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When I Debate Whether or Not I 'Really Need' My Pain Medication

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I often wonder why we as a society seem so hesitant to take pain medication. Whether it’s a tendency to suffer all day with a headache because you don’t feel justified in popping some Advil yet, or hesitating to ask a doctor for pain medications for fear of being labeled a “drug seeker,” why does it feel so embarrassing to admit that you need medication to treat chronic pain? I just wonder where this fear comes from.

Do we resist pain medication because taking a medicine means admitting that something is wrong? Are we so obsessed with being fit and healthy that taking medicine is like admitting failure? Or is it somehow a fear of our own mortality that we won’t face? That having an illness requiring medication means we aren’t in the prime of our life like we wish to be? Is it a societal fear? Do we fear being judged because we are taking a medication? Or are we more afraid of ourselves? Afraid of becoming “hooked” on medications and then craving them?

When I was in high school I used to volunteer at the emergency room, and I’d hear the terms “frequent flyer” and  “drug seeker” fairly often. I never wanted to be “that” patient. The one who got written off as needy or argumentative. I didn’t want to be the one they dismissed as quickly as possible because they didn’t have any “real” issues.

Is it any wonder that I’ve had a hard time asking my doctors for pain medication? Even after being prescribed medicine, I tend to be afraid to take it too often. What will my doctor think if I ask for too many refills? I hate prescriptions that are written “as needed;” well, how often does my doctor think I need this medicine? Does she think I’ll take it once a week, once a month, more or less often? At what point will I hit the threshold where they will stop listening to me, stop caring, write me off?

I feel that any person with a chronic illness has probably been in my shoes. I debate taking my pain medicine, even though I’ve been tethered to my heating pads for days in too much discomfort to move around much. I debate whether or not I should take the medicine the same way that I used to debate whether or not to call in sick to work.  Is the pain really “that” bad today? Maybe I should just try to power through it. How much do I really need the pain medication? (Should I even use the word “need” or does that sound bad?) Even writing about it seems odd to me, as if somehow admitting that I have pain medications prescribed to me is somehow embarrassing. I’ve taken a muscle relaxer the past two nights to try to calm down the cramping pain enough to sleep — is it OK if I take it again today? I never take the maximum dose of my medicines, or if I do I try to avoid taking them more than once a week or so. I’ve had some bad flare-ups that meant taking my medicine for multiple days in a row and I ended up feeling guilty. It’s almost as though taking the medicine is a sign of failure, admitting defeat or weakness. Why can’t I just toughen up and power through the pain?

Then I wonder why is it such a big deal? I have fibromyalgia which means I’ll likely be living with this pain the rest of my life. And yet I still can’t accept that I take pain medication. I take multivitamins every day, and no one questions it (in fact, they tend to encourage it). I take medicine for my allergies and for acid reflux and no one bats an eye. I’ve accepted that these are medications I’ll be taking daily for the rest of my life, so why am I so embarrassed to take my pain medicine when I need it? Doctors happily treat my other illnesses (allergies, acid reflux, etc.),  so why should treating my chronic, endless pain be any different?

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Thinkstock photo by Liderina

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16 Side Effects of Fibromyalgia I've Kept Secret From My Friends

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I can’t stress enough that one of the most effective ways of managing my condition is by keeping a poised and positive mindset. This has taken years of practice and focus to achieve. While some have shared their opinion that this attitude is unrealistic or disingenuous, for me it’s the key to success.

In past posts, I’ve also shared with you that I choose to eat a vegan diet 90 percent of the time. I use this same ratio for my mindset. For 90 percent of the time, I embody the disposition of a warrior: positive, poised and determined. For the remaining 10 percent, I let my guard down.

I’ve kept these secrets because I don’t spend much time talking about the negative effects of my condition. Honestly, I find that when I do, it’s hard to stop. But, with the intent that our chronic pain community is better understood every day, I’m hanging up my armor and letting down my guard. Below are the secrets I’ve kept while living with fibromyalgia, chronic pain, chronic fatigue syndrome and Sjogren’s syndrome for the past nine years.

1. There are 48 hours in a weekend. I spend 18 to 20 of them in bed, trying to heal my body.

2. Would I like to come to your party? Yes! But the hard truth is that getting dolled up on my day off is not worth it.

3. Nine years ago, summer made me think of an endless outdoor festival. Now, I think of when I was a little girl in trouble, grounded to my room while all my friends played outside.

4. “Club My Crib” is my favorite weekend hangout.

5. Every morning I fight a war with my body. My energy is sapped before I even step foot into the office.

6. For the past nine years, I have had morning sickness. Every. Single. Morning.

7. Sometimes during a flare, I think it could last forever and I feel like I can’t go on.

8. Some days the pain gets so overwhelming that all I can do is cry.

'some days the pain gets so overwhelming that all I can do is cry'

9. A flare can come like a hurricane without warning and knock me off my feet. Flares don’t care that you have to present in front of a room full of people in just a few minutes.

10. Every time I picked up my meds and vitamin prescriptions, I used to feel judged by my pharmacist. Now, he and I are besties.

11. There are nights when my pain relieving gadgets and meds just don’t cut it. During a flare, I’m lucky to get more than three hours of sleep.

12. On bad days, I’m in survival mode. I eat what I have to to get through the day…sugary treats and all.

13. It’s been raining for five days. As terrible as it is for you, my fibro body has rusted up like the tin man’s and literally cannot function.

'my fibro body reacts to the rain by rusting up like the tinman... I literally can't function.'

14. Because of the ample downtime I need, my husband and I have watched every episode of every TV series and seen every movie known to man. Looking for something to watch? Our all time faves are Game of Thrones, House of Cards and The Usual Suspects.

15. The fastest way for me to lose my aforementioned poise and positivity is when I see fibromyalgia commercials on TV. They are the worst!

'fibromyalgia commercials on TV make me mad!'

16. I am a warrior: I fight for a normal life every second of every day.

I can only imagine the secret struggling happening throughout our chronic pain community. If you feel like this is a safe place to share, I encourage you to reach out in the comments. You will find that you’re not alone. You may have the right words of support for someone who’s shared a story just like yours. Now, I’m going to put my armor back on and hope there’s a new release on Netflix.

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Why Fibro Fog Is My Most Devastating Symptom

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Most of us have put the milk in the cupboard and the cereal in the fridge. Most of us have occasionally misplaced our keys, struggled to concentrate during conversations or had difficulty concentrating on paperwork. However, for people with fibromyalgia, these problems happen more frequently and can be more severe.

The ability to put a sentence together and know that the fridge is called a fridge, the ability to understand what someone has told you, the ability to partake in conversation and the ability to make decisions are things we all take for granted. These are basic skills which the majority of human beings develop from a young age. You don’t ever think that these simple things will become problematic – much less non-existent. The usual symptoms of fibromyalgia, I expect, are familiar to those who have this beast. However the symptom that is the most distressing for me is “fibro fog.”

I sit there having a conversation and forget what I am saying mid-sentence. I forget the actual topic we are talking about. I do the grocery shopping and when I come in, my son helps me to put the food away. He asks me where to put the oranges but I can’t think of the name so I “hand signal” a bowl shape and point to the fruit bowl. I am selling my care which in the past would have been effortless, but now I am worried about the decisions I have to make, so I ask my husband to do it for me. I sit in my car and wonder for a while: where am I going? Then: how do I get there?

I was once a feisty, independent women. I knew what I wanted and how I would get it. I had a career I was proud of and worked hard for, but I am a different person now. I am losing self-belief, self-confidence, friends and a social life. I’m losing the ability to live the life I once had. I have to think differently, I have changed the way I do things and I have to cope with the fact that I am a different person now. I have to use my brain differently and I am learning new ways of doing this. All of this has had an enormous effect on my family and it seems, from forums and social media, that these are common problems in all fibromyalgia patients.

Cognitive impairment is a common manifestation of fibromyalgia and some may argue that it is more disabling than pain and fatigue. Having had fibromyalgia for 15 years, I have seen a steady progression in all of my symptoms including reduced cognition. Since experiencing significant “fog,” particularly during flare-ups, which incidentally are about every 10-14 days, I have not been able to work. My work as an advanced nurse practitioner involves conversation about health and illness. I need skills in decision making and the ability to explain quite complex physiology in an understandable way. Being a wife, mother and gatekeeper to everything in the household requires the same skills. It doesn’t matter what level of academic success you have achieved or what you do to earn money; impaired cognition has the same devastating effect on us all. According to “Fibromyalgia and cognition” by JM Glass, there is evidence that fibro fog may be exacerbated by the presence of depression, anxiety, sleep problems, endocrine disturbances and pain. What remains unclear is what is causing these cognitive challenges.

In a 2015 study, 60 people were observed – 30 with fibromyalgia and 30 without. Researchers found various impairments in attention and memory in the fibromyalgia patients when compared with healthy controls. They also found that these impairments were independent of depressive symptoms which is significant, as many clinicians will assume depression when cognition problems occur.

According to P.H.F. Bertolucci and F.F. de Oliviera in “Cognitive Impairment in Fibromyalgia,” there is some evidence that the central nervous system is functionally and structurally affected by fibromyalgia but there are no naturally occurring molecules or genes that can be identified on scans that detect and quantify these cognitive disturbances. There are, nonetheless, various theories about reduced oxygen levels and disturbances in certain brain chemicals which are responsible for the fogginess.

The lack of physiological evidence means that traditional scales and tests or even self-reported questionnaires are currently the only form of diagnosis. In clinical practice this may provide an easy screen for the presence of cognitive impairment in those of us with fibromyalgia; although, having said this, I have never been offered any tests to identify severity, and in my work I have never come across cognition tests specifically designed for fibromyalgia. This is important as fibro fog is very different to other cognitive disorders because it waxes and wanes over the course of our lives. It seems that “fibro fog” – like the plethora of other symptoms – is just something else we have to cope with and live with.

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Thinkstock photo via fizkes.

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What Photographs Mean to Me as I Live With Fibromyalgia

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They say a picture is worth a thousand words, but in reality, it is simply one moment. The viewer does not know what happened a second before or after that photo is taken and the audience only sees what you wish them to see.

This year I went on a holiday with my partner and my family. We stayed somewhere beautiful, the sun was shining and we took many happy photos that were often shared with our family and friends. What people couldn’t see was how awful, exhausted and sick I was feeling every minute of every day we were away.

You see, I have a chronic illness. I have fibromyalgia.

I was in so much pain, my whole body was aching. I was dizzy and had migraines most days we were there. I was constantly vomiting and had to carry bags with me everywhere I went in case I was sick. I spent a lot of time laying down or sitting, and we only walked for short periods of time. I didn’t swim in the ocean once while we were there, because I was too exhausted to try and walk through the sand and the waves. I was happy because I was with the people I loved, but I was struggling.

These pictures do not reflect how I was felling, how exhausted I was, how sick I felt or how guilty I felt. For that moment, I was able to hold myself a little higher and plaster a big smile on my face.

I can’t speak on behalf of everyone who has an illness or disability, but for me it is a constant struggle of not wanting to show how weak I feel and wanting people to understand what I go through. This is especially true when it comes to sharing photos. I don’t share photos of myself when I’m sick or curled up in bed, just as I don’t post videos of me struggling to walk when the pain is bad. If you look on my social media accounts you will only see pictures of me looking happy and healthy, amongst shared links that promote awareness of my condition.

Perhaps it is because I don’t want people to pity me or think I’m incapable of doing anything, but then I face the struggle of people thinking I can do more than I’m capable of on that day or that I am cured. That’s my anxiety kicking in and causing me to overthink about something that isn’t important in the grand scheme of things…And that’s why I need to look at my photos in a whole new light. It does not matter what others see, what matters is how I feel when I look back on those memories.

So, whilst the pictures I have may only capture a second in time and not the whole story, I’m thankful to have them, because they reflect the love we have for one another and my strength. These pictures serve as a reminder to me that even on the tough days, when I feel terrible and I just want to crawl into bed, that I am strong and I am lucky. Lucky to have a family and a partner that love me unconditionally and will always be there to support me.

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The Reality of Living With a Fluctuating Condition

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Many people start each day with a refreshing shower, and then go to work or achieve their tasks for the day, thinking of it as nothing more than a quick way to wake up.

But for some people, like those with Ehlers-Danlos syndrome, fibromyalgia, multiple sclerosis, rheumatoid arthritis or lupus SLE, it is the entire day’s chore, hard work and achievement that involves a great deal of time, pain, effort, endurance and spoons.

Here is a summary of two consecutive days from this week to show the reality of living with a fluctuating condition.

Wednesday:

When I woke up I immediately felt a piercing pain in my ribcage. I had managed to dislocate a couple of ribs in my sleep. I immediately took my morning cocktail of painkillers… It still somehow baffles me after all these years that I can wake up feeling worse than I felt when I went to bed.

After an hour of listening to music and playing mind-numbing games on my mobile in a failed attempt to distract me from the pain, I still hadn’t managed to sit up… I accepted that I wasn’t going to get much better — this was the reality of my painkillers at their full effect.

So I went to sit up and almost vomited with nausea and dizziness. I walked slowly and carefully to the bathroom with my towel, desperately hoping a warm shower might ease my sore joints or give me some energy.

I went to brush my teeth but it simply felt like I was taking a jackhammer to my bleeding gums. I took off my clothes, dislocating a different rib in the process and using both hands to hoist the taps on… While my body begged for rest.

The water pounds down like rocks. I didn’t feel safe enough to stand so I sat on the base of the cold bath while slowly easing myself under the scalding rain of rocks. I use the edge of the shower door to pry open the shampoo lid and then lethargically (and ineffectively) try to wash my hair, but it felt like I was holding up dumbbells the weight of trucks so I gave up and hoped that the shower would wash away the suds. I painfully opened up the facial wash and rubbed it on, but today it felt like tiny bits of glass. I immediately washed it off, the pressure of the water hurting my face… I reached for my loofa, still sitting in the base of the bath and realized it would hurt too much, so I resorted to rubbing in body wash with my painful, swollen hands as best as I could.

I could feel a headache coming on due to the overload of my senses, everything from feeling the water pounding on me, the smell of my body wash, the cold air tickling me or the sound of my music that today just felt like painful noise.

When it was finally time to get out, holding onto the sink and shower door I slowly stepped out and wrapped myself my towel before slinking down to the floor, holding my head in my hands. My joints screamed, my ribs demanded attention and I would have cried with soul-crushing exhaustion if I’ve had the energy.

I honestly don’t know how long I stayed on the floor. A few minutes I think. I accepted the fact that soon the cold would just make my muscles tense up more so I crawled, literally, to my bed where I collapsed still in my towel. Too exhausted to even get dressed or properly dry myself, I lay there resenting how quickly my life can change with fibromyalgia.

I spent the rest of the day too nauseous to eat aside from plain noodles and dry cereal, tossing and turning in bed. I attempted college coursework but after a few minutes I had to lie back down due to overwhelming pain.

Thursday

My alarm wakes me at 8 a.m. I hesitantly moved without too much pain, and actually felt refreshed from sleeping.  I take my pills and snuggle in bed for 30 minutes before getting up and starting my yoga routine (despite my cat thinking this time on the floor is for cuddles!). On good days I make the most of my extra spoons.

After this I trot downstairs and prepare a healthy breakfast before replying to a few emails and cramming in an hour of college revision. I then bundle my towel and hop in the shower (easily turning on the taps) with my favorite music playlist in the background. Not many people admit to this, but yeah, I totally did a little dance in the shower and lip-synced along to Green Day when my favorite tunes came on! A stark difference to yesterday’s painful and exhausting ordeal.

I got out the shower effortlessly feeling refreshed and energized, I got dressed, styled my hair, applied a little makeup and went into town to run some errands. When I got back I needed to rest for a couple of hours before I did a few hours of college coursework, but I made a meal for my loved ones and spent the evening gaming with my boyfriend. I was really exhausted that night and fell asleep quickly.

Now, there may be an “average” day (what I am typically like) but I still have days that are completely unexpected — both good and bad. For no reason, and without my control. This makes it incredibly difficult to plan anything, even if it is for later on that day. This means I often have to cancel plans at the last minute which I find embarrassing and isolating.

It is scary to live without any certainty of what tomorrow will bring, unable to predict or plan anything. Even the smallest daily tasks like showering can be exhausting for those with chronic health conditions. Every night we go to sleep unknowing of what the next day will be like — and every day is a cruel surprise of whether we are in control of our bodies that day or not.

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Thinkstock photo by narith_2527

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The Roller Coaster of Emotions to Chronic Illness Acceptance

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I spend a lot of time reading articles, memes and quotes on what it’s like to live with chronic pain and fatigue, hoping to find the magic words to capture the essence for me, but I never quite do. Don’t get me wrong — many thoughts and quotes resonate deeply with me, but as I’ve come to realize, everyone’s story is truly their own. So this is mine.

For me, pain and denial go hand in hand. I spend so much time pretending to be “normal” that I almost believe I am. I’m then genuinely taken aback when I’m floored by it.

I can have a handful of “good” days, and by good of course I don’t mean pain-free but days where the pain is mostly background noise, where the fatigue is minimal and where I can, more or less, do what I need to do. I know not everyone has even one of these days, let alone a few, but every time it tricks me. I start to believe, “Yeah I’ve got this, I’m pacing, I’m grooving, I can do this. I’m so winning this chronic pain life.” And then it gets me. Every. Single. Time.

Sometimes the flare is like a bolt from the blue. It’s standing from the sofa and realizing I can’t walk. It’s waking in the morning as if I’ve been drinking heavily for hours and the fallen down.

It’s sitting on the sofa for a “quick five minutes” and waking up four hours later.

Other times it creeps up. It’s the discomforts that grow. It’s the inability to get comfortable in bed because lying on that side hurts my hips but the other way hurts my neck, lying on my back causes spasms and lying on my front makes me nauseous with pain. Knowing that whether I give in and get up or if I finally fall asleep, tomorrow is not going to be good.

And it hurts. Not just physically, ‘cause you know, chronic pain… but emotionally. Mentally. It’s a crushing disappointment that I’ve got to change the day or week or project plan and dammit, it’s not fair. I had it. I just had it. I was in control! But it’s gone, slipped from my grasp without warning.

It’s a grief I keep experiencing when I have to say no instead of yes, even if the invitation is just a 20-minute cuppa with a friend because I need every one of those minutes to rest. Then the anxiety creeps in that I might lose another friend, miss out on the next invitation, become an outsider to the life I am so desperate to be part of.

It’s the worry that my employer will finally have enough of my illnesses and limitations when I have to switch a face-to-face meeting to a teleconference because I only had the energy to work that day, not get dressed and drive to the office, too. Or the embarrassment explaining to a new colleague why I have to take the lift just one floor or drive the three-minute walk to the neighboring building when yesterday I could walk twice as far just fine.

It’s the guilt I feel when I’ve snapped at the children all afternoon because that discomfort isn’t a discomfort anymore, it’s a fire in my belly and a knife in my back, and I just can’t process their questions, mediate their squabbles or tolerate their elbow-y cuddles.

It’s a snarling frustration, at myself, the illness, that I just can’t do it, whatever “it” is, no matter how much I want to. That I’ve got to stop right now and lie down. The pain, the fatigue, it wins.

It’s that feeling of uselessness when my daily “things I need to do” list is already pretty small and I’ve used up all the help offered or paid for today for the cleaning, school run and cooking, so why do I need more? Why should I? That I’m already a shadow of myself, not the me I “should” have been and the me I keep convincing myself I still am. And then I feel like a failure. ‘Cause I don’t have it. Not at all. It has me. And every time I forget, it reminds me, sooner or later.

I get through these “down” times eventually, sometimes during the flare itself but most often some time afterwards, and I tell myself I’m not going to forget again. I’m going to remember, I’m not going to get complacent, I’m not going to let it surprise me again because it’s just too hard to keep getting my head around. But do you know what? Those few days when it is under control, and I do have it and I believe it will always be this manageable… they’re golden. So for now, on this roller coaster route to acceptance, I need those golden days of denial, the hope those days of pretending gives me, the days when I believe I’m “normal,” that I’ve I got this under control — because one day, I truly will.

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