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mbeckoff
01-16-2010, 08:39 AM
I was wondering if anyone has Fibromyalgia.

I have it as well as scoliosis and was curious about how the fibro affected the pain management after the surgery


Melissa

MitoMom
01-16-2010, 03:41 PM
How did they get to the diagnosis of fibromyalgia? Did they consider any of the 50+ known mitochondrial diseases. I hear from too many on the mito forum that they were diagnosed with fibromyalgia and then after further testing the diagnosis was changed to mitochondrial disease.

The word from our scoli dr who was trained at Baylor where they have a great mito program is that due to the physiological stress of the surgery healing will take longer and may even trigger a relapse or regression. Our plan is to make sure that John received D10 instead of saline and absolutely NO lactated ringers. That's per the mitochondrial protocol. The latest study says that the use of D10 versus saline or lactated ringers helps those patients with mito recover faster since they are not put into a hypoglycemic state.

I don't mean to question your diagnosis but I know of several patients who were misdiagnosed which is pretty typical with adult onset mitochondrial disease.

mbeckoff
01-17-2010, 09:39 PM
I have been DX with fibromyalgia for 2+ years now.
I have never heard of the terms of which you speak.
I have none of these symptoms .

Melissa

The child or adult may have seizures, severe vomiting,
failure to thrive, heat/cold intolerance, poor muscle tone,
delayed achievement of milestones, severe diarrhea/
constipation, feeding problems, unable to fight typical
childhood infections or repeated infections and fevers
without a known origin. A “red flag” for mitochondrial
disease is when a child or adult has more than 3 organ
systems with problems or when a “typical” disease
exhibits atypical qualities.












How did they get to the diagnosis of fibromyalgia? Did they consider any of the 50+ known mitochondrial diseases. I hear from too many on the mito forum that they were diagnosed with fibromyalgia and then after further testing the diagnosis was changed to mitochondrial disease.

The word from our scoli dr who was trained at Baylor where they have a great mito program is that due to the physiological stress of the surgery healing will take longer and may even trigger a relapse or regression. Our plan is to make sure that John received D10 instead of saline and absolutely NO lactated ringers. That's per the mitochondrial protocol. The latest study says that the use of D10 versus saline or lactated ringers helps those patients with mito recover faster since they are not put into a hypoglycemic state.

I don't mean to question your diagnosis but I know of several patients who were misdiagnosed which is pretty typical with adult onset mitochondrial disease.

mdtaffet
02-01-2010, 06:42 PM
I was wondering if anyone has Fibromyalgia.



Melissa,

I was diagnosed with fibromyalgia in 1993 after a bad fall on the ice on my way to work one day; my right leg slipped out from under me, and I landed hard on my butt with my right arm stretched out behind me (my left arm held a stack of books at the time). By the next day, my right arm, wrist and hand were very sore, and I could barely use my keyboard at work. I ended up having enough of a problem to be out of work on disability for several months. At first the doctors didn't know what was wrong with me. Several diagnosis were hypothesized, including bilateral biceps tendonitis (eventually my left arm began to hurt as well, with pain shooting back and forth from one shoulder to the other and down to my finger tips on both hands), rotator cuff injury, and shoulder impingement. In the end, the one diagnosis that stuck around was fibromyalgia.

At the time of that fall (January 1993), I was not aware that I had scoliosis. I have scoliosis in my lumbar spine (26 degrees to the left), and in my thoracic spine (19 degrees to the right and 15 degrees to the left). Part of me wonders now if that fall could possibly have caused the scoliosis; I had little pain (other than plantar fasciitis) before that fall, and a lot of pain in different spots at different times since then. I do know that a full spine X-ray taken 18 months later (June 1994) by a chiropractor showed the presence of scoliosis, but at the time I didn't believe it. The first time I was informed I had scoliosis and actually believed it was in December 2003, when my primary care doctor ordered a lumbar spine X-ray due to the beginnings of my low back pain.

I was re-evaluated for fibromyalgia back in 2005 or thereabouts by a rheumatologist, and the subsequent evaluation confirmed the diagnosis of fibromyalgia.

I find myself wondering now just how much of the pain I experience might be due to scoliosis vs. fibromyalgia. At times I wonder if I really do have fibromyalgia, but then there are other symptoms and associated tendencies that I most definitely do have, including insomnia (when I don't take amitriptyline), probably IBS, sensitivity to cold, sensitivity to bright lights, and sensitivity to the sound made by flourescent lights, etc.

Right now I'm scheduled for a facet block in the hopes of lessening the low back pain, but like you, I wonder if fibromyalgia will leave me with its own pain in my low back that the block won't touch....

Let's hope we both get some good pain relief....

-- Mary