Archive for the ‘fibromyalgia’ Category

A Holiday Season for the Birds

“We missed you at the dinner,” my mother said.

“I missed being there,” I replied, sincerely.

We let the sadness sit in silence for a moment.

I’ve missed so many important occasions over the past decade.

Family reunions, weddings, birthdays, baby showers and this year, our Christmas gathering, have all happened without me.

Mother always tells me who showed up and gives me bits of updates on my loved ones.  Loved ones I’ve lost contact with, except through photos or indirect stories.

I’m trying not to let things get me down this holiday season, but so far, it is a huge challenge.

Not only am I in more pain from fibromyalgia and a few new ailments too, my son and I are not getting along.  It’s a double dose of holiday grief!

While talking with Mother about the Christmas gathering that I wasn’t able to attend, I immediately felt my heart-strings pull.  My efforts to be positive seemed to pay off because right away I decided to try and take joy in her account of the gathering.  I was surprised when soon I was smiling, as I imagined one of my great nieces bringing one of her cousins five wrapped presents.

“I don’t know if she got the other ones anything, but she sure had five,” Mother said, with that pure joy a Great-Grandmother has.  “She had every one of them wrapped too,” she added with a little laugh.

After a few minutes into the conversation, I walked to the window where I could see a flock of Robins in the yard. They love the grassy lawn where I live and they are spectacular to see!  They always seem to come when the light shows their silhouettes under the Sycamore tree.  Many of them move toward my door, and I get to see them up close and personal as they lean in towards the ground, turning their heads slightly, listening for earthworms.

Robin listening for worms

The Robin Listens

“Hey Mother!  The Robins are here!”

I’ve told her about the Robins before.

Amidst the flock were other birds about the same size as Robins, but with black with golden stripes.  One or two had iridescent blue heads, so perhaps they were young Common Grackles.

Sometimes, when I mention the birds in my yard over the phone to people, they’re silent for a moment afterward.  I always wonder if they think I’m making up these tales of many birds!

Mother was quiet for a moment, but then she remarked that I should, “send a photo to that wildlife magazine.”

I wish I could.  I wish I could, if for no other reason than to make her proud.  She would be happy to see one of my photos in a magazine.

I’m in pain and can’t sit long enough to complete even the most simplest of photo projects.

“Now,” I started telling my bird tales again, “there are Black-capped Chickadees, two or three bluejay, some Orioles, and the Hawk has landed on the ground!”

As if that wasn’t enough, a flock of Cardinals were perched on the bushes by the treeline!

“It’s a winged-oasis out there!” I told Mother.  “It’s so beautiful!”

I didn’t have the energy to go outside to take a photo.  At least, not yet.

I was happy to see the pretty winged visitors, as always, but when I’m feeling unusually blue, I am especially grateful because the beauty and life they bring lifts a part of my spirit every time.

I sensed my mother knew, or somehow, she could feel what I saw.

Mother and I have always had a connection on a level other than this physical one that we can see and understand.

Our talk ended when my son called.  “I hope he’ll stay and have the chocolate croissants with me,” I remarked to Mother.

He’s in the habit of taking food that I cooked to his apartment to eat.  He won’t visit me at home or talk to me much lately.

The hawk was still on the ground when my son arrived.  A neighbor walked by and we each watched the bird for a few minutes.

He was excited over the beautiful pastries and gave me a hug, thanking me for baking them, but he took his croissants and headed back home.  I was disappointed, but at least I knew he would enjoy them and that gave me comfort.

Practicing gratitude helps me get through hard times, even if the feeling only last for a little while.  I need to remember the better times and keep hope alive.

I’m glad for the ability to enjoy the natural world around me.  The wild ones keep coming back, so I have plenty of chances to take in nature’s beauty!

The hawk was still in the yard when my son left, but was perched on the electric wires.

I reached for my Canon!

The Red-shouldered hawk and that streak of beautiful Carolina sky!

Getting closer to the red-shouldered hawk

“How close are you going to get?”

Red-shouldered hawk perched on wire in backyard

“That’s Close Enough.”

Thank you for visiting my blog, dogkisses.

Peace and Happy Holidays!

Your blogger, Michelle.

One pill ~~ One day

lovely image of dandelions and blue sky“dent de lion and blue skies and wishing” 

PHOTO CREDIT: VIRGINIA SANDERSON via Flickr

In the back of my mind was an awareness that my energy was not only temporary, which I’m used to, but was induced by medication.  It was an odd feeling. 

I was temporarily able-bodied.  An inner voice kept reminding me that the clock was ticking.  I didn’t want to remember that I would have to go back to my life of being too tired to visit my family again any time soon.  I tried not to think about where my energy was coming from.  I’ve taken the medication before and always had this same experience.

For the most part, I managed to keep my thoughts positive and be grateful for the time with my mother and one of my sisters.

We had a very nice visit and ate home-cooked hamburgers at a lovely little country restaurant.   I got to see my mother’s beautiful and prolific flower garden.  I’d feared I wouldn’t get to see it at all this year.  Many times I’ve heard her say, “I wish you could see the…,” and she’ll mention whatever is blooming.

I didn’t tell my sister that a little white pill was the fuel I was running on.  I did however, end up telling my mother before I left, which I later regretted. 

I didn’t have to tell her that fatigue was disabling me.  I didn’t have to tell her that I had to take medication for my body and brain to work that day, but I did. 

I had wanted to spare them the details of how hard it is to live with pain and severe fatigue every single day.  Had I failed, I wondered on my way home.

I guess I also wanted to let somebody know the truth.  For some reason, I needed somebody to know that me making the trip was hard.  Plus, my mother is nearly psychic.  If I don’t tell her, it isn’t like she doesn’t know, which she reminds me of from time to time.

“You look so good,” my sister had said shortly after I arrived.  “Your eyes are clear.  You really look good,” she added, with a pleased look about her.

Part of me wanted to tell her that I was running on medication and how underneath what she saw, was a completely exhausted human being, but I didn’t.  I didn’t want to disappoint her.  I love my sister and it warmed my heart knowing she was enjoying the bit of time, when her little sister looked okay. 

I wished in that moment that I could give this to my family more often.  If my looking well made her happy, then I thought it best not to spoil the moment.  I did what my seventh grade teacher once told me to do if someone gave me a compliment.  I said thank you.  Nothing more. 

I’m just too dang tired to do things.  Too tired to think or make decisions.  Too tired to talk some of the time.  Too tired to clean or cook.  Too tired to go anywhere, like the grocery store.

I took the little white pill and had a good day. 

I choose not to take the medication very often because anything that can make this body get up and go, while it feels like I’ve been hit and run over by an eighteen-wheeler, well… I guess it scares me.

Thanks for visiting Dogkisses’s Blog!  Feel free to leave a comment.  Emails are never published. 

Thanks to Flickr member and professional photographer, Virginia Sanderson,  for her absolutely beautiful images!  I’m not a photographer and don’t speak their language, but I especially love the different textures she creates.   I encourage you to check out her photostream.


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In all the fog, I write…

Thunder beings and Brain Fog

The Thunder Beings have roared and a hard rain is falling.  I sure am glad to be home.  I like being home with my dogs during a storm.  I also like knowing that as I write, my family are in safe places.   Shortly, I’ll be snuggling up with my furry family to watch a movie.  I can’t tell you which movie because I forgot the name of it, which brings me to the heart of this blog post.

I basically wanted to say hello to my blogging friends and readers.

I miss my blog.  I especially miss being able to think clearly enough to express myself through writing.

Normally, I can sit down and write ten pages about something and even though it might need editing, I’m able to communicate what is on my mind.  Lately, this is not the case.  I have a lot on my mind, much of which I’d like to write about in this blog, but I am simply too tired.   I’m also in a lot of pain.

I began this post last night and wanted to publish it while the Thunder Beings were here.  I finished it, which amazed me, but I couldn’t keep enough mental energy to tag it or put it in a category.

The Thunder Beings came back tonight just as I sat down in another attempt to write something that makes sense.  Another hard rain fell.

I don’t know who came up with the term, “brain fog,” but the condition is well understood by those of us who have Chronic Fatigue Syndrome and/or fibromyalgia.

Brain fog attempts to describe a medical mental fatigue that robs us of our normal cognitive skills and abilities.  For the past six months I’ve battled this fog consistently.  Normally, the condition isn’t this persistent and instead comes and goes, giving me times when I can still think.

Writing is hard when this is happening and I usually don’t even try.  I forget my words and have to use the dictionary constantly.  I can’t spell words I’ve spelled since elementary school.  My sentences are choppy and things aren’t flowing.

Brain fog can make a person nearly incapable of verbal responses.  It can have an effect on a person’s speech.  Words might get disordered in a sentence or we use a word that sounds like the one we are intending to say.

I know the words I’m looking for when I lose them.  I can describe the meaning, sometimes the sound or the first letter.  Written words I’ve known since I was a child look unfamiliar.

Mostly I’m tired and sleepy, but I can’t stay asleep long enough for my body to restore itself.  I’m half awake and half asleep.  It isn’t a good place to act from.

My body is as tired as my brain is.  Moving around is hard.  Bending over takes tremendous energy.  I can’t keep up with my chores and that stresses me out.

I’ve missed deadlines.  Many of my obligations in life are compromised.  I don’t get to go visit my family.  I’m also getting a bit confused and my short-term memory is shot.

The fatigue alone is completely overwhelming.  Add to that widespread ongoing pain in the nerves, muscles and deep in the bones and it is one mighty difficult condition!

Life goes on though.  It doesn’t stop for me to be sick or it seems, for me to get proper rest, but then maybe I don’t know how to rest.  Maybe I forgot.

Much of the time, I feel stressed.

I have an adult son, whom I love with all my heart.  He has challenges that I haven’t learned how to accept in a way that doesn’t cause me grief and anxiety.  I believe that accepting things the way they are is the best place to start when you want to change something, but honestly, I don’t feel like I’m doing a good job at this with mine or my son’s circumstances.

Being unwell causes me to feel like I’m failing my son, the other members in my family, including my dogs and a community.  I can’t say that I have the latter, but if I did belong to a community, where would I fit in I wonder.

When I have brain fog, I don’t feel like I have anything to offer.  I do love my family and friends, so I guess love is the one thing I still have to give, no matter what.

I worry about what is happening in this country.  The cuts in our system are scary to me on a personal level.

Being a disabled American makes me feel like a misfit.  The taxpayer’s enemy.  I represent to some Americans the reason our country is in such bad shape.  Somebody, “living for free.”  A flaw in an otherwise well-functioning system.

The doctor wonders what is depressing me!

Chronic illness impacts my view of myself and the world.  It’s a view that’s been filtered through pain, mental fog and bewildering fatigue, along with a very long decade of chronic stress.

I have the dogs to keep things real.  Plus, of course, I love them and think they’re the greatest little creatures to have ever lived on the planet!

One of my dogs had to go out a little while ago.  I was lying on the sofa.  He came over and sat there beside me, patiently waiting.

I felt like a million pounds of sand was lying on top of my body and it hurt.  After about eight minutes, which seemed like forever, I got up.

Putting his collar on him, I just happened to look at the sofa where I had tried to rest.  I saw the pain.  I saw the fatigue.

I didn’t want to ever lie on that sofa again.  I hurt when I lie down.  For a moment, the difference between the way I felt standing and the way I had felt lying down was somewhat mentally shocking.

I feel some better when I get up, but it isn’t long before I’m completely exhausted and must lie down again.

My dogs continue to be good for my health.  They keep me from never getting off that sofa.  They need me and I need them.

They took me outside after the rain stopped tonight.  I needed a short little walk and some fresh air.  They always know this.

Thanks for visiting Dogkisses’s blog.

Image via drburtoni’s photostream, Flickr.

Pain, Fatigue and Dogs

dogs know how to fight fatigue, just look...

Sometimes I think I forget or am in denial of having Chronic Fatigue Syndrome and Fibromyalgia.  I go and go and go and then I crash.  I try to keep a balance, but some days life demands things and I do more than I should.  That’s the way it’s been lately.

I have a pretty bad infected foot, which I thought was fibromyalgia pain, until I pulled my little toe away to look.  I saw what was NOT fibromyalgia.

A month or so ago, I bought a pair of boots.  I wore them around the house, just for fun, and also to take the dogs out in the mornings.  My foot began hurting after several days.  I’ve had foot pain before after wearing a new pair of shoes, which is why I didn’t do any close inspections of my foot, especially beside my little toe.

Well, it sure didn’t look good so off to my doctor I went.  He gave me antibiotics and cream, made a joke about me wearing boots around the house asking if I thought someone was going to come by with a camera and did I want to be ready.  Very funny while my foot was swollen and infected, but I’m used to him.  I like him.  I don’t like that sometimes I think he lets things go, like my foot!

It only got worse.  A round of antibiotics started to help and here’s where I went wrong, I guess.  I missed a few doses.  Now, I have a hole in my foot.  I went back to the doctor.

“Do you think I need some more antibiotics?” I asked him.

“No,” he responded confidently.  I would like to send you to a podiatrist with your permission.”

Well, duh.

So, off I went to the fancy foot doctor who didn’t have any manners at all.  I don’t know where he’s from, but I bet it ain’t North Carolina.

I told him how I had thought it was fibromyalgia for the first several days of pain.  Maybe that’s why he had a dismissive attitude towards me, but then I am so tired of trying to figure out why people who act weird act that way.

He kept saying what I hadn’t done or what I was doing wrong.

He sent me to the x-ray room where they took several images of my foot.  Fortunately, those looked good.

“How long have you not been taking antibiotics?” he asked when I returned.

“Since I finished the ones my doctor gave me,” I told him.

“You do know you have a hole in your foot don’t you?”

I told him that I most certainly did.

“I’ve been to the doctor twice already.  I would have gone to the emergency room if I hadn’t known I was coming here.”

“You’re wearing closed shoes first of all,” he said in a tone that I didn’t like.

It was cold outside.  My family doctor had complimented my shoes.  Why had he not put me on another antibiotic I wondered.

The foot doctor explained how serious the infection is because of where it is and I’m too tired to describe it, but I took heed!  It can go up and into my leg if it gets worse.  He says if I do everything he told me to do then it should be getting well within a week.

So far so good.  Ten days of a very strong antibiotic.

I’d told my family doctor how my son said I was going to lose my foot and later, my leg when he saw it getting worse.  The doctor joked again saying not to let him get near any knives.  From what the foot doctor said, my son wasn’t far off from being right.

The good news is that hopefully, the antibiotics, along with soaking it in vinegar water will heal it.  The soaks hurt like crazy.

I dislike antibiotics very much and this one is kicking me down like a sick dog.

Tiny love hereSpeaking of dogs, mine are once again being very good nurses.

Yesterday, when I finally returned from the hospital, I lied down and put my foot up.  I know they felt how stressed I was.

Our big guy, Tiny, (the cutie with the big head) whom I’m going to write about soon, well, he crawled up beside me on the sofa and lied down on barely enough space for his wide body and put his head on my belly.  That’s what he’s been doing for the past few months whenever I don’t feel good.  He lies there looking at me with his big beautiful hound dog eyes.  Yesterday, just for extras, he gave me a kiss.  He doesn’t give many.  I felt very special indeed.

My pretty little girl curled up at my feet in her soft ball of silky fur.  She is absolutely the softest dog I’ve ever petted in my life.  Absolutely!

Dogs Rule!!!

They were incredibly sweet with both of their heads resting on me and their eyes saying, “OH WE LOVE YOU!”

cooking for mom

I’m also grateful to my son for the many meals he has cooked for me lately. I’ve gained a few pounds, which is a very good thing.

However, he is staying with me and it is driving me a little nuts.  I’ll be glad when he wants to go back to his apartment.

Just the truth.

I’m going to give in to the fatigue for a little while, which means I’ll have to be alone.

I think I’ll finish a good novel I started weeks ago, The Accidental Tourist, by Anne Tyler.

I’m tired.  Too tired to think much.  I’ve been writing, but have nothing ready to click publish.

With that said, I’m offering a few links of interest I found today about pain.

I am here to tell anyone who suffers from pain each day, whose life is circumscribed and whose goals are slipping out of reach, that you are at last being heard. We are in a pain renaissance.”

Read more: “The End of Ouch” –TIME


–“an adaptive mechanism in which severe pain in one area of the body inhibits pain in another is impaired among women with fibromyalgia. Normally, this system works as a check on the amount of pain the brain can handle; if your arm is sore and someone steps hard on your toe, your arm will temporarily feel better as all of your brain’s pain attention is focused on the new insult. In chronic-pain patients, this mechanism is faulty or nonexistent.”

image of sleeping dog via OLX, Tiredness Disorders



we love mom
Thanks for visiting Dogkisses’s blog.


Breathe out…

Sometimes No Sometimes YesShe’s coming and it won’t take her long to get here.  I have about an hour left.  I didn’t have the courage to say no.

She’s my mother and I love her.  She surprised me when she called to say she was packing.  My gut screamed out at me to say no, but I couldn’t.  I tried.  I called her back three times.

“Are you sure you want to come?” I asked her.

“Yes.  Are you sure you want me to come?” she responded.

“Well, I’m sick,” I told her.  “I’m not in the best mood either you know.”

She says she understands and as much as a part of me wants to say no, obviously another part is saying yes.

I have a hard time saying no, which is why I love the icon my friend, Leslie, at IconDoIt, the blog, created for me.  The image was the top rated media image I used in my blog in 2010.

I love the “No” icon and saying no in 2009 saved my life.

I need to print this icon on a very large sheet of paper and hang it above my desk, which sits in the center of my small home.

“If truth be known,” a phrase my mother uses often, I need to be in a hospital or at least I need a good nurse.

I need a break from the many obligations in my life.  I need sleep.  I need an appetite.  I need more time for me.

I keep breathing out, then in and slowly out again, but I’m still anxious.  My home is cluttered.  I haven’t washed my dishes or vacuumed.  I don’t think my mother has ever seen my place in this condition.  I don’t think she’s ever seen me as wore out as I am now.  She may be shocked at my dishes in the sink and I’m not sure if she will see how very tired I really am.

I wish she could understand how I feel but at the same time I don’t want her to know how sick I am.

Breathe out…

2010 was a hard year and even though my spirit has felt lighter this year my body has not.  I’ve been sick.

About six weeks ago I got a terrible case of bronchitis.  It felt like the flu.  I thought it went away, but the fatigue has come back and hit hard.

I keep getting confused and sometimes the room spins.  I keep crying too, but I’m not sure what that’s about.  Out of the blue come upheavals of emotions and tears.

My pain is worse.  I’m sick on my stomach and food is the last thing I want.  I’m angry.  I’m angry that I feel so bad and have for so long.

I finally called my doctor.  I doubt if he can help me and as I write that thought, the tears want to come.  Maybe it’s because I’m so sick and I don’t know if anyone can help me.

I dread going to the doctor.  He’ll check my lungs to see if there are signs of pneumonia, which is what I’ve suspected.  I looked up the symptoms and have every one of them.

I don’t know why I’ve waited this long to ask for help.  I guess because when you have Chronic Fatigue Syndrome, it’s hard to know when you get a new illness or have a bug.  Depression can also keep you from seeking medical help when you need it.

I feel guilty for being sick.  I feel like a disappointment to my mother.  At least, I feel like it hurts her to see me sick and especially if I’m sad.  I don’t want to hurt her.

I also feel very much misunderstood, or rather that my illness(es) are misunderstood.

“If you want to sleep while I’m there,” my mother said the third time I called her back, “then just go lie down.”

I wish I could sleep.  I would.

Most people I know don’t understand that fibromyalgia is a sleep disorder.  They think if you are fatigued that you can lie down, go to sleep and all is good.  They are wrong.

Most people I know also don’t understand the reality of Chronic Fatigue Syndrome any better than they do fibromyalgia.  If only they would read blogs by people who are living with and writing about these insidious illnesses.

If we could sleep and sleep well for more than a few hours then we might feel better.  Maybe.

I’m so tired.  I hope my mother is calm in her mind and spirit.  That’s about the best gift she could give me.   I know she’ll start doing chores when she gets here but this is the thing, it will require my help.

I can barely sit here and write, but I thought I better because I don’t know how long she’ll be here and she gets a little jealous of my computer.  Sometimes our visits are emotionally draining on me.

I said yes because I love my mother.  I know she loves me.  I know too that I won’t always have her here.

I said yes.  I sure hope I did the right thing.

I also hope to meet my weekly challenge for PostAWeek, which for me is on Saturday.

OMG!  How did she make it that fast?  OMG!  She is here!

Breathe out…

dogkisses.

From the patient in pain

do butterflies always sleep alone...

“I really came to talk about my pain,” I told my family doctor about a week ago.  Now I wish I hadn’t said it.

I had put off having this conversation for the past few months.  I’ve been on the same dosage of one pain medication for three years and I don’t want that to change.

After two serious injuries from accidents in October, 2009 and January, 2010, I had to use extra medication, which is a shorter acting drug.  I was able to stop taking it after a while, but the injuries exacerbated fibromyalgia pain and as a result, I had to start taking it again for breakthrough pain.

My doctor said about six months ago that it was great that I’ve maintained well on the initial dosage of the regular pain medication.  I’ve always felt good about this too, and wasn’t too concerned about needing breakthrough medication.  I thought that I was having a flare up and things would calm back down.

A few months ago my pain levels began to increase more regularly, and with that along came anxiety, in part due to my resistance to taking the medication he had given me for times when the pain breaks through my normal threshold.

I was breaking the pills in half afraid to take the prescribed amount, which is up to two pills per day, but this is only for days when the pain has increased.  I think I may have dragged out the pain by not taking enough to knock the pain out sooner.  I should have just given in and said okay, today is a painful day.  I’ll take the medication even if I have to rest in bed.  Instead, I’ve taken a little of it and kept on going.

Of course last week in my doctor’s office I failed to communicate this.

Since having gone on an analgesic medication for fibromyalgia pain, I’ve felt a particular bond with the doctor who treats me.

He became our family doctor in 2003 when my son and I moved to the area.  We both like this doctor very much.   He has a wonderful bedside manner.

I left his practice for a while, but when Tramadol stopped working and the doctor I was seeing had communicated that she was not happy about starting me on a narcotic pain reliever, I went back to my original doctor’s practice.

I told him he had to help me because I simply couldn’t live in the pain I was experiencing, which was the truth.

I’ve seen him ever since.  He isn’t scared of treating my pain, although he did ask me to go to see a specialist, the Rheumatologist who had diagnosed me with, “Classic Fibromyalgia,” but had moved almost four hours away from where I live.   I eventually made it for a visit to that doctor.

I told the doctor why I had come to see him, which was that my family doctor wanted his advice on treating my pain.  He said tell your doctor that he is doing the right thing to treat your pain.  So I did.

Now, three years later, I’ve gone into my doctor’s office and spoken of my pain.

“I think we need an expert,” he said and I’ve been upset ever since.

I don’t want an expert.  I’m sick of experts.  I don’t know why I feel this way.  I’d like to see an expert for a few problems I have, but not one for pain.   For some reason, I’m repelled by the thought.  I’m both scared and angry.

“I don’t want to go to a pain clinic,” I told him. ” I’ve heard horror stories about how they treat their patients.”

“This is a good group of people,” he said.  I could tell by the way he spoke of them that he holds them in high regard.  “They come here occasionally and give talks.”

I imagined these talks.  I imagined the pharmaceutical catering service having brought in everything you could dream of for lunch all in one sitting.  Am I cynical?  I never wanted to be.

“I’m not sending you away,” he tried to ease my anxiety, which didn’t work.  It’s the fear that gives me anxiety.  Fear of not being believed.

“I’m scared they will tell you not to give me medication,” I told my doctor.

I’ve been disbelieved, judged, accused, and criticized both inside and outside the medical community since I began having chronic severe pain, but never from this doctor who I presently see.  Having a doctor who believes me and understands that I can’t take Lyrica, which is commonly used for fibromyalgia pain these days, nor can I tolerate antidepressants, also used for pain, has been and continues to mean a great deal to me.

I also very much dislike it when a doctor thinks depression is the cause of any pain I may have.  I don’t like it when tears confirm this.  I cry easily and often my tears in front of a doctor are a mere release of fatigue from my having showered, dressed, driven and walked into his or her office.

I’ve walked out of two different specialist’s offices for other illnesses extremely depressed from the doctors blaming the conditions I was there to get help with on depression, while it was the condition causing me to get depressed.   Ironically, both doctors were not practitioners but teaching fellows.  Personally, I think they were better at teaching medicine than at practicing.

I knew when I went back to the doctor I see now, which was over three years ago, that he would believe me when I said I was in pain, which is why I went back.  Why would I want to go anywhere else after my experiences of having seen doctors straight out of a horror movie?

I don’t want to take a chance on having someone tell me my pain isn’t real, or that I can meditate it away, or who wants to try some novel drug on me, and the worst part, take me on a trip to my life story.  Been there and done that.

I don’t feel like telling strangers my story anymore, especially if it results in me being told that the pain I live with is either psychosomatic or a result of depression.

I once had parasites that came from a river where I unwisely washed my dishes in during a long camping trip.  I lost twenty pounds the first month.  I was in constant severe pain and very sick.  Every time I ate I had to find someone to take me to the emergency room.  I had a quack for a family doctor.  He liked listening to my heart-rate more than anything because he acted like he was going to faint at the site of breasts, even minute ones.

“Many women your age with your history have lower abdominal issues,” he would say as I was lying on one of his office beds screaming, bent over in the most severe pain I’d ever experienced.  He would give me a Valium and say, “You’re not dying.”  He’d walk away telling me I could lie there as long as I needed to.

I wish I had sued his pants off.  Finally, after about six weeks, a homeopathic doctor suggested I had Giardia infection.  I remembered the many horses having crossed the river by my campsite.

She said she could give me charcoal pills, but that I would be sick for a long time.  I had already been sick a long time.  I told somebody and they said you need a real doctor.  The next day a real doctor gave me Flagyl.  Miracle pills that saved my life.  In two days I was feeling better.

I got a bill from the quack for almost five-hundred dollars.  Well, of course I used what writing skills I had and told him exactly what he could do with his bill.  I never heard from him again.

I’ve had my bad days with doctors.

I wish I hadn’t said anything about pain to my doctor.  I’m supposed to see this expert tomorrow.  I already don’t like her.   I feel angry towards a doctor I’ve never met because of the horror doctors I’ve met in the past.  I’m fairly certain I’m going to call and cancel.  It’s my pain.   It’s my life.  It’s my choice.  I hope.

I’m irritated with my doctor for not stopping to hear me out, but maybe he did.  Maybe he heard what I didn’t.  I’m confused.  Did I ask for what I got?

He did stop before sending the email asking if I wanted to go ahead with the appointment.

I obviously said yes when I wanted to say no because now I have myself an appointment.  The pain doctor’s clinic has called three or four times, which I was ignoring but then accidentally answered — and confirmed! That made me mad at myself.  I did tell the person who called that I might have to cancel.  They sent me a package in the mail.  All a waste of time, money and paper I thought.

Why couldn’t my doctor just listen?  Why couldn’t I stand my ground?

“I went camping,” I had told him.   “I did a lot that I shouldn’t have done.  I know this added to the increased pain and I’m under more stress,” I said, realizing the part about the stress may not seem like anything new to him.

He did hear me.  When I said I lifted heavy logs of locust wood for three days and nights he turned from his computer, where he was typing that darn referral, and with somewhat of a surprised look he remarked, “You did?”

I reminded him that I didn’t have the breakthrough medication I needed during that trip and that I had gone anyway.

“Are you asking for more or less of one of your medications?” he responded to those remarks.

“Neither,” I said, which was true.  I was near tears,  but I stopped myself from crying.  His referral is exactly the reason I haven’t told him my pain has increased.

“I”m just trying to tell you why my pain may have increased.”

I don’t think he responded to that so I said again, “I kind of don’t want to go.”

“It isn’t punitive,” he said.  “I’d like to know if they have any ideas.  I really like them,” he added.

He has always been a good doctor and I’ve trusted his referrals.  He’s actually pretty conservative in making them and sometimes I must ask for one if I feel like I need a specialist.  This time however, I honestly cannot say that I trust this referral.  I’m scared.  I’m scared of pain specialists.

I looked at the expert’s website.  She’s an anesthesiologist at a well-respected teaching hospital.  There is mention of fibromyalgia in her area of treatment, but it’s not her specialty.  The clinic offers acupuncture and biofeedback.  I feel sure they do not offer this to Medicare/Medicaid patients, which I am.

I’ve been to other speciality clinics.  Some of them are pretty fancy places.   My insurance will pay for a one-time consultation for certain health issues but I don’t get much out of this.  One visit and bye-bye.

The experts I’ve seen at these clinics have recommended acupuncture, which was a part of their services.  I’ve responded well to acupuncture in the past and very much wish I could have ongoing treatments, but it’s expensive and I can’t afford it.  I’ve received prescriptions for it from the doctors at these clinics, even though they know my insurance doesn’t cover it and I can’t afford it.

I don’t want another experience of walking into an upscale medical clinic, with inviting photographs on the walls of people receiving massage or acupuncture, along with brochures for your reading pleasure about these wonderful treatments, while I’m well aware that I will not be able to access these services.   I’d rather stay home.

I especially don’t want to see a pain specialist, who might interrupt the good care I already have from my family doctor, which is one thing in my life I’m especially grateful for.  I feel like going to see a pain expert is like trying to fix something that isn’t broken.   Maybe it needs tweaking a bit, but not reconfigured.

I’m scared, confused and kind of irritated for feeling this way.

Perspectives on fibromyalgia

Центральная нервная система-Central nervous system

Image via Wikipedia

The first thing that comes to mind when I think about fibromyalgia is that it’s been a long road of pain and fatigue that gradually worsened over time.  I don’t fully understand when I hear that it isn’t a progressive illness or disease, since over the past seven years I’ve gone from saying ouch while bending over in the garden, to having many days (possibly years worth) of being completely debilitated by pain and fatigue.

Is it a disease or a syndrome?  Illness, disease or syndrome?  I think it may be all of those.

Fibromyalgia is a pain filled life changing experience.

Fibromyalgia is often misunderstood, stigmatized and people who suffer from it are wrongly judged.

Sometimes I feel like I understand what I’ve learned about fibromyalgia, particularly that it’s a central nervous system disorder, and other times, when I’m deep in the throws of severe pain or terrible fatigue, I question what I thought I understood.  During these times, I wonder if the doctors have missed a rare disorder or another disease more understood than fibromyalgia is.

Some days I fully accept it and other days I wonder if it even exist, and again, wonder if the doctors have simply missed something that would clearly explain all the pain, the fatigue and the myriad of other symptoms I have.

I’m afraid of fibromyalgia.  Not all the time but some of the time.  I’m afraid of getting older and adding an aging body to an already painful weak one.

I believe we are human.  I do not believe that pain, sickness, illness and diseases are a result of karma, sin or character issues.  I believe humans are susceptible to diseases because we are human.

Disease can be caused by chronic stress but this cause doesn’t make it any less real.

I believe fibromyalgia is a medical entity that causes great suffering and drastically changes lives.

Fibromyalgia is not the same for everyone.

Treatment for fibromyalgia is not the same for everyone.

The view that fibromyalgia is a central nervous system disorder, Central Sensitivity Syndrome, (CSS), makes the most sense to me.

The first time I heard about CSS was when I met with a Rheumatologist, Dr. John B. Winfield at UNC-Hospitals in Chapel Hill, North Carolina.  I had an appointment with him the day before he left his position and moved to the mountains.  I wouldn’t have been able to see him again anyway because UNC-Hospitals would not allow him to see a patient for fibromyalgia more than once.  (Politics…)  I don’t think this helped him help his patients.

As I write, UNC-Hospitals doesn’t have a doctor who specifically treats fibromyalgia.  They have the department of Rheumatology, but they refer fibromyalgia patients to a family physician who often refers the patient to a Rheumatologist.

My visit with Dr. John B. Winfield remains one of the best doctor’s visits I’ve ever had.  I spent over two hours with Dr. Winfield that day.  He told me I would see his research in a few years but at the time that seemed like forever.  Now I see his research.

Finally, I hear doctors, or at least mine, talk about CSS.  Finally.

“Central sensitivity syndromes: a new paradigm…” Yunus MB, (PubMed.gov)

Excerpts from an abstract summary of the article (above link) —

“Such terms as “medically unexplained symptoms,” “somatization,” “somatization disorder,” and “functional somatic syndromes” in the context of CSS should be abandoned. Given current scientific knowledge, the concept of disease-illness dualism has no rational basis and impedes proper patient-physician communication, resulting in poor patient care.

–“The disease-illness, as well as organic/non-organic dichotomy, should be rejected.”

After having caught up a bit on the latest articles, which I find to be tiring to my brain, I’m somewhat confused.

I understand that  Chronic Fatigue Syndrome is part of fibromyalgia.  I guess you can have one without the other, but I’m not sure.  I was diagnosed with CFS before fibromyalgia.

I had Lyme’s Disease in 2003, which caused my joints to protrude and hurt very badly.  They got better except bending over never did stop hurting.

I had Rocky Mountain Spotted Fever in 2005.  I didn’t get treatment for six or seven weeks. My wrists joints were protruding again.  I was severely ill. I was finally diagnosed and took Doxycycline.

The fatigue continued.  I began to have severe low back pain.  Neither went away.  I was referred to immunologists.  They said I had Post Infectious Disease Syndrome and wrote on my records that I have CFS as a result of RMSF.  They said the disease stayed in my system so long that it caused a systemic infection that could last, possibly, the rest of my life.

I saw Dr. John B. Winfield the next summer, in June, 2006, who diagnosed me with Classic Fibromyalgia.

He spent a lot of time with me, several hours, educating me about fibromyalgia and talking with me about how to live with the stigma around the diagnosis, particularly as it is considered an invisible illness.

I don’t know where to draw the line, or if there is one, between fibromyalgia and Chronic Fatigue Syndrome.

I have all the symptoms of fibromyalgia and all the symptoms of Chronic Fagtigue Syndrome.

I could benefit from another two hour visit with Dr. Winfield.  He did mention that me doing things like taking trips to the mountains, along with a few other activities I shared with him that I enjoy doing, would be good for fibromyalgia.

Update on August, 27, 2010 —

Please see the comments on this post for several excellent links (from George) for recent new findings/ research about Chronic Fatigue Syndrome.

Thank you George.