Chronic Lyme Disease Summit 2

Good grief!

I just spent a half hour lurking on one of the fibromyalgia groups I belong to. Good grief! I am thinking more and more of just quitting that group, and the "big" doggie group, too. They're just too big. People are always in-fighting, getting into disagreements and disputes, and repeating the same "advice" (meaning: advice disguised as non-advice so as not to piss off the moderators and their almighty rules) over and over and over again.

Now, let me say that I also belong to a number of smaller groups on the same host platform. These are offshoots of the bigger groups, many times formed by people who left the larger groups. I'm talking about both "doggie" groups and the various FM/CFS groups. The smaller groups are delightful, and I truly enjoy being there. There is never any in-fighting, rarely a misunderstanding, and even though we are virtual strangers there is a sense of friendship. It is the large groups (2,000 - 3,000 members) that I'm complaining about.

Sometimes FM/CFS patients are on so much medication, it just has to be exacerbating their pain and fatigue. I'm a proponent of alternative remedies, home remedies and as little medication as possible. I detest the pharmaceutical companies and their endless television commercials for the latest drug to "ask your doctor" about, followed by a laundry list of side-effects, most of which are also fibromyalgia symptoms! How the hell would you know the difference?! (My favorite is the addition of "death" as a side-effect, as the announcer rattles off his or her list, adding "death" at the end of the list, as if it's just another side-effect, no big deal... and like it's the period at the end of a sentence. A Death Sentence.)

Every prescription drug I've ever taken (and that's not many) has given me such horrendous side-effects, I simply don't know why anyone with a chronic nervous system disorder such as FM or CFS would take such powerful drugs. Many patients take multiple medications besides. Many people report that the drugs don't relieve their pain -- and so, I ask, what is the point of taking the drug then? If the person is in as much pain with the drug as I am without drugs, then why risk all of the side-effects and potential damage to organs, etc. etc.?

Perhaps we are not hearing from the fibromyalgia patients whose drugs ease their pain because they haven't had to join an online group to get help. But since little help is available in the "real" world due to the stigma attached to this invisible and deblitating condition, the online groups appear to be one of the few resources of information available, particularly for people who can't easily leave their houses or even so much as walk.

So, I'm at the Big Group, thinking these thoughts, just lurking, not posting (I hadn't gone there since Monday and there had to be over 1,000 messages) when all of a sudden the message board comes up with "sorry we cannot process your request". Hah! I logged out, and back in again. Same thing! If that isn't a sign, I don't know what is. I'm thinking about dumping that group, and the large doggie group as well. It is so liberating to express myself here, and not have anyone telling me I've crossed a line or broken one of their rules.

But once I quit the group, then what will I write about here? lol

While reading all the postings from the last few days, I'm sitting there yelling (on the inside): "yoga!! drink more water! get extra sleep! listen to music! get off the medication! get on with your life!" (Someone said it to me in an email this morning: Life is too short.) I've seen this phenomenon before -- in AA. Group members would be "stuck" in their disease, not moving forward. Sober 15 years and still struggling with the fact that they want a drink. Similarly, someone diagnosed with FM, no medication is easing the pain, and yet they continue to take it, continue to stay up all night, and remain a member of the commiseration association and wonder why they're so uncomfortable and not getting better. (BTW, I was up all night Wednesday night in excruciating pain, so I am not trying to insult anyone -- I am right there with you.)

Since there is no cure for fibromyalgia or chronic fatigue syndrome, we need to learn to live with the syndromes as best we can, and stop dwelling on the negatives (the pain); stop making ourselves more tired and achy by clicking on a mouse, hunched over a computer for 60 minutes or more each day, increasing our pain because of our posture and ergonomically-incorrect seating and positioning, when we should be trying to feel better.

I have to qualify this by saying that when I first joined the large group, I had so many questions and problems, and everyone there was so helpful and compassionate. I learned a lot, and will be forever grateful, and know where to turn if I need help again. Just like AA -- I will never forget the help I got there all those years ago, and I continue to be a supporter of the AA program. I still "practice the AA principles in all my affairs", even though it's been years since I attended a meeting. But, as with AA, I prefer the smaller "meetings".

I'm not saying that I feel better. I don't. I'm in pain constantly, and a myriad of other symptoms not the least of which is annoying IBS which makes it impossible to eat meals outside of the home most days. What I'm saying is that this is the hand I've been dealt, and I need to live with it, work with it, change some of my lifestyle, the foods I eat, when I eat, how much I sleep, reduce stress, exercise,etc. and develop a positive outlook without making the drug manufacturers rich in the process.

Good grief and good night!

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