I would love to just redirect you to the new site...

But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or someone will answer my feedback issue.

So come on over to the new site! Brainless Blogger 2.0 located specifically at https://brainlessblogger.net/





Moving to new site

We are moving! 

 

We are moving to https://brainlessblogger.net

 

I will leave this up for a few days and then set up the redirect. I'll give you guys some time to update your links. 

 Check out the new site!

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.
Chronic Pain Lifestyle (1)

Moderation

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.
weary rest

Napping is your friend

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

www.facebook.com_BrainlessBlogger

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.

the sparks between us will (2).png
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

drops-of-water-578897_1920
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 d├ęcor 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.

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.

Adapting to pain? I would hope so!

Chronic pain.png
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

Mental Illness Awareness Week #GetLoud

_1 in 4 people, like me, have a Mental Health problem. Many more have a problem with that._.jpg

1 in 5 Americans and Canadians will experience mental illness.  How there is such a pervasive stigma out there regarding all mental illness with that stat, I do not know or comprehend.
Here are some more facts taken from National Alliance on mental illness NAMI
  • Approximately 1 in 25 adults in the U.S. experience a serious mental illness in a given year that substantially interferes with or limits one or more major life activities.
  • 1.1% of adults in the U.S. live with schizophrenia.
  • 2.6% of adults in the U.S. live with bipolar disorder.
  • 6.9% of adults in the U.S.—16 million—had at least one major depressive episode in the past year.6
  • 18.1% of adults in the U.S. experienced an anxiety disorder such as posttraumatic stress disorder, obsessive-compulsive disorder and specific phobias.

Here is what they list for the consequences of lack of treatment:


  • Serious mental illness costs America $193.2 billion in lost earnings per year.15
  • Mood disorders, including major depression, dysthymic disorder and bipolar disorder, are the third most common cause of hospitalization in the U.S. for both youth and adults aged 18–44.16
  • Individuals living with serious mental illness face an increased risk of having chronic medical conditions.17 Adults in the U.S. living with serious mental illness die on average 25 years earlier than others, largely due to treatable medical conditions.18
  • Over one-third (37%) of students with a mental health condition age 14­–21 and older who are served by special education drop out—the highest dropout rate of any disability group.19
  • Suicide is the 10th leading cause of death in the U.S.,20 the 3rd leading cause of death for people aged 10–2421 and the 2nd leading cause of death for people aged 15–24.22
  • More than 90% of children who die by suicide have a mental health condition.23
  • Each day an estimated 18-22 veterans die by suicide.24
- See more at: https://www.nami.org/Learn-More/Mental-Health-By-the-Numbers#sthash.UcP9RvIB.dpuf
Something to consider. I know when you have mental illness society tells you, you are weak. And that you should feel shame. Well, #GetLoud. There should be no shame in mental illness. It is a disease like any other that needs to be treated and managed.

My brother had schizophrenia. He has passed so he isn't with us anymore. But I remember times when we were talking and he would be talking about his delusions and I would be listening. And people around us would give him looks and back away. Or avoid looking at him. Subtly try to point him out to friends. He made people nervous and even afraid. Without understanding, if he was on no medications He was afraid and nothing to be afraid of. On medication he still was somewhat delusion, still had his views of the world and that is enough to seriously disturb people. I think it disturbs people there is a condition that could make reality something different to you than what is perceived so they shun those that are like that. I like to think he didn't notice. But I noticed.

We know what people are like.

We know what people think of mental illness.  And therefore many people hesitate to see their doctor because of the stigma and shame of it... believing they should have to handle it themselves. People shouldn't wait. Waiting can be a mistake.

Review: Oska Pulse

"I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "





What is the Oska Pulse?

Well, it is an external stimulation device designed to relieve pain, muscle stiffness and inflammation through pulsed electromagnetic field technology (PEMF). It promotes recovery for all types of pain and is drug-free.


Where to purchase? Price?
You can purchase Oska Pulse at OskaWellness.com. The cost is $399.
Return policy?
There is a 90-day money-back guarantee.
2017-04-29 23.31.15
The desk of a hectic blogger and my Oska Pulse at work on those hypermobile knees
I'm using it for fibromyalgia but I do have migraines as well, and there is research for that too. I have been using it 6-7 times a day to get some maximal effect due to the fact the pain is widespread. I use it ankles, knees, shoulders and head.

You don't actually feel anything when you are using it. But when I fell down the stairs and used it for my poor abused tailbone, at that time, I felt a warming sensation, which is entirely normal for some cases due to the increased blood flow.

It isn't like a TENS unit which is basically just contracting the muscles. Reminds me more of other external devices of similar function but different types like the Cefaly which is a cranial analgesic electrotherapeutic device. But Oksa Pulse is a PEMF specifically device and used for all pain not just migraines.
Oska Facebook

Results

So I felt nothing right away and I was using it emphatically. Since you cannot tell if something will help if you do not use it and I am greatly intrigued with things like transcranial stimulation... but clearly this is portable and uses a slightly different process. Nevertheless, there is a boatload of research out there on it. So intrigued.

So then a few weeks in I actually injured from a tumble down the stairs. (I had a vertigo bout and my body flung itself down the stairs. I was not amused). During that time it was impossible for me to exercise on my stationary bike as it was damn hard to just sit comfortably. I kept on using it and used it on that injury in fact. Maybe it helped me recover faster. But what I do know was the very surprising result when it came time to exercise again.

First, exercise is a painful venture for me. It is always a painful venture due to the fibromyalgia, exercise intolerance, and the hypermobility syndrome combo. My knees... they hurt like hell. So pretty much immediately the pain hits and gets exponentially worse the more I progress. I have never, ever had it not be extremely painful to do. Just doing it all the time I slowly gain minutes on my time. Took me about 6 months to work up to an excruciating level of 20 minutes? I never look forward to it. And I don't believe in endorphins because I sure don't get them. And I have no idea how more pain is supposed to help me with my chronic pain. That is what I think about exercise. Until that Oska pulse kicked in.

I went down to exercise. And that immediate intense pain didn't kick in. At all. Just like a moderate sort of ache. Not even moderate, like a mild ache. And it was the most amazing thing I have ever experienced in my entire life. Because even after two weeks of inactivity, which Would have meant I would have been able to do 5 minutes, I was able to do 20 minutes before the fatigue got to me. And at that point I knew... this is doing something.
I have noticed it in other small ways. Walking distances. Capacity to color longer (stress reduction hobby). I get nerve pain in my hands, and coloring I love to do but cannot do for long... but I can longer now. I can do housecleaning longer. Fatigue is always an issue, but pain isn't as limiting with it. I have also noticed my excessive migraine persistent nausea has diminished since using it and I have no idea if that is to due with its use... but the nausea has been pervasive for two years and now the intensity is about 70% reduced.

Now with migraines, which I get daily, it is harder to tell. I recently have started BOTOX so it is hard to say which is doing which. But I have noticed some really low-intensity days lately. A few migraine free days, period. I feel that with migraines it is slower to respond because this pain is ingrained in me for two decades. But I feel it is doing something. I am on the first round of BOTOX which shouldn't have an effect yet... I was a complete non-responded the first go around on the first round. It should take me 2 to 3 rounds to make any difference. Yet I feel a difference and I believe that difference is the Oska Pulse. I know it is doing something migraine-wise. The reason I know this is that when I started using it on my head it flared up my auras every time and was pretty obvious. But then it seemed to adjust to it and got used to it and that effect stopped. So clearly it was working in that area of my brain pretty good. I am optimistic if I use it more in the head area regularly I will see a better response in this regard and excited to do so. As you might have heard these external stimulation devices are not new to migraines... there are some types on the market and a new one coming out. Not sure if any of them are PEMF tech, but the reason they are coming out is because external stimulation does work, doesn't require surgery and is safe. It is a great thing to add to your regiment.

So I will continue to use it for the migraines with the BOTOX and see if I can get some pain management that is better than what I currently have. That is all a gal can ask for.
With the FM I will continue as I am and continue with the results that I am getting. Enabling me to do my exercise routine is a big deal to me. Without the massive amount of pain as well.
This wee device works. It is sneaky and takes a bit of time but then BAM you notice some sort of difference that wasn't there before. I am so glad I have reviewed it. It is my favorite buddy now. I actually am using it on my knee right now as I type. It is certainly worth it for FM and quite possibly based on what I am feeling so far, for migraines as well. Oska Pulse sells itself to every person who tries it for about three months of continual use. Doctors should hand these out to people with chronic pain. I know these sorts of devices actually are becoming more popular in chronic pain management (as in one neurologist clinic I went to had a few gamacore devices they gave to people to use for chronic migraines) so it is very possible we will see more universal devices like the Oska Pulse in pain clinics for chronic pain management. Quite frankly I believe firmly in utilizing all thing we can for pain management in conjunction with medication so I would like to see pain clinics explore options that benefit the patients.

Benefits:

  • non-drug treatment
  • external device, so no surgery to implant it.
  • portable and I can bring it with me anywhere anytime
  • It has a band so I can attach it do my shoulder or back or knees as the need may be
  • Chargeable
  • Runs on 30-minute cycles and turns off by itself.

Some research

A study done in 2007 on FM and chronic pain with FM yielded some interesting results specifically in the area of fibromyalgia. (A randomized, double-blind, placebo-controlled clinical trial using a low-frequency magnetic field in the treatment of musculoskeletal chronic pain. Pain Res Manage 2007;12(4):249-258.) "A differential effect of PEMF over sham treatment was noticed in patients with FM, which approached statistical significance (P=0.06) despite low numbers (n=17); this effect was not evident in those without FM" The study was for 4 weeks and compared to a sham group who received a device that did nothing.
The net reduction in pain on the VAS was equivalent to allow to moderate dose of opioid analgesic in PEMF-exposed patients (63-67). It has often been pointed out that both the endogenous and exogenous opioid systems are influenced by PEMF exposure sessions in animals and humans (68-70). Moreover, when an opiate such as morphine is used in combination with PEMF, the side effects of the opiate may be reduced(42). Consequently, we believe not only that PEMF should beinvestigated further as a replacement for opioid analgesics insome patients with chronic pain, in particular those with FM, but that PEMF may also warrant investigation as a supplement to opioids, especially in patients with more severe pain.
Of course, with the Oska Pulse we have a device we can use at any time and we are not limited to a study where they were testing for a short duration. Continual use naturally affects results. What is important about this study is that they thought the results helped with FM due to it being used on the head rather than the body... due to the nature of FM pain. If it were OA, for example, you would use it on the location of the arthritis for the benefit, but with FM the location is the brain.
 
It should be noted I have been using it on the head and body, because I have FM and hypermobility syndrome... so pain seems to be caused by a lot of factors and I can't necessarily gauge which is which.
 
And for the area of migraines there have also been studies as well: "Treatment of migraine with pulsing electromagnetic fields" involved 42 subjects had treatment 1 hour a day for 2 weeks. 73% reported decreased headaches (45% a good decreased and 15% and excellent decrease). 10 went on for an additional 2 weeks of treatment. All showing a decrease in headaches (50% good, 38% excellent).

There is actually a lot of PEMF research and I am just plucking two in the areas I am using it for. But it ranges from uses in arthritis to depression. And is being explored in wound healing.

The perks of working

Have too much ambition_ On the fast track and don't know how to get off_Try migraines..jpg
I have always been an ambitious person with specific career goals. And it is hard to reconcile that chronic pain doesn't really allow for ambition. Really ticks me off, to be honest. But we can work and a lot of us do work. And there are certainly benefits to doing so.
  • People- yes, social interaction with actual people. Major perk for chronic illnesses because we are prone to isolation.
  • Pain distraction- As long as you are not exceeding your pain limits, work is actually a fine pain distraction. Rather than ruminating on it, you are focused on other things.
  • Keeps you engaged- keeps you mentally engaged. I don't know about you, but when I am off work I have to work hard at keeping myself mentally engaged. I do a lot of freelance writing on the side to keep my brain from stagnating into a puddle of goo.
  • Money honey- Yeah, no one wants financial instability that comes with disability. And people with chronic illnesses and chronic pain tend to suffer financial due to disability and compromises in jobs. It is a fact of our lives. So money, doesn't hurt.

So working comes with it a few benefits. As long as we do not exceed our limits, because when we do that, it becomes torture. If you are exceeding your limits you have to a) adjust work or b) adjust your chronic pain management. Or both. But certainly helping with chronic pain management goes a long way in helping a person continue to function in their workplace.
I still constantly fight myself over ambitions I have. What I believe I can do vs. what my body has historically told me I simply cannot do. Frustrates me immensely. Especially when it is also an enjoyment factor. What you enjoyed doing vs just a job.

Preparing for work with chronic illness

explore thedeepestwaters.png
The Brainless Blogger is returning to work, once I get all that sorted out. I had to get a new vehicle because my brother hit a deer and wrote my off. So that part is taken care off. And I need to get my migraine Botox redone again so that side of things will be done. Then just the work side to get done.
Working with chronic illness and pain is a complicated thing. We have a lot of strategies we use at home to cope with pain and illness that we have to somehow transfer to the workplace to cope with the pain, fatigue, and illness. What I do, is by no means what you may do but it is how I transfer things over with my two primary illnesses fibromyalgia and chronic migraines.
  1. Mental illness- I had my depression due to pain treated, which was necessary. It was compromising my capacity to cope with the pain. So that was a step that was needed. And I am glad it was done. I feel much better for it.
  2. I saw a pain psychologist regularly and learned a bit about acceptance and pain management. And in general some of this issues holding me back from my coping skills.
  3. Exercise- A regular exercise routine is important and I hope to maintain it when working, since it helps with FM.
So what to take to work with me?
  • Mindful meditation- It can be done in an office environment pretty easily. I find it relieves a lot of the stress of the pain I am in fairly quickly.
  • Ice pack- Nothing like an ice pack for a migraine during a break to get some cold treatment when needed on lunch break. It really does help. I do it often at home and I think at lunch it would be a fine idea as well. Combining that with the meditation likely, with ear buds to knock out sound.
  • Magnesium oil- for general pain and for migraines- absorbs the magnesium quickly but bypasses the digestive system for those of us who have digestive complaints with magnesium. As I sure do. But a shot of magnesium helps with migraines. It also helps with muscle pain.
  • Migraine balm- I use Japanese mint oil for a migraine balm. Apply it all the time, as needed and a must have for work.
  • My fatigue herb I take twice a day. Rhodiola. One in the morning. One in the afternoon. My B mix in the morning.
  • It would be nice to have aromatherapy but I doubt that is a plausible request, however, you can buy the ones you wear around your neck.
Then, of course, regular medications to manage intensity and frequency of migraine attacks and FM pain.

Monday Manual: recommendations for fatigue

Monday manual fatigue part one and now the recommendations....

fatigue recommendations
BONUS:
  • Take Rhodiola. (Pronounced Road-o-weena. Silent L. Inserted sneaky W. We are not sure where the N sound comes from). Researched for fatigue this may give you a boost. Always talk to your doctor about new supplements. Not because they will know anything about them or contradictions, but because it covers our liability for mentioning it.
  • Take random supplements and herbs until it creates some sort of energetic concoction that may or may not be illegal in some States. Name this concoction after yourself and sell it, thus making you rich and, therefore, enabling you to retire early and manage your fatigue.

I don't need approval

I am awesome as is.I rock my chronic illness selfAnd I don;t need to validate it to you.I need to live the best life that I can..png
I am in pain.
I don't need to validate that pain to anyone.
I cope with chronic illness and pain in many ways.
I don't need anyone's approval of my methods.
All I need to do is live the best chronic illness life that I can.

I don't want to fear life for fear of the pain. The pain will always be there. I want to cope with the pain the best that I can so that I can have the best life that I can. And that involves several strategies and some acceptance of the pain itself and chronic pain management.
I have a life to live. I want to live it. Carefully. Moderately. Pacing. Doing the work I need to do. Getting the treatment I need to get.

Maybe I should...
Why don't I...

No.

I am on a path. I am trying the strategies that I want to try right now. If they fail I will move to the next strategy and the next and the next. I find what works, and I keep it. I find what does not, and I discard it. Every single on of us is different. We often do not need the random health advice from a perfectly healthy person. Not that I will not listen because I will. I will listen and see if it is something I know or do not and hold that information for later. But that information never gives one the right to dictate that I must do such and such 'or I don't want to be well' or 'I don't want to cure myself'. I must do nothing. You have no right to dictate anything. And I want to be as well as possible... there isn't a cure.

You can't be in pain because...
You were fine yesterday...

No

My pain is mine alone. You have no right to dictate how I should or should not behave with it. That I cannot laugh. That I cannot enjoy myself. That I cannot have good days. That I must be in abject misery forever. Well, you are wrong. Simple as that. And my pain is my own, not yours to comment on. To doubt. To judge. I have to cope with it. Live with it. Endure it. How I do so, is my choice. My good days, are mine. Pain variability is a simple fact. Good days. Bad days. It is a mix.

laughter.png

Maybe you, that judgmental random stranger, will have to accept people with chronic illnesses and chronic pain have complex treatments. Pain you would beg for mercy for it to end if you had it. So, no, we are not lazy twiddling our thumbs all day doing nothing. We are doing all the things we need to do to manage the pain so we can do things like work and socialize and have some semblance of a life again. We will take what we can get when we can get it.

Frames of Mind

FramesofMind_FB_image
Announcement of this awareness campaign has come out to post your art to help awareness of migraine.
Select submissions chosen by notable migraine experts will be displayed at the 59th Annual Scientific Meeting of the American Headache Society from June 8June 11, 2017 at the Westin Boston Waterfront in Boston, MA and other migraine-related events throughout the remainder of 2017. Additionally, art submissions will be displayed on the My Chronic Migraine Facebook Page.

So consider participating in this migraine awareness campaign via art that expresses your migraine experience. Not one for art myself, since I am not too artistic. More for the written word; fiction, poetry, essays- that sort of deal. But I will be eagerly awaiting to see what everyone comes up with.

Research: looking at sleep and fibromyalgia

892
I have talked about fibromaygia and sleep before.
See: Fibromyalgia, sleep hygiene and insomnia
Lack of continuous sleep in Fibromyalgia
#sleep duration and# fibromyalgia #pain intensity
 
Now we have another study looking at our quality of sleep and sleep dysfunction in fibromyalgia. It is one of the hallmark symptoms of the syndrome. This study unsurprisingly states we have difficulty falling asleep and worse quality sleep compared to control groups of healthy individuals. Surprise! Not really. Sort of knew this from my actual sleep.
The study Sleep Disturbances In Fibromyalgia: A Meta-Analysis Of Case-Control Studies was a meta-analysis of previous studies. I rather like these because they are reviewing a lot of combined data. In this case 25 studies with 2,086 subjects in total.

Studies evaluating sleep with polysomnography reported significant differences between fibromyalgia patients and healthy individuals concerning wake time after sleep onset, total sleep time, and sleep efficiency, among other parameters.
Studies assessing sleep with the Pittsburgh Sleep Quality Index reported significant differences in global scores, sleep onset latency, and sleep efficiency between the two groups of participants. Fibromyalgia News today
Again we get the notion we wake up 'unrefreshed', which we do, no matter how much sleep we get feels like we got none at all. With this study this may be because of our difficulty falling asleep, the poor quality of that sleep (long suggested), the lighter sleep (I would also say frequent sleep wakings) and shorter sleep duration.
“Clinical trials have shown that improving sleep quality can reduce pain in individuals with fibromyalgia,” the researchers wrote. “Therefore, primary care providers should be informed by the findings of the present study and proactively assess the risk of sleep disturbance in patients complaining of chronic widespread pain or consider the diagnosis of fibromyalgia in these patients. Clinicians should also actively treat sleep disturbances when poor sleep is identified in individuals with fibromyalgia.”Fibromyalgia News today
This is important-- actively treating the sleep dysfunction. The consequences of not doing so are plenty. Sleep deprivation is not fun. One example that happened to me is I started getting regular sleep paralysis events the more sleep deprived I got. I had suspected partial seizure events as well. And my migraines in the morning were brutal due to lack of sleep. When the sleep issues were treated, even moderately, morning migraines diminished (migraines start a few hours after waking most of the time) and the other events ceased. I do occasionally get sleep paralysis still, when I have a few days of really poor sleep. This isn't even counting pain from lack of sleep or cognitive dysfunction purely from lack of sleep.

Review: Fibro Soothe

"I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "

2017-04-12 01.09.54



Prohealth offers the product Fibro Soothe. I personally am pretty interested in these fibro supplements and I have tried some before. They save me from having to buy so much more, and I can just buy the one to take regularly to help my Fibromyalgia. Right there is one perk.

It contains: Frankincense, Turmeric Longvida, DL-Phenylalanine, Ginger, Devils Claw, Ashwagandha, Bromelain, Papain, and Turmeric Powder.

I am pleased to see Turmeric on the list as well as Ashwagandha and ginger.

  • Turmeric: Within Turmeric is Curcumin, the active ingredient which is well known as an anti-inflammatory. The site says it may 'Promote soothing comfort in muscles and joints.' Fact is, FM is one of those syndromes investigated for low-grade inflammation so this is a good product for us. (study, study, although you can find many). So treating inflammation, so a good idea at this point.
  • Frankincense: (Boswellia serrata Wokvel)- is likewise an anti-inflammatory. Here is a study on osteoarthritis where they had significantly improved pains scores and function. Most of the research on it for arthritis is good and positive.
  • DL-Phenylalanine: is thought to boost dopamine and Norepinephrine. Most importantly, it is thought to help with help with how the brain and the nervous system process pain and respond to pain. And fibromyalgia is a pain processing disorder. It actually can be used to relieve minor depression, which is an added perk for me.
  • Ginger: They put in the ginger due to its anti-inflammatory qualities. But just so you know, it is awesome for nausea, which I have a boatload of. I welcome it in any supplement because my nausea doesn't agree with them either, or anything.
  • Devils Claw:  It has been used for pain, arthritis, and musculoskeletal disorder. The Prohealth site references this study where it was seen as equivalent to the NSAID Vioxx. Since we know the risk with NSAIDs, and I have experienced the long-term side effects, that is something to consider.
  • Ashwagandha: Has been used for anxiety, insomnia, and stress. It can decrease cortisol for stress. For those factors alone I think it is valuable. This study showed it reduced stress and substantially reduced cortisol.
  • Bromelain: Is being used for its anti-inflammatory properties. Although you might be interested to know it can reduce heartburn and help with nasal congestion. Bonus!
  • Papain: Used for pain and inflammation

Other mentions:
Other Ingredients: Silicon Dioxide, Starch, Soy Lecithin, Stearic Acid, Maltodextrin, Ascorbyl,Palmiltate,Milk, Capsule (Hydroxypropyl methylcellulose, Purified Water). Contains Soy, Milk.
Contraindications: Not to be used during pregnancy. Freshness packet is not edible and should be discarded Prohealth
So we see a theme here. Inflammation. Why is that? Again, because there has been a lot of research recently indicating there is inflammation in fibromyalgia. It makes a great deal of sense to address that. I liked this supplement for that focus given all the recent research I have read on the subject, not to mention, the general pain relieving focus. Prohealth product Fibro Soothe is, I think, a well-combined combo of herbs.  The Ashwagandha and ginger being I think great additions. The Tumeric providing a good core to build the others around. On my trial of it, I have been in a lot of pain, flaring majorly lately, but it seemed there was a steady reduction in there. I think this is one I will add to my other fibro vitamin supplement choice as I think the two will work perfectly in conjunction. I am going to see how it goes in an even longer period of time, because so far it has had a benefit on a severely bad bout. Bound to do better once I am not so flaring.
The one issue I have a problem with is the soy in the pills. Since I take synthroid and I am supposed to avoid soy. But it seems to be everywhere these days. Hard to do really. I'll have to look into it but it might be like my calcium... can't take it within 4 hours of the synthroid. Synthroid is the most finicky med for such things.
Inflammation in Fibromyalgia


In 2013, Spanish researchers published an hypothesis that inflammation in fibromyalgia could be the result of dysfunction in the mitochondria (parts of your cells that break down nutrients to create energy.) Another study out of Spain, from 2010, showed elevated levels of mast cells—which release inflammatory chemicals in response to various triggers—in the skin of people with fibromyalgia.
Also in 2012 and 2013, multiple studies revealed several markers of inflammation in fibromyalgia, including high levels of C-reactive protein and pro-inflammatory cytokines. Very Well
. Further reading about inflammation in FM: Study Reveals New Treatment Target for Fibromyalgia: Inflammation in the Brain

I would love to just redirect you to the new site...

But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or s...