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Poll for Members' With Fibro
I was just wondering how many of you would support a "Living with FIBRO/CFS" board ? I know there are so many similarities with our conditions and many people who have fibro often have signs of CFS and vice versa.
Please let me know what you think and if you guys would like another board, then we can notify Med Help.
Please let me know what you think and if you guys would like another board, then we can notify Med Help.
Hi, Im back again after a little break..........
It was too painful for me to be on my computer sitting up for any length of time so I got an Air Desk and a laptop and rigged it up over my bed so I can type laying down with my elbows propped up on some pillows. Its a little precarious but does wonders for my back pain and keeps me connected with people even though I am laying down.
FMX smoker...I quit the first time before I was sick, I was practicing yoga and meditation and smoking gave me a migraine. Then I started again years later when I was living in Mexico for a few years and surrounded by smokers. This time, I took wellbutrin, used the patches and listened to the tapes and was able to quit, although I was still smoking in my dreams for quite awhile afterwards. Its been 10 years and smoke free now, although I do have a chronic cough which I attibute to smoking in Mexico city with all of the pollution. I also have c. Pneumonia antibodies...high titers..which I am sure contributes to that.
Wish I had never done it, I was surrounded by smokers as a child. Now I am just trying to get a handle on my life again but am very sick and cant do much. I will start the Valcyte on Sunday. I am a little nervous about how it is going to affect me but have set up a support system and all I can do is hope for a cure!
It was too painful for me to be on my computer sitting up for any length of time so I got an Air Desk and a laptop and rigged it up over my bed so I can type laying down with my elbows propped up on some pillows. Its a little precarious but does wonders for my back pain and keeps me connected with people even though I am laying down.
FMX smoker...I quit the first time before I was sick, I was practicing yoga and meditation and smoking gave me a migraine. Then I started again years later when I was living in Mexico for a few years and surrounded by smokers. This time, I took wellbutrin, used the patches and listened to the tapes and was able to quit, although I was still smoking in my dreams for quite awhile afterwards. Its been 10 years and smoke free now, although I do have a chronic cough which I attibute to smoking in Mexico city with all of the pollution. I also have c. Pneumonia antibodies...high titers..which I am sure contributes to that.
Wish I had never done it, I was surrounded by smokers as a child. Now I am just trying to get a handle on my life again but am very sick and cant do much. I will start the Valcyte on Sunday. I am a little nervous about how it is going to affect me but have set up a support system and all I can do is hope for a cure!
Sorry everyone, I repeated myself a bit in first paragraph from my last post. I didn't realize it was so close. :)
Well I've had the diagnosis since 11/05 and even my dr. feels its been a lot longer in hind sight. We had just kept trying things year after year, she kept telling me your life is so busy you have a family...... It took me telling her: "I feel like I'm dying"...then she really goes to work and I find out in a week. CFS
Managing myself: So its trial and error. But I seem to really have a hard time still judging my energy and knowing when to back off even after 2 years. I have 3 kids oldest is 12 so she is a huge help, than 8 year old and my youngest is 4. Obviously your pushing, pushing daily to meet mom demand.
What things are you all really changing to make a difference in your energy and strength?
Cause if I feel good and it's sunny out, I'm strapping the kids bikes to the rack and we head for a trail and ride a little while or go for a walk..............Then not feeling well strikes again.
I know I need to rest and to not over do so I can get better, but I also don't have the luxury of getting to push a pause button on the remote to stop time so that their lives just don't pass me by!
Anyone else have kids, what works well for you?
Managing myself: So its trial and error. But I seem to really have a hard time still judging my energy and knowing when to back off even after 2 years. I have 3 kids oldest is 12 so she is a huge help, than 8 year old and my youngest is 4. Obviously your pushing, pushing daily to meet mom demand.
What things are you all really changing to make a difference in your energy and strength?
Cause if I feel good and it's sunny out, I'm strapping the kids bikes to the rack and we head for a trail and ride a little while or go for a walk..............Then not feeling well strikes again.
I know I need to rest and to not over do so I can get better, but I also don't have the luxury of getting to push a pause button on the remote to stop time so that their lives just don't pass me by!
Anyone else have kids, what works well for you?
My EBV titers were off the charts. I know the CDC says that if you have EBV and still have chronic fatigue (not to mention that other symptoms) for at least 6 months, then you should talk to your physician about CFIDS.
I haven't tried that SamE product yet.... I can't now because I'm on this research protocol, but after I finish the protocol, I plan on going back to my Naturopath.
Grailhunter : you said you tested positive for EPV and yes it its in everyone system but at high levels and if it's not going away its usually Chronic Fatigue Syndrome.
I told my dr for years how fatigued I was year after year until 11/2005 I went in and told her I was dying. (I'm 32 (at the time) have 3 kids I've always been really active worked out, had a job)... but I feel like I'm dying. So she ran a bunch of blood work and one for Eppstein Barr and it came back high like 200, and then we re-took it in 4 weeks. Just incase it was reactivated mono. Came back 195 super high. There are only two reasons for it reactivated mono and CFIDS - I knew I had CFDS.
I immediately went to the Fibromyalgia & Fatigue Center www.fibroandfatigue.com and they did a whole work up of blood somewhere around 50 tests. Anything from EBV, lyme, candida, lupus, hormones- checking everything to make the most educated decision.
I was most impressed, and by the fourth visit most people have marked impovements. I'm a bit harder case to crack but I stayed there for about a year always getting great care. They do mostly holistic metheds for treatments and IV therapies. Heberal suppliments and use a compounding rx for others items needed. Worth looking into for one in your area since they specialize completely on these illnesses!
Everyone is different but I wanted to mention my cousin uses a product called Sami for his Fibro and changed his enviornment completely by moving and has gone totally vegan and has improved by 90% in like a 2 month period.
I told my dr for years how fatigued I was year after year until 11/2005 I went in and told her I was dying. (I'm 32 (at the time) have 3 kids I've always been really active worked out, had a job)... but I feel like I'm dying. So she ran a bunch of blood work and one for Eppstein Barr and it came back high like 200, and then we re-took it in 4 weeks. Just incase it was reactivated mono. Came back 195 super high. There are only two reasons for it reactivated mono and CFIDS - I knew I had CFDS.
I immediately went to the Fibromyalgia & Fatigue Center www.fibroandfatigue.com and they did a whole work up of blood somewhere around 50 tests. Anything from EBV, lyme, candida, lupus, hormones- checking everything to make the most educated decision.
I was most impressed, and by the fourth visit most people have marked impovements. I'm a bit harder case to crack but I stayed there for about a year always getting great care. They do mostly holistic metheds for treatments and IV therapies. Heberal suppliments and use a compounding rx for others items needed. Worth looking into for one in your area since they specialize completely on these illnesses!
Everyone is different but I wanted to mention my cousin uses a product called Sami for his Fibro and changed his enviornment completely by moving and has gone totally vegan and has improved by 90% in like a 2 month period.
"I totally agree with your comments about something in our "today's" world that is causing this epidemic of CFS and fibromyalgia."
I agree with you guys as well. I know that physicians' are looking into global warming, vaccinations and other possible causes of immune dysfunction.
I agree with you guys as well. I know that physicians' are looking into global warming, vaccinations and other possible causes of immune dysfunction.
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