Posts Tagged ‘living with 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”

Advertisements

Fibromyalgia, Attitudes and Acceptance

The Buggy Ride

Find Something Fun to Do

Fibromyalgia, as with any serious and chronic illness, can drastically alter your life.  Mine has certainly changed.

I had a business planting flower gardens to attract butterflies, which I totally loved.  Being a butterfly (and hummingbird) gardener was a big part of my identity.  There were many things I identified with and didn’t know how much until I couldn’t do those things anymore.

I remember when physical pain first started to concern me.   I would go out to my garden every day to do something.  One day I noticed how stiff my joints were.  I bent over and felt pain in my hips.  Then it started hurting in my ankles.  It was a new type of pain that I had never experienced before.

I’d been bitten by a little deer tick earlier that summer.  Little did I know this might change my life.

One doctor said I might have fibromyalgia, even though hardly anyone talked about the condition at the time.  It was nearly a foreign word.

Due to inadequate health care where I was living, I didn’t get to see a specialist.

I had dealt with arduous episodes depression in the past.  I had already in many ways, gone through a process of elimination as to what I identified with in life.  I stopped my gardening business and later went back to college part-time.

I moved to a metropolitan area after the tick bite that summer when the joint pain had started.  I believed the health care would be better and I think it has been.

I was bitten by another tick in 2005 and I was infected with Rocky Mountain Spotted Fever.

The doctors diagnosed me with Chronic Fatigue Syndrome and later, fibromyalgia as well.  By 2006 my life had turned upside down and illness defined every moment I lived.

Just about everything in my life has changed.

I can’t imagine, not as I write, what kind of job I could hold down with the levels of fatigue, brain fog and pain I’m living with.

I certainly can’t plant gardens anymore.

My hobbies are less active. My walks are slower.  I let my dogs walk me more, instead of me walking them for my cardiovascular workout the way I did before illness.  We go slower and stop more often.

Time is different too.  I can’t plan for events like I did before, which means I miss out on many things I once enjoyed doing.  I don’t know if I’ll be in pain two weeks from now or even tomorrow.  I could wake up so tired tomorrow morning that brushing my teeth will feel like I’m climbing a mountain.

I am grateful to receive disability benefits. I have health insurance.  It’s pretty hard making it on a low income.

Some people look down on those of us who receive disability benefits.  People complain about their taxes, but I pay taxes too.  Every day in some way I pay.

If a person can walk and talk then some people accuse her or him of being lazy, enjoying sitting home, doing nothing;  all just to get, “a check.”

The monthly income from disability benefits is important, but the health benefits and housing opportunities are a crucial part of disability benefits.

I was once a firefighter too.  Part of my identity had always been that I was physically very strong.  I was proud of this and enjoyed recreational activities, especially while raising my son.

Another part of my identity was being able to handle a lot of responsibility.  I was a single mother who worked hard and I burned the candle at both ends.

An expert in fibromyalgia told me this is the case with many people with this condition.  The majority of patients, he said, never were the kind of folks who sat around all day doing nothing.  Just the opposite for most of us.  We were athletic and go-getters.

I grew up in a very orderly and clean house, which is how I prefer things, but that’s one of those things that changes — preferences.  I’ve had to give up many of my preferences.

I hear all kinds of remarks from people who don’t understand what they can’t see.  I learned from having depression that having an invisible illness, such as fibromyalgia brings stigma and misunderstanding.  Many people don’t believe what they can’t see.

People say the weirdest things.

“I work in my yard (all day) because I have to.”

“I have to work everyday because I don’t have a choice.”

I stopped working because I didn’t have a choice.

“I wish I could get paid for feeling bad,” a neighbor told me.

“All you do is suck air,” a close relative remarked when learned that I was receiving disability benefits.

“You just get worse and worse don’t you.”  (Same relative).

“You sure do stay sick a lot.”  Lots of people have said that to me over the years.

Some people mock fibromyalgia.  Most people have no idea what it is.

Those of us suffering with invisible illnesses know that these attitudes and remarks are ignorant and not true, but they can still hurt.  Not only do they hurt, but they also cause us to withdraw into isolation.  We become alienated from society, our community and for some of us, from our family.

People with fibromyalgia often talk about having good days.  This means we have days when we wake up with some energy and less pain.  We can do more on these good days, which causes some people to think we’re faking illness.  If they see us on a good day, then we get accused of falsely claiming illness or disability to get out of work.

We’ve all heard people say, “You look just fine.”

A former doctor of mine once, during a frustrated conversation about pain, asked, “Where do you hurt?”

It was more of a statement than it was a question.  I didn’t know what to say.

“Well, my nose doesn’t hurt,” I answered.

She once referred me to a specialist for a digestive problem.  He was horrible!  He asked about the fibromyalgia, and then depression.  He was determined to believe that any problem I had, even the one I was there for, which was the result of an infectious virus, was all in my head; not neurological but psychological.

The doctor had suggested I go see the fibromyalgia specialist who had moved away.

“You look perfectly capable of driving four or five hours to me,” he said.  He failed to realize that I would have to go see the doctor and drive back home!

He continued and asked, “Did you walk here from the parking lot?”

“Yes,” I said, trying not to cry, but the tears were coming.

“Well, then you could drive four hours if you walked from the parking deck, and why are you crying?”

I had forgotten that I had instead ridden the minibus to the front door of the hospital from the parking lot.

“Why are you crying?” he asked again, sarcastically.

I told him I was sick, in pain, weak and tired.

I chose to change family doctors, never to see that specialist again and, my life has been much better ever since.

My current family physician understands fibromyalgia is a complex and painful condition.  He did suggest that I make a trip to the fibromyalgia specialist, but only when I was able.

I was finally able to go see the doctor.  I told him that my family physician wanted his advice.  He said to tell him he was doing the right thing by treating my pain.

He reminded me that it isn’t my fault that drugs, such as Lyrica and Cymbalta, made me sick.  Some patients cannot handle those drugs.  I’m one of them.  Some patients need tried and true pain medication, for pain.  Perhaps that is a little too simple for some doctors.

The specialist also said a patient should not be expected to live in pain when there is medication available to treat it.  He said it was neglect when doctors choose not to treat pain.

I told him about the remarks from my former doctors and nurses.  He said to stay away from those people adding with a compassionate tone and a bit of humor, “They are bad for fibromyalgia patients.”

He was a great doctor!

Even though we know more about fibromyalgia now than we did only a few years ago, there are still plenty of doctors and other medical professionals who will say just about anything other than, fibromyalgia hurts!

They’ll say things like, “It’s a label you do not want.”  They ought to say it’s a serious illness you do not want!

We’ve most likely all heard the phrase, “It’s a trash can diagnosis.”

I think many people do get wrongly diagnosed.  I’ve met a couple of people who said things like, “I had fibromyalgia for about three months.” Thinking

It’s hard to let go of all the things I used to love doing.  It’s hard accepting chronic illness.  It’s harder hearing hurtful remarks from family.

I have a few things I enjoy doing.  I started this blog, which I do so enjoy.

I love living with dogs.  They take me for walks and help me get through many hard times.

I have a “magic bike” and though I can’t ride it up hills or too far, it’s great fun feeling the wind on my face.  It reminds me of myself.

I hope if you or someone you love are living with chronic illnesses and conditions, that you can find something to do that makes your life easier and more meaningful.

Thanks for visiting Dogkisses’s blog.


dogkissesthat's a mighty cute dog!dogs never accuse you of faking anything