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...

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FIC 04/26/2009

OK, dr wouldn't listen to me in beginning when flare started. I was told to take PT. Can you believe that?

Anyway, finally after rest and doing all I could at 3 wks I finally located a FNP willing to give me a Pred shot and Pred Pak. However, at that point, the CFS flare had been let go to long and this didn't bring me totally out of it. I did find a 2nd Pred Pak and am on day 4 of it but I am still feeling totally wiped with the least little bit of exertion. Is CFS so critical after being let go that it takes something else to turn it around? I'm looking at week 6 of this flare!!!!!

I see a new DO who is local and willing to "take me on" and only pray he can help. So, how do I handle this? The only way to TRULY get away and rest is if they'd give me steriods or a Kenalog shot and put me in the hospital so no one could get to me with strict orders of complete rest no visitors.

IDEAS?????

deleted_user 04/26/2009

Is there a reason you can't rest in your home?

FIC 04/27/2009

YES! My daughter, who suffers from claustrophobia as well as phobic of being alone, was told by her dad before he & boys went camping, I was ill, not to call, I desperately needed rest. Did she listen....NO. She had had a lumbar puncture with complicatons so I did ignore most of the calls but then the fear that something serious had again occured related to the lumbar puncture. She then had a total melt down because I kept refusing the calls crying and begging what had she done that I wanted nothing to do with her.

It took forever to calm her down and get her to understand I was NOT AVOIDING HER OR ANGRY WITH HER OR HATED HER but was very ill myself and doing my best to rest so I didn't end up in the hospital. After a looooooong repetitive conversation, she finally understood.

Also, because I "look fine" husband has said to oldest son "I will watch the grandson." and this translates to him watching him until he can take no more of a 2 yr old and I am stuck.

So, see, the nut farm looks lovely, really. And I also hear that the library is grand as is the arts/crafts program. I just hope I get there before I am so far gone I can't appreciate the ammenities. LOL

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