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03/27/2012 07:05 PM

newbie

alwaystired
Posts: 9
Member

Hello, I was just looking for a place to remind me that I'm not alone. I've had CFS for at least 10 years and no one seems to really understand it. I'm usually a very busy but this just knocked me on my butt!! I know that I'm not the only one dealing with this but feels like it. I lucky I guess because I don't suffer the pain that some suffer with this problem but the fatigue!!! My CFS seems to come in waves. I have about a month of "normal" functioning then about a month of unrelenting fatique. In the last year...its changed. Sometimes I can wake up feeling just fine and about a hour or two later feel like I've been up for days. Hope to just talk with others and learn or at least support and be supported.

thanks

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03/29/2012 06:26 AM
jenny1978
jenny1978  
Posts: 2599
VIP Member

Hey and welcome to the group. I have come to realize that there is not much activity on this group, so if you want to send me a PM, then feel free to do that. I only got diagnosed on August 31, 2011, however, I knew that something was wrong. I am generally a very active person. I was working two jobs and coaching softball and basketball. I just majorly over worked myself. If it weren't for my ADHD medication, which is a stimulant, so that helps a lot with my fatigue. They actually prescribe a stimulant medication that is specifically for day time sleepiness, but I'm not sure if you want to go that route. I'm 33 and I do still work full time. However on the same day I got diagnosed with this, I also got diagnosed with EBV, possibly fibro and also sporadic hemiplegic migraines. The migraines have been horrible lately. I had one for 2 weeks straight! Anyway, feel free to send me a private message if you want to talk.

03/30/2012 07:17 PM
alwaystired
Posts: 9
Member

Thank you for responding.I've actually had CFS for about 11years but was diagnose about 4years ago via the Chronic Fatique center. The nice thing about them is they test everything to rule out other stuff. On paper I look really good. I call these episode cause I don't know what else to call them. I had a pretty bad "episode", where I had to leave work early cause I couldn't even really think or barely stay awake. My husband and others don't seem to get that this is real. He seems to think that I'm just being lazy. Sometimes I feel like I'm being lazy but just getting up to use the restroom is 1/2hr ordeal. I had brain surgery and that seems to be when CFS started. I thought the symptoms I was having was due to the surgery. Since reading some of the other people on this website and their symptoms, I think it was CFS the whole time! I have brain fog(forgive me if I make a couple of mistakes--I'm still in an episode)and I thought the fog was the damage from the surgery. Please keep in touch, I can really use the support right now.

thanks again


04/02/2012 06:12 AM
jenny1978
jenny1978  
Posts: 2599
VIP Member

For a while when I first got diagnosed, I was halfway falling asleep at work. The assistant principal here was also my basketball coach all through high school, so she knows me very well. She would call my mom worried about me. I am still weak, however, yesterday I got outside and cut down these huge limbs off of some trees. Now today I am paying for it big time. My whole body hurts from head to toe. I know that with all that I have wrong with me, that I could most likely get on disability, however, I can't afford to be off work for a year. We can support each other on here!!!

04/04/2012 03:18 PM
alwaystired
Posts: 9
Member

I meant to also tell you that you can try magnesim 200mg a day for your headaches. I've had headaches since kindergarden and I spoke with a doctor a few years ago and he recommended magnesim. Seems that if you get Migraines its possibly due to not having enough in the body. You do have to be careful cause if you get too much, it will give you the runs. Maybe try 100mg first and adjust. Good Luck!!

04/04/2012 03:21 PM
alwaystired
Posts: 9
Member

How are you feeling today? Can't over do it. Maybe big job one time a week(tree cutting??? maybe once a year) Give in to allowing your body to rest. Don't fight it. Maybe some rest(small nap?) when you get home from work.

04/04/2012 04:09 PM
jenny1978
jenny1978  
Posts: 2599
VIP Member

Well, I wasn't able to go to work today due to one of my hemiplegic migraines. I feel better from the tree cutting though, lol. I'm only 33 and I guess I just feel like I should still be able to get out and be able to do so much still. I agree and I do need to just allow my body to rest. I leave for work at about 6:20am each morning and I get home at 4:00 if I get to come directly home. Sometimes I watch my nephews for my sister and when I do that, I don't get home until at least 5:15 or so. Then I come home, take a shower, eat dinner(my partner usually has dinner waiting) and then we take our meds and go to bed. Not a very exciting night, I know, lol. Most people my age are still out late and stuff, but I don't party anymore. Plus my partner is 19 years older than me and she has CFS and Fibro and Diabetes and a lot of other stuff. However, she is able to do things a little at a time. Sorry this is so long. I just had a lot to say, I guess. I will talk to you soon. I hope that you have a great night.

04/05/2012 03:36 PM
alwaystired
Posts: 9
Member

never say sorry for long messages. This board is for communication and sometimes to more words are needed and sometime not. Those headaches are something else!! Do you need to close the door stop all sounds and lights? I used to have to. Someone walking past my bedroom door would just about kill me. I know life may not be what you think it should be at 33 but it can be a lot worst. That is great that your partner will have food ready. One less thing for you to do. Usually, even a 30min nap can give you enough energy to get some minor stuffs done. Do you feel tired every day? Mine usually comes in wave. There was a point when I would be fatigued one month then one month of normal. That was great cause then I could plan my life around my "fatigue" month. Since I started working again(4 years old) I can't get a feel for this thing. Days I will wake up fine and about 9am exhausted,other days wake up like I haven't slept yet. So nice to talk to someone who understands. Thank you for reaching out!

04/05/2012 03:36 PM
alwaystired
Posts: 9
Member

"4 years ago"

04/06/2012 06:55 AM
jenny1978
jenny1978  
Posts: 2599
VIP Member

Okay I'm glad that you don't mind the long messages. It is great to have someone that understands. Oh, trust me, I was not complaining about feeling this way at 33, well I was, however, I try not to complain because I do know that there are WAY more people in this world that have it way worse than I do. I am still able to get out and do the yard work like last weekend and things like that. I just keep on trucking!!! The school I work at will be out for about 3 months for summer break, and we still get paid. Last year I worked another job during the summer to bring in extra money. But that was when I was living alone. I do believe that this summer I will just not work and I will just stay at home with Dee(my partner) and just plant flowers and things like that. I can play my Wii when I feel like it too. The boss of the job I did last summer is asking me to come back. He actually wants me to come back now, however, it would be TOO much to take on and I am not going to over do it again. IT is a job through the court system as a Youth Advocate. I have worked with juvenile delinquents since 2006. I love it, even though at times it can get stressful. I hope that you have a great day. I will tlak to you soon!
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