Medication Side Effects Coping Strategies

Today's post from psychologytoday.com (see link below) is another advice post from Toni Bernard and one that is particularly applicable to people living with neuropathy. Because most of the drugs prescribed to treat neuropathy symptoms are designed for other diseases, there is often a risk of side effects. These side effects are mainly annoying and  influence the quality of our lives but some are plain dangerous and need to be monitored by your doctor. The point of the article is how do we deal with these side-effects and that frustrating feeling that they're actually not necessary? It's often a question of standing back and looking at the situation objectively but it's never as easy as that. This article gives some helpful hints on how to live with the results of the medications meant to reduce our other symptoms.
 

How to Cope with Side-Effects of Medications
Strategies for weathering the side-effects of prescription drugs
Post published by Toni Bernhard J.D. on Mar 29, 2015 in Turning Straw Into Gold

Many of us who suffer from chronic pain and illness are on medications with side-effects that, in some cases, are as difficult to cope with as our initial health problems. I’ve recently started a medication that I’m scheduled to be on for five years. I’m taking it because it significantly reduces the risk of a recurrence of my recent bout with breast cancer (if you want, you can read about that here).

And so, yes, I’m taking the medication… but I’m also struggling with its physical and mental side-effects. This article is not a substitute for talking to your doctor about any difficulties you’re encountering with a prescription drug. That said, I want to share two strategies for coping with the side-effects of medications.

Start where you are

In my book, How to Wake Up, I write about Pema Chödrön’s practice called start where you are. I describe how it’s helped me make peace with living day-to-day with a number of unpleasant symptoms associated with a chronic illness I’ve suffered from since 2001.

With the help of this practice, instead of mounting a daily—but ultimately losing—battle against those symptoms by telling myself how much I hate them and how I must get rid of them, I say to myself: “Okay. These symptoms are my starting point today: I feel sick and I’m in pain. Now, how can I make the best of this day?” Pema Chödrön’s start where you are enables me to be present for my life as it is and to try and enjoy it, instead of spending my time complaining about a life I can no longer lead.

This new medication has brought along with it a new start where you are challenge for me. In addition to coping with the flu-like symptoms from my longstanding illness, I’m now having to live with half a dozen side-effects of this new drug. Three examples: sleep is even less restorative than it used to be; my right thumb is so swollen and painful in the morning that I can barely bend it for a few hours until it loosens up. (“Joint pain or stiffness” and “Problems with your fingers while gripping” are included on the list of possible side-effects for this medication.)

And I’ve been feeling low mentally. (“Mood changes” is also on the list of possible side-effects.) Despite being chronically ill for many years, I’ve almost always looked forward to the day, no matter how sick I’ve felt. But on this medication, I can feel a change in my mental chemistry. I experience it as a low-grade dread of the day ahead and a lack of motivation, as if I can’t be bothered to do anything. This is very unlike me.

At first, I felt tossed about by these physical and mental side-effects. I was irritable most of the day and complained a lot about the medication, even though I continued to believe that its benefits outweighed the negatives from its side-effects. No doubt about it: I was at a loss as to how to skillfully handle what was happening to me.

Then I remembered Pema Chödrön’s start where you are. I thought about how complaining about side-effects did nothing to diminish them; in fact, it increased my mental suffering. I decided it would be better for me to stop fighting what was happening and to begin treating how I was feeling as my starting point.

I’ve been working on this, and it’s turning out to be more helpful than I’d imagined. This change in perspective has even opened my mind to the fact that no medication’s side-effects are set in stone. My body may adjust to some or all of them (the initial side-effect of shirt-drenching night sweats has already improved). I’d been so busy complaining about the medication that I hadn’t considered the possibility that some of the side-effects might be temporary—despite the fact that the drug information sheet contains that very statement.

If you’re on a medication that has unpleasant side-effects, I hope you’ll try Pema Chödrön’s practice. I’m confident it will feel better than being trapped in anger and resentment over something you don’t control (just like you don’t control having medical problems in the first place). To start where you are, acknowledge how you feel—side-effects included—and let that be your starting point for the day.

Okay, having started where you are, then what? That takes me to my second suggestion.

Find a work-around

As with start where you are, finding work-arounds is something I've been doing for years to cope with the symptoms of my chronic illness. If I have a task that has to get done, such as pruning some bushes, instead of doing it all at once, I make it a two- or three-day project. If I wake up feeling too sick to leave the bedroom, I try to come up with ways to enjoy myself on the bed that day.

Since I'd already been looking for work-arounds with my chronic illness, I decided I should try it with the side-effects of this medication.

I started with my right thumb. Because I’m right-handed, until my thumb loosens up, I’m limited in what I can do. I can’t get the toothpaste cap open, let alone hold onto the cord I use to pull the blinds up in the bedroom. Some days, I can’t hold a pen. When this first happened, I spent my mornings complaining to my husband and resenting the injustice of it all. He was sympathetic and supportive, but this was not pleasant for either of us.

Then one morning I said to myself: “Okay, first, start where you are: your right hand is of limited use for a few hours after you get up. That’s the way it is.” Then I looked for some work-arounds. I discovered I could use my left hand for simple tasks, such as unscrewing the toothpaste cap. I’ve learned to pull the blinds up without using my right thumb. I postpone other tasks until my thumb has loosened up. Life is much more pleasant for me and for my husband since I’ve started working around what I simply cannot do.

Finding a work-around for my low mood has proven to be more of a challenge. How do you work around the feeling that you don’t want to be bothered to work around a feeling?! It took a while, but here’s what I discovered works for me: gentle force. By gentle force, I mean compassionate force, which means I start by acknowledging how hard it is to feel down and motivationless…and how it isn’t my fault. Having done that, I then force myself to start doing something.

Without that initial dose of self-compassion, I don’t think force would work for me. Being kind to myself helps me muster the energy to get going, and once I’m “up and running,” my mood improves. It reminds me of a lawn mower that’s stubborn to start. You have to keep pulling on the starting cord. It may take a dozen times, but once the mower starts, it hums away.

How I came to write this very piece is an example. The idea for it came to me when I’d gotten up in the middle of the night to use the bathroom. Before I started on this medication, when I’d have one of those middle-of-the-night ideas, as soon as I’d I get up in the morning, I’d want to get my thoughts down on paper. But not this time. When I woke up, I couldn’t be bothered to write anything. I felt too down.

It was time for a work-around. First, I acknowledged with compassion how sad this lack of motivation is for me. Then I forced myself to open a document, label it “side-effects of medication,” and type something—anything—about this topic. Having forced myself to do this, I was off and running like that lawn mower; I even enjoyed getting my initial thoughts written down. When it came to editing (and I do a lot of it), I had to go through this same process again—a little self-compassion and a little force—but once I got going, I enjoyed it.

I recently had to use gentle force as a work-around with my friend Dawn. We had a date to meet at a nearby café for an hour. I came close to cancelling, even though I was feeling up for it physically. Mentally, however, I couldn’t be bothered. I didn’t want to see anyone or visit with anyone. Fortunately, I tried a “mental” work-around: I gently forced myself to leave the house and go meet her. I had a great time.

***

So that’s my plan for coping with the side-effects of this medication. If they persist, it may turn out to be a five-year plan (although I will raise what’s happening with my doctor at our next appointment).

If you’re experiencing side-effects from one or more medications, I hope you’ll start where you are and then look for some work-arounds. My heartfelt best to everyone.

© 2015 Toni Bernhard. Thank you for reading my work. I’m the author of three books:

How to Live Well with Chronic Pain and Illness: A Mindful Guide (Fall 2015)

How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow (link is external) (2013)

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers (link is external)(2010)

Visit www.tonibernhard.com (link is external) for more information.

https://www.psychologytoday.com/blog/turning-straw-gold/201503/how-cope-side-effects-medications

Coping With Chronic Pain Symptoms Family And Friends

Today's valuable post from princessinthetower.org (see link below) follows on from yesterday's article about learning to cope with the pressures of chronic pain and discomfort. This applies to neuropathy patients too - don't underestimate your condition! The article comes from a different angle to that of yesterday and is equally lengthy but is equally useful in that you can choose from the pieces of advice given, according to your own situation.

How to Cope When Chronic Pain Affects Friends, Family and Social Life
March 14, 2015 by Princess 

When our lives have been so devastatingly altered by chronic pain and illness, with not a single facet untouched, the support we receive from friends and family becomes all the more essential. But one of the many ironies of a life with chronic pain is that at the very time you need the love and support of those you care for most, those relationships are so often challenged and affected by the same cause of that need.

In the recent pain support survey that so many of you kindly did (*enormous thank you* ~ you can still find the survey here), many report that one of the greatest obstacles is not with our bodies but in relations with those closest to us. Our friendships and connections with family can make the difference between coping or finding ourselves feeling entirely misunderstood, isolated in our pain, by some, even judged for it.

Dealing with this on top of the symptoms can naturally be devastating for pain patients. Yet the lessons of living in pain run deep, and even the darkest times can be illuminated by the slenderest light. This post focuses on the effect of pain on our relations with others and offers a few tips on how to cope.

Changing Relationships

“Chronic illness throws a monkey wrench into our relationships,” says Susan Milstrey Wells, author of A Delicate Balance: Living Successfully With Chronic Illness. “We may seem as foreign to the people who love us as if we had begun speaking a different language. Our family and friends still want us to be the mum who works, the dad who plays baseball in the backyard, and the friend who meets them for lunch.”

“In turn, we want to be treated as the same loving spouse, parent, and friend we always have been. A large part of the responsibility for making those relationships work falls to us. We have to educate our family and friends about our disease, allow them to express their emotions openly, and clearly state our limits and our needs. Also, we have to expect these changes to be unsettling.”

We want to be treated as the same person we have always been. #chronicillness

Chronic Pain and Socialising

Planning a social life around chronic pain and illness is hugely frustrating for everyone involved and – for those who are not in it for the long haul – can be swift to dissolve friendships. If you’ve ever known someone who keeps on saying that they want to catch up but never commits, or a friend who is constantly cancelling on you at the last minute, you know how frustrating that flakiness is.

Yet in our ever-erratic, unpredictable illness, our chronic pain can make us mimic that flaky friend to perfection. “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 of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, Toni Bernhard.

“This constant need to assess what’s best for us to do is hard and exhausting work. In the end, because of the uncertainty of our symptoms, most of us must simply make an educated guess and hope for the best.”

Planning a social life around #chronicpain is frustrating for everyone involved.

Never Knowing How We’ll Feel

The ongoing uncertainty about how we’ll feel each day makes planning impossible. “It’s hard to make plans because we can’t be sure how sick we’ll feel or how much pain we’ll be in on any given day. Even after I’ve woken up, I don’t know how I’ll feel as the day progresses because my symptoms can flare at any moment,” says Toni Bernhard.

“In addition, resting for days in advance of a commitment doesn’t assure that I’ll feel okay when the day arrives. It took me a long time to even be able to begin to make peace with the uncertainty of my symptoms. It’s an ongoing challenge, that’s for sure.” Some pain patients also feel that others expect too much from them, so believe they are letting them down in some way if they can’t keep up, which leads to more unhelpful thoughts.

Cancelling at the Last Minute

Just as others are perplexed by the fluctuation in symptoms, especially the speed with which a flare can transform us from being happy and engaged with someone, to collapsing in a voiceless heap, we too are equally perplexed. We can do everything within our power and planning to see our loved-ones but there are times when it simply does not help, or the pain flares so viciously, we are entirely powerless in controlling it.

Only you know which decisions to make to best manage your symptoms. If you are unable to do something or have to change plans you’ve made with friends, it’s important to communicate this but don’t feel obligated to give long explanations or grand apologies, though I know that is natural. We obviously feel bad, sad, and upset but the subsequent guilt at letting another down will only serve to depress you. 

One Event = Whole Day’s Preparation

A single event, such as seeing a loved-one means our entire day is built around that event. From waking-up, everything is considered and for many of us, we cannot do anything we want to before the event as it jeopardises it. So when we do have to cancel, it’s not just the event but an entire day wasted, us in pain, yet we were never able to even see that friend. This is frequently ignored, especially by those who get annoyed at us for being in pain and needing to cancel.

It’s complicated as we long to socialise, to see those we love but the depth of understanding needed to truly comprehend the constant evaluation, uncertainty and ongoing management of our pain, is only grasped by a select few. These friends are perhaps the finest of all as they do not get angry or feel put out if we must cancel at the eleventh hour, nor do they mind it if our plans are cut short because they understand that we are doing everything we can. It just doesn’t always go to plan.

Seeing a loved-one means the entire day is built around that event. #chronicpain

Evaluating Everything

When you look perfectly healthy but cannot participate in activities such as a short walk with friends or a party, explaining why is often difficult and always tiring. We naturally become exhausted explaining over and over why we cannot partake.

It also breaks our hearts when we keep having to explain that we’re not able to do something that we would truly love to, even if it was ‘just’ a walk with friends or a drive in the countryside. Though of course there is no ‘just’ about it when for the most part, you are stuck indoors because of your pain and illness.

Living with chronic pain and illness involves a constant evaluation of the impact that various activities might have on our pain, fatigue, and other symptoms. This painstaking (pardon the terrible pun), and meticulous pacing often requires difficult choices about whether or not to engage in an activity that others do without a second thought.

Living in #chronicpain involves a constant evaluation of the impact activities have on the pain.

Not Knowing How to Act Around Pain

“We may lose friends because we can no longer share a sport or hobby with them, or because we don’t seem to be as much fun as we used to be,” says Susan Milstrey Wells. “Sometimes our friends just don’t know how to act around us when we are ill.”

Being so misunderstood by loved ones and losing the intimacy once shared in formally close friendships naturally hurts. Human beings are social creatures. Our sense of who we are and our place in the world is forever influenced and redefined by the nature and quality of our interactions and relations with others. Yet chronic illness inevitably changes relationships. 

Sensory Overwhelm and Brain Fog

Another aspect of socialising with pain that becomes difficult, even impossible is trying to interact when the pain rises because of sensory overload and makes it impossible to think. The more people in the room the greater the stimulus on your nervous system, and consequently, your pain.

While you are trying to listen, engage, think of your responses too, any additional noise, people, and especially music can make brain fog and sensory overload exacerbate, making it painful physically and emotionally. The desire to have and maintain closeness in friendship and family is sadly made all the more impossible because of the very symptoms that thwart it.

Many pain patients, especially those with severe pain conditions that mostly leave them house-bound, naturally struggle to see, speak to, or socialise anything close to what we long to. Though it’s humble compensation, when we do connect, it does make it all the more wonderful, Skype too, is a beautiful means for those with pain to see their friends and chat.

Being Treated Differently

When you have an illness that is so hard for others to understand, others may treat you differently. Even those who fully support us can change in how they relate to us. We want to be treated as whole people, and adults, not ’the one with pain’ but may be treated like shadows of our former self, exclusively defined by our pain or illness, or worse as dependant children.

“I’ve had people talk to me as if I’m a child. There’s a word for this frustrating phenomenon: infantilization. The unpredictability of how we’ll be treated by others can be extremely stressful,” says Toni Bernhard. “Will they understand that chronic illness hasn’t turned us into children? Will they speak to us in a pitying voice? Will they shy away from meaningful interaction altogether, as if we’re contagious?”

Toni offers two strategies for handling this particular uncertainty: “First, I reflect on how even well-intentioned people may behave unskillfully for reasons related to their particular life history and their cultural conditioning. This helps me not to take their behavior personally. Second, I remind myself that, despite this illness, I know in my heart that I’m a whole and complete person; then I re-commit to making sure that’s good enough for me.” 

Talking About Our Pain

If we talk about our health problems, loved-ones may respond judgmentally yet in keeping quiet about our health issues, or the severity of the pain and symptoms, perhaps even acting ‘healthy’, we risk leading others to misunderstand what we can and cannot do. Additionally, by keeping quiet, we’re also passing up the possibility of receiving much-needed support, emotional and practical.

“How much you talk about your pain and other difficulties is a personal matter, affected by your personality, the situation, your culture, and the personalities and cultures of others in your life,” says Lynette Menefee Puiol, Ph.D. “For example, some friends might think it is not polite to ask how you are doing, while others think that not asking indicates that they don’t care.”

“There is a delicate balance between sharing enough so people will understand, and knowing that talking about your pain has a negative effect on relationships,” adds Lynette, who suggests having a ‘script’ prepared when you don’t want to say much, such as, “I don’t like to discuss the details, but thanks for your concern.” Instead of talking, some pain patients use a sign or a number system to communicate when pain flares-up or it is particularly difficult to speak. 

Exceeding Limitations

The nature of invisible illness and our fluctuating symptoms can lead to an equally fluctuating level of support. Since others cannot see our pain, sometimes even those closest to us find it hard to believe that someone who looks healthy can have so many severe symptoms and limitations. We may be misunderstood or expected to exceed our limits by even those we love the most, no matter how much we explain that we cannot.

This of course is hurtful emotionally as well as physically if we do go over those limits. Yet sometimes even those we think understand show they do not. We might try to ‘keep up’ only to pay for it so dearly later but of course the flare-ups and recoveries are as hidden as our pain is. So that side of living in pain is also so vastly misunderstood, which can also affect friendships and relations with family. 

Unpredictable Symptoms

Everyone with painful neurological conditions and invisible illness knows how tricky it is to manage our unpredictable symptoms and limitations but just as we struggle with it, our friends and family may think we are exaggerating our pain or mismanaging it, which may strain in turn friendships and relations with family.

Loved-ones who see us ‘able’ to carry out activities, though obviously oblivious to how painful these actually are, are then confused by our need to rest and recover, or allow that invisible pain to lessen. Oblivious to the pain involved, aftermath, or inability to repeat that activity, this creates doubt and may lead to their questioning of our pain, in turn affecting the closeness and connection in our relationships and friendships.

The swift climb from ‘normal’ pain to being entirely unable to speak because of a flare can also be perplexing to others. Of course not everyone reacts in this way. Some friendships are deepened through our illness and pain but if we are judged on something that is so out of our own control, it naturally makes us feel even more isolated, especially as the reality is so beyond the scope of our loved-ones’ own experience and therefore understanding.

Changing Needs, Changing Relationships

The world of the chronic pain patient, no matter the cause, shares the need to be understood. We don’t want pity but understanding. Not sympathy but empathy. When friends and family change how they respond to us it can make life with pain even more difficult. Even if initially our loved-ones respond with kindness and concern, that may change as time passes and we don’t ‘get better’.

Another way our relationships change is that we may rely on others in new ways, something that can be difficult to acknowledge even to ourselves, let alone in communicating those needs to others. We may feel embarrassed, flawed, or inadequate because of the pain. It’s natural to worry that others may be resentful of our needs because of disability and pain but that frequently leads to those needs not being met.

We don’t want pity but understanding. #chronicpain #chronicillness

Compassion Fatigue

Sometimes our friends and family are there for us only to slacken that support when things don’t improve. They may become frustrated in their role if they are a caregiver or a family member, or simply misdirect their own feelings about your illness at you, which is always hard. Your friend you went out every week with is fed-up of waiting, or your family stops asking how you are.

When even those you thought supported you get compassion-fatigue, or grow a little clipped or angry at you ‘never getting better’, take comfort in your own inner strength and remember that new people do come into your life, online and in person, especially now with so many online support groups.

Distance from Illness and Pain

Watching a loved one struggle with pain often makes others feel helpless and uncomfortable. They may also be experiencing fear, disappointment and loss. These emotions can be powerful motivators. It hurts for us, of course it does, but denial can be their own means for coping, how ever hurtful that is to us. They may simply feel too uncomfortable to acknowledge our pain and ill-health.

Some reactions are also often complicated by feelings of guilt for being healthy and able to walk, run, get out, or simply unable to share aspects of their lives that they know you can now no longer be a part of. Remember that others have their own challenges and lives to lead, that everyone has their own battles to face but above all, keep in mind that others’ reactions usually have far more to do with them than with us.

Keep in mind that others’ reactions usually have far more to do with them than with us.

Letting Go

I used to have a friend who was one of the kindest you could hope to meet. Yet when CRPS began, although the initial reaction was one of concern and compassion, the distance was evident. That grew to increasingly infrequent visits, until it became all too apparent that the pain made them too uncomfortable (as ironic as that sounds to us in pain). Their need to create distance was as they could not deal with it, and many people cannot. Illness, as perpetuated by our youth and health-adoring society, doesn’t sit well for many.

While some relationships are deepened by the challenges of chronic illness, we may need to accept that we must let others go. Letting go is a part of life but with chronic illness and pain that teaching acquires a whole new depth. Of course it hurts if someone you love leaves but for your sake, letting go is often the most healing action you can take. Just as our lives shift and evolve, we too change and grow, so do the people we share it with. Instead of focusing on the heartbreak of losing loved-ones to your chronic pain and mystifying illness, let go, have compassion for yourself, them too in letting go, and know that new friends do appear. 

Self-Compassion

“Ultimately, as we strike a delicate balance between our own needs and the demands of our most important relationships, we grow in self-awareness, creativity, and acceptance,” says Susan Milstrey Wells. “We can’t be sick successfully without learning to love ourselves, and when we accept our own limitations, we’re much more likely to let those around us be less than perfect too.”

Self-compassion attains a whole new height when it comes to living with chronic pain and illness. We are so frequently hardest on ourselves, and when we lose those we love, all the harder. Sometimes that loss, that separation from friends we considered for life can lead us to this dark and lonely place.

“If your #compassion does not include yourself, it is incomplete.” Jack Kornfield #chronicpain

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, without judgement, without criticism, without drama. Having self-compassion means to fully be with yourself in awareness, much like a good friend, with the willingness to be a loving companion to your own pain.

Self-compassion also brings care and concern for ourselves; warmth, love, and kindness for our challenges too. It’s a gentleness within you that permeates with acceptance, unconditional love and intimate understanding. As author and Eastern teacher, Jack cornfield said, “If your compassion does not include yourself, it is incomplete.” 

Finding Friends in the Spoonie Community

One way to cope with the ongoing challenges is to make friends with others who truly understand those that you face, on a day-to-day, moment-to-moment basis. Finding others who are suffering with similar symptoms is nourishing and connecting with others who live with chronic pain can provide much comfort. Although they may have a very different illness or condition to your unique combination, they have the ability to be empathetic, encouraging, and a great source of support precisely because of their direct experience.

Yet just as the night is darkest before the dawn, so too can the sadness in our lives be lifted by new people who come into our lives. If you are reading this after being recently diagnosed and fear the loss of friends, take heart in the fact that so many new people will come into your life; brave, inspiring, beautiful, compassionate people.

Some feel their friendship circle actually expands after a diagnosis, or, perhaps more vitally, if you reach out to others in pain online, or in support groups. The capacity for human connection is something that even chronic illness and pain cannot take away.

http://princessinthetower.org/how-chronic-pain-affects-your-friendships-and-what-to-do-about-it/

Coping Strategies For Pain

Today's article from about.com (see link below) is another one offering advice about techniques you may want to try to help control your pain. Much of it is useful but it does require a certain amount of self-discipline and an open mind. You never know, when all else fails and the pills are still not working, these strategies may come in very useful.

How to Cope With Chronic Pain

Stopping Pain Anxiety in its Tracks

From Erica Jacques, former About.com Guide

If you have chronic pain, it may be hard to imagine life without anxiety. Constantly being in pain is stressful, and can lead to feelings of fear, helplessness and despair. Feeling bleak about the future of your chronic pain condition? Then keep reading, because there is hope. There are ways to learn to cope with chronic pain.

Learning to Cope

Effective coping strategies can impact your pain. Coping strategies give you a sense of control over your pain, even when it is intense. Anxiety can intensify feelings of pain and disability, so it important to come to terms with your condition. Regaining control of your situation can help lower your stress. Learning to cope with your chronic pain can reduce your anxiety, putting you back in the driver’s seat.

While coping strategies won’t necessarily take your pain away, they can help you get it to a level that you can deal with. At the very least, they help keep your pain from getting worse due to pain anxiety. Some potentially effective coping strategies include acceptance, mindfulness and value-based actions.

Accepting Pain - Accepting Your Diagnosis

You have a chronic pain condition. You may be in pain for a long time. It could last for the rest of your life. How could this not cause anxiety? The bigger question is, can you find a way to live with your chronic pain?
Accepting pain is not easy. It may even feel like giving in. Learning to accept your chronic pain condition may take a long time, especially if you are still in the grieving stage. However, acceptance is the first step in letting your anxieties go. Here are a few ways to get started.

• Keep a pain journal
• If you have chronic pain, it may be hard to imagine life without anxiety. Constantly being in pain is stressful, and can lead to feelings of fear, helplessness and despair. Feeling bleak about the future of your chronic pain condition? Then keep reading, because there is hope. There are ways to learn to cope with chronic pain.

  Learning to Cope

  Effective coping strategies can impact your pain. Coping strategies give you a sense of control over your pain, even when it is intense. Anxiety can intensify feelings of pain and disability, so it important to come to terms with your condition. Regaining control of your situation can help lower your stress. Learning to cope with your chronic pain can reduce your anxiety, putting you back in the driver’s seat.
  While coping strategies won’t necessarily take your pain away, they can help you get it to a level that you can deal with. At the very least, they help keep your pain from getting worse due to pain anxiety. Some potentially effective coping strategies include acceptance, mindfulness and value-based actions.
  
  

  Accepting Pain - Accepting Your Diagnosis

  You have a chronic pain condition. You may be in pain for a long time. It could last for the rest of your life. How could this not cause anxiety? The bigger question is, can you find a way to live with your chronic pain?
  Accepting pain is not easy. It may even feel like giving in. Learning to accept your chronic pain condition may take a long time, especially if you are still in the grieving stage. However, acceptance is the first step in letting your anxieties go. Here are a few ways to get started.
  
  
  • Keep a pain journal. The written word is powerful. Sometimes writing about how you feel, including your anxieties, gives you a greater sense of control over your pain condition. No matter what goes through your head, write it down and get it out of your system.
  • Talk about your pain. When you have chronic pain, one of the worst things you can do is pretend you aren’t in pain. Don’t worry about what other people will think: Be honest about your chronic pain. This includes not only being honest with others, but being honest with yourself.
  • Get your grief out. Grieving is a natural part of
  • being diagnosed with chronic pain. Do what you need to do to get it out. Cry. Get angry. Hit a pillow. Feel sad. Once you are done, however, you need to move on. Yes, you have chronic pain. Yes, it stinks. No, it isn’t fair. But getting stuck in the grief stage will not help your pain, and can cause even more anxiety.
  
  

  Being Mindful of Pain - What Helps and What Hurts?

  What times of day do you hurt the most? What activities cause you more pain? How do you feel when you eat certain foods, or sit in certain positions? Does your pain change when you feel sad or stressed?
  You can answer most of these questions by reading your pain journal. Now that you have it documented, start looking for patterns. Being mindful of what causes your pain, and what doesn’t, helps put you back in charge.
  
  

  Taking Value-Based Actions - Make an Action Plan

• Being aware of your pain triggers and relievers helps you make better, more informed decisions about your behaviors. These are called value-based actions: You determine what, when and how you do something based on how you think it will affect you.
  You know what worsens your pain. You know what makes it better. Use this as a guideline to structure your days, weeks and months. Planning efficiently helps you gain control of your pain condition. Of course, you will still have pain. But hopefully after all of this, your pain anxieties will be under better control.
  When you are coping with your pain, everything seems to run more smoothly. However, you may have setbacks along the way. Try not to get discouraged. Remember, it's not like you will be starting at square one: You may just need to remind yourself to get back on track. Repeat the steps as often as needed. rnal. The written word is powerful. Sometimes writing about how you feel, including your anxieties, gives you a greater sense of control over your pain condition. No matter what goes through your head, write it down and get it out of your system.
•  
• Talk about your pain. When you have chronic pain, one of the worst things you can do is pretend you aren’t in pain. Don’t worry about what other people will think: Be honest about your chronic pain. This includes not only being honest with others, but being honest with yourself.
•  
• Get your grief out. Grieving is a natural part of being diagnosed with chronic pain. Do what you need to do to get it out. Cry. Get angry. Hit a pillow. Feel sad. Once you are done, however, you need to move on. Yes, you have chronic pain. Yes, it stinks. No, it isn’t fair. But getting stuck in the grief stage will not help your pain, and can cause even more anxiety.

Being Mindful of Pain - What Helps and What Hurts?

What times of day do you hurt the most? What activities cause you more pain? How do you feel when you eat certain foods, or sit in certain positions? Does your pain change when you feel sad or stressed?
You can answer most of these questions by reading your pain journal. Now that you have it documented, start looking for patterns. Being mindful of what causes your pain, and what doesn’t, helps put you back in charge.

Taking Value-Based Actions - Make an Action Plan

Being aware of your pain triggers and relievers helps you make better, more informed decisions about your behaviors. These are called value-based actions: You determine what, when and how you do something based on how you think it will affect you.
You know what worsens your pain. You know what makes it better. Use this as a guideline to structure your days, weeks and months. Planning efficiently helps you gain control of your pain condition. Of course, you will still have pain. But hopefully after all of this, your pain anxieties will be under better control.
When you are coping with your pain, everything seems to run more smoothly. However, you may have setbacks along the way. Try not to get discouraged. Remember, it's not like you will be starting at square one: You may just need to remind yourself to get back on track. Repeat the steps as often as needed.


http://pain.about.com/od/painandmentalhealth/a/anxiety_pain.htm

Coping With Neuropathy Fatigue

LtCol Eugene B Richardson continues to work tirelessly for better awareness of neuropathy and practical methods to alleviate the symptoms. In today's post from neuropathysupportnetwork.org (see link below) he talks about what to do when neuropathy drains all your strength or when your muscles just refuse to play ball. Don't let the military tone put you off - there are many good things to think about here - try to find something that works for you. Meanwhile the Neuropathy Support Network has a great deal of other information if you need it.

Fatigue and Neuropathy

Posted January 3rd, 2012 by LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS

PATIENT TO PATIENT – Disclaimer: Patient to Patient articles are intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician.

Scott Berman, M.D. (Psychiatrist with CIDP) in his highly recommended book, Coping with Peripheral Neuropathy, How to Handle Stress, Disability, Anxiety, Fatigue, Depression, Pain, and Relationships, states on page 54 that “Fatigue is a fact of life for many neuropathy patients. Often our families and friends fail to appreciate this because ‘we look so good.’ In fact, in one study looking at fatigue in autoimmune neuropathy (“Fatigue in Immune-Mediated Polyneuropathies,” Neurology 53:8 November 1999, I.S.J. Merkies, et al), 80 percent of 113 patients had severe fatigue. The fatigue was independent of motor or sensory symptoms and was rated as one of the top three most disabling symptoms.”

Dr. Berman shares many practical ideas for adjusting to the realities of fatigue and insomnia in neuropathy. He serves as an officer on our Board of Directors and all proceeds from the sale of his book are donated to the Good Shepherd Rehabilitation Hospital in Allentown, PA. Scott’s book is noted in the RESOURCE tab of our website and can be ordered from there via www.amazon.com .

For decades now I have, like many of you, struggled with the fact of fatigue as one of the major components of my progressive polyneuropathy and found very little support or insight among too few medical professionals who often were more focused on what was NOT wrong rather than what IS wrong.

Poor medical attitudes toward neuropathy are still a major problem for patients in 2012! In the last two months I went on two major sites dedicated to helping patients and not one of them listed Peripheral Neuropathy as a major illness while more patients suffer from neuropathy than MS which is always listed! Why?

Recently a neuropathy patient struggling to understand the growing chronic fatigue shared his neurologists’ response and dismissive attitude as the doctor said, “take a nap” and then walked out. He asked, “Is this how far we have come in twenty years?”

So, what have I found works for me in dealing with the daily bouts of physical and mental fatigue?

FIRST, the importance of AFFIRMATION: No secret that I enjoy watching reruns of the Golden Girls TV show. Even my young grandson’s enjoy watching the humor which springs from the ordinary events of life Humor is one of the best foods for coping. Humor helps the body heal. This show brought great humor into my life with neuropathy. Then I discovered two special episodes on the recorded disc from season five. The two episodes are titled; “Sick and Tired” done in two parts, each one 30 minutes in length.

IDEA: Support group leaders and liaisons should consider using them to draw patients to support groups for discussion of the issues noted! ADVERTISE: Hear the Golden Girls on Fatigue, Failed Diagnosis and Humor at our Next Neuropathy Support Group Meeting!

You not only will enjoy the humor, but you will identify with Bea as she struggles to get a diagnosis for her chronic fatigue symptoms and an affirmation for her illness. You will identify with her mental pain when dismissed by one neurologist. You will celebrate the joy because of the healing provided by her supportive family doctor. Especially important is the scene at the end of part 2, when Bea finds a very ‘professional way’ to get her point across to the neurologist. Neuropathy patients will not feel so alone and may discover a way to laugh while watching a role model of how to respond to the dismissing doctor! If you are a neuropathy patient, you will identify and understand the emotional dynamics and you may find some healing humor to boot!

SECOND, don’t fight fatigue or apologize for it, as you are guilty of nothing. Fatigue is a real part of your neuropathy and you and your family deserve support while finding ways to live with it by adjusting your activities or discovering ways to decrease it.

THIRD, take rest periods during the day. I have found that it is not so important to go completely asleep as it is to just let your damaged sensory and/or motor nerves rest and not struggle even if for only 30 minutes.

FOURTH, I have just learned something that Dr. Latov suggests for reducing the symptoms of autonomic neuropathy and the digestive symptoms that often accompany, for example,the alternating symptoms of constipation and diarehea. REDUCE CARBS in your diet. I have discovered if I eat a breads, pancakes, waffles, and pasta, my exhaustion is WORSE especially after eating. Makes sense as blood goes to stomach to help digestion. But by reducing carbs and focusing on fruits and salads I reduce these symptoms of autonomic neuropathy, along with the fatique, especially after meals and it helped me feel a bit stronger all day!

FIFTH, if your breathing is a factor in sleeping, for whatever reason, have a sleep study done. I need to use a BIPAP machine. The neurologist explained to me that my neuropathy was affecting the nerves that help the muscles around my chest support breathing and for years I woke up with severe headaches due to lack of oxygen when I intermittently stopped breathing at night.

SIXTH, Dr. Berman’s book speaks about the factor of insomnia and I highly recommend his book and read what he shares. Between living with strong medications and pain at night, it is not surprising that neuropathy patients may be sleep deprived just when they need sleep the most. There are topical creams for any burning pain at night and solutions for the leg cramps that neuropathy patients often experience.

SEVENTH, you must continue to advocate for a DIAGNOSIS and FINDING THE CAUSE for your neuropathy. Do NOT permit a diagnosis of “idiopathic neuropathy”. Armed with your history and the testing that is available, the doctor can provide a diagnosis on the type and effects of the neuropathy, which often point in the direction of the cause. Having carried the unhelpful diagnosis of idiopathic neuropathy for decades, while my peripheral nerves where being damaged and eventually destroyed, this diagnosis only means that one needs to look further!

http://neuropathysupportnetwork.org/blog/2012/01/fatigue-and-neuropathy/