Tuesday, February 14, 2012

Fibromyalgia: my story

Fibromyalgia is my most recent diagnosis.  Technically I was diagnosed with fibro about 12 years ago.  I had severe joint pain in my neck, shoulders, wrists, and stiffness in my lower back.  I had testing done, including some genetic testing, and was tried out on a variety of anti-inflammatories and sent to physical therapy.   The physical therapist was incredibly helpful.  The rest didn't do much.  The physical therapist said from his experience with what I was experiencing it appeared that I had an impingement in my neck.  This made a lot of sense.  The way pain started and was treated all made sense with an impingement.  I still am cautious of certain activities which can cause dizziness and pain.  But the fibromyalgia diagnosis was a joke.

Fast forward to a few months ago:  I had been on Cymbalta for a few years to manage depression.  Either my depression changed or my response to the medicine changed and it was not doing all that I needed.  So I was changed to a different antidepressant.  Over the next few weeks I developed intense, deep pain throughout my body.  I though I had a virus, or perhaps had hurt myself somehow.  I thought maybe I was just overtired or needed more exercise.  Well, some of these may have been true, but I finally called my doctor and asked what might be going on, as the pain has escalated to a point where I couldn't sleep and was getting out of bed feeling run over by a steamroller.  He gave me the number for a few rheumatologists he recommended and said he'd like me to be evaluated for fibromyalgia.  It took two weeks to even get ahold of a rheumatology office (due to office vacations, holidays, strange hours, nobody answering the phone, nobody calling back...).  When I finally got through I discovered it was MONTHS before I would make it onto their short waiting list.  I checked with every rheumatologist I could get to that is covered by my insurance.  Nobody would even talk about seeing me in less than several months.  Frustrated, I called my doctor back.

When I saw my general practitioner again he said that there is a shortage of rheumatologists and since I coudlnt' get through, he would just work with me.  He tested the classic trigger points and I nearly leaped off the exam table.  I hadn't been sure I would react at all... but wow.

Cymbalta, which I had been on before my symptoms became so marked, is one of the medications used to treat fibromyalgia.  The new antidepressant I was changed to, though, is not compatible with Cymbalta and we didn't want to change me off something that was working for my depression.  So the great medicine trial began.  I was started on Savella.  Within a couple of weeks the top 20% of my pain was managed.  I was able to sleep most nights.  I wasn't in such severe pain, but still in constant pain.  So I returned to my doctor and he increased my dosage to the maximum amount.  Within a couple of weeks my pain reduced further.  My pain was manageable most days without a lot of effort!!!  That worked great for several weeks.

A couple of weeks ago my pain started to increase again.  I initially thought it was just a flare related to a sinus infection I was fighting.  I finally asked my doctor for a couple of pain pills so I could sleep.  If I do not get at least 9 to 9 1/2 hours of sleep each night my pain increases dramatically.  Pain keeps me from sleeping... so it creates a terrible downward spiral.  The pain persisted.

After spending two days at level 7-8 pain I called my doctor again.  This afternoon I saw him and we made another medication change.  I have now added a muscle relaxant up to 3x daily to my medicine cabinet.  I'm 32 years old and take 7 pills a day.  Well, 10 now I guess.  If this doesn't help within 2 weeks I'll go back and we'll try something more.  I am praying to avoid constant pain medication.  I don't like the extra layer of fog and other side effects of pain medications.  I guess we'll just have to wait and see.

On a happy note: Last night I made it to the basketball with DD!  I got a padded folding stadium seat to go on the hard seat there and it made a world of a difference.  Since I'm not riveted by basketball I also brought my crochet project along :)  It is distracting to me and helps block some of the attention to pain.  We made it through the entire game and DD was VERY grateful.  It was a great mommy-daughter date and I'm glad I did it.

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