My daughter Shelly...

[Guest guest]

I love my daughter with all my heart and soul. has been diagnosed

with many illnesses throughout her 39 years of life that we have tried to

understand and deal with. Seeing your loved one experience constant pain is a

fate only second to being the one in pain. My dear child has an intimate

relationship with the medical establishment, which is completely baffled by the

ailment called fibromyalgia.

's experience with fibromyalgia started when she was given Cipro for a

bladder infection. Her autoimmune issues before that time were being managed

well. After the doctor started her on Cipro she started to spiral downward

almost to death. Either she was allergic to the Cipro or was experiencing what

the clinical trials showed were possible side effects to this drug. She was

hospitalized because the ER didn't know what was causing her extremely low blood

pressure and pervasive pain. She noticed that after each doseage of Cipro her

blood felt like it was on fire and the doctor wanted her to continue taking it.

Finally she refused and she regained her strength. Since that time she has

experience constant pervasive pain that doesn't go away even with very high

doses of narcotics. She believes the Cipro caused it. The clinical trials

showed the drug caused blown tendons. Please do not take this drug or allow

your loved ones to take it. Since it is effective on many bacterial infections

it is prescribed very much.

Since fibromyalgia is believed to be caused by the central nervous system

overfiring shouldn't it be managed by medicine effecting those receptors? Yet,

the FDA hasn't approved Neuontin for fibromyalgia! tried some Neurontin

obtained from a friend that is prescibed it for foot pain caused in an

automobile accident. It worked. 's rheumotologist won't listen to her

input regarding medicines because he is the expert...but he doesn't experience

the pain.

I'm tired doctors who can name diseases but can't cure them.

Thanks for letting me vent.

, Mom of a fibromyalgia sufferer.

[Guest guest]

HI :

I am probably your age but I think my life has been like your daughters.

Always in pain since I was a child. I believe mine began with digestive

disturbances. I recently found out I have Celiac. This means I cannot

digest grains without inflammation. Especially wheat. Eventually I will be

able to eat gluten free foods but for now I¹m off all grains.

If a drug started your daughters fibro it doesn¹t mean its impossible to get

rid of it. There are many toxins out there and we are all being exposed to

one toxin or another. Its our immune systems that are not strong enough.

Stress lower our immune system. What a vicious cycle that is? We are

stressed by out pain, we need a stronger immune system, but stress lowers

our immune system. Whoa!

Doesn¹t sound like fun does it. But you know if you investigate all the

solutions on this web site especially the ones Joanne steers you towards you

may find some relief for you and your daughter. You should find a care

giver group for yourself. You are under tremendous stress worrying like

this about some one you love more than life itself. I know this because I

have children too and even when they are grown we still worry over them more

than our self. There are care giver groups out there and maybe ask a

hospice for some help on where they may be.

I have heard that something called Neurofeedback works for nervous system

disorders. I tried it myself and I did get tremendous results. Tremendous!

I¹m not sure where you live but check it out on google. This adjusts your

brain wave patterns. I had stress as a kid that was pretty severe so after

neurofeedback I felt plenty of relief from that. And as a result the pain

is lessened. I don¹t feel so stressed over pain when I get it now

So, hang in there and you will find you have plenty of friends on here. Be

sure and ask questions and probe all the information available here. It

does help and some people like Joanne are completely different, myself too,

from when we began on this list.

Good luck and keep talking to us. It does help just to vent.

Sincerely,

rosemarie

On 6/13/11 4:03 PM, " denise000000@... "

wrote:

>

>

>

>

>

> I love my daughter with all my heart and soul. has been

> diagnosed with many illnesses throughout her 39 years of life that we have

> tried to understand and deal with. Seeing your loved one experience constant

> pain is a fate only second to being the one in pain. My dear child has an

> intimate relationship with the medical establishment, which is completely

> baffled by the ailment called fibromyalgia.

>

> 's experience with fibromyalgia started when she was given Cipro for a

> bladder infection. Her autoimmune issues before that time were being managed

> well. After the doctor started her on Cipro she started to spiral downward

> almost to death. Either she was allergic to the Cipro or was experiencing

> what the clinical trials showed were possible side effects to this drug. She

> was hospitalized because the ER didn't know what was causing her extremely low

> blood pressure and pervasive pain. She noticed that after each doseage of

> Cipro her blood felt like it was on fire and the doctor wanted her to continue

> taking it. Finally she refused and she regained her strength. Since that

> time she has experience constant pervasive pain that doesn't go away even with

> very high doses of narcotics. She believes the Cipro caused it. The clinical

> trials showed the drug caused blown tendons. Please do not take this drug or

> allow your loved ones to take it. Since it is effective on many bacterial

> infections it is prescribed very much.

>

> Since fibromyalgia is believed to be caused by the central nervous system

> overfiring shouldn't it be managed by medicine effecting those receptors?

> Yet, the FDA hasn't approved Neuontin for fibromyalgia! tried some

> Neurontin obtained from a friend that is prescibed it for foot pain caused in

> an automobile accident. It worked. 's rheumotologist won't listen to

> her input regarding medicines because he is the expert...but he doesn't

> experience the pain.

>

> I'm tired doctors who can name diseases but can't cure them.

>

> Thanks for letting me vent.

>

> , Mom of a fibromyalgia sufferer.

>

>

>

>

>