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12/03/2011 07:22 PM

12 yrs of CFIDS but this is my 1st support forum!

ohsnapPosts: 1
New Member

Hi! This is my very first support group type thing of any kind, so I'm a bit excited and very curious to see how it goes.

I was diagnosed with CFIDS when I was 13 so I'm ashamed to say that I am so used to variety of symptoms, I tend to dismiss anything weird, painful, or annoying as a CFS thing and just ignore it. I've recently began to see the effects of symptoms I've had for ages, so once again, CFS is rearing it's head and interfering in my day-to-day. I'm very interested to hear what types of symptoms other people deal with and what sorts of treatments they use.

I look forward to hearing from people! Smile


12/05/2011 01:44 AM
Posts: 21

Hi I'm somewhat new to this thing too! I have had CFIDS for 10 years, and for a long time I was really fairly symtom free except for having to pace myself and sore aching pulsating lymph nodes in my armpits. Then 3 years ago I came down with new wierd symtptoms that really hurt. Was then diagnosed with Fibromyalgia, ostearthritis, and major back issues. The CFIDS was kept at bay for many years with Amitriptyline, but that doesn't seem to be working for me anymore. Sleep is very elusive.

Welcome to this forum! You will find so many warm hearts here. Listeners, people who truly understand and are willing to share. It's been the support that I feel I can't get from most of my friends or family, simply because unless they walk in your shoes, they just don't understand the emotional ups and downs associated with a chronic illness.

Sorry for the long chat, but congrats on choosing to learn more about this crazy world of CFIDS Laughing

12/05/2011 10:07 PM
Posts: 2012
Senior Member


Hi and welcome to the group. I have found a lot of mental anguish has been relieved just be being able to talk about problems with people who are going through the same thing. This is a warm, supportive group, no sniping or bad karma here. It's a safe place to gripe, ask questions, share your story, your day etc. Hope to hear more from you and jump in on any discussions that interest you. Don't be shy, we all benefit from everybody's input.

Hope to hear from you soon.


02/07/2012 10:15 AM
Posts: 114

Hey ohsnap,

Welcome from another newbie [to the group, that is, not the illness].

I hate to say it, but I feel like your story points out a major problem with CFIDS -- it can mask other illnesses. We have so many aches and pains in so many organ systems that we can't tell when something else is really going wrong. That's downright scary. There's no law that prevents us from coming down with cancer, heart attack, stroke, diabetes or any of the other biggies.

We've got to stay watchful and alert to things that go beyond our "normal", and push our docs to check for more. Sorry for being a downer, but better safe than sorry.

So extra hugs all around.


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