Posts Tagged ‘treatment for fibromyalgia’

I’m talking about Pain.

In the wee hours of the morning, around 3:30 am today, I woke up.

I was fatigued and had fallen asleep last night, forgetting to take my pain medication and my anxiety medication, both of which I need, the latter of which is for anxiety, but also manages a neurological disorder I have, an essential tremor.

I don’t remember the details of my waking in chronological order.  I remember having the thought that I should definitely update my will.  I remember being scared.  I was really scared.

The pain in my chest and lungs is what was the most scary I guess, but all of it was bad.  My entire body, once again, felt like it was on fire.  It’s more than fire though.  It’s more than a burning.  It’s so much more I don’t seem to have the words for it.

They call it fibromyalgia.  I wonder.  Sometimes I wonder what my doctor would do if I was his daughter.   He has three and often speaks of them.  He is a compassionate man and I like him.  So I’ve wondered this.

Would he take me to some fancy medical facility up north?  Could they help me?  I know he would pay for acupuncture treatments, which helps me tremendously, but I can’t afford them.  He once told me he would like to learn acupuncture himself.  I told him I needed him to keep on being my doctor instead of going off to acupuncture school.  He laughed.

But my good doctor was not here at 3:30 am when I woke up this morning nor was anyone else, except my dogs, my blessings from the universe.  They were here and their being here makes a big difference in my ability to remain sane in such a state as I found myself in this morning.

Not only was I in pain but the tremor was there.  My insides were shaking.  I was sweating a little.  The pain was so intense I had to lie there and get my breath enough to be able to get up and go take my medication.

I lied there for a few more minutes before getting up.  I guess I was in shock.  My lungs hurt when I breathed, which I could barely do.

I’ve been told that the pain I experience in my chest area and when I breathe is from fibromyalgia.  They tell me that the heart is a muscle, which I already know that, and talk about the connective tissue around the heart and lungs, but they have also told me it’s rare to have the kind of serious pain I have while breathing.

Without the medication I can’t breathe.  It hurts too bad.  This is scary and I don’t think the doctors are aware of how serious it is for me.  I guess I need to tell my doctor but what would I say?  He knows I live in pain.  He gives me medication.  Maybe I’m afraid he will say my pain is too much for him and would send me away.  Send me to some pain clinic where I’ll be a number and/or where they might not believe in fibromyalgia.

Yeah, I am scared.

The fibromyalgia doctor I saw twice said sometimes it does get into the lungs and that this is almost like a medical entity of it’s own.  Great I thought.

It’s scary because I think what if something happened?  I live alone and what if I forgot my medication and couldn’t get to it?  I have a phone and I would dial 911, but would they believe me if I told them I couldn’t breathe without my medication?

There is stigma around pain medication and medical professionals are not immune to it.

What would I say if I did dial 911?  I have fibromyalgia.  I can’t get to my medication.  I can’t breathe without it.

Would they think I’m a drug addict?  A hysterical woman?  A psychiatric case?  I wouldn’t be a “drug-seeker,” because I have the “drug.”

It took about thirty minutes for the medication to work.  I could breathe again.  I don’t remember now what all went through my mind during that time, other than thinking about updating my will, but I know a lot did.

It was a painful, scary and depressing experience, but it’s over…or is it?


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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 misunderstood.

my magic bike

“He said you are very sweet,” the physical therapist said during my assessment.  I missed some of her words, due to a language barrier, but I heard the last part of the sentence when she said, “but he said you have not shown much improvement.”

I felt insulted.  Waves of emotions swelled up inside of me.  I’m sure she did not intend to insult me but I felt it anyway.  I had improved! Wasn’t that in my records I wondered.

I’ve had treatment for fibromyalgia pain there twice.  The first time I went to the warm therapy pool for a couple of months and they are right, I did not “improve,” at least not in the way my insurance company wanted me too, which I guess meant that I was cured.  I did have a great couple of months but insurance companies do not count this as improvement.

The second time I went there for fibromyalgia pain was about six months ago. My therapist and I decided together to do dry-land therapy instead of aqua-therapy, even if it meant me tolerating a bit more pain for a while.

I began to see a pretty big difference in my level of pain around the fourth week of doing the exercises.  My therapist is great, especially because he is well read and current in his knowledge of fibromyalgia.  He does not believe in causing pain.  I like that.

As my pain level went down my mood went up.  I really liked that!  Suffering from depression all the time is depressing.  I began to feel hopeful, feeling like I had some control, like there was something I could do to make things better.

Deciding I was ready to do my exercises at home my therapist gave me pictures and the long rubber bands to take with me.  I did well for several weeks.  I did my exercises, got in time on my magic bicycle and of course walking my dogs.  I could see muscles forming on my somewhat stringy arms and legs.  I was getting stronger.

Then I had a setback in life.  A really hard setback.  One that caused me so much grief I stopped doing my exercises.  It didn’t take long before my pain level was rising and my muscles were disappearing on me once again.

But what about the months I did so much better I was thinking while I was in the physical therapy assessment the other day.  What about the fact that for a while, I did improve, which means that I can improve?

After talking with her a couple more minutes I realized she didn’t know why I was there, which was because I hurt my arm and shoulder when I fell off my magic bike on Halloween.  She thought I was there because of fibromyalgia, again.

I explained this to her but she asked me three times if the pain was from the bike fall and not fibromyalgia.  I wondered about that.  I thought me telling her one time, along with the fact that she had a referral from my family doctor as to why I was there ought to be enough.  Did she think I was making up the accident? I pulled up my sleeve so she could see the gash in my elbow, which apparently convinced her.

The other therapist had never sent me out of there in pain.  This woman did and I hurt for two straight days.  I felt like she did not believe I was in the amount of pain I was in.

Presently, I can only lift my arm halfway up from my side.  Doc says this is from the, “tendon adventure,” I went on.

Many things she asked me to do hurt.  My family doctor had examined me and discovered gently without causing me pain which tendon and ligament he believed to be the ones that went on the “adventure.”  Each time I said, “that hurts,” he stopped.  But the PT I saw would just look at me when I said that hurts as if she did not understand.

It was a frustrating experience.  I was upset when I got there because of the crazy guy I had a crazy relationship with.  She blamed my nervousness on fibromyalgia but I knew what was wrong with me.  It might make the fibromyalgia worse, in fact I’m sure being upset does, but it wasn’t fibromyalgia that had me so upset.

“You are nervous.  You can’t relax,” she kept saying as she held my arm in positions that were really hurting me.  Well, no shit!

Finally she said she would end the session with the machine that sends electrical stimulation to the nerves.  I’d had it on my neck and back before and never had been impressed but also never felt any pain so why not I thought.

That thing felt like knives stabbing in me!  I was surprised and so was she.  She also laughed just a little when my legs came up against my chest after she had turned it up a notch.  I however did not laugh!

I became more distressed.

I told her I wanted to have aqua-therapy again.  I knew my therapist would be in the pool.  I also asked her if she would consult with him.  I’d already decided I was not going to come back and have another session like that one.  She was nice and when she came back from talking to him she had papers for me to sign.  He had agreed with me on the no pain part and that the warm water exercises would be a better approach since I am in so much pain.

Thank God for the few good doctors.  Thank God for the few good medical professionals who study and keep up enough to know they cannot assume they fully understand fibromyalgia.  It is the doctors and other providers who realize this who are the best ones.

Medical professionals who think they understand and have all the answers regarding fibromyalgia, while the smartest scientists are still scratching their heads,  are the ones who I am leery of.

I didn’t like it when that physical therapist, even though she was nice, kept on blaming my upset that day and the pain in my arm on fibromyalgia.

“You have fibromyalgia,” she said, “so you cannot relax.”

I had a boyfriend who was a narcissist I thought to myself and that was why I couldn’t relax that day.   I had spoken to him only hours before!

She was also pulling my injured arms in ways that was causing pain, which was not causing me to feel relaxed.

I’ve had many things blamed on fibromyalgia that shouldn’t have been and had fibromyalgia used to explain other things that are not fibromyalgia.

It’s a crazy world sometimes!




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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My magic bell and fibromyalgia

with fibromyalgia injuries take longer to heal

intact, after the fall

My magic bell was the first thought I had after I hit the wet pavement.  Did it break I wondered?

As you can see from the picture here, it did not break!  Nor did my head which is good ’cause I didn’t have a helmet on.

“You know how it is with you.  Because of fibromyalgia when you get a localized injury it spreads to other areas,” my doctor said.

“Well, umm, how long do you think my back will hurt?”  I knew the question was one he couldn’t answer.  I don’t know why I asked. He just looked at me.  I don’t remember if he said anything.  I think he simply nodded his head to communicate that he didn’t have a clue.

It was my elbow that got cut open.  My shoulder hurt and my knee,  but after a few days the rest of my body began to hurt.  I was in a great deal of pain as I sat there with my family doctor.

I know you can’t see any bruises I told my doctor, but my body really does hurt.

With a tender tone that was much appreciated he said, “I believe you,” and I knew he did.  He believes me when I tell him I am in pain. This is a blessing when you have an illness that is not only misunderstood but also denied by some as being a true medical entity.

Fibromyalgia.  I think I am mad at this word!  This medical entity!  If I was superstitious or believed in demons possessing one’s body and soul, then I would sure be having an exorcism performed!  But I don’t believe in that, nor do I believe, at least in my rational mind, that I am being punished by God.

Having been brought up in the south with a strong Southern Baptist influence, I must admit that I do actually think and sometimes feel that I am being punished, which I believe is a direct result of what I learned about God and Jesus.

My grandmother told me that Jesus was watching me all the time and that he knew every single thing I did.  Well, that right there shaped and formed a large part of my world view.    I think this must get in a person’s brain forever, these things we learn as children.

When I am in severe pain or have been too fatigued to do anything for days on end, even think, sometimes I find myself lying in my bed, crying out to God and apologizing for all my sins.  I ask why and how am I supposed to do anything if I have this illness that at times renders me totally useless!

My rational mind tells me I’m not being punished and that I am a human being who is not immune to diseases or illnesses.   The pain I live with, the fatigue and the depression because of it all,  is part of the human condition.

I didn’t feel my elbow for the first minute or so.  I hadn’t felt it yet when my son said, “Mom, uhh, you did something to your elbow.”

I lifted my head attempting to get up.  “Mom just lie there.  Did you hit your head?”  I wasn’t seeing stars but walking back home with my son walking behind me with our bikes I couldn’t move my arm.

“I think there is a rock in there,” my son said and that’s when I felt dizzy.  A rock in my elbow.  The thought of it was nauseating to me.  I’m used to pain but not this kind of pain.

My doctor who is gentle and understanding was on vacation when I went to get my stitch out.  The doctor I saw was not like him at all!  I think she thought I wanted pain pills but I told her I had plenty.  I wanted to know if I had hurt my back because it was hurting.  I asked her to examine it, which she did.

“I think this is fibromyalgia.  It’s definitely tissue related.  You’re thin and when you have a traumatic fall like this, with fibromyalgia,  it can…”  I don’t remember how she worded the rest but I didn’t need to hear the words.   They are all the same.

If pain is due to fibromyalgia then basically this means it can behave any way it wants to.  It might be there a week or six months.  It might be localized or widespread.

Sometimes I guess I wish the doctors would say — oh this is something we can fix — and give me a time frame as to when I will be feeling better or recovered.

Update on July 11, 1010 The doctor says that a ligament in my left shoulder and a tendon somewhere around the bicep were strained and pulled.  It still hurts when I move it certain ways.  I fell on October 31st, 2009.