Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
I have been in limbo for exactly one year now with no concrete answers. I still feel awful and it is frustrating for me not having answers.
I am a 36 year old married mother of 2 small children.
My initial symptoms were a loss of strength (dead nerve feeling) in both arms, then a couple days later, a loss of dexterity in my right hand which lasted a few hours. A week After that, numbness (pins/needles) on my entire right side which lasted days. I have had extreme fatigue, numbness on my right side of face, earlobe and drooping right eye (ptosis), burning leg pain, paraesthesias. I have had dizziness almost continuously. I have had tremors in hands and since the hand dexterity issue, I constantly drop things ALL the time and my hands are much slower than they used to be (tying things, fine motor skills, etc).
Saw GP first, then neuro, then neurosurgeon (for a syrinx unrelated to symptoms). Neurosurgeon referred me to MS specialist.
I have had most everything ruled out; myasthenia gravis, lyme, lupus, etc. My GP did diagnose me with Fibromyalgia during this whole ordeal. He also thought most of my symptoms were anxiety (NOT). I had anxiety from the potential diagnosis--never prior to this!!
Anyways, MS doc sent me for second MRI which remained unchanged from my first, 5 months earlier (only one pontine lesion and thinning of corpus callosum). So she sent me on my way and I see her for the third time next month. She was straying away from MS as being the focus because my symptoms don't last long and there were no new lesions. She said she doesn't think it's Fibro and that's what Doctors say when they don't know what it is.
I am at a loss now. I see her again next month but prior to that I need a MRA done to check my brain's blood vessels so she can rule something else out (CNS vasculitis or stroke?) Meanwhile, I am dizzy almost all the time and have lately had a lot of numbness on my right earlobe and side of my face. I am always tired no matter how much I sleep and always feel like a nap.
Maybe it IS all fibromyalgia but I am so frustrated at this point and don't know what else to do! Are there any meds available for fatigue to give you more energy? My GP talked about putting me on Neurontin again but that was just for aches and pains. I remember it made me even more tired.
I am a 36 year old married mother of 2 small children.
My initial symptoms were a loss of strength (dead nerve feeling) in both arms, then a couple days later, a loss of dexterity in my right hand which lasted a few hours. A week After that, numbness (pins/needles) on my entire right side which lasted days. I have had extreme fatigue, numbness on my right side of face, earlobe and drooping right eye (ptosis), burning leg pain, paraesthesias. I have had dizziness almost continuously. I have had tremors in hands and since the hand dexterity issue, I constantly drop things ALL the time and my hands are much slower than they used to be (tying things, fine motor skills, etc).
Saw GP first, then neuro, then neurosurgeon (for a syrinx unrelated to symptoms). Neurosurgeon referred me to MS specialist.
I have had most everything ruled out; myasthenia gravis, lyme, lupus, etc. My GP did diagnose me with Fibromyalgia during this whole ordeal. He also thought most of my symptoms were anxiety (NOT). I had anxiety from the potential diagnosis--never prior to this!!
Anyways, MS doc sent me for second MRI which remained unchanged from my first, 5 months earlier (only one pontine lesion and thinning of corpus callosum). So she sent me on my way and I see her for the third time next month. She was straying away from MS as being the focus because my symptoms don't last long and there were no new lesions. She said she doesn't think it's Fibro and that's what Doctors say when they don't know what it is.
I am at a loss now. I see her again next month but prior to that I need a MRA done to check my brain's blood vessels so she can rule something else out (CNS vasculitis or stroke?) Meanwhile, I am dizzy almost all the time and have lately had a lot of numbness on my right earlobe and side of my face. I am always tired no matter how much I sleep and always feel like a nap.
Maybe it IS all fibromyalgia but I am so frustrated at this point and don't know what else to do! Are there any meds available for fatigue to give you more energy? My GP talked about putting me on Neurontin again but that was just for aches and pains. I remember it made me even more tired.
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I'm alive, I'm sleeping like a rock, and for some reason I wanted cherry juice so that seems to be helping. (??? Weirdo that I am.)***Infamous therapies over history:1. The Attic. The madwoman in the attic is a motif in literature going waaaaaay back: the nutty female relative is locked in the attic. (See: Jane Eyre by Charlotte Bronte for a grotesquely racist version of it, and Charlotte Perkins...
I know that some illnesses can take awhile to diagnose and others are rare. Maybe you can get a referral to a university medical center if need be later.
From my (disabled RN) standpoint, what you describe doesn't sound like fibro. Good luck and try to be patient. I know it is frustrating and scary.
Opinion if needed.
I agree with shakota this isn't fibro. Don't give up.
http://www.hughes-syndrome.org/about-hughes-syndrome/what-are-the-symptoms.php#.Uz3g0sdfngo
You can check the blood tests that are done for it on this site. Some rheumatologists think a lot of these patients are misdiagnosed as having fibro.
Have you seen a Rheumatologist? I don't see that you mentioned that so I would suggest that you see a Rheumatologist. It could be many things from what you have described and I think that a Rheumy would be a good place to start.
Ask for another complete blood work up and that will either include or exclude other possible conditions. Did you ever ask for your Thyroid to be tested or your SED Rate? Were you tested for RA ?
I would definitely suggest seeing a Rheumatologist.
Let me know what happens and feel free to send me a message anytime.
Click on the link below:
http://fmaware.org/PageServerda3b.html?pagename=fibromyalgia_diagnosed