To all 40ish women here!

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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To all 40ish women here!

Postby speg on July 7th, 2004, 9:25 pm

I've noticed several of us are around the same age. I thought we might start a thread!

Peg, 42
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gals, 40+

Postby momx6 on July 7th, 2004, 11:21 pm

I just turned 43, do I qualify? :D
I never dreamed I'd belong to a group like this.
This is a strange ailment, do you get strange looks when trying to explain this to people?
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Postby Saundra Hearn on July 8th, 2004, 5:48 pm

I'm 43, and yes I get strange responses to this, this is the craziest thing I have ever encontered!! Nevver heard of such a thing until I started over 3 months ago.
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welcome to our strange club

Postby momx6 on July 8th, 2004, 6:55 pm

Saundra,
It is astounding how many of us there are. I wonder if there is a vaccination link. It is the one thing we all had (probably) in our backgrounds.
I can't recall the older generation (our grandparents) having this kind of thing. I would think someone would remember someone speaking up about this condition.
Just another thought among many.
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Postby Jayel on July 9th, 2004, 6:23 pm

Hi gals-

I just recently turned 42 and started this funky thing last fall at a tender 41, ha! I think that CIPRO may have had an impact on me--Gary has given me lots to think of!

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cipro

Postby momx6 on July 10th, 2004, 1:18 am

It does seem that many have the antibiotic connection, but so many don't.
I have been on a great deal of antibiotics in my life-including massive doses for viral meningitis a while back.
It seems it is some autoimmune response to something. I still think vaccinations should be considered. I actually stopped childhood vac's on my kids for a while, when my pediatrician, not so nicely, dismissed me from his practice. I was glad to leave anyway. I resumed them only when they were a little older and their immune systems more mature. I do feel strongly that there is a link to all these weird neuro and immune disease we seem to be seeing so frequently. I would at least like to see the medical community step back and look and question a little more.
My father has 5 siblings and they are all in their 70's and 80's. Nothing too abnormal in their health, and I know they never had childhood vaccinations.
anyone else have thoughts?
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Postby Ginlyn on July 10th, 2004, 2:08 am

Hey all!

I'm 42. JUST turned (notice emphasis on JUST :D

Good Idea Peg. We can have a little 40 something twitch club.

Ginny
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Postby Ava on July 11th, 2004, 11:13 pm

Count me in ladies - I just made the cut at 40 years old. Don't ask me why but I considered most of the posts on this message board from people younger than myself but here we are, ladies of a certain age, twitching together.

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Postby speg on July 12th, 2004, 11:01 am

Hello!

Well, there are quite a few of us! And we don't really fall into the "textbook" age range for some of the major neuro diseases . . . which I don't think any of us have. Maybe it is hormonal? I have not taken any antibiotics, no illnesses or a virus of any sort. I am a firm believer that anxiety can cause it. I went through a VERY stressful period over the past six months. I was also on an SSRI for a couple of weeks. That is when it started. I've read sometimes certain drugs can trigger it, and then it hangs on forever. Plus I lost 35 pounds recently. I am a back/neck patient. So many possibilities, yet I fear the worse.

I'm still worried about this (only 7 weeks for me) and I am trying to get pregnant right now. I don't need the added stress!

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hormones

Postby momx6 on July 12th, 2004, 12:19 pm

If it is hormones how would you explain all the males with this.......
I still think it is vaccination related. The vaccines must do something to our immune system that takes decades for it to show. It may be triggered by stress/medications/weight gain or loss. If children can be harmed or killed by them, it wouldn't be too surprising if we aging boomers( or younger people too) could experience some latent side effects. I suppose BFS is less harmful than polio, german measels etc.......so why would the medical community care too much?
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Postby speg on July 12th, 2004, 12:38 pm

If it is hormones how would you explain all the males with this.......

I don't think the same thing causes it in everyone. I think there are many possible causes of benign twitching.

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Postby Ginlyn on July 12th, 2004, 9:32 pm

I agree with you, Peg.

I believe there can be a whole host of different reasons ranging from genetics, stress, to even possible allergies? Who knows?

Even our docs do not know for sure.
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Postby speg on July 14th, 2004, 10:34 am

By any chance, are any of you trying to get pregnant? I am. I had a miscarriage last October and the stress from it triggered all of this.

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Postby Ava on July 14th, 2004, 4:11 pm

Peg,

I am not trying to become pregnant as we have been blessed with a full household - two daughters ages 10 and 4 and one little boy age 7, however I just want to offer you some support.

I had one miscarrage about a year ago (pregnancy was not planned) and it really hit me hard. Somehow, as much as I cared when friends went through this, I didn't realize the deep sense of loss and love you have for the little one you imagine having from the day the ept is positive. It's clear to me how the stress of this could trigger or aggrevate bfs.

I would think, at least for me that the adventure of conceiving, carrying and having a new baby would be incredible and hormones aside, I would think the twitching would simply take second string to the pregnancy. A wonderful focus instead of one that can be so hard. I had such great pregnancies with hormones that, after week 10- 12 made me feel wonderful that I would imagine they could make my twitching disappear. Wishful thinking? Probably. In any case, I envy you trying for a baby. There is simply nothing better.

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Postby Arron on July 14th, 2004, 7:26 pm

If it is hormones how would you explain all the males with this.......


Sorry, I'm not a woman, but I did stay at a Holiday Inn last night :-)

I have to question the quote above. Are you saying males don't have hormones??? You could not live without hormones, which is why it is difficult to live with your thyroid gland removed. You have to go on all kinds of synthetic hormones to stay alive, and that goes for men and women. EVERYONE has hormones and there are many bodily "chemicals" that we haven't even discovered yet. if we knew the make-up of everything, we would also know many more causes to things like cancers, tumors, diseases and so on, but we don't. We tend to get a little "*beep*" sometimes in thinking we know everything about our bodies and the fact is, we only know a little and we are just now getting down to the cellular make-up of DNA and the even newer discoveries of MUCH more importance, complex protien strains.

At first it was thought that all of the "keys" to life were in DNA, but now the medical community is focusing on extremely complex protien strains, whch ARE the very make-up of each and every one of us, and what dictate how we are and how we end-up in life.

These protien strains are much smaller and much more complex than DNA has ever thought of being, and this BFS stuff and many other "diseases" could be a simple "shift" in a sub micron protien strand change, and nothing more. Who knows? And frankly, who cares? It's benign! So don't expect the medical community to drop their studies on cancers, lukemia, muscular distrophy, birth defects, AIDS and so on to go find answers for some benign condition that "inconveniences" a hand full of people in a multi billion people population, whith children and people dying of MUCH worse things in life.

Of course it would be "nice" to know what this stuff is and/or what causes it, but on the other hand, I would be pretty upset if a research company somewhere dropped their research on life threatening / crippling things that people battle everyday to find some answers for a few thousand people with a condition that hasn't killed or crippled one single person yet.

Watch the commercials for St. Jude's Childrens Hospital with Marlo Thomas on TV (who I donate $ to every month) and while you watch it, ask yourself what causes BFS and if there will ever be a cure for it as you see the faces of dying children and broken-up families who are battling REAL diseases, and see if you don't feel a bit selfish wanting the mnedical community to find a cure for this benign stuff...
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