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Old 08-21-2006, 09:19 PM   #1
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Lightbulb My experience (no actual dx right now)***UPDATE

Hello everyone!

I have a few questions. I was going to wait until after my doctor's appointment tomorrow to post, but figured this is a good time.

I recently moved to a new city, and had to find a new doctor. I had been battling with terrible muscle spasms and muscular shock like feelings for about 6 months. Day in and day out. I had been to the ER with a "muscle injury" to the shoulder. The reason I went to the ER was because I found these injuries were happening FAR too often. Sort of like, going to sleep, and waking up with a knot in my neck, but way worse, and sometimes my neck, sometimes my shoulder, behind the shoulder blade, or my knee. Sometimes I was put on heavy duty painkillers, or muscle relaxants. I was fed up of no one doing anything to try and figure out what the problem was.
I had a series of blood tests, most of my CBC was elevated. Had a repeat blood test 3 weeks later, only my LDH and my lymphocytes were elevated. Had another blood test last Wed, and got a call from my doctor that they want to see me because my "blood chemistry" is elevated.
Anyways, I'm getting ahead of myself. I went and met my new doctor. We did the general history, now I didn't get to add, when I spoke to him, that we have autoimmune disorders running RAMPANT on my mother's side...(in 4 people we have: Graves Disease, Celiac's x2, Eagle's Syndrome, Rheumatoid Arthritis, and Fibromyalgia x2). So I start telling him about my problems. My muscle spasms, the electric shock type feelings, the overall pain and stiffness, and he says "it sounds like Fibromyalgia". I, thinking I'm so brilliant, don't concur with him (although I kept that to myself), and just let it slide, as we go about our appointment.
Now I've been reading through some of the old posts, and I'm starting to think I may have been wrong. Maybe the guy with the medical degree has some clue as to what he's talking about. I'm interested in talking to him tomorrow and asking if he still thinks it's fibro, and what he wants or plans to do about it. No one's ever checked my trigger points, but if I'm checking the right places, I'm feeling a deep pain that lingers for quite some time after the pressure's stopped.
I don't know. I guess I was just thinking it would be nice to have the opinions of people who have Fibro. I was going to call my grandma, but it's too late, maybe I'll give her a call tomorrow after my appointment.

Also, I don't know if it's relevant, but I have a HUGE list of drug allergies (almost ALL antibiotics, codiene, naproxen and Effexor). As well, I don't have any problem sleeping, but I don't get a restful sleep. I was given Neurontin for the spasms, and if I do take it at night, I notice I sleep a lot better, which leads me to believe that I do have pain at night, I just sleep through it.

Thanks for reading my novel and thanks for any input!

Christine


My Update:

So, my update. I saw my doc, my liver enzymes are messed up, so he's testing me for Hep and sending me for an ultrasound of my liver. He also told me I have FM. Now, I think he uses FM as a diagnosis for any unexplicable, all over pain but since I personally think this is an accurate diagnosis, I'll leave well enough alone.

I'm not sure if I have an actual DIAGNOSIS, or if he just "said" it....lol but I'll take that as a dx, and just be glad it's nothing worse. Not minimizing FM at all (my pain is relatively mild compared to a lot of people here, but that could change, I realize that), I'm just glad it's something I'm going to survive. That was all I was asking for a month ago when I didn't know what was wrong with me. Pain, muscle spasms, brain fog, couldn't speak properly sometimes, freaked me out.

Anyways, that's my update!
Thanks for the thoughts!
Christine

Last edited by Stormangel28; 08-22-2006 at 05:09 PM. Reason: UPDATE

 
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Old 08-22-2006, 05:58 AM   #2
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Re: My experience (no actual dx right now) thoughts??

hi christine,
it is not an easy road this fibromyalgia. it is doable tho. please post after your appt and let us know how your visit went.
exercise, diet and attitude, along with a good doc by your side to assist you in your journey. these are the best tools i have found in more than a decade of checking out "new treatments". you will find the balance that works for you. it takes time. have patience with your body and your doctor.
i also spent 9 years in therapy to adjust my mind to the new me. needed different coping skills and the creation of boundaries. so helpful.
it is a pleasure to meet you.
peace,
bluelakelady

 
Old 08-22-2006, 07:53 AM   #3
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Re: My experience (no actual dx right now) thoughts??

hi there,

i'm going through some tests right now too for fibromyalgia, and for other muscle diseases (not sure which ones - doc didn't say).

for the past two months i've been experiencing an area on my back that i am always 'aware' of - it's very hard to describe. it started out just being a little tender spot and then develeped into a painful area. i also seemed to keep pulling my neck muscles - and that was in my sleep! i'd wake up and one side or the other on my neck would be in pain and i'd be in knots. i could hardly move my neck from one side to the other. i still feel a twinge if i try to move my head to the right.

one of my first signs that something was wrong, even prior to the back pains, was my joints were clicking a lot - every time i moved they would click and crackle. i have read up about fibromyalgia and i can't see anything about joint pains - they say it's more muscle, so i don't know what that's about.

i am now experiencing pains in my hips, buttocks, shoulders - along with the other aches and pains i already had.

my initial cbc was elevated as was my ESR, and the doc is doing a repeat test on those.

like you, my symptoms started out with muscle spasms and electric shock feelings all over my body - i didn't know what the hell was going on, and i put it down to the medication i had just started - i was taking wellbutrin. (my back pains started prior to the medication though).

i find it interesting too that my mother suffered from chronic fatigue syndrome (also known as 'yuppy flu' in the 90s), so i wonder if this kind of thing can run in families.

i hope that you manage to get some answers from your doc!

Last edited by aleenia; 08-22-2006 at 08:13 AM.

 
Old 08-22-2006, 05:07 PM   #4
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Re: My experience (no actual dx right now)***Update

I don't know if my update's showing up. So this is a test to see if it is!

Christine

 
Old 08-23-2006, 05:15 AM   #5
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Re: My experience (no actual dx right now)***Update

dear christine,
if he said it, it is yours. you are right to be relieved. you can grow old, old, old with this fibro at your side. wise woman. seeing the joy in being gifted with something you can live a long life with. i am proud of you.
sorry about your liver enzymes. i will do some special magic dancing for your liver health. is there anything in your history that would lead you to be concerned about hep? i had messed up liver counts in the beginning. i was drinking one alcoholic beverage a day. gave it up, started meditation, and hit the water heavy. took a bit of time but got my counts healthy. i shall hope you are fortunate as i was.
thank you for the update. keep healing thoughts. if you meditate focus on your liver healing. i will do it with you.
peace,
bluelakelady

 
Old 08-25-2006, 07:15 AM   #6
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Re: My experience (no actual dx right now)***Update

Christine, elevated liver enzymes can cause you to feel a little worse than normal, I speak from experience. They can cause more fatigue and added joint pain and a very annoying pain in your right side. My liver enzymes were on a roller coaster for a while but have things pretty much in control now. Good luck with the tests.

 
Old 08-25-2006, 09:34 AM   #7
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Re: My experience (no actual dx right now) thoughts??

StormAngel,

With liver enzymes messed up & fam hx of celiac, have YOU been tested for CD? Relatives of celiacs are more at risk that the general pop because of genetics.

I personally would also want to make sure I had had extensive testing for those other AI diseases in the family as well. A quick & easy fibro dx without doing the rule-outs can add extra time to finding effective treatment.

Best wishes.

 
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