Posts Tagged ‘chronic pain’

Pain in fibromyalgia

Grouse Feathers bring good medicine

A personal experience of living with persistent long-term pain

I’m aware of pain every moment.  A kind of pain that without medication is absolutely unbearable.  A kind of pain that is hard to describe.  It’s persistent, invasive and all-encompassing.  It isn’t only muscle or joint pain, but feels like every cell in my body hurts and is crying out pain.  Sometimes I feel like I’m on fire from the inside out.

Sometimes breathing feels like I have broken ribs and knives are sticking in my heart and lungs.   This kind of pain scares me.  Doctors believe it’s the tissue around my chest cavity that causes this particular pain, which they say is due to fibromyalgia.

I live with pain that the doctors say may very well continue the rest of my life.  I’m only forty-six.  I have severe fibromyalgia and Chronic Fatigue Syndrome.  I also have other conditions that cause pain, but in comparison are easily managed.

I’ve lived with severe pain every day for about seven years.  I’ve lived with intermittent pain from various conditions throughout my life, but fibromyalgia pain is the worst, both because of the intensity and chronicity.

I wake up every morning to pain, usually a moderate level, other times severe.  I always have some level of pain.  Sometimes the pain has been so severe that after taking enough pain medication to manage it, I’ve been left in a state of mental shock from the experience of intense widespread pain.

Sometimes I wake up crying.  Other times it’s the first thing I do.  I’ve cried myself to sleep plenty of nights.  It’s not only the pain that I cry over, but also the ongoing battle to manage and accept it.  I cry because pain intrudes upon every area of who I am and how I live my life.  Most of the time crying helps.  A good cry can be a positive experience.

Sometimes I have severe muscle spasms that take over my days, my nights and my life until they go away.  Hurting that bad wears me out physically, mentally and emotionally.  I can’t take muscle relaxers and narcotics don’t help spasms.  Spasms are completely debilitating.  They started a couple of years ago and each time they’ve been worse.  With a neck spasm I can’t move my head and the pain is off the scales – emergency room pain.

Sometimes I think about what doesn’t hurt.  My nose doesn’t usually hurt.

I don’t think I could live with the kind of pain I’ve experienced without medication.   I once seriously thought that I would have to tell my family it was not humane to expect me to live anymore.  I had decided during an excruciatingly painful camping trip that I could not take the kind of pain I was in and had been living with.  I had sat up all night in my tent thinking about it.

I was with my two dogs on top of a beautiful mountain.  I thought of my son and my mother.  My family.  I cried and sat there until sunrise, experiencing and feeling the enormous pain.

Fortunately, when I returned home I went to a doctor who began treating my pain.  That was five years ago.

It may be that pain will drive you crazy after a while if you don’t have a way to treat it.

Pain and managing it is as much a part of me and my life as is anything and feels like it may be the most important part.   I feel sure I’d go into shock and possibly have a heart-attack without pain medication.  That scares me.

For the most part I’m able to manage pain with medication.  I’m deeply grateful to have medication.  I’m normally able to keep the level of pain around a three on a scale of one to ten when my medication is working well, which includes not being groggy.  A level three or four is well-managed pain.

As a result of pain medication, I don’t have as many episodes as I used to of the kind of pain that feels like I can’t breathe or that I’ll have to go to the ER.  Sometimes I miss a dose and fall asleep.  That’s usually when I wake up with my entire body on fire and my chest cavity feeling like a mule kicked it.

I get scared of losing my doctor.  I’m afraid I would get a new doctor who wouldn’t understand how severe my pain is, like five years ago when many doctors didn’t believe in fibromyalgia.  They didn’t know what fibromyalgia was and would often blame it on psychological factors, such as stress or depression or they called it a, “trash-can diagnosis.”

I’ve tried nearly every non-narcotic pain reliever; including most of the antidepressants used to treat pain, along with the anti-seizure drugs Neurontin and Lyrica, but absolutely could not tolerate the side-effects.  I eventually began treatment with a tried and true pain reliever, which treats the pain with relatively few side-effects.

Several months ago stress increased in my life and so did the pain.  Any type of stress directly, and these days immediately, causes fibromyalgia pain to get worse.

I also went on another camping trip that physically set me back.  I lifted logs to have a fire.  Big heavy wonderful logs of Locust wood that I kept burning for four nights and five days right up ‘til the last few hours of packing to leave.  I did plenty I shouldn’t have done.  I hadn’t been camping since that one trip almost five years ago.

Being able to camp is something fibromyalgia has taken from me but evidently, I rebelled.   It didn’t work out too well.

As a result of high levels of stress and the killer camping trip, I recently had to increase my dosage of pain medication.  I thought the aftermath of pain from camping, which was almost four months ago would go away, but it never did.

Pain is depressing.  Knowing that I might have to take pain medication for the rest of my life is scary.  I get scared of getting old because I wonder how an older body will tolerate this pain or the side-effects of medications.   I wonder how many times in my life I will have to increase the dose of pain medication.  There are only so many times a person can do this in one lifetime.  It’s all scary.

Personally one of the most difficult aspects of living with fibromyalgia pain is that it’s invisible.  The same is true with medical fatigue.   People will question and some will outright attack your character.  Some people question your intelligence and your honesty, along with your motivation to seek out disability benefits when the pain and fatigue is severe.

Personally, it has been my blood relatives who have hurt me the most.  I’m not sure what their intentions have been or what they gain from not believing that I have pain that requires treatment.  They certainly don’t understand what Chronic Fatigue Syndrome entails.

I don’t know where the silver lining in the cloud is.  I’d rather not have pain than to learn the lessons pain teaches, if that’s where the silver lining is.

Pain is humbling.  It teaches that the human body is what it is –human.

Pain begs me to take better care of myself and to care more about myself.

I grew up hearing the saying, “What doesn’t kill you makes you stronger.”  I wonder.  I’m darn tired and worn out.  I think I would be stronger if I hadn’t had ongoing experiences that felt like they might kill me.

I’m not too good at finding the silver lining in a cloud of pain.

I’m better at finding ways to cope.  Little things that make me feel better like hanging out with my dogs.  I love to rub the silky coat my young dog has.  She’s the softest animal I’ve ever touched.  She’s my tender heart.

My other dog is really my son’s dog but lives with me.  He and I have always had a strong connection so we’re pretty close pals nowadays.  I feel like his grandma.  He’s a stoic fellow, but once in a while he’ll decide to give me one little kiss, just one and it’s always a surprise, like when I come home after having been out for a while.

My dogs give me joy and really do comfort my heart when all else seems lost or out of control.  Dogs rule.  They never argue and certainly never are they mean, at least mine aren’t.  Dogs love you unconditionally, as long as you feed them, so that’s pretty cool with me.

Intentionally experiencing gratitude helps me ease anxiety or depression.

I think about the basic necessities in life –shelter, clothing, food, and sometimes little luxuries too.  I think about things I’m grateful for because it actually does make a little difference in the way I feel.  Some days it makes a huge difference.

As I write, the worst part of chronic pain is that it hurts today and I know it will tomorrow.  The best part of having to live with chronic pain is that I have access to good medical care and medication to treat it.

Maybe one day I won’t have such severe pain.  Maybe one day I won’t have fibromyalgia.  Maybe I’ll discover new or different ways of treatment that works.  One can hope because anything is possible.  Well, most anything.

Image via “The Graphics Fairy” — “Feathers -Autumn Display”

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Horse pills and little angels

she calls me an angel and gives me sweet treats when all I do is what I do best.

“I think dogs are the most amazing creatures; they give unconditional love.  For me they are the role model for being alive.”  ~Gilda Radner

“What’s your pain level?” the nurse asked.

“Nine,” I quickly remarked.  I was too tired to say nine and a half and would have said ten, but that’s reserved for pain that sends a person to an emergency room.  If I hadn’t had a doctor see, then it would have been an emergency.

My blood pressure was high, which for me means severe pain.  The doctor said I needed another round of the horse pills I had taken.

“I don’t know why I feel this bad,” I told my good friend after the appointment.  “It’s a simple bladder infection,” I said, but my whole body ached.

“You started out on the edge of good health,” he gently responded.   “Now your body has to use all it’s energy to fight the infection.”

My friend didn’t have much time to spare, but he made me a wonderful egg sandwich.  It was no ordinary egg sandwich.  It came with such tenderness in his heart, that I felt like the most special person to him in the world.  That right there is healing.

I went home and straight to bed.  My beloved canine companion, little Ruthie, woke me with a gentle kiss on my arm around seven o’clock.  She knows exactly when dinner time arrives.  Ruthie is such a tender dog.  She always asks for what she needs in the sweetest little ways.

Our other dog heard me stirring around and came into the bedroom.  They both wanted to eat and go outside. 

The first thing Ruthie did when we walked outside was spot a rabbit.  Holding her back was hard and it made me irritable.  I raised my voice, which made me feel guilty, but I knew I couldn’t take being pulled by her.   I brought them back inside, fed them and returned to bed.  They both settled on the floor beside my bed, like little angels watching over me.

The dogs don’t sleep in their usual places when I’m sick.  They are more protective of me.  They’re vigilant little guardians.

Living with chronic pain and exhaustion is hard.  Getting sick on top of being sick is depressing.

I decided to rent movies to make it through the next dose of horse pills.  I hoped depression wouldn’t get the best of me, but then I have these little creatures walking on four legs.  They are the best medicine in the world!  Dogs really do rule.

 

Fibromyalgia, Severe Pain and Injuries

It hit my legs first.  I felt it deep in my bones when I lied down.  The pain felt like the beginning of a tooth ache.  I changed positions and fell asleep.  Several hours later I woke up with my eyes wide open.  The pain was intense.  I thought I was having a nightmare, but I wasn’t.  It was real.

"Yikes" Fun image by Leslie Sigal Javorek at IconDoIt, the blog!

YIKES!!!

IMAGE CREDIT: Leslie Sigal Javorek, IconDoit, the Blog!

The severity of pain lessened dramatically when I got up and moved around.  I was in that state of mind where I wasn’t fully awake, yet like a dream, or nightmare, I had more of a feeling than a detailed memory afterward.

fibromyalgia severe pain invading every cell

The memory of the deep pain I woke up with evoked an image in my mind.  I imagined thousands of little creatures; their legs strong and claws sharp; grasping and gnawing at the fibers in my legs; having invaded every cell.

By mid-day my upper body started hurting again.  By the end of the day, I found myself crying.  I realized there was more going on than the regular level of pain I live with.

I put Lidoderm patches on the places that hurt the most and took breakthrough medication; extra pain medication that I don’t normally have to take.

I didn’t know what to think.  Was it my lungs or the connective tissue around my lungs, I wondered?  The pain in my upper back, like the pain in my legs earlier that morning,  was  so deep and inclusive that I couldn’t tell if it was bronchitis or muscle pain.  My muscles felt bruised.  Breathing hurt.  I hurt all over, inside and out.

The patches and extra medication helped and the next day I was able to take the dogs for a walk.  My young, but strong dog, pulled my arm.  A surge of pain moved through the center of my back, which is when I remembered a dog walk two days before this new pain hit my body.

The dogs had spotted our neighbor.  They adore her and hurled forward when they saw her.  I held the leashes, running behind them for ten or twenty feet.  It had hurt, but the worst of the pain was yet to come.

One event like this can cause a flare up of fibromyalgia pain that might last a couple of days or a few weeks.  Injuries can cause severe flares and pain levels to permanently increase.  

Due to post-exertional pain and fatigue, the smallest of chores or tasks can cause days of illness.  I’m not good at pacing because the ideal rate of speed is so slow, but I’ve learned the consequences of over doing things.

Moving into my apartment caused me so much pain that I had to go on a different and stronger medication after it was all over.  Planting five plants in my yard two summers ago put me in bed for the best part of a month.  Falling from my bicycle on Halloween caused me to go, “on a tendon and ligament adventure,” as my doctor remarked.  Not long after the bike accident, while cleaning a ceramic cabinet knob, I endured severe and deep cuts to two fingers. 

Yikes!

Injuries that other people get over fairly quickly can cause flare ups and become chronic pain conditions for a fibromyalgia patient.

Pain is pain.  Living with it is hard and sometimes, depressing.  Pain can be physically, mentally and emotionally completely consuming.

I cannot imagine not having medication that relieves the intensity.  I simply can’t.  I seriously think that my body would probably go into shock or I would have a heart attack from pain.

Before Medication…

I took my dogs along with me on a camping trip to one of my favorite places in the mountains.   A friend had come to help me set up camp.  It wasn’t easy and it rained, but I knew the weather would clear soon.  The morning would bring beautiful bird songs, close views of the white-tailed deer who legally own the place, and because of the few number of campers, the sounds of nature would wake me upon the first shadow of light.

I woke up around 2am in more pain than I had ever felt before.  I sat there for several hours, literally crying in pain.  Before meeting the beautiful morning I had anticipated, I had concluded that I could not continue to live with the pain I was experiencing. 

My thoughts had gone downhill for sure.  I felt that anyone who expected a person to live with that kind of pain seemed inhumane.  I wanted the same compassion as my dog had been given when we learned she had bone cancer.  My tail wasn’t wagging anymore.  I wasn’t laughing anymore.  Food didn’t matter anymore.

That weekend changed my life.  I had been ready to die.  Fortunately, I had a good doctor who told me to try taking a pain pill.  I did and it worked.

I realized better what a toll the constant pain had taken on me and my life, after finding relief in medication. 

Taking pain medication doesn’t necessarily mean you are out of pain.  I think many people simply want to reach a tolerable level of pain they can live with.  Most people I know who live with pain want very much to function as much as possible.

I have pain-free days, but most of the time I have some level of pain.  My muscles are usually tender.  My body usually feels bruised. 

I have flares, but I’m truly grateful that I don’t have to live every moment of my life in severe unrelenting pain.  I’m also grateful to have a doctor who understands very well that fibromyalgia hurts.

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Post edited and updated on the eleventh of April, 2013

Fibromyalgia HURTS!

“How often do you wake up in pain,” my good nurse asked.

“Pretty much every day lately,” I told her.

Her question was the first thing that came to my mind today as I was waking up. 

I lied there for the first few minutes,  as my brain processed how much pain I was feeling.  I thought about my medication and how it was only steps away.

Having overslept, I was an hour late with my dose and when I woke up, there it was!  Severe Pain all over my body. 

It’s hard to know how much pain to accept, tolerate or live with, when you live in a certain amount of pain all the time.  It’s also hard to recognize when pain has worsened until it eases up and I think wow — I was hurting a lot!

I decided about three years ago to take medication for widespread ongoing pain.  

“Pain and Living,” is one of my posts in this blog, which was written about the time when I decided that enough was enough.  I could only tolerate so much pain.  I had met my limit.

I wanted a chance at living my life.  I began to notice a difference in the quality of my life right away after going on medication for pain.

I was doing well with the medication.  This means the level of pain I was experiencing was much lower and at times, managed well enough that I could do things I hadn’t been able to do in a long time.

Things were going pretty good and then came life.  Regular ordinary life.

For me, regular ordinary life includes intermittent crises.

Stress triggers fibromyalgia and fibromyalgia is stressful.

My most recent stress is that I took a hard fall from my magic bike.  

Within a ten-day span, I went from having a very sore elbow, shoulder and back, to waking up with severe back pain and finally feeling pain in every place in my body that has tissue.

Fibromyalgia covers a lot of ground.

Yesterday I was able to do some house chores.  Some days I wake up and realize I’m able.  I know I’m supposed to pace myself, but when I get these able days I try to catch up on things, especially dishes and bathroom chores.

Laundry is the hardest because of lifting clothes, out of the washer – into the dryer – out of the dryer – then folding them.  Standing in one spot is hard too, which makes cooking and doing dishes a painful and/or fatiguing experience.

My sweet dog, a great insect hunter, barely brushed against my femur bone when I lied down after my chores and it felt like I was kicked in an already bruised spot.  Fibromyalgia pain sometimes feels like my whole body is bruised.

My insect hunter, along with our other 4-legged relative, have been lying as close to my body as they can get over the past two weeks since I fell.  They’ve literally had me locked down on the sofa a couple of times.  The big one lying across my feet and the little one, only 45 pounds, likes to get anywhere she can and if that means on top of a leg or an arm, then that is where she gets.

Last night, after my day of chores, I woke up about 9pm on the sofa.  Both dogs around me.  My body was hurting all over.  Moving was a struggle.  I budged one of the dogs and she didn’t move.  They were sleeping good.

I had overdone it with the laundry for sure!  I’m not very good at giving in to rest.  I truly needed to have that as my top priority.

By the end of today I cried some.  I had walked the dogs.  Not as far as they needed to be walked, but it was nice and we got a little sunshine.  I let them smell where their little noses wanted to go.  Lots of people just walk their dogs, but I let mine stop and smell.  I once read where it’s good for a dog’s olfactory system to smell things every day.  That made sense to me and I like things that make sense.

Dogs have what the native Americans call good medicine.  Their medicine is loyalty.  They give.  This is what they do.  They give.  They are wonderful nurses!

Pain is stressful.  It is tiring.  Living with it all the time is depressing.  It just is.

“How often do you wake up in pain?”  My nurse’s question lingers in my mind.

How often is too often?


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