Speaking fundamentally: Chronic pain

Some fundamentals we use to manage our chronic pain

When in pain distract the brain

This is like a fundamental rule of pain. When we ruminate on the pain? It is like we become saturated with it. Like it consumes our brain. Because pain is inherently a distraction. It already takes our attention naturally. And it makes certain things more difficult to do as a result. More pain, less concentration, focus, and memory. At a certain level, we can do other things and distract some of that attention from the pain. But when the level exceeds a certain point, which is different for everyone, we can no longer do so.

We all have things we do to distract the brain. I love to read or write. Other play video games, knit, color or garden. Not to mention work, which comes with its own set of complications, is also a fine distraction as well… there are perks to work with chronic pain certainly when one has the capacity to do it.

Moderation

Chronic Pain Lifestyle (1)

Moderation is something where we learn this pain, fatigue and life balance. It is about pacing and limits really. It is also about still managing to do things we want to do in our lives. For example, I have a family event coming up this Sunday and I want to go to it, so I will. I will pace myself and I will plan for a migraine that may happen and the pain that also may become worse while I am out and about. My pacing. I will make sure not to exceed my limits. Then I also scheduled the next day off from work because due to the extra fatigue and expending of energy I always account for one recovery day. Again, another pacing technique. This is also used on vacations. Account for a recovery day when you arrive and account for recovery when you return.

The way I see it is just Moderation in all things. I do events and activities but I may not be there for as long. I may not be as socially active as other people. I take the time to recover, de-stress. I actively do things to de-stress like meditation. Society is the Hare and I am the Tortoise. I will, and do, turn down things I know will exceed my limits in pain or fatigue or there is no recovery time. And I am fine with that. Pacing is very important to chronic illness management. And I feel so much better when I pace.

The No, or Hell No

We have to learn to say No, or Hell No. Certain times of the year this becomes vital. Like Christmas and you are asked to host dinner and are invited to 5 parties. And you feel obliged to go to them all. Or people ask you for a favor. Or you have two social events near each other and you know if you go to both you’ll be wiped right out.

We have to learn to say no. Pick the one we will go to and stick to that. Whichever works best for us really. Which one is closer, will be less fatiguing and not as long in duration.

I used to be so bad at saying no but much better at it now that I realize I need a lifestyle of moderation. To keep to it I have to manage my pacing. Simple as that. I feel so much worse when I do not.

Napping is your friend

weary rest

They say if you nap make sure it is in the early afternoon so it doesn’t disrupt sleep. But for fatigue management, they suggest having a short nap before you go out and do something and a short nap when you return to recover. Just short little naps to help with fatigue management. It helps a great deal.

When ‘can’t’ can’ts us right out of life

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I know isolation. I know hermiting. I know not doing anything because I was in pain and doing things would aggravate it. I know how this leads to can’t-ing ourselves right out of things we want to do… but don’t have the energy or feel it will trigger pain so we decide just not to do it. I’ve been there. And in the end, you just don’t do anything as a result.

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I do it. I think many of us do it. Here is the warning. I hermited for a few years. More than a few when my pain wasn’t being managed. And it isn’t good for a person, even an introvert. We need to get out and about once in a while and socialize.

So sometimes we have to get out of that comfort zone a little and find ways to engage more in the world.

Things I do:

  • Go for walks (get me out of the house)
  • Coffee with my mom
  • Coffee with a an old co-worker
  • Game night with friends
  • Karaoke night (I am there for support… no one needs to hear me sing. lol)
  • Did a paint night one night. Going to try that again. It was a blast.
  • Getting together for dinner, or shopping with my mom
  • Family events
  • Fires pits gatherings at our house with friends and/or our neighbors.

This weekend I plan on going to a fire and BBQ with friends in the city. And next weekend to my uncle’s 50th-anniversary party event.

So in the beginning, I was doing nothing. What helped was a little pain management. Then some acceptance on top. This awareness I’ll be at pain at home as well. Pain either way. As long as I go prepared I can enjoy myself. And by enjoying myself I get rid of that sense of isolation and I boost my mood. I don’t need a lot of social contact being an introvert. Just a little and quality not quantity for me.

I get:

  • Decrease in isolation
  • Boost to mood
  • A great time and laughs
  • Visiting people I enjoy being around.
  • Doing things I enjoy
  • De-stressing
  • Taking my mind off things.

I started really slow. I was just initially going for coffee with mom every couple of weeks or so. Just to get out of the house, which was driving me stir crazy.  And slowly added into it from there. And going for walks, also to get me out of the house and my initial exercise program.

It depends on your pain, fatigue and comfort zone. It likewise depends on the activities. If someone invites me to a concert I’d Love to go, but I can’t. Migraines can’t handle the noise and lights. Just not something I can do. But a game night? Yes, I can do that. Or movie marathon. Or a small pub karaoke session, I can handle that. Going out for coffee or inviting someone to my place. Inviting a few people over for a fire at my place is also something mellow I enjoy. Going to a loud, packed bar or club? Nope. Tried that one night with a live band. Migraine in 2.5 seconds and it was a bad one, so off I went. So it depends on the activities to engage in. When to say no. What to suggest.

Also… means meeting new people. When you hermit for years? Not many people stick around, I’ll tell you that. We had to meet new people to hang out with. Two introverted people meeting new people? Hard stuff, man. But we did. Slowly but surely.

It was worth it to me. It was valuable to do. It made me feel connected and engaged with the world again.

Guest post: How to Change Your Life to Reduce Your Chronic Pain

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Image via Pixabay by ronymichaud

While doctors can meet with patients who suffer from chronic pain and recommend treatments and medication, the patients themselves have the power to minimize their chronic pain if they make a few lifestyle changes. Sometimes, even small shifts in home life can have significant impacts on the amount of pain you experience. We share some of the most effective ways you can change your life to reduce your chronic pain here.

Use the Power of Water

There are three changes you can make with water to reduce your chronic pain: drink more of it, spend more time soaking it in, and listen to it. If you drink enough water to achieve healthy levels of hydration, you will relieve your headaches, joint pain, and stiffness. Other drinks like soda, coffee, tea, and alcohol promote fluid loss, just as a diet rich in protein and fat does. If you are taking joint supplements like glycosaminoglycans, you need to be drinking water to optimize their effectiveness.

As for spending more time in water, soaking in warm water relieves muscle pain and muscle spasms and alleviates arthritis pain. You may soak in a bathtub, whirlpool tub, warm water pool, or hot tub as part of your water therapy. The trick is to make the water warm but not too hot because you don’t want to put your nervous system into overdrive and make it more difficult for you to get to sleep after an evening soak. Some people with chronic pain add essential oils to the water to improve its relaxation and pain relieving benefits. Still others extend the benefits of the water therapy by stretching and exercising immediately after the soak when their muscles are warm.

There is a reason that people enjoy listening to the sounds of falling rain, babbling brooks, and crashing oceans. Studies show that being near water improves people’s well-being and boost their mental health because the sounds of waves and moving water change brain wave patterns and promote relaxation. When you are relaxed, your stress levels decrease and your pain minimizes. Even if you don’t live by the ocean or a stream, you can get the benefits of listening to water by placing a small fountain in your home.

Make Your Home (Or at Least Part of It) Your Sanctuary

While you might like to think that your home is your sanctuary, there are steps you can make to ensure that it really is. Simple changes to your home may help reduce your stress and increase your overall happiness. It’s crucial that your home promotes relaxation if you are going to reduce your chronic pain levels. Fill your home with your favorite colors, open shades and window coverings to allow more natural light to flow in, minimize clutter, and fill your spaces with comfortable furniture, art, and houseplants. Natural décor and soothing colors make your home more relaxing, too.

One of the best ways to make your home a place of relaxation is to dedicate one room to yourself. This room should be free of electronic devices and distractions. It should be bright and cheerful and a personal space full of your favorite items. This space also should invite creativity in the form of drawing, painting, coloring, playing music, knitting, or whatever creative hobby you enjoy and pursue for relaxation and pain relief.

Consider using an essential oil diffuser in the room to promote relaxation. If water therapy works for you, place your fountain in this room. If you love to read, fill your room with comfortable chairs and books. Place a yoga mat in this room to give you space to meditate, stretch, and reduce your pain. This is the room that should make it possible for you to focus on being yourself, relaxing, and minimizing your pain.

Chronic pain sufferers find that making a few lifestyle changes and improving their home life minimizes their pain and makes it more manageable. If you consider the power of water and make at least part of your home your sanctuary, you will be well on your way to less pain.

 

By

Ms. Waters is a mother of four boys, and lives on a farm in Oregon. She is passionate about providing a healthy and happy home for her family, and aims to provide advice for others on how to do the same with her site Hyper-Tidy.com.

Living in a backwards world

I feel upside down in a right side up world.

One thing I have learned living with a chronic illness is that it is perceived as a weakness. Often as something you should be able to ‘control’. Often as something you should try to ‘cure’. Often as something you should have been able to ‘prevent’ and it is somehow your fault that you are ill to begin with.

Yet chronic illnesses are rather common, so this seems sort of out of place thinking.

And we, it seems have little place in society. People are put out of place having to accommodate for us. I have been refused accommodation because I do not have a ‘physical’ disability. I assume that meant not a visible one or a common one. I have likewise not had accommodation because the office itself was simply not designed for it… so it wouldn’t work. Wasn’t in the planning for people to think about those that might need ergonomically correct environments. Since I wasn’t even sure it would do anything since I had, again, never been offered the assessment process, to begin with, I just made do. Really it isn’t that I would like. It is Not having fluorescent lights. Which are a nightmare. There are studies to say they are bad for everyone. Including students. But the world… doesn’t care about wellbeing. Not for the chronically ill and not for everyone else.

It is a backwards world really. Where you are expected to take care of your own wellbeing but it isn’t really encouraged by society in the least bit. And something has to be Really proven to be Bad before anyone does anything about it. If then.

And we could have shorter work weeks. More holidays. But we don’t. Because life satisfaction isn’t something we value. It is about corporations and greed and making money and your career. And stress and managing stress. And pushing through it. And being grateful for it.

So people are fine with these lifestyle issues and life satisfactions issues. And so we will never be the happiest people in the world. Or the healthiest. But then you get ill.  And you still have to fit into this world, like you are healthy. Same work, same stress, same game but with fatigue, pain, and illness. But remember… you should have prevented it, you should control it and you should aim to cure yourself. And you shouldn’t complain about it either.

But that isn’t our world at all. We have a completely different world. Like we live in an alternate reality that people have absolutely no comprehension of. It is no wonder they call chronic illnesses invisible disabilities. It is that invisible. We do think about wellbeing and quality of life a lot. We think about all the things we can do to improve our wellbeing and quality of life to sustain the life we want to live, or maintain or have balance. And it is a struggle for many of us to fit that into the actual world. How do you incorporate all the ways you cope with illness into work life for example? How to you incorporate all the ways you cope and manage a family and household? Or socializing? Or having a holiday even? How do we manage the added stress of chronic illness?

Because this society isn’t designed to help us one bit. I think about this opiate crisis even and the one’s who are suffering from it are the people with chronic pain. Absolutely no one seems to care about their voice, suffering or the complex problem of chronic pain. But they are in a fundamental panic about the smaller fraction of people who get addicted… a problem and one that has to be looked into considering the serious harm with Fentanyl. But what about the massive amount of people now with unmanaged pain? Society is completely silent about that issue. That is invisible.

So we are expected to fit into society and society won’t fit into us. We have a society that has little desire to even think about wellbeing that much. As a Canadian, I know my country does better that Americans at this simply due to health care alone but some other factors as well. But I can name countries that do far better than we do. And I wonder about the quality of life. Of the quality, we think the average life should be. What we value in that life. And maybe everyone should think a lot more about the quality they want in their lives and in their society as a whole. Maybe if they thought a little more like the chronically ill have to then the chronically ill wouldn’t have such a hard time fitting into society so much. Maybe there would be places for us. Maybe all our lives would be enriched. I think of companies like the average one. Do nothing. Then companies like some tech companies that bend over backwards for the wellbeing of their employees. With nap rooms. Standing desks if they want them. Exercise rooms. Places to meditate. Daycare for free. Everyone gets good holidays. And you know why? Because it makes people happier and happier people are more productive. Imagine all companies doing that. Imagine that as the norm.

Just imagine a parallel universe where society cared about wellbeing. Where there was strict product control on what you could put in things. Drug studies had to be done with a third uninterested party evaluating them to ensure they didn’t fudge the numbers. Where work hours were 30 a week. With 4 weeks holidays. No matter who you were. Where every office had an accessible gym, nap room, place to meditate, day care. Standing desk or bike desks for those who wanted them. Government programs teaching mindful meditation, tai chi and basic yoga ages 12 and up. Where supplements are highly regulated and studied for uses. A society that encourages walking and biking to get around. (Aside from winter).

Sometimes I think I'm diagonally parked

Fibromyalgia Awareness Day: things I learned

the world is your oyster (3)

Today is Fibromyalgia Awareness day which is important to me because I have, officially, had FM from twenty years now. It is a condition that involves malfunctioning pain processing and as such is a chronic pain condition. It also has issues with insomnia, cognitive dysfunction, and fatigue.

Here are some things I know about FM from just my experience with it personally.

1) There was and still is a lot of stigma surrounding it. A lot of ‘it is in your head’ business. Doctors themselves didn’t believe it at one time and I mean not too long ago. I encountered this medical stigma when I was younger myself. Went to the ER with chest pains (Costochondritis, not only seen in FM by the way but a painful chest wall condition) and was turned away with no tests at all because he didn’t ‘believe in FM’ and, therefore, me. There is mounting research to show in fact it is a valid syndrome and there is actually a blood test on the market to identify it (only in the US as far as I have determined). Still, not cause found or cure but there is headway in what is going on.

2) It is variable. My experience with FM is unlikely to be the same as someone else. I have moderate pain and a great deal of fatigue as well as comorbid IBS and depression. There is a subset of people with FM who tend to have depression and quite a few who do not. The pain and fatigue varies from to individual to individual. Some are disabled from one or the other or both. It also varies with us personally. We have good days and we have days where the symptoms Flare up significantly.

3) Like most chronic illnesses, what works for one person doesn’t necessarily work for another. There are three medications specified for FM: Cymbalta, Savella and Lyrica. For me, Cymbalta made me rather suicidal but Lyrica moderately worked for a few years. Now I generally do exercise, meditation and use a slow release tramadol to manage it. Exercise is listed as one of the most important treatments, but I must say it isn’t an easy one. It is very difficult to manage for me and without my Oska Pulse I wouldn’t get very far with it and, in fact, that is helping me manage the pain much better. We do what we can for pain management. Fatigue management I find is a Lot more difficult. Not quite so much we can even do. I take B vitamins and Rhodiola for fatigue. I also take a supplement just for FM called FibroCane. I also make sure I pace myself in my activities and stay within my limits. We all have our ways of coping. And they are all different. No way is better than another way. If it works, then go for it. And that is one thing I have learned along the way. Try things and take what works and discard the rest. Until you have some sort of viable system. But keep trying.

4) Relationships can suffer. I am lucky in family, friends and my spouse. I met my spouse around the year I was diagnosed in fact. And I certainly didn’t Improve health wise but we have been together since. Lucky. But some friendships I lost back then. People expected me, at that age, to be able to do all the things they could at the same pace. And it was impossible for me. So some drifted away as a result. Some pressured me to ‘get out’ when I couldn’t. I think being chronically ill and young comes with its own problems really. With my spouse, though there was a time when I was in a rough spot and so I hermited (the act of self-isolating because pain is too high). And so did he. He didn’t get out of the house. He didn’t socialize. Pain has a radius I find. It affects those around us. And mine was affecting him. So when I began to consciously make an effort to get out and socialize my primary motivation was him. And the fact isolation is harmful to us and for me considering the extra layer of depression. So there is an impact on relationships of all sorts and sometimes we don’t even notice it right away. Sometimes it is frustrating because we don’t know what to do about it. Our illness is a constant stressor on relationships and that can cause a lot of issues to creep up.

5) Find the right doctor is crucial. I have had some horrible doctors in my day and some awesome ones. And the worst was a doctor who was completely indifferent to my wellbeing. He would give me refills. But if I mentioned something it was ‘the FM’ or not a big deal. And if I said I wasn’t coping with the pain well, he was indifferent. That was the worst. The best doctor I had and have currently checks into issues to ensure there is nothing going on other than the FM, like comorbid issues that seem to definitely crop up and I have. And she sent me to the pain clinic to manage my pain. Without her, I wouldn’t have the pain management and mental health management I have today. It is crucial to find a doctor who is willing to manage a person with a chronic illness. Or willing to send you to the places that can assist with pain management.

6) Pacing and limits. One of the very first lessons I learned, the hard way, was that we need to pace. It is the most fundamental lesson of FM. The way my psychologist put it is that if we do not pace we exceed out limits and crash. Then we have to recover. Then we feel better so we again exceed our limits. And crash. And repeat. Always getting high pain crashes and recovery cycles. If we pace, whether we feel good or not, we can maintain consistency and avoid more flares of pain. The ones we can avoid anyway.

7) It isn’t just about the pain. I know it is about the pain. But it isn’t just about the pain. Fatigue can be a real burden with this syndrome. The sleep dysfunction has plagued me so long I have no idea what it is even like to have a solid nights sleep. I cannot even comprehend it. But it is something I manage somewhat with medication. Then the cognitive dysfunction (fibrofog) comes with its own set of unique problems that are difficult to get around day to day. Layer in the comorbids and we have a complex puzzle we have to deal with. It seems like if it isn’t one thing, it is that other thing. So it is the pain, but it is certainly more than that.

And like I always say coping isn’t a linear event that begins with diagnosis and ends with total and complete acceptance. It doesn’t work like that. We cope day to day. We deal with the emotional toll of illness day to day. Life itself can add a factor to illness that makes it harder to cope with at times. Life stressors such as work or other events that can strain our coping strategies. We don’t always cope well. Other times we cope very well. And that is nothing to be ashamed of. We have to take it one day at a time. Pay attention to our self-care on the bad days and persevere.

In The Land of Fibrofog it Isn’t Very Brainy Out

Our relationships and fibromyalgia

#CognitiveDysfunction and #fibromyalgia

#Fibromyalgia and #Sleep

Tips for when you are in The Flare

 

Fibromyalgia Awareness Day

Fibromyalgia awareness daymay 12thmake the invisible visible

Things to do on Fibromyalgia Awareness Day May12th

  • Share Awareness images
  • Wear purple and share on social media

 

Links to check out:

  1. World Fibromyalgia Awareness Day Is May 12: Spread the Word
  2. May12th.org
  3. May12 Awareness on Facebook
  4. For Bloggers there is the May 12the blog bomb that has been going on since 2014. Blog Bomb #May12BlogBomb

 

Resources:

 

 

Tangled: Depression and pain

The worst lesson my pain ever taught me was_ to push through the pain

One thing I can tell you about coping is that I like to learn things the hard way. I think we all struggle from time to time due to certain circumstances in our lives. For certain I can say chronic pain management matters. There was a time several years ago when I had no chronic pain management and I suffered. This is a long post but it is Mental Health Awareness week in Canada and it is important to know the struggle with mental illness and pain is complex and we do have the capacity to cope with both.

What to do? Well, my answer initially when the pain got beyond my coping strategies was push through the pain hoping there was something in the near future (always a year away it seemed and when it came? Never something that was in any way beneficial to me).  So push through the pain again. And longer. It began to affect my mood. Then some of the medications they put me on made that mood worse. Finally, depression. Pain management is fundamental. I get there isn’t a big focus on that these days and that is extremely worrisome because it is vital.

And what to do? Apparently, in my mind, depression was normal for pain. Who wouldn’t be, right? I mean, Pain. Not sunshine and rainbows is it? So I would push through All of it. Just survive that day and that day and that day. And sacrifice every aspect of my life in order to accomplish what is necessary. It doesn’t work. It makes quality of life plummet. It makes everything suffer and you suffer. This is no way to live.

The problem is that the pain and the depression are then tangled. You can’t treat one without treating the other. If one isn’t managed the other suffers for it. The depression certainly was worse with pain for me and with the pain not managed it caused a lot of issues with the depression, even when I did start to get help therapy wise for the depression. I was diagnosed with Major Depressive Disorder at the time but not put on any medication for it, which is likely a good thing considering I shouldn’t be on antidepressants as they make my mood substantially worse. But without pain management, I had a hard time making any progress.

Chronic pain management, on the other hand, is something that is a very slow process even once you Do get the right medical team. It improves by increments. So initially they may put you on a painkiller which helps a little. Then start you on physiotherapy and exercise and that is an arduous task in itself and one you won’t see improvements right away. Then, for me, they recommended mindful meditation and you have to get into the habit of that, but see some benefits to stress reduction pretty quickly. They may have other pain treatments like shots of some sort… Botox for migraines in my case. All of this takes time and they try one thing and progress to another or combine. They will review medication and maybe take you off some. I was taken off Lyrica due to its fatigue effects which inhibit one’s capacity to exercise. This can take years to see benefits or months. Some people get this sort of treatment of the get-go. Only took me roughly 20 years.

Add that to a psychologist who also knows a thing or two about chronic pain and you begin to adapt your coping strategies. Not to mention, in my case, depression medication. For me Abilify, due to my sensitivity to antidepressants. Nothing to be ashamed about, taking medication. I certainly noticed a substantial difference, in my case, and evening out the moods enables one to cope with the emotional stress of coping with pain a lot easier. Because there will always be emotional strain dealing with pain.

Also in my case recently I have had a lot of benefits from the Oska Pulse (you can actually get the Oska Pulse at 5% discount) which has really bumped up my chronic pain management to a new level. Also enabling me to do the exercise therapy quite a bit better than I was able to before, which is awesome. Today I broke my exercise record, in fact. A goal I had for some time and now it is achieved. Need a new goal now.

So I really don’t think I would have managed the depression well without a) medication and b) proper pain management. And I would have struggled with even the routine of some of the chronic pain management things like exercise or anything without some sort of depression treatment. They co-exist in a puzzle that seems needs to be untangled together.

In the end, it is about quality of life and what you can do to live better with the pain that you have knowing that the pain itself isn’t going anywhere. But we can manage that pain and we can decrease the suffering from that pain. The recipe for both though is different for us all because both conditions are complex on their own, let alone combined.

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I have an interesting study that states the ability to withstand more pain is an adaptive process. We all know that it is. We know it does it with pain because we endure a vast amount of it and we cope with it as time passes. Not even sure how long it takes before our tolerance begins to grow but it is a natural process. This suggests a physical adaptive process.  Although, since it is a small study they would need to dig deeper.

The small study was published in Pain.

When the researchers used heat on the men and women’s skin to induce pain, they found that the more opioid receptors they had, the greater their ability to handle pain. These receptors were higher among the people with arthritis, which the researchers say suggests that this increase is an adaptive response, possibly to make it easier to deal with the chronic pain that comes with such a condition.

The researchers did not prove that arthritis pain increases the numbers of these receptors, but lead study author Christopher Brown, a senior research associate at the University of Cambridge, said in a statement that “although the mechanisms of these adaptive changes are unknown, if we can understand how we can enhance them, we may find ways of naturally increasing resilience to pain without the side effects associated with many pain-killing drugs.” Time health