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Do I really have fibromyalgia?

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Old 11-14-2009, 01:43 AM   #1
Join Date: Nov 2009
Location: salem oregon
Posts: 3
Dryice2199 HB User
Do I really have fibromyalgia?

They say I have fibromyalgia, but I've only had one very short visit with the rheumatologist that gave me the diagnosis.

A short list of symptoms:
Super sensitive to heat (higher than 65F)/touch/pain/odors/high pitch sounds (all since birth, 29 years)
Insomnia and morning fatigue (since 1987, 23 years)
Muscle and (I think) neurological pain in different parts of my body and chronic fatigue (since 1996, 13 years)
Explosive diarrhea several times a day (since 2002, 7 years)
Migraines (since 2006, 3 years)

A short list of diagnosis':
PTSD (1984, 25 years)
Dyslexia (1986, 23 years)
Bipolar type 2 (2000, 9 years)
Lipoma shins, knees, forehead, shoulders (2006, 3 years)
Fatty liver and fibromyalgia (2007, 2 years)

a short list of drugs:
depakote (did nothing)
lamotrigine (lessened pain and made me hyper, but I felt like I was hit by a truck when I woke up)
lorazepam for migraines (Worked for body pain, but in knocked me out)
morphine (made my chest feel like it was on fire)
ketorolac (made my leg feel like it was cramped up for a hour, then I was hyper sensitive to pain... The IV needle felt like a nail being driven through my arm and it didn't even break the skin)

Now that, that is all out of the way, I had, and have an infected tooth and I was using clove powder wrapped in a coffee filter to lessen the pain. The pain became too much and I got an antibiotic and Tylenol 3. I started losing weight like mad and my diarrhea became less frequent. The nerve died and while I finished the antibiotic, my diarrhea came back. I tried a few things for pain like valerian root and what I thought was ginger and most of my pain went away. I later figured out it was the clove powder I was using for tooth pain in the capsule. I looked up why cloves work for my pain and found it has a neural toxin in it that effects the peripheral nervous system (and can kill you in high doses).

I've been using cloves and valerian root for pain management for about two weeks since the toothache (four weeks total for the cloves). Most of my pain is gone (except muscle pain), I have regular BMs, I've lost about 20lbs and I've even been able to get a job. The only problem is, the cloves only mask the pain (when the cloves wear off, I can barely move) and like when the ketorolac wares off, I'm hyper sensitive to pain.

I've had a CT of my head (or brain) and later my abdomen looking for causes of pain without any luck. By the way, testicular pain get you put on the top on the list in the ER.

Does this sound like fibromyalgia to anyone else? I'm completely out of ideas. So, if you have any, they would be greatly appreciated.

I know were my symptoms are coming from, but not what is causing them or how to fix/treat it. To me, it sounds mostly neurological, but with the two scans, they should have most of spinal cord and brain ruled out. I haven't had heath insurance since my last diagnosis. So, any tests you guys think I should get will be out of my pocket if I can even get them to perform them at all.

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Old 11-15-2009, 07:21 AM   #2
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Re: Do I really have fibromyalgia?

hi dry,
don't waste your money. if you have fibro there is no definitive test to prove it. your symptoms fit the list our dear doctors have created "in their infinite wisdom". sarcasm intended, giggle.
what is your diet like?
anything you take will be a mask. there is no magic pill. trust me i looked. giggle. cloves and valerian are good choices. i remember they helped me several years ago. due to meds i take for other health garbage i stopped them.
for myself i found water, fiber, veggies, suppliments, exercise, and most of all a good attitude no matter what were my answer to feeling the best i can given the body i have.
i still have all the same symptoms only less intense. i also have alot more energy since i changed my diet.
i love your line about testicular pain. bummer to have, but it gets you in faster. hope you don't mind but i got a kick out of that.

Old 11-15-2009, 03:54 PM   #3
Join Date: Nov 2009
Location: salem oregon
Posts: 3
Dryice2199 HB User
Re: Do I really have fibromyalgia?

Yeah, my diet is horrible. It starts with 1-4 16oz cups of coffee from when I wake up tell I go to bed. I mostly only eat dinner, but sometimes a lunch. Dinners and healty'ish (but large), then I snack on anything from chips or crackers to nuts until bed time. I try to stay away from soda because that seems to trigger IBS symptoms.

Until recently (before the cloves), eating more fiber just made me run to the bathroom more often. I'm also trying to eat three meals and make a switch to ginseng, because I noticed that I feel worse in the mornings, if I've had a lot of caffeine the day before.

I'm only aloud to have water while working, but I've been slamming down a can of soda on my break to fight the fatigue.

I've noticed (now that my GI track is slowed down), I'm hungry for more meals and I drink less coffee. I'm guessing that the high sugar and fats in my diet were the only fuels I was getting, because most of my stool was undigested food. That might also be why I lost so much weight this last month.

If I don't count the caffeinated products (since it's a drug to me), I don't think a diet change will make a real impact, but I was shocked by how much the cloves helped that I'm willing to try anything that may help more.

I've used CoQ10 and a multivitamin on and off for years to give me an energy boost in the mornings, but I haven't needed it so far and with very limited funds, I hoard them.

On a side note, did you take valerian and cloves on a timed schedule or just when you had pain? I've just been taking it when the pain starts or becomes too much to handle. Like the CoQ10 and multivitamins, I try not to use them unless I have too.

As for the ER testicular pain visit being funny... It was.

<Warning: Rant In Progress>

I started with 5 out of 10 on the pain scale (mostly in my back and side). Then they started to treat me. pain 10 out of 10, but in my leg now. It felt like a leg cramp from my hip to my foot. When I told the nurse, she said, "The medicine we gave you doesn't work like that. It can't give you pain."

Two hours later the doctor comes in and asks me if I want something for the pain caused by the pain meds. I wanted to say "Hell no!", but what came out was,"No more, it hurts too much." The pain in my leg tapered off and the nurse walked in with bag saline and wanted to put an IV. The first stab, I flinched "ouch". Second stab, I finched "ouch!" The nurse said, "I haven't even broke the skin. Stop moving." Thrid stab, "Too far. Too far. Stop! OW! Ow! What the [email protected]#$!" and I ripped my arm away. The nurse said,"That was your fault!" I look at my arm and there is a huge bruise were she was stabing me. I get home and look up the side effects/reactions, and the last one on the list is hypersensitivity to myalgia. I wanted to print out the side effects, highlight the myaligia and shove it down that nurses throat, but they never found what was causing the pain and I refused drugs, so I was in too much pain to drive back to the hospital or I just might have.

<Rant Concluded>

Last edited by Administrator; 11-15-2009 at 06:32 PM. Reason: Please do not include your previous message when you create a new post.

Old 11-16-2009, 07:13 AM   #4
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Re: Do I really have fibromyalgia?

it sounds like you already know what triggers it. there are foods that will slow the runs. bananas come to mind.
when i took valerian and cloves i took them as needed, same as i do with the meds i take now.
when it is necessary to put a needle in me i watch, meditate on opening my body to the needle and i tell them when i am ready. no matter how much pain i am in i control this body and how it is touched. i can be a tough old girl when i have to.
and, since i used to put i.v.s in people i know who screwed up and it was not you. nothing like a nurse who has no ears with which to hear. sarcasm intended, giggle.
i know your finances are a huge issue in taking care of your body, however, those vitamins really are important. especially if your diet is as you say. giggle. i am a lousy eater too. i just never feel hunger, so i don't remember to eat. my thing is candy. it is also the one thing i am not giving up!
check out your local wally world if you have one. they have a good assortment and are not so expensive.

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