ABQ Fibromyalgia/Chronic Fatigue Support Group

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19 Comments

Comment by Laura on October 31, 2009 at 9:37pm

Hello to all members and welcome to new members!

Comment by Eve M. Marshall on August 18, 2009 at 12:44pm

Hi Laura, good to see you back!!

Comment by Laura on August 18, 2009 at 6:57am

Hi all! Been away on vacation for a few weeks. Back to the real world now!

Comment by Laura on July 14, 2009 at 9:19am

Eve - Isn't it the case that we are 100% more informed and knowledgeable about these conditions than perhaps the entire medical community? How frustrating! -L.

Comment by Eve M. Marshall on July 9, 2009 at 11:13pm

Unfortunately, I do not, there is a Clinic here in Colorado, the only one I might add, that treats the disease, but I cannot afford the $400 plus a month to go, and Medicare does not cover the cost because its a private clinic. When I went there they confirmed I had CFIDS and that info I took to the Social Security Disability Judge and he deemed me disabled and unable to work. I kinda feel that the last nail went into my coffin and everyone is waiting for me to fill it and take me to the cemetery and put me in a hole. As I want cremation, that stinks for them!! lol But my GP knows nothing about CFIDS and my last GP refused to treat me and cut me off from all my meds cold turkey, risking heart failure and possible death because of her lack of knowledge and refusal to learn about it. Now on medicare its rather hard to find a GP that will take the time to help me. So to the back burner I go!!

Comment by Laura on July 9, 2009 at 10:20pm

Eve, wow, I can totally relate to the doctor experience. I saw a rheumatologist at Pres that I wasn't fond of and then I saw Jacqueline Dean and I really liked her a lot. My primary is also a really caring guy and he's the one who prescribes my meds for me now. Do you have a good primary?

Comment by Eve M. Marshall on July 9, 2009 at 9:57pm

Oh Laura, where can I start?? Finding a doctor that will treat the disease would be great, one who is willing to learn about it instead of kicking you to the wayside and leaving you to deal with it on your own because they don't have a clue or they are not convinced that it is a disease at all. And then getting Medicare to pay for it!! Its an expensive disease so I have now got to the point where I pretty much suffer in silence, and make do with what I have. And to get the "men " in my life to truly understand, well, that is asking for a lot!! lol. Thanks so much for just being here, that is good enough for me!

Comment by Laura on July 9, 2009 at 8:52pm

Eve - Welcome to our group! What kind of help are you looking for right now?

Comment by Eve M. Marshall on July 9, 2009 at 7:15pm

WOW! finally a group just for us!!. This is the first support group for CFIDS I have seen! I hope I can help anyone who suffers this horrible curse, as I hope I can find anyone who can help me!!

Comment by Laura on June 26, 2009 at 8:14am

Hi Everyone! Just checking in. Summer has been busy. Not sure if I'm liking all the wet, rainy weather. -Laura

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