Chronic Tonic at VOTS: Fibrowhat?

This is a post I wrote many many moons ago for Chronic Tonic at the old place. Hope it's new to you all! Triv has the night off!

My first sign was when I was little, and I used to get severe pains in my leg bones. It was chalked up to “growing pains”, and I wouldn’t think much more about them until a couple decades later.

When I was 24, I started becoming fatigued pretty easily. Now, this was at a time when I was very active; I had my regular job and a volunteer job too, and I had a bustling social life. Slowly, I began to be tired more and more often no matter how much I slept. Because of my exhaustion, I began frequently having to back out of social outings, and some of my friends at the time eventually got frustrated with me and quit calling. But I was just too exhausted to care.

During the following 2 years, my exhaustion began being accompanied by pain. It started out as simple things that were abnormal for me. Once, when I was driving, I turned my head to glance at the next lane to change lanes and I figured I must’ve pulled something. But a pulled muscle or tendon should heal pretty quickly; mine didn’t. I had excruciating pain every time I turned my neck to the left for several months. And then suddenly the pain went away overnight. I had another really weird pain episode with my wrist. One day I was playing on the floor with my kitty, and nothing happened other than the regular bending of the wrist, but all of the sudden I had constant pain every time I tried to bend my wrist. It hurt for so long that I finally went to an orthopedist, who gave me a brace to wear. After several months, just like my neck pain, the wrist pain disappeared overnight.

Now, if it was just these two things, I would’ve probably written them off as my body being freaky. But over this period of time I started experiencing generalized pain too. When I would wake up in the morning, my body would be stiff and painful. When I stepped out of bed, my feet hurt so much that I would take a quick step and shake my foot and then another quick step and shake the other foot. My ex-hub back then used to refer to it as the chicken walk.

All these weird things bothered me, but my internist couldn’t find anything wrong, and neither did the orthopedist, so I just tried to ignore the pain. However, as time went on, the pain and exhaustion kept getting worse and worse and my health began affecting my job. There were also specific pains, so I started going to different types of doctors to treat these specific pains. I had digestive pain, so I saw a gastroenterologist and had a test where I drank this awful stuff that lit up my intestines, but he found nothing. I had plumbing pain so I saw a urologist and had exploratory bladder surgery, and nothing was found. At one point, I even had an IVP test, where they pumped glowing fluid through my blood veins to light up my kidneys, and nothing was found. I had so many damn tests during this period I felt like a friggin’ guinea pig.

Finally, I was having some hip pain, so I went to the orthopedist again. He did an MRI on my hips and legs, and again, other than a small circulation issue which wasn’t going to be the cause of any pain, he found nothing. But he did ask me a couple of questions about any other pain I might have been dealing with, so I told him about it and he said that he thought I might have Fibromyalgia and that I should see a rheumatologist.

Man, the first time you hear the word Fibromyalgia, it’s kind of frightening. It’s not something that a lot of people knew about back then (this all took place in the mid 1990s), and it sounds terrifying. But I found a rheumatologist and made an appointment. That was the beginning of my life finally starting to look up.

The first rheumy I saw diagnosed me pretty quickly after looking at my history giving me the tender point test and started me on amitryptaline and I could tell a difference almost immediately. It wasn’t a drastic difference, but my God, it was so much better than the continual severe pain and exhaustion. (Save of course for the great pain I had for the week following my tender point test – all of mine are very tender…) I changed rheumys after a few weeks due to a personality conflict, and my new rheum was the most awesome doctor I ever had. My original scrip had really bad side effects and I was still so sick that work was an issue, so he pulled me out of work and put me on temporary disability for a year. During this time, he worked with me with different combos of meds until we found one that worked well with the least side effects. I finally got to where I felt good enough to return to life.

I was finally diagnosed in 1998 when I was 28 years old. I had been getting sicker and sicker for 4 years and had seen various doctors for the last 2 of those 4 years. I can’t tell you how great the relief was to know that I wasn’t just kinda nutty. It’s been a long road to feeling semi-normal, but I finally got to a point in the past few years where, while I’m not normal like normal was before Fibro reared its ugly head, I’m normal enough to enjoy life again. Oh, I still have pain every single day, but I’ve learned to deal with it. Sometimes, I have flare-ups and I have to wait them out, but now they are just occasional. And my meds regulate my sleep pretty well, so I’m not exhausted all the time anymore. It’s been a looooong road, but life is a lot better now.

For anyone who wants a couple good Fibromyalgia links, here they are:

National Fibromyalgia Association

National Fibromyalgia & Chronic Pain Association

The floor is open! 

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I remember

Ellinorianne's picture

you mentioning the chicken walk!  I still struggle with fatigue and it's so frustrating when you have so many things to do and you want to nap after just working a few hours and you still have a nine year old to deal with.

It's fucking unforgiving.  

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oh yeah, i was a funny sight trying to get my circulation

poligirl's picture

going in the morning! and i think i will always struggle with fatigue the most. i mean the pain is bad but i can deal with that easier for some reason; the fatigue - oh that's the most debilitating part of it... :

and yeah, you have a 9 year old - you must be absolutely exhausted all the time... :o hell, i think my cats are hard, i can't imagine a kid...

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This is an education for me

geomoo's picture

And the best kind--an education on what fibromyalgia is subjectively.  It's also a useful education on knowing more about what is going on for you when you mention these issues.  Thanks so much.

My stepdaughter is now well into over 8 months of strange symptoms which come and go.  Like your issues, they change all the time.  I wonder if you agree that perhaps the very worst thing is knowing that something is wrong but not knowing what.  She's been through a billion tests.  She does have a doctor now who is wonderful to her and utterly devoted to figuring this out.  I hope she gets results like yours which, although far from perfect, enable her to continue on with a rewarding life as you have with yours.

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yeah, knowing something is wrong but not...

poligirl's picture

having anyone able to figure out what in spite of all the tests... man, i was worried. especially w/ mental illness running in my family, it was easy to let myself run away with wondering "maybe it is all in my mind"... but what a brutal mind that would be...

was a relief finally knowing...

healing vibes to your daughter from me...  :D

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