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.

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7 responses to this post.

  1. Posted by michelle jadaa on October 1, 2010 at 3:41 PM

    oh i read this and totally understand.I saw my dr well actually her nurse practitioner last week.I explained i was in more pain.This is the second time they have said tylenol and now the second time i have told them i have taken everything OTC and nothing touches the fibro pain.She asked how long id been diagnosed and then acted surprised that i wasnt feeling better.I explained to her i dont want narcotics any more than the dr doesnt want to prescribe them but i need a break from the pain.I think next time she ‘ll refer me to the Rheumatologist that diagnosed me which means an appointment at a hospital and i dont drive so it means asking someone to take me and then wait with me.Im tired of the run around,im tired of the daily struggle,im tired of little to no help.Im just plain tired.
    I take a low dose of lyrica for nerve pain and flexeral for the muscle spasms and stiffness.

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    • Hi Michelle,
      I’m very sorry to hear you are struggling with more pain. I feel sad for you 😦
      I canceled my appt., with the pain “expert” and then the next day began having severe back spasms. Go figure, you know. I may call back and reschedule.

      I took Tramadol, a non-narcotic, for about two years, which helped. Maybe you could ask about that medication. I was very much afraid of taking a narcotic also but I got to a point in life where I really didn’t feel like I had a choice. The pain got too bad. It’s been more than three years that I’ve been on the same dose so that’s pretty good.

      I hope you get some help and feel better soon. I’m also sorry you have to ask for help with transportation. I find it hard asking for help, so I understand what that feels like too.
      I would like to know if you find relief. Try to take good care of yourself.
      Thank you for your comment. I appreciate you sharing with me. It helps me and I hope you too — if nothing else, we can empathize with each other.

      Affectionately,
      Michelle (dogkisses and hugs too)

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      Reply

  2. Oh boy…this is a hard one. If you are so unsure about this new doctor maybe you shouldnt go. If you feel differently at a later time, you can always make another appointment. I know how it feels to be dismissed by doctors. I especially hate it when they suggest that my illness is caused by depression and stress. Hang in ther Dogkisses.
    mo

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    • Hey Mo!
      Well, I canceled. Unsure if that was best but I’ll explain to my doctor why and I thought the same as you, I can always go at another time. The day after canceling, I woke up with a severe back spasm, again. Whew. When it rains it pours don’t it? Thanks for reading Mo, and I hope you are doing okay.

      Warm wishes,
      dogkisses.

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  3. Posted by petra ortiz on September 29, 2010 at 11:14 PM

    this story reminds me of a video i have on one of my websites. if you’d like to watch it and ask for my help please do so.

    bless you

    petra

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  4. I wish I had something helpful to say, but I can well understand why you’re feeling wary about this pain clinic appointment. I hope it’s better than you fear, at least.

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    • Hi jeneli,
      You know, I think I need a sleep clinic more than a pain expert. Being awake at 3 in the morning kind of sucks. I’ll probably cancel. I don’t think I have to go. The doc says it’s for a consultation but I fear what they will suggest. Surely it wouldn’t be to do nothing right? Doctors never do nothing, even though sometimes I think that would be the best thing.

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