Newbie here! A few questions.

craftygeekmama

New Member

Joined : Aug 2009

Posts : 5

Posted 8/30/2009 5:49 PM (GMT -6)

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)

ladybugdreams

Veteran Member

Joined : Jun 2008

Posts : 732

Posted 9/3/2009 2:11 AM (GMT -6)

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

Joined : Aug 2009

Posts : 5

Posted 9/3/2009 10:01 PM (GMT -6)

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.

ladybugdreams

Veteran Member

Joined : Jun 2008

Posts : 732

Posted 9/8/2009 1:41 AM (GMT -6)

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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