Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Hi y'all,
I'm new to this blog and to blogging in general. I have CFS and I'm not sure what else. I tested positive for lupus, but I don't have full blown lupus. I have RA - hips, knees, ankles hurt something fierce sometimes, but I'm still mobile. I had a stroke (in late 2009. I think). The stroke was in my left temporal lobe, but it didn't hurt me as much as it would your average person. When I was 18, I had a nearly fatal car accident -- crushed skull, left temporal lobe. The neurologist said that when I had the stroke, my brain had already trained itself to reroute everything, so I recovered quickly.
My husband is retired army, so I see doctors at a military hospital (a 38 mile drive, one way). That means my PCP changes every couple of months: stop. rewind, play, here we go again.
I have a good PCP right now, but I don't know how long he'll be around. The PCP I had when I first got sick in 2009 said a had a little bug and I'd be fine in a week or so. The next one thought I had Lyme disease, so I went on doxy for 6 months. The next PCP kept telling me that I just had a combo of allergies and arthritis. I badgered him until he took some x-rays and didn't like what he saw and started referring me to specialists. We found out I'd had a stroke in late 2110. I tested for lupus in 2011.
I'm just beginning to learn about CFS, RA, and FM. (To be completely honest, I was one of those who thought CFS and FM were hypochondrias until I got sick. Now, I wish every non believer could catch 'em for a month or so, just to get a little taste.) So, please educate me. But be advised: my goal is not to accept reality, but to change it.
I live in the boonies. There are no support groups that I know of anywhere near me.
Sorry this is so long -- sometimes I don't have sense enough to know when to stop!
I'm new to this blog and to blogging in general. I have CFS and I'm not sure what else. I tested positive for lupus, but I don't have full blown lupus. I have RA - hips, knees, ankles hurt something fierce sometimes, but I'm still mobile. I had a stroke (in late 2009. I think). The stroke was in my left temporal lobe, but it didn't hurt me as much as it would your average person. When I was 18, I had a nearly fatal car accident -- crushed skull, left temporal lobe. The neurologist said that when I had the stroke, my brain had already trained itself to reroute everything, so I recovered quickly.
My husband is retired army, so I see doctors at a military hospital (a 38 mile drive, one way). That means my PCP changes every couple of months: stop. rewind, play, here we go again.
I have a good PCP right now, but I don't know how long he'll be around. The PCP I had when I first got sick in 2009 said a had a little bug and I'd be fine in a week or so. The next one thought I had Lyme disease, so I went on doxy for 6 months. The next PCP kept telling me that I just had a combo of allergies and arthritis. I badgered him until he took some x-rays and didn't like what he saw and started referring me to specialists. We found out I'd had a stroke in late 2110. I tested for lupus in 2011.
I'm just beginning to learn about CFS, RA, and FM. (To be completely honest, I was one of those who thought CFS and FM were hypochondrias until I got sick. Now, I wish every non believer could catch 'em for a month or so, just to get a little taste.) So, please educate me. But be advised: my goal is not to accept reality, but to change it.
I live in the boonies. There are no support groups that I know of anywhere near me.
Sorry this is so long -- sometimes I don't have sense enough to know when to stop!
You certainly have been through a lot! Many of these diseases have symptoms that overlap. It's hard for our doctors to sort it all out. Takes years, sometimes.
Still, I hope you do not have to deal with CFS/FIBRO on top of all you have already suffered.
Welcome again! We're here for you!!
Welcome to our group. We do lots of sharing of hurts, giving of support, and sharing of what helps our symptoms.
My personal favorite is pacing. You have probably heard of it by now. Just in case you haven't my favorite description of learning how to pace yourself is at about.com in the cfs section.
Pacing seems to be the one thing that helps everyone with cfs. All other treatments don't help all of us. Of course you have to do the right kind. Pacing back and forth bad. Figuring out how much you can do without feeling worse good.
Most of us this is our only support group. Perhaps more of us would try to form live support groups if we weren't so darned tired. Then again if we weren't we wouldn't need it. Doesn't seem quite right, does it?
Accepting the reality of this illness is key in learning how to successfully live with it, and that's the hardest part. Perhaps it's just your attitude about it that you can focus on changing. And yes, educating yourself is important, knowledge is power, and with gaining as munch knowledge as possible about how this illness affects you, you have the power to make the best of what you can, and know what you cannot change.
I wish you luck on this journey.
Having had this disease for around 20 years I can only emphasise what is posted above, namely that "accepting the reality of this illness is key in learning how to successfully live with it". You can't fight it because it will win every time. You've gotta learn to go with the flow.
and still learning...