptoms usually begin suddenly after a stressful experience. People are at risk of conversion disorder if they also have:
  • a medical illness
  • a dissociative disorder (escape from reality that is not on purpose)
  • a personality disorder (inability to manage feelings and behaviours that are expected in certain social situations)

Conversion disorder is a condition in which you have physical symptoms of a health problem but no injury or illness to explain them. For example, imagine taking a hard fall off your bike and then not being able to move your arm. But your arm isn’t injured. Neither is any other part of your body.

Your body converted the emotional and psychological stress of your fall into the physical response of a paralysed arm. It might seem strange, but your symptoms are real, and you can’t control them.

Experts include conversion disorder in a wider category of medical conditions called functional neurologic disorders, (FND).

Commonly recommended treatments include:

• Clinical hypnotherapy – hypnosis and hypnotherapy reprogramme the brain and create new neural pathways in the brain.
• Psychological therapy, such as cognitive behavioral therapy (CBT).
• Stress management training makes symptoms more manageable.
• Physical therapy for weak limbs, walking problems, other movement problems.
• Occupational therapy.
• Speech therapy.
• Medications to treat the medical conditions that may co-exist in patients affected with conversion disorder.

Other conditions that clients are suffering from include phantom limb pain.

Phantom limb pain

Phantom limb pain (PLP) refers to ongoing painful sensations that seem to be coming from the part of the limb that is no longer there. The limb is gone, but the pain is real.

The onset of this pain most often occurs soon after surgery. It can feel like a variety of things, such as burning, twisting, itching or pressure. It is often felt in fingers or toes. It is believed that nearly 80% of the amputee population worldwide has experienced this kind of pain.

The cause of functional neurologic disorder is unknown. The condition may be triggered by a neurological disorder or by a reaction to stress or psychological or physical trauma, but that's not always the case. Functional neurologic disorder is related to how the brain functions, rather than damage to the brain's structure (such as from a stroke, multiple sclerosis, infection or injury).

Anyone can develop FND. An estimated four to 12 people per 100,000 will develop FND. Fundamental causes may involve biological factors (such as early childhood trauma and early life stress, emotions, a propensity of anxiety, witness to violence, maltreatment, or childhood sexual abuse) or sociological factors (including interpersonal relationships and stress). Some of these factors can trigger episodes of FND. The disorder is more common in women and particularly in those who have a history of early life sexual trauma.

Psychogenic nonepileptic seizures (PNES) may look like generalised or other forms of epileptic seizures but are caused by brain dysfunction and not by abnormal electrical signalling in the brain. You may have episodes of movement, sensation, and behaviour similar to an epileptic seizure and may have a temporary loss of attention or memory lapse. You also may have confusion or loss of consciousness without shaking. You might feel “disassociated” (or somewhat disconnected) from thoughts or feelings or from the environment. PNES can be stress-related, emotional, or psychological reactions to an inability to cope with a sudden or past event or events.

Signs and symptoms vary, depending on the type of functional neurologic disorder, and may include specific patterns. Typically, this disorder affects your movement or your senses, such as the ability to walk, swallow, see or hear.

Functional movement disorder

Functional movement disorder (motor FND) affects the movement of the body. Symptoms are common and may include:

• leg and arm weakness or paralysis
• tremor
• sudden, brief involuntary twitching or jerking of a muscle or group of muscles (called myoclonus)
• involuntary muscle contractions that cause slow repetitive movements or abnormal postures (called dystonia)
• problems with walking motion (gait), posture, or balance
• spasms and contractures (where the tendons become fixed in awkward or uncomfortable positions)
• muscle stiffness
• tics

Symptoms that affect other brain functions may include:

• speech difficulties, such as sudden onset of stuttering or trouble speaking
• problems with seeing or hearing
• pain (including chronic migraine)
• extreme slowness and fatigue
• numbness or inability to sense touch

Diagnosis

No single test can confirm a diagnosis of FND. A doctor will assess your health and medical and family history to rule out any neurological or other condition that may cause symptoms since FND can coexist with other disorders.

A neurologist, therapist, and a psychiatrist or psychologist, and hypnotherapist may look for specific patterns of symptoms or signs to make a diagnosis.

Treatment

There are no specific treatments for FND but there are treatments for some of its symptoms:

• medications
• psychotherapy
• clinical Hypnotherapy
• physical, speech, and occupational therapy
• redirecting attention

Causes

The exact cause of FND is unknown, although ongoing research is starting to provide suggestions as to how and why it develops. Many different predisposing factors can make patients more susceptible to FND such as having another neurological condition, experiencing chronic pain, fatigue or stress. However, some people with FND have none of these risk factors.

At the time FND begins, studies have shown that there may be triggering factors like a physical injury, infectious illness, panic attack or migraine which can give someone the first experience of the symptoms.

These symptoms normally settle down on their own. However, in 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, which the patient cannot control.

The aim of treatment is to ‘retrain the brain’, for example by unlearning abnormal and dysfunctional movement patterns that have developed and relearning normal movement.

Affected populations

The exact prevalence of FND is unknown. However, research suggests FND is the second most common reason for a neurological outpatient visit after headache/migraine; accounting for one-sixth of diagnoses. This means FND is as common as multiple sclerosis or Parkinson’s disease.

FND can affect anyone, at any time, although it is uncommon in children under 10.
FND is more likely to affect women than men for most symptoms, although when patients present over the age of 50 then it occurs equally in both groups.

Related disorders

It is common for FND to co-exist with other illnesses. FND can have similar symptoms to most other types of conditions seen in neurological practice such as multiple sclerosis, stroke and epilepsy.

Some patients have both a neurological disease diagnosis such as stroke and FND.
A neurologist is normally required to assess which symptoms relate to FND and to monitor where required for any new symptoms.

Anxiety and depression can sometimes cause physical symptoms which overlap with FND symptoms. For example, panic attacks can present with symptoms such as pins and needles in the fingers or mouth and depression often causes poor concentration or fatigue.

Anxiety and depression are extremely common in patients with FND.

Treatment

Due to the diversity of symptoms that may present with a Functional Neurological Disorder, and the varied potential causes/triggers that can differ from person to person, treatment plans should be tailored to suit the person’s individual needs, with all health aspects being taken into consideration.

There is not a ‘one fix will fix all’ option, which can cause frustration for both the person with the diagnosis and clinicians, so it may take time to develop the correct treatment plan.

Historically the only form of treatment offered to those diagnosed with FND was psychotherapy given the misinterpretation that emotions were being ‘converted’ to physical symptoms. Due to a lack of current understanding, this is still often the case even if it may not be a necessary course of treatment. Different treatment options are becoming more available and, in many cases, proving to be more successful.

As mentioned earlier, FND can often occur at the same time as other incidents or illnesses occur also. Therefore, it can be a complex and complicated arena for both the patient and the therapist. However, please know that help is available.

I will discuss some of the other related issues here too:

Dystonia

Dystonia is a movement disorder in which your muscles contract involuntarily, causing repetitive or twisting movements. The condition can affect one part of your body (focal dystonia), two or more adjacent parts (segmental dystonia) or all parts of your body (general dystonia). The muscle spasms can range from mild to severe. They may be painful, and they can interfere with your performance of day-to-day tasks.

There's no cure for dystonia. But medications can improve symptoms. Surgery is sometimes used to disable or regulate nerves or certain brain regions in people with severe dystonia.

Causes

The exact cause of dystonia is not known. But it might involve altered nerve-cell communication in several regions of the brain. Some forms of dystonia are inherited.

Dystonia also can be a symptom of another disease or condition, including:

• Parkinson's disease
• Huntington's disease
• Wilson's disease
• Traumatic brain injury
• Birth injury
• Stroke
• Brain tumour or certain disorders that develop in some people with cancer (paraneoplastic syndromes)
• Oxygen deprivation or carbon monoxide poisoning
• Infections, such as tuberculosis or encephalitis
• Reactions to certain medications or heavy metal poisoning
• Complications

Depending on the type of dystonia, complications can include:

• Physical disabilities that affect your performance of daily activities or specific tasks
• Difficulty with vision that affects your eyelids
• Difficulty with jaw movement, swallowing or speech
• Pain and fatigue, due to constant contraction of your muscles
• Depression, anxiety and social withdrawal.

Oromandibular dystonia (OMD) is a movement disorder characterized by involuntary, paroxysmal, and patterned muscle contractions of varying severity resulting in sustained spasms of masticatory muscles, affecting the jaws, tongue, face, and pharynx. It is most commonly idiopathic (relating to or denoting any disease or condition which arises spontaneously or for which the cause is unknown), or medication-induced, but peripheral trauma sometimes precedes the condition.

There are many different forms of dystonia. These are:

• Generalised dystonia affects most or all of the body.
• Focal dystonia is localised to a specific part of the body.
• Multifocal dystonia involves two or more unrelated body parts.
• Segmental dystonia affects two or more adjacent parts of the body.
• Hemi dystonia involves the arm and leg on the same side of the body.

Some of the more common focal forms are:

Cervical dystonia, also called spasmodic torticollis or torticollis, is the most common of the focal dystonia. The muscles in the neck that control the position of the head are affected, causing the head to turn to one side or to be pulled forward or backward. Sometimes the shoulder is pulled up. Cervical dystonia can occur at any age, although most individuals first experience symptoms in midlife.

Blepharospasm, the second most common focal dystonia, is the involuntary, forcible contraction of the muscles controlling eye blinks.

Cranial dystonia affects the muscles of the head, face, and neck (such as blepharospasm). The term Meige syndrome is sometimes applied to cranial dystonia accompanied by blepharospasm.

Oromandibular dystonia affects the muscles of the jaw, lips, and tongue. It may cause difficulties with opening and closing the jaw, and speech and swallowing can be affected.

Spasmodic dysphonia, also called laryngeal dystonia, involves the muscles that control the vocal cords, resulting in strained or breathy speech.

Task-specific dystonia tends to occur only when undertaking a particular repetitive activity, such as playing a musical instrument, or handwriting. Examples include writer's cramp that affects the muscles of the hand and sometimes the forearm and only occurs during handwriting.

Musician’s dystonia is a term used to classify focal dystonias affecting musicians, specifically their ability to play an instrument or to perform.

Temporomandibular joint disorders

People may also suffer from TMD – temporomandibular joint (TMJ) disorders. Temporomandibular disorders are conditions affecting the jaw joints and surrounding muscles and ligaments. It can be caused by trauma, an improper bite, arthritis or wear and tear. Common symptoms include jaw tenderness, headaches, earaches and facial pain.

Causes

• Trauma, stress, anxiety, depression and PTSD.
• Grinding or clenching your teeth, which puts a lot of pressure on the joint.
• Wear and tear of the joint.
• A blow to the head or face.
• An uneven bite.
• Movement of the soft cushion or disc between the ball and socket of the joint.
• Arthritis in the joint.
• Stress, which can cause you to tighten your facial and jaw muscles or clench your teeth.

Symptoms include:

• Pain or tenderness in your face, jaw joint area, neck and shoulders, and in or around the ear when you chew, speak, or open your mouth wide.
• Problems when you try to open your mouth wide.
• Jaws that get "stuck" or "lock" in the open- or closed-mouth position.
• Clicking, popping, or grating sounds in the jaw joint when you open or close your mouth or chew. This may or may not be painful.
• A tired feeling in your face.
• Trouble chewing or a sudden uncomfortable bite – as if the upper and lower teeth are not fitting together properly. Learn more about the pros and cons of teeth alignment surgery.
• Swelling on the side of your face.

The GP may suggest:

• stronger painkillers
• relaxation techniques to reduce stress
• ways to improve your sleep

They might suggest you see:

• a dentist – if teeth grinding might be an issue
• a clinical hypnotherapist – if trauma, stress, depression and anxiety may be a cause
• a psychologist – if stress and anxiety are making your pain worse
• a physiotherapist – for advice about jaw exercises and massage

If these treatments do not help, you may be referred to a specialist in joint problems to discuss other options, such as painkilling injections or surgery.

Complex regional pain syndrome

And finally, complex regional pain syndrome (CRPS) is another condition that clients are contacting me for.

CRPS is a neurological disorder of unknown aetiology (cause or reason) that may lead to severe disability. CRPS, formerly known as reflex sympathetic dystrophy (RSD), is a clinical syndrome of variable course and unknown cause which is characterised by pain, swelling, and vasomotor dysfunction (changes in skin temperature and colour) of an extremity. This condition is often the result of trauma.

CRPS 1 is defined as occurring in the absence of definable nerve injury. Whereas, Type 2 CRPS, causalgia, develops after nerve injury; the term causalgia was coined by Mitchell in 1864 and derives from the Greek for burning pain

If you think you are suffering from any of these conditions, or any other related issue, please know that help is available.

Firstly, please consult your GP for a consultation. Secondly, seek the help of an experienced and well-qualified clinical hypnotherapist. Help is available.

I look forward to helping you and working with you very soon.