HNPP · Mental Health

HNPP, depression and anxiety

Anxiety depression hereditary neuropathy hnpp

This is one of the more difficult subjects to tackle. It could partly be because some HNPP sufferers worry about coming forward due to the stigma of mental health, or feel they may be overreacting. But rest assured, it is absolutely natural and completely expected.

According to Scott Berman MD, Psychiatrist and neuropathy patient, there is a strong overlap between neuropathy pain, anxiety, and depression. In his book, Coping with Peripheral Neuropathy, Dr Berman says each of the components can raise the risk for having the other two. As much as 30 to 60 per cent of patients with chronic pain develop feelings of depression and anxiety, while pain and depression can co-occur 30 to 50 per cent of the time, and each can cause the other.

As a result, anxiety can cause several issues that may lead to the development of these neuropathic types of symptoms. Just a small sample includes:

  • Hyperventilation – common when you have anxiety, and when you hyperventilate your blood vessels constrict which takes away blood flow from some parts of your body. Without blood flow, these areas start to tingle, burn among others.
  • Nerve firings – anxiety could potentially cause the nerves to fire more, which can also lead to this feeling as though your nerves are always activated and cause “nerve damage-like symptoms” that can be hard to deal with.
  • Over-awareness – When you’re overly aware of your body, you can have trouble moving them leading to issues with gait (walking style) and how your body feels.

So it’s hardly any surprise that it becomes a vicious cycle, as you may have anxieties over fear of relapse or worsening, disability, isolation, stigma or even fear of further pain.

So how do you find ways of coping?

Everyone has different strategies in dealing with anxiety and stress, however, if you feel particularly stuck, these may be of benefit.

  • Speak to your medical practitioner or GP, and share your fears – don’t be alone with them
  • Speak to the groups and networks available. Please find them on the Resources page
  • Speak to friends and family if reasonably possible, they may not necessarily understand, but a listening ear is always useful
  • Mindfulness based stress reduction programs combines aspects of meditation and yoga. Many hospitals and complementary/alternative medicine centres use it
  • Spiritual and faith based help
  • Exercise, massage and yoga
  • Medication treatment
  • Breathe better – make sure you slow your breathing down considerably if you’re hyperventilating. Take as long as 5 seconds to breathe in, hold for 2 seconds, and breathe out for 7. Slowing down your breathing is very important for controlling anxiety.
  • Distract your mind – you need to distract your mind from focusing too heavily on your body, because only by doing that can your body’s movements feel more natural again.

What about depression?

Depression in neuropathy is often confused with the condition. That is, continued problems in function are often attributed to “psychological” or “psychosomatic” issues. Bottom line: all pain is real, and physical symptoms most often have physical causes. The role of the psychiatrist/psychologist/counsellor is to help with the emotional issues that arise from the stress of a medical disease.

Depression and chronic pain share some of the same neurotransmitters – brain chemicals that act as messengers travelling between nerves – as well as some of the same nerve pathways, and depression and pain can interact in a vicious cycle. Depression magnifies pain, changing the brain’s sensitivity to painful stimuli and reducing a person’s coping skills. And the constant stress of experiencing chronic pain can lead to a cascade of other medical problems linked with depression, making it still more difficult to break the cycle.

Read: Side effects of medication for HNPP

There are also known side effects from some medication for HNPP that is said to cause severe depression. In the report Depression and Attempted Suicide under Pregabalin Therapy from 2014, the authors say one of the rare side effects include suicidal thoughts. Pregabalin is a compound originally developed for treating epilepsy. Meanwhile, it has shown positive effects on neuropathic pain as well as on general anxiety disorder and is therefore largely prescribed by neurologists, psychiatrists and, of course, general practitioners.

An FDA warning concerning self-harm in patients taking antiepileptic drugs was released in 2008, yet a relevant risk for pregabalin is postulated to be less than 1 per cent. In the above report, a 20-year-old man was admitted to a psychiatric ward for severe depression and suicidal thoughts, although it was his first episode of a psychiatric disorder.

The authors add: “After the patient retrospectively clearly correlated the start of pregabalin therapy with the onset of his depressive symptoms during exploration on our ward, we immediately discontinued the drug. Consequently, he reported a rapid decline in depressive symptoms, his mood remained stable, and he was discharged.

“Taking into account that certain antiepileptic drugs have been shown to be protective for patients with bipolar disorder concerning suicidality, but hazardous for patients with monopolar depression, for example, there may be critical patient variables also for pregabalin which remain to be elucidated.”

So you may want to talk to your medical practitioner about changing your medications if this seems to be the case.

Some common signs of depression include:

How you might feel How you might behave
  • down, upset or tearful
  • restless, agitated or irritable
  • guilty, worthless and down on yourself
  • empty and numb
  • isolated and unable to relate to other people
  • finding no pleasure in life or things you usually enjoy
  • a sense of unreality
  • no self-confidence or self-esteem
  • hopeless and despairing
  • suicidal
  • avoiding social events and activities you usually enjoy
  • self-harming or suicidal behaviour
  • finding it difficult to speak or think clearly
  • losing interest in sex
  • difficulty in remembering or concentrating on things
  • using more tobacco, alcohol or other drugs than usual
  • difficulty sleeping, or sleeping too much
  • feeling tired all the time
  • no appetite and losing weight, or eating too much and gaining weight
  • physical aches and pains with no obvious physical cause
  • moving very slowly, or being restless and agitated

Source: Mind.org.uk

When it comes to neuropathy sleep changes, low energy, poor concentration is common. As the 2014 anxiety and depression study says: “Clinical observations and epidemiological studies show frequent association of chronic pain with psychiatric disorders, including a high prevalence of major depression among pain clinic patients and a high lifetime comorbidity between neuropathic pain and mood disorders.” Hence depression can be a major excess when dealing with chronic neuropathic pain and fatigue.

How to proactively deal with depression

Following are several steps to help proactively prevent or manage both the chronic pain and associated depression that may develop:

  • Early diagnosis of depression associated with pain – many physicians are not necessarily trained to assess for depression during the course of treating pain. Talking to a physician about symptoms of depression, while still in the acute pain phase of pain, can alert a physician to the need to consider treatment of both conditions. An informed physician can suggest a treatment plan early on that treats the patient’s depression as well as their physical pain, giving the patient the best chance at a positive outcome.
  • Communicate about depression – depression and an emotional reaction to chronic pain are to be expected; they are understandable. Many patients do not speak to their physicians about their depression because they believe that once the initial pain problem is resolved, the depression, anxiety, and stress they are feeling will go away. However, secondary losses from a chronic pain problem, such as the loss of the ability to do favourite activities, disrupted family relationships, financial stress, or the loss of a job, can continue to contribute to feelings of hopelessness and depression even beyond the resolution of the pain problem. Talking to a physician about feelings of depression will keep the physician better informed and better able to provide appropriate care. Depression can affect the frequency and intensity of pain symptoms, and the healing rate. Getting simultaneous back pain and depression treatment will give the patient a better chance of a full recovery.
  • Seek multi-disciplinary care for pain and depression – a multi-disciplinary course of treatment that involves involving both a physician and a mental health professional can often provide the best outcomes. With a team approach, both the pain problem and the depression are monitored simultaneously, and both doctors can communicate about how each area affects the other. It’s important for physicians to understand that changes in the physical symptoms of pain can also be related to changes in a patient’s mental state. In addition, it’s important to note that some common treatments for pain (e.g. opioid pain medication, activity restriction, bed rest), can actually make depression worse. This worsening depression can then affect the physical presentation of the pain. If both physical and mental well-being are being monitored closely by medical experts, treatment and medication recommendations, including antidepressants, can be made that take both the physical pain and the emotional health of the patient into account.

Depression and anxiety can be painful when you’re already dealing with a whole host of other symptoms. And it can spiral the more you feel the effects of HNPP. So it’s important to notice any changes and try to get help as soon as possible.

It can be difficult to pick up the phone, but reach out to somebody and let them know how you are feeling.

  • Samaritans (116 123) operates a 24-hour service available every day of the year. If you prefer to write down how you’re feeling, or if you’re worried about being overheard on the phone, you can email Samaritans at jo@samaritans.org.
  • Depression Alliance is a charity for people with depression. It doesn’t have a helpline, but offers a wide range of useful resources and links to other relevant information.
  • The National Suicide Prevention Lifeline is a 24-hour, toll-free, confidential suicide prevention hotline available to anyone in suicidal crisis or emotional distress. A 24-hour an Online Chat in partnership with Contact USA is also available.
  • Crisis Text Line is the only 24/7, nationwide crisis-intervention text-message hotline.
  • Samaritans is a registered charity aimed at providing emotional support to anyone in distress or at risk of suicide throughout the United States.

Read: How to cope with grief and loss with HNPP?

 

HNPP · Mental Health

How HNPP can cause isolation

HNPP hereditary neuropathy isolation

After reading The Lonely City by Olivia Laing, it brought up the question – are some with hereditary neuropathy and HNPP living in isolation? Of course many live by themselves and do not feel lonely, while others with HNPP are managing fine, but chronic and invisible illnesses can become isolating, whether overtly or more insidiously.

“Pain causes this rupture because it inverts our normal perspective. Instead of reaching out to other people in work or play, we turn inward and self protective.”

David Biro M.D.

It may be as small as the awareness of the decrease of invitations by friends due to our physical limitations.  For some, that awareness grows to a more glaring, in your face, epiphany that friends that were always there before suddenly wish no part in your life -excuses a plenty.

This isolation turns into loneliness. Guy Winch, a clinical psychologist and author of Emotional First Aid, writes in The Huffington Post: “Despite living in an era of unprecedented potential for human connection (e.g., the internet, social media and mobile phones), estimates are that 40 per cent of adults over the age of 65 will experience loneliness.

“Indeed, the 2010 U.S. Census found that 27 per cent of households in America are single-person households, outnumbering all other groups. Of course, not all those who live alone are lonely and not all people who are lonely live alone.”

Why do we isolate ourselves?

David Biro MD, author of Listening to Pain: Finding Words, Compassion, and Relief, also suffered from isolation from depression. He said: “Part of what makes pain “painful” is its privacy and unsharability, the feeling of aloneness. That goes for physical pain as well as psychological pain.”

He adds: “Pain causes this rupture because it inverts our normal perspective. Instead of reaching out to other people in work or play, we turn inward and self protective. This is an instinctive, understandable response. Something is wrong inside of me and so I must attend and focus on the threat and make sure it doesn’t get any worse.”

It’s not the same as dealing with a broken leg, it heals and the person returns to life as usual in most cases. On the other hand, for many living with ongoing illnesses, “as the illness progresses, [people] must adjust each day to the disease, sometimes severe, sometimes in remission, and always present. The sense of health and vibrancy is, at best, diminished, and at worst, lost,” wrote Jackson P. Rainer, a leading authority on grief and loss.

And when you combine a sufferer who sees only their own pain with an outsider who can’t see it at all, the result is a widening of the normal barrier that exists between people. Hence in order to stop the isolation, you have to break down the wall that stops communication.

Tracy Rydzy, a social worker with chronic pain, said: “Going out for a little while doesn’t always help the loneliness, especially if pain increases when returning.” Though even with careful pain management, we cannot leave our homes as much as we long to.

So how do you break the barrier?

  • Make the pain communicable – figure out ways to make the pain shareable – through words or pictures or whatever other kinds of language can be summoned for the task.
  • Reconnect with friends and family – being a part of social activities, even if its incredibly infrequent, is an essential part of coping. It’s natural to retreat, especially when depressed, but just being around other people can make you feel better and help you cope.
  • Regular connections – use messages, emails, texts to stay in touch every day, whether it is Facebook, WhatsApp, or any other social media.
  • Arrange social activities to fit your needs – invite people to your home, or go somewhere accessible to you. I find when friends come over bringing one dish each can be sociable and helpful at the same time, or watching films with your friends at home. Negotiate your social activities.
  • Ask for help – if you do go out for example to the theatre, ask if they can accommodate you, and you explain your situation. In the past, they have given me seats while waiting outside, or areas to lie down during the interval.
  • Create spaces that fit your needs – making Facebook groups, speaking to others on Twitter, and even create a MeetUp group with similar needs can actually bring new people together. It takes a little productivity and initiative to get out of the funk.
  • Make the most of available aids – in the UK, we’re lucky in terms of certain benefits that can be utilised such as the CEA Card for those who want to take someone to the cinema with them; or a Please Offer Me A Seat badge for those with hidden illnesses on public transport. You can find out more here. It is worth checking what you have available in your own country and states as some provide special Leisure Passes in certain areas.
  • Speak to your medical practitioner – Doctors may be well equipped for the biomedical aspects of care but not for the challenges of understanding the psychological, social, and cultural dimensions of illness and health. They may be able to forward you information about groups, and counselling.

At the end of the day, you need to put your physical health first, so don’t feel guilty for taking some time away. But your mental health comes a close second, so put yourself first either way.

HNPP · Mental Health

HNPP and the impact of chronic pain on relationships

horizon-silhouette-person-sunrise-sunset-morning-1293906-pxhere.com

There are days where you just want to curl up in a ball and stay away from people, especially when you’re suffering from chronic pain from HNPP. Or generally hate the world for not understanding why you want to be alone or just basically recognised. The impact of one person’s neuropathic and chronic pain can produce a ripple effect on the people around us.

The problem is our connections with others whether they are friends, family, colleagues or acquaintances, make the difference between coping or finding ourselves feeling entirely misunderstood, isolated in our pain, by some, even judged for it.

Disclaimer: Everything written is based on personal and other’s testimonies, available journals and research. Please ask your specialist for more information.

The science behind the breakdown

According to a 2008 study by Professor S. Jose Closs based on how neuropathic pain can effect relationships, most research in this field has not differentiated between those who have chronic nociceptive pain (pain caused in response to injury or pathology) and those who suffer from neuropathic pain symptoms due to abnormal nerve function.

Most treatment is pharmacological, and little is known about people’s experiences of symptoms and how they affect daily life despite 8 per cent of 3,000 people in the UK claiming to suffer from it. [1]

The research found that participants said strains were placed on relationships within their families and intimate relationships. They also described difficulties in maintaining, as well as losing connections with friends. Not to mention the frustration in their dealings with uncomprehending healthcare professionals, disability services, benefits agencies and employment services, which was common.

relationships chronic neuropathic pain HNPP hereditary neuropathy

For the male participants, some felt that they were unable to perform traditional male tasks and fulfil their roles as sons, partners and fathers. These included heavier household chores such as gardening, being able to protect their loved ones. While for women, a few described their inability to perform their usual roles and participate in normal family activities. The impact on children was particularly noted. As a result, sufferers behaved aggressively or became quite negative out of frustration. [2]

Some reported not having the emotional energy to deal with other people’s concerns, and expressed how they had become resentful towards others who relied on them. It can be seen in these terms:

  • Loss of family roles
  • Social withdrawal
  • Being believed / understood

The nature of the disability resulting from neuropathic pain is further complicated by the invisibility of pain. And if you’re like me, who tends be rather independent, you fall further into isolation.

What can be done?

Part of pain management involves accepting these changes and using them to form better and closer relationships with the ones you love. By learning to better cope, you will be able to manage pain and keep friends and family close.

  • Find a communication balance – The people in your life need to know how you are feeling. Staying silent will only cause them to feel estranged from you. But try not to overwhelm them by sharing too much. This is where a happy medium needs to be struck.
  • Discuss your sexuality with your spouse – Make plans for encounters that fit into your medication schedule and the ebb and flow of your daily pain.
  • Don’t let chronic pain keep you from interacting with friends – “On the one hand, we don’t want to over-commit to others and then have to cancel. On the other hand, we don’t want to unnecessarily isolate ourselves too much,” says patient, advocate and author, Toni Bernhard. Bernard says to make an educated guess and hope for the best, but don’t push yourself too much, but at least give enough notice if you do end up cancelling plans. Keep in contact, however, in the best way that you can.
  • Take on manageable household responsibilities – If you find yourself unable to perform certain chores that were once your responsibility, replace them with new tasks that you are able to perform. This will keep you an active and contributing member of your family.
  • Ask for help – Giving your loved ones a chance to help you in some way can make them feel closer to you. Asking for help is never a sign of weakness, instead it allows others who feel helpless to understand how they can assist.
  • Be compassionate to yourself – Remember that you are doing your best, you are dealing with incredibly difficult circumstances so be kind to yourself. Speak to yourself as if you are a friend of yourself or a young child, without judgement, without criticism, without drama. As author Jack cornfield said, “If your compassion does not include yourself, it is incomplete.”

For persons with chronic illness and/or disability, everyday relationships and support processes are central to understanding the meaning of illness, but the particularly compelling portions of this story are the commitments and successes in re-negotiating relationships.

As Renee Lyons writes in Personal Relationships, Illness, and Disability: “Illness and disability do not merely comprise a sad person’s story, but an opportunity for intimacy and collaboration in relationships – an opportunity for community in the truest sense.”

  • 1. Page 403, “The Impact of Neuropathic Pain on Relationships”, Journal of Advanced Nursing – March 2009, Jose Close, S et al.
  • 2. Page 405, “The Impact of Neuropathic Pain on Relationships”, Journal of Advanced Nursing – March 2009, Jose Close, S et al.
  • Recommended reading – Personal Relationships, Illness, and Disability, Renee Lyons
HNPP · Mental Health

How to cope with grief and loss with HNPP?

hnpp hereditary neuropathy grief loss bereavement identity

Coming to terms with your new situation i.e. a chronic condition, can be devastating. And for many, getting a diagnosis for HNPP can be that, a life sentence. The idea of having to change your identity can feel like a death, especially if you had tied a lot of your physical life around to your sense of self.

“Severe illness wasn’t life-altering, it was life-shattering. It felt less like an epiphany—a piercing burst of light, illuminating What Really Matters—and more like someone had just firebombed the path forward.”

When Breath Becomes Air – Paul Kalanithi

Not being able to play guitar after 22 years was particularly difficult to me, in which I’ve always referred to myself as a musician, and I’ve always used music as a sanctuary. And for many others it could be their career, the role they have in their family, or the activities that they do.

But are we ‘grieving’?

According to counsellor Andrea M. Risi, being diagnosed with a chronic illness such as HNPP can be analogous to losing a loved one: you! The multitude of losses from a living situation, job to relationships can add up and can negatively affect your mental health.

After a diagnosis it could be days, weeks, months, or even years that you may spend going through the process of grieving. There is no time frame for grief; for some it may be life long. Risi says that’s a normal part of the process.

Disclaimer: Everything written is based on personal and other’s testimonies, available journals and research. Please ask your specialist for more information.

Elizabeth Kubler-Ross‘ classic stages of dealing with dying, addressed in her notable book On Death And Dying, is useful for looking at dealing with chronic illness. The stages she identifies are denial, anger, bargaining, resignation, and acceptance. If you are still in denial you are unlikely to accept a change in your role.

  • Denial – In this stage, many people simply don’t comply with medical advice or treatments because they’re “not sick,” denying the diagnosis to yourself, but also to your family and friends.
  • Anger – you might blame yourself for ‘causing’ the disease, the doctor who diagnosed you, or even friends and family members who don’t have the illness, feeling that they don’t have an understanding. Anger can be expressed outwardly or kept festering inwardly.
  • Bargaining – This stage is full of all the ‘what-ifs’ and ‘if you do this’. You might try to bargain with your doctor so you don’t have to take medicine or follow through with treatment, though in the long-run it will only end up hurting you. Sometimes you may just have to say Que Sera, Sera (whatever will be, will be).
  • Depression – when it all finally sinks in, you might feel depressed, helpless or generally sad.  Depression can cause you to withdraw from others, have constant low energy or make you feel empty and worthless. That being said depression is treatable in the face of virtually every known physical disease.
  • Acceptance – this is when you have come to terms with your illness, founding coping mechanisms, and have learned more about the prognosis. You’ve learned that while you cannot control having the diagnosis, you can control what you do about it on a regular basis.

One thing that I have found is that these are interchangeable on any given day. It can move from anger to denial in the space of an hour so there is no linear process.

Cheri Register writes about trying to find a ‘happy medium’ while searching for an identity and managing to deal with the effects of chronic illness.

  • You can tough it out with too little help / become overly dependent on your doctor and family
  • You can keep your illness a secret and avoid thinking about it / you can discuss it openly and become self-pitying
  • You can ask for help and risk being a burden / be too independent and isolate yourself
  • You can push yourself to the limit and risk getting sicker / you can do too little and be more of an invalid than necessary
  • You can be angry about your illness and then bitter / you can focus only on counting your blessings and risk being self-delusional

(From The Chronic Illness Experience: Embracing the Imperfect Life)

Hence the key is to find a suitable balance between all of the extremes.

What can you do about it?

Ending this vicious cycle requires a lot of proactive thinking. Debbie Dawson, RN and chronic peripheral neuropathy sufferer, wrote this practical, simple guide that can help you work your way through these questions. Make a list for each of the following situations:

  • Things I can no longer do.” (Examples: Power walking, climbing more than three stairs or steep incline, running a race, driving a car without hand controls, lifting heavy items, standing for any long period, climbing a ladder, holding a job, taking a walking tour, or any major chore around the house).
  • Things I couldn’t do before, but can now.” (Examples: Have time to write, spend more time with family and friends, spend time listening to teenage grandchildren, have enjoyable dinners with friends, understand the challenges faced by the handicapped and disabled).
  • Things I do the same as before.”  (Examples: Sit in the sunroom enjoying sunsets, watch educational TV, write articles, manage investments and home budget, eat, sleep, read, use my computer and use my cell phone, fish off a pier, watch the deer outside my camper, take pictures, enjoy my dog, help other neuropathy patients, support research).
  • Things I can still do, but differently.” (Examples: Go to the mall using an aid, walk the dog with the scooter, write using a thick pen, go on an ocean cruise with the scooter, hunt turkey with help and a blind, go camping with automated equipment, drive – but limit driving to not more than four hours, go up a few stairs by pulling with arms on hand rail, stay active).
  • Things I can do differently, just not ready to yet.” (Examples: Ride the scenic train in Canada, have house modified for handicapped access, purchase a vehicle for the handicapped with hand controls).

(Page 23, “Coping With Peripheral Neuropathy”, Berman, Scott M.D)

Chronic illness sufferers are faced with questions about how they will present themselves and how they will build their life situation. New activities and lifestyle may assist this process and provide a new focus for the energy that was invested in grieving. Developing a meaningful life doesn’t just happen. So here are some ways that might help:

  • Finding new opportunities – It may mean putting time and energy into new hobbies and new relationships or looking for opportunities for personal development or spiritual growth. All of this may be constrained by the limits imposed by illness but you can do this at your own pace, one small step at a time if need be.
  • Thinking about yourself differently – You can change negative self-talk or images of ourselves that are not useful. Attitudes that focus on personal strengths and positive outcomes of the illness experience, rather than limitations, seem to be conducive to moving on with life.
  • Find a network of people – You need to honour your grief journey, nurture yourselves as you grieve your losses and reach out to others to share the burden of loss. This is where having access to a network of people experiencing long-term illness can be so helpful. Feelings can be shared in a supportive understanding context.
  • Talk to specialists – Finding a counsellor can be vital in moving past the grief hurdle. Occupational therapists can help and work with you on adaptive equipment, ways to conserve energy, and other techniques that permit you to do more with your neuropathy.
  • Set small, realistic goals you can meet – your therapists (physio or otherwise) can help you set and keep these aims. If you aim too high, you could fail and probably stop altogether.
  • Knowledge is power – make sure you know your rights, whether they are employment-based or otherwise. Keep up to date with developments in your condition, as well as treat anything else that comes your way (a common cold can feel much worse with HNPP). Don’t trust anything that claims to be 100 per cent workable, and avoid any other dodgy scams.

Everyone is at a different stage, so understanding between HNPP’ers is crucial to get through the process.

Wishing you all health and happiness.