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I don't think I have fibromyalgia, but I was diagnosed

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Old 11-13-2009, 07:50 PM   #1
Join Date: Nov 2009
Location: salem oregon
Posts: 3
Dryice2199 HB User
I don't think I have fibromyalgia, but I was diagnosed

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 11-19-2009, 03:28 PM   #2
Junior Member
Join Date: Mar 2008
Location: Victoria, Australia
Posts: 31
CindyInOz HB User
Re: I don't think I have fibromyalgia, but I was diagnosed

Hi Dryice,
Your symptoms sound very similar to mine. I particularly grimaced at the heat intolerance, I suffer this time of year (aussie summer) and have to stay indoors where it's cool for almost 3 months until it passes. I am also photosensitive, so sunlight on any part of my body feels as though someone has thrown a pot of boiling water over me. I too have bipolar type 2, and polycistic kidney disease which has now spread to my liver - so hence it is a battle for me to have to take painkillers so often along with other meds. YOu mentioned migraines, which I also get although mine are mostly painless, instead I go blind for up to 3 hours for no particular reason. As for your tests, most of us here have been put through more tests than we care to remember, with the result of "nothing out of the ordinary" as the results. It can be confusing and frustrating to experience so much pain and other symptoms and be constantly told that the tests are negative. When I was diagnosed with Fibro, I too felt it was the wrong diagnosis, and that the rhuemy hadn't spent long enough with me. (I had suffered the symptoms for 5 years before I was diagnosed with Fibro). Finally now, 2 years after diagnosis, and having had more tests and 5 seperate doctors all agree it is Fibromyalgia I am finally begining to accept it. It seems for me the longest haul has been my acceptance that I have a condition that can't be seen, can't truly be tested, but renders me so incapacitated that at times I can't even walk properly. And not cure or truely effective treatment. To put it less eloquently, it sux! It's great you have found the healthboards here, I know the wonderful brave people here have helped me a lot in accepting my condition and in not feeling like a hyperchondriac. I wish you the best of luck, and hope you can find some answers soon.
Brightest Blessings,

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