needed support and advice..

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New Member

Date Joined Mar 2009
Total Posts : 5
   Posted 3/28/2009 7:29 PM (GMT -7)   
Hello, I am new to this forum.  I am in limbo, trying to get a diagnosis of something.....anything to explain my symptoms.
Let me give you a breif history of my symptoms.  It may be a little long, but please bear with me.  about 5 months ago I woke up in the middle of the night to my right arm, from my elbow to my fingers, being completely numb and heavy.  It was hard to move and it felt "dead".  No pins and needles, just numb.  about 30 mins later the feeling started to come back along with stabbing pain from my hand to my shoulder.  My hands have never been the same since.
I have neuropathy in my hands and feet.  My finger tips feel like they have super glue on them all of the time.  Hand weakness, arm weakness and leg weakness.  Muscle spasms in my neck, back, arms, hands, legs and feet. Extreme fatigue.  My pupils are sometimes diff. sizes.  Extreme pain and pressure around my whole trunk of my body.  Numbness/tingleing in my hands, feet, knees and face.  Slurred speech and mental confusion.  When trying to walk through door ways I will walk right into the door way.  I have bad depth perception. 
My Drs don't know what is wrong.  At first they thought maybe MS, but I have no brain lesions.  I had nerve conduction study that was normal.  No pinched nerves.  I am neg for rheumatoid arthritis and Lyme.  My b12 levels are normal.  I am slightly vit. D deficent.  I am waiting on a MRI of my spine and a lumbar puncture.
My Dr mentioned that I might have fibro.  I don't have the painful pressure points that I read about though.  I am on gabapentin for the pain and that helps a little.  My hands and feet always bother me.  But somedays are worse then others.  I will sometimes have a week or two of relief and then it comes back stronger.
Does this sound like it could be Fibro?  This is affecting my life.  I have 2 very young kids, and I can hardly carry my 1 yr old son somedays.  The pain and weakness is almost too much to handle.  And the fatigue is awful.
Any advice or support would be so lovely.  I feel horrible, I feel like I am going crazy. 
Thanks so much

Regular Member

Date Joined Mar 2009
Total Posts : 180
   Posted 3/28/2009 7:44 PM (GMT -7)   
I want to offer my support, even if I don't feel competent to offer advice. Constant pain, and all the other symptoms you describe are hard to live with day in and day out. We have all experienced it. That is a hard thing to grasp when you hurt so bad, or when you drop something for the umpteenth time. You are not alone.
Fibromyalgia, Bipolar Disease, Post Traumatic Stress Syndrome, Clinical Depression, Arthritis, High Blood Pressure, etc.
Who ever knew I would be defined by my diseases??

Veteran Member

Date Joined Jun 2008
Total Posts : 726
   Posted 3/28/2009 8:39 PM (GMT -7)   
Welcome to the forum, it is nice to meet you.
Have you been checked for Myositis?  My daughter has Dermatomyositis & has the numb hands & arms.  Also, it can start in the trunk region of the body, those closest to the core like the hips.  Just a thought.  Also, it can cause weakness of the larger muscles in the body.  It is an auto immune disease & while Dermatomyositis involves the skin as well as muscles, Polymyositis involves just the muscles.  I would ask your Doctor about this, like Fibro, some Doctors have never heard of it. 
Go to the Lupus Forum here at the healingwell & ask them about your symptoms too. 
Hope you find out what it is, so many illnesses mimic each other.  Hugs, Denise

 I have:  Fibromyalgia, ME/CFS, Holt-Oram Syndrome, nasal allergies, food allergies, depression, TMJ, anxiety  Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11

Veteran Member

Date Joined Jan 2009
Total Posts : 1014
   Posted 3/29/2009 10:30 AM (GMT -7)   

Hi KelBel!!

Nice to meet you!! And welcome to the Forum!!

Geeez, sounds like you have a lot on your plate!!  I can't tell you whether or not you have fibro... but its possible.  A lot of us around here had it forever before we found out what was going on.  I have a lot of problems with my hands and feet.. so that's one of the bizillion symptoms.  But since there are so many things that could be wrong.. go check out the second thread on the forum called Fibro 101.  Theres a link on there called "what else could it be" that might help you .. along with lots of other links that can help you cope with fibro if that's what it turns out to be. Some things on there are just all around good things to know when you're suffering from chronic pain.  There's a chronic pain forum too.. that a good one too.. but I love my fibro forum!!!

Anyway... welcome to the family.. this is a great place to learn more about life with fibro..whether you've been dx'd yet or not. 

Keep in touch and let us know how you're doing.

Take care!!

Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel, Psoriasis. 
Meds = Elavil, Tramadol, Xanax, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown

Veteran Member

Date Joined Jun 2008
Total Posts : 1279
   Posted 3/30/2009 8:15 AM (GMT -7)   

Hi KelBel and Welcome-

I know it's scary when you are not sure what is going on and all the funky symptoms. I hope they can get this figured out for you soon. I do have fibro and I have a lot of trouble with my hands/arms, legs/feet going numb. In fact last winter at this time, my fibro symptoms started. I was at a mall with my sister and my left foot kept going numb. I even mentioned it to her because I thought it was so weird.

A slew of other symptoms followed not long after that, the left side of my face went numb, my lips and tongue. Then small muscle twitches around my eyes and lips and then it moved to my entire body. Then I got depression and then came the pain!! I could not move from the fatigue and the pain. If I moved 5 ft. the pain would knock me to my knees. Because of being hit so hard, they were able to diagnose me quickly. I feel bad for so many out there reading their posts and how long it takes to get a diagnosis somtimes! 

Sounds like they are getting it narrowed down for you- and that your Dr. suspects it could be fibro. Keep us posted!



Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck, SAD
Zoloft, Tylenol 4000 mg., Darvocet  

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