Newbie here! A few questions.

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craftygeekmama
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/30/2009 3:49 PM (GMT -7)   
Hi all
My name is Kelli and Im 31 years old. I live in Ohio with my boyfriend and son. I was diagnosed as having CFIDs March of '08 ( i think).
I became ill after I had my son in 2000, vertigo and fatigue among other symptoms which the doctors told me was Menieres Disease.
It got really bad in '07 and I thought I was going crazy. I spent 5 months on and off in bed because if I moved I would hit the floor.  I went through a battery of tests to be that told no I don't have Meneires but CFIDs. My insurance is through the state, so the medicene available is almost nil. I am on Ritalin to keep me awake, although I did get some samples of Provigil and they helped. But my insurance wont cover it so for now it's ritalin.
 I am currently seeing neurologists who are undecided whether or not I even have CFIDs but maybe MS. They said I have something called footdrop but all the tests spinal,eeg,emg, mri's and cat scans have been normal. I have non specific spots on my brain but no lesions.
I have had to drop out of college three times because of cognitive problems and am only limited to 12 hours a week to work.  I am curious to see if anyone  here with CFIDs has constant dizziness or vertigo daily? Do you have spots on your brain also? I have asked my doctors if people with CFIDs can have spots on your brain and all I get it is "you can have those from anything" but no specific answer. Can CFIDs cause pain and tingling and not just in the joints? I am so glad I found this community! Thank you before hand for any answers!

Post Edited (craftygeekmama) : 8/30/2009 4:56:05 PM (GMT-6)


jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 717
   Posted 9/3/2009 12:11 AM (GMT -7)   
Hi Kelli,  I posted to you in my post.  So, hi again.  I have had Fibromyalgia for some time and have only been dx'd with ME/CFS since 2007.  I knew I had something else going on beside the Fibro because of some symptoms that didn't fit with Fibro.  For example, vertigo.  Oh yes!  I have vertigo quite often.  Sometimes, it lasts for days & sometimes for months & right along with that comes it's constant companion, dizziness.  Such a fun couple but I do like it when they leave.  LOL  I don't have any spots on my brain but I have scarring in my lungs & get that same answer you get: "you can have those with anything or nothing".
 
Yes, ME/CFS can cause pain & tingling in the muscles.  Also, a lot of muscle fatigue & muscle exhaustion. 
 
I have been through a bunch of tests too & most come up normal.  When you are looking for a dx it is hard to have everything come back ok.  I have such a mixed reaction to the news. happy it's ok but sad it is ok because I want to have a dx & get on with taking care of it.  These illnesses can be a roller coaster.
 
The foot-drop, is that where your foot drops down when you are taking a step & kind of trips you?  I can see where neurologist is concerned about that.  It can go along with some auto-immune diseases so it is good your tests are coming back normal.  It can also be attributed to other things that are not anything at all.
 
I hope you find a dx soon.  It is no fun living in limbo. Take care, hugs, Denise
 
 
 
 

 I have:  Fibromyalgia-dx: 2004, ME/CFS-dx: 2006, Holt-Oram Syndrome dx'd 1975, 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


craftygeekmama
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 9/3/2009 8:01 PM (GMT -7)   
Thank you for explaining foot-drop. I fall alot so far I haven't broken anything but I have knocked myself silly a couple of times. The vertigo is exhausting and the dizziness isn't much better. But after having the vertigo for week or two I would gladly settle for the dizziness.

jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 717
   Posted 9/7/2009 11:41 PM (GMT -7)   
Kelli,
 
How long does your vertigo & dizziness last?  My last bout was for about 2 months (a short one) but I think is is finally gone again for awhile.  Sometimes it is gone for so long I forget about it until I go to lay down one night & Hello!!  there it is.  Have you tried meclinaz?  I think that is how it is spelled.  I take that with a decongestant & have found some relief.  Meclinaz is an over the counter med for motion sickness & can be found in a generic form.  My Pharmacist told me about it & it has helped.  I have to check with my Dr before I take it the next time the vertigo & dizziness start, I have some new meds & need to double check.  Just a thought if you haven't tried it.  A decongestant helps to dry up my inner ear & that also brings relief.  Hope you are feeling better.
 
Gentle hugs, Denise

 I have:  Fibromyalgia-dx: 2004, ME/CFS-dx: 2006, Holt-Oram Syndrome dx'd 1975, 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

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