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edamommy
New Member


Date Joined Oct 2012
Total Posts : 1
   Posted 10/5/2012 7:50 AM (GMT -7)   

Hello. I'm a 41 year old vegan mama and wife. I have a 9 year old son and we live on a Maine island. I was diagnosed with CFS in 1990 (there abouts), after being tested for everything from AIDS to LUPUS. I've not been "treated" within a medical establishment for CFS in particular since about 1996. Once my original doc retired i moved to chicago and received wonderful care/counseling at a whole healt center. but then moved to colorado and then back to maine within ten years and both of those states showed no interest in allowing me to be a CFS person- in fact I felt that they snickered at the very name of it. Burned out on being sent from doc to doc to doc for headaches, skin pain, muscle pain, exhaustion and insomnia just within the last 5 years and that's that. I take care of it all myself the best I can. I feel that I was in a kind of "remission" from about 1995 to when i got pregnant in 2003. Then, it came back like a fireball. and i've suffered flares since. Most recently I've been in a few year funk of severe insomnia and migraines/headaches. plus all the other daily or weekly occurrences of muscle weakness and brain fog.

if anyone has time, I'd love to hear a snippet of who you are and where you are in this illness. and did anyone else have a "occurrence" of it brought back by pregnancy?

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 10/5/2012 6:41 PM (GMT -7)   
Hi Edamommy, nice to meet you. I am a 60 yr old woman with 4 grown kids and 7 grandchildren. I was dx'd with CFS and Fibro in 2006 but I had both of them longer then that. It took me several years of looking & going through every test my Dr's could think of to finally settle on the dx of Fibro first & then within a few months CFS was added. CFS is my primary illness & keeps me very disabled, I receive SSD for both the Fibro & the CFS, I have a few other things going on as well but these to me are the worst. I believe I ended up with FM & CFS due to overwhelming stress over 3 to 4 years. My grandson was born with a bad heart & over the 3 or so years it was an up & down ride with us always waiting for the other shoe to drop. Every time we though he was on the mend the bottom would fall out of my little bubble I lived in & then the Dr's would come through with something & save his life. He is doing great now & we are very blessed. It was during this time that I became very ill & just could barely push myself out of bed or go to work. Fortunately, I had a Dr who believed in both of my illnesses & I have been able to keep my pain under control & I do get lots of sleep at night because of the meds I take. The GP I have now does not seem to be sure if they even exist so I may have to look around for a new one soon, he has continued with the meds my first GP gave me so that's good.

I hope you will find a good Dr soon, I wish there was a pill we could take to feel better. We pretty much have to be our own advocate & find ways to help ourselves feel better. I have found, for me, that caffeine helps give me a boost when I need it. Also, I take vitamin D3 & a multiple vitamin each day. I have tried B 12 sublingual but it didn't really help me at all. I am going to try coQ10 & magnesium because I have heard they can help with energy some. I sleep 10 to 12 hrs each night with a muscle relaxer & Trazadone but I still wake with no energy. How I want my old life back. Take care of yourself & keep posting. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I 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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