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Newly diagnosed

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Old 07-23-2012, 01:14 AM   #1
Join Date: Jul 2012
Location: Joliet, IL
Posts: 3
ddarken HB User
Newly diagnosed

Hi everyone. I was recently diagnosed with fibromyalgia (as well as myofascial syndrome and post concussion syndrome) following a car accident I was in. It's been 5 months and I still get new symptoms all the time. It's kind of scary and I'm wondering when the new onset of symptoms will stop. The newest symptoms are almost constant goosebumps that just come out of no where for no reason in patches all over my arms and legs. They go away after 10-20 seconds but just keep coming back. Sometimes the tingling with it is actually very painful! I've also started having extreme skin sensitivity to temperature. At times, it's virtually impossible to get comfortable because I'm freezing and sweating at the same time. When I told my doctors about these symptoms, they just looked at me like I was crazy and said they had no idea what it was from. I feel like a lot of my symptoms just keep getting brushed off. Has anyone else had these symptoms? Thanks so much

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Old 07-23-2012, 06:55 AM   #2
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Location: blue lakes, northern california
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Re: Newly diagnosed

hi and welcome,
yes i have the same issues. i have sjogrens disease as well and was told it was at the heart of my internal thermometer being busted. i get freezing sweats too. weird aren't they? these can be symptoms of fibro but i am more inclined to think, for me, it's the other disease playing in my body.
maybe it's time you go doctor shopping for a newer model? it took me years to find just the right bunch of docs to work with me.

Old 07-23-2012, 07:29 AM   #3
Join Date: Jul 2012
Location: Joliet, IL
Posts: 3
ddarken HB User
Re: Newly diagnosed

Thank you for the reply. What type of docs do you see for a diagnosis? Since the accident I feel like no one wants to take the time to really help me and just pushes me along to a different type of specialist. I've seen two neurologists (one of which looked at my EMG and said its normal so there's nothing wrong with me, and the other who diagnosed me with post concussion syndrome), an orthopedic surgeon who was a complete waste of time and money, a rheumatologist who diagnosed me with the myofascial pain syndrome, a pain management doctor who is completely unwilling to give me a diagnosis because he just keeps saying he has no idea what's wrong with me because I have too many symptoms in too many places, and my primary who diagnosed the fibromyalgia. It's extremely frustrating because this is a work comp case as well as a third party law suit right now. Work comp has quit paying stating that their IME doc determined there is nothing wrong with me and I should be able to go back to work full duty and blatantly accused me of faking all symptoms. And since so many of my doctors have been hesitant to give me firm diagnoses and just pass me around, my lawyer says its going to be very difficult to convince a judge that there's really something wrong with me. It's even more upsetting because I'm a registered nurse. I have a medical background and to my face the doctors talk to me not as a patient, but more on an eye to eye medical professional level. They seem to understand, but when I pull my medical records, it seems their documented opinions differ. I originally thought this way maybe RSD due to burning pain in the right forearm with temperature changes to the skin. The symptoms suddenly started on the right side as well one day. Followed by blotchy skin at times to that area and strange come and go rashes. My neurologist initially agreed to this diagnosis and sent me to pain management for confirmation, but the pain doc looked at me like I was an idiot and told me you don't get RSD from "whiplash related injuries", which I strongly disagree with. I'm so angry, frustrated, and now completely broke! The docs are hesitant to let me go back to work because I'm a home health RN so I have no help in the home if a situation occurs where I may need to be lifting a patient or performing CPR. I have had severe cervical and lumbar pain since the accident with a small bone spur and small bulge between c6 and c7, but everyone says its too small to becausing any symptoms. So they've put me on savella, lyrica, and norco for pain. It helps, but I tend to get a very high feeling which clouds my thinking and also makes me worry that I will not be in the right state of my to care for my sick homebound patients. I'm sorry for the long explanation/rant. I'm just hoping maybe someone can give me some insight as to where to go or what to do because it's just so crazy to me how I'm being treated by the doctors. Thank you SO much!!

Old 07-23-2012, 12:36 PM   #4
Join Date: Jul 2012
Location: wollongong
Posts: 1
Bonnie2405 HB User
Wink Re: Newly diagnosed

You need to look up "the hummingbird foundation" you have ME in fact your story is identical to mine. If I can help in any way let me know Bonnie..

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