Guest guest Posted June 13, 2011 Report Share Posted June 13, 2011 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2011 Report Share Posted June 16, 2011 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. > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.