14 Comments

Fibromyalgia

English: Common signs and symptoms of fibromya...

English: Common signs and symptoms of fibromyalgia. (See Wikipedia:Fibromyalgia#Signs and symptoms). Model: Mikael Häggström. To discuss image, please see Template talk:Human body diagrams References fibromyalgia-symptoms.org Retrieved on April 19, 2009 (Photo credit: Wikipedia)

Oh no, you are thinking, not some wacky illness-obsessed post!

No, I shall attempt to not depress you too much, but I cannot ignore a condition that has affected me, and affects 1 in 12 new visits to a Rheumatologist.  I was 14 when I realized I Had A Problem that was diagnosed as fibromyalgia in my early 20’s. While 14 is unusually young, it does happen, and is associated with inflammatory disease later in life.

I will never forget sitting in English in Miss Yost’s class and trying to get comfortable for the 1000th time and suddenly realizing that I couldn’t remember anymore a day without pain.  As a very stoic kid-I lived at my ENT doctor’s office due to a congenital problem—I had been told all my life how my parents paid for his kids’ college with my medical bills. And I somehow knew that this would not be an easy answer.

So I suffered in silence and tried in a typically weird teenage way to cope by exercise and anorexia.  Back then FM had a poor prognosis, so it was a good thing that I kept it to myself. But when I got married and got a very stressful job I just couldn’t do it anymore, so I went to my doctor for help.  He jabbed my arm, I yelled and he told me I had FM and there was nothing I could do, but he could put me on Prozac and BTW he thought I was bipolar. I cried, it had taken 10 years for me to tell anyone and that is the treatment I got.

While he was right on both points, his uncaring attitude lost me as a patient.  I suffered for another 15 years, then began with weird and frightening symptoms with very high inflammatory markers so my GP sent me to a Rheumatologist, who said I did have FM and he did have some medications to help, but he was much more interested in my mystery medical condition.  I went to him for a year for an undiagnosed inflammatory condition, then I seemed to get better, so he released me and said he could see me every six months for FM.

Six days later I woke up in horrible pain with fingers as big as sausages.  In true Lori fashion, I tried to live with it until I couldn’t even put clothes in the wash, then I dragged myself back. His first response?  He sat down and yelled at me that he couldn’t do anything else for my FM.  I teared up and said I wasn’t asking him to then showed him my hands.  Ahhh….a  REAL medical problem!  So I got the icky news that I had a pre-rheumatoid arthritis condition that needed a load of medications to keep it from progressing.

While I am grateful for the medications available now that will hopefully keep me from the crippling condition of my great-grandmom, and for the medications that are helping FM sufferers, it still is a condition that is the stepchild of the medical community.  My Inflammatory Arthritis is more painful, but I can walk it out;  NOTHING changes my chronic muscle pain. And shame on all the physicians out there who dismiss this as Something Beneath Them.  As the payer, THEY are serving ME, and I believe that most of them have forgotten this.

Pearl in the oyster? I am one  tough cookie; I have a wacky, dark sense of humor; I am grateful to live in a time period where medications are available and I think my struggles to shine despite my tarnish have made me a better person.  Live, Love, Learn.

Ok, enough of my sad story, I hope to give you some imagery of FM in the poem below:

I have a condition understood poorly.

Chronic pain the hallmark to sufferers all.

A syndrome of many symptoms, surely

the scourge of physicians, sour with unbelief!

Whiners, hypochondriacs we are called.

In restless sleep there is no relief;

the pain similar to muscles mauled.

Burning fatigue, nerves’ constant  bite

waxing, waning but never gone.

Vindication, every sufferers’ right;

yet support of others’ often withdrawn.

 “Fibromyalgia Fog” a lippy phrase

as we struggle with memory and tasks.

Life becomes a fuzzy, misty maze.

Raining inside, with smiling masks

as medications throw us in a daze.

To some, other problems appear

TMJ, IBS, stiffness and muscle spasms,

Healthcare now our unwanted sphere;

feeling well grows into a widening chasm.

Often undiagnosed for many years

as all other conditions are ruled out.

Then tossed aside, stepchild for life;

Unbelieved, even we begin to doubt.

Is it in our heads? Are we our own strife?

“Never give in” our mottoe’d shout

I may not conquer this Demon Beast

but some day I will even the score.

This unholy pain will surely cease

with  death’s long sweet kiss

and I will feel it’s sting no more.

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14 comments on “Fibromyalgia

  1. I get so frustrated when people claim FM isn’t a real condition. If you have watched people deal with it, you know it is… Or you should.
    I don’t know very much about it because we learn so little about it in med school and I feel like we rarely see it or do anything about it in the clinics/hospitals I am at. I do know that it can be very frustrating to treat because you can’t always do very much except lend a listening ear and offer the few treatments there are (like you said, at least there are options now). Based on that, I can imagine it must be very frustrating to live with day to day.

    • The worst part is that it is controlled by the wrong service. It seems to be a neurologic/sleep disorder, or neurotransmitter disfunction (given some studies on high GABA levels) and it is in the hands of Rheumatology who are completely uninterested in this condition. If neurology could take it over, I think there would be more progress. To never be out of pain, even when sleeping, to have muscles that never relax, facial spasms, IBS, TMJ–its overwhelming. And unfortunately I have several other serious medical problems that I feel like my whole day is spent numbly going through the moves. I try and stay upbeat, but sometimes it is really hard. I feel your frustration when there just isn’t much to offer. I do wish that message was available for medical treatment/reimbursement as it does help for short periods of time. I also wonder whether it is a movement disorder. Something triggers the pain. The pain triggers guarding. Constant guarding causes maladaptive posturing, weakening some muscles (like striatus) and causing other muscles (trapezius) to overcompensate. I wish that could be studied.

      • I have cured, and I do mean cured, at least five cases of FM with acupuncture. But it’s a special kind of acupuncture that LACs don’t learn. I wish I knew someone in my area who had studied with my teacher so I could get help as well. He’s in New York so no chance of getting treatment with him.

  2. Wow. Your stoicism is so inspiring. God’s grace and peace fill your body, mind, and spirit.

  3. That sucks. I’m sorry you’re in pain all the time. I am too, but have not done anything about it, since one stigmatizing illness is more than enough for me. The first FM case I ever saw was a 12 year old girl who was being a good-humored Exhibit A at a Pediatric Rheumatology Grand Rounds. The attending pointed out all the places she hurt and I thought to myself, hey, I hurt in all those places too, and a few more, depending on the day. I had always chalked it up to too much exercise. For years I managed my bipolar symptoms with intense exercise and I was always sore. Now I’m still sore, and even mild exercise makes it worse. Oh well.

    Your rheumatic symptoms sound scary. Have all the antibody tests been done?

    • A long time ago, like 5 years. Nothing since I just have UCTD/IA and that is that. Of course this is a nondiagnostic umbrella category and some of these poor souls will go down the path of one of the big 7. Have I? Who knows. I take my meds, mostly, and suffer the pain. I don’t have any deformities so even though I have a relative with RA it is doubtful that I have that. With the bad Raynauds, I appear to have more lupus like symptoms, esp with the dizziness and neuropathy and I did have ulcers in the past in my stomach. I do have a relative who had an undiagnosed inabiliby to make RBC’s which ended up correcting only with prednisone and 3 relatives with mitral valve disease, two of which died of it (one was the RBC relative). All of this is on my dad’s side of the family. Thinking there is something bigger in our gene pool.

      • OK, so I know, like, nothing about rheumatology other than aphthous ulcers, Raynauds, weird nodules that hurt if you press on them, and multiple joint surgeries because they just fell apart, but no inflammatory mediators. Which is what I have. Other than that, I have avoided learning the alphabet soup, most likely out of denial. So what does UCTD/IA stand for? Nothing pleasant, I’m sure.

        • Undifferentiated connective tissue disease/Inflammatory arthritis. A crap term for high inflammatory markers and pain but no antibodies.

          • Hm, I guess if you gotta have some nasty crap like that, it’s better to have RF- ANA- everything else – even though it’s aggravating not to have a definitive dx. Have you looked into amyloidosis? I don’t know if it has specific markers. In the olden days you had to biopsy something–pretty much anything. I was looking at that yesterday because my blood vessels have turned to sh*t and anytime I scratch an itch or bump into anything I get these ugly streaks of capillary leakage at best, and downright painful hematomas at worst. I have had them inside my mouth, in my throat, you name it. Doctors always do the same thing: check platelets. My platelets are fine, thank you. It’s vascular fragility. That’s different. I went to my internist today and showed him the back of my right forearm, which looks like I ran into a bunch of red paint. What did he do? Same thing he did last time. CBC. Idiot. I guess I’m either going to have to ignore it, except when I have to have an IV and they blow immediately (I went through seven in a four-day hospital stay) or blood draw, which leaves a bruise that lasts for months and sometimes permanently occludes the vein. I look like a junkie. Hell, maybe I should try it? If you’re going to do the time, at least do the crime, as an old boyfriend of mine says.

            • I am similar in that my veins can bruise with a tough. My son pressed on a vein yesterday and it blew. He was astonished. I have had some low platelet levels before along with low hgb but only sporadically and not severe. No idea why, I always assumed the chemo ruined my veins and the prednisone I have taken in the past has made them fragile. Do you think the drugs you are on are making your veins very thin and frail?

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