Guest guest Posted May 28, 2001 Report Share Posted May 28, 2001 Welcome to the group. This is a nice, supportive group and you'll enjoy their sharing experiences and suggestions. Sorry about your situation. I lost my husband because of FMS after a forty year marriage and now I don't qualify for disability. Life is hard for a great many of us. We're here to help and just be a shoulder to cry on. Kate New to the Group > Hello Everyone. > > I have had symptoms of fibromyalgia most of my life. I am 40. I was diagnoses about 5 years ago after spending thousands of dollars on doctors, tests and hearing all the usual stuff about it all being in my head. I have come here for hope and encouragement. I am not any use to my children or husband in the condition I am in. I am always tired and sick. I recently quit my job because I couldn't take the physical pain anymore. We are now forced to live on one income and I am very concerned about the future. Thank you all for being here. > > > Candy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2001 Report Share Posted May 28, 2001 Welcome to the group. My daughter has Fibro and life is just short of hell for her. I may have it, too, but no one thinks I do..I'm just lazy, depressed or whatever else they can think up. Inside I KNOW I have dreams and desires to get up and clean the house or go take a walk on a pretty night, but my feet hurt or I'm too tired and actually break out in a sweat when I over do. But that's just hot flashes...NOT! We know how we feel and we know it's not normal...but no one is welling to say they don't know what it is, but that it's real! All I know is that more and more people are getting the same symptoms, where it will soon be an epidemic...maybe THEN someone with a heart and brain will admit it exists! We love you for yourself...sick or well, so stick around and bellyache all you want...cause that's all that helps some days. If you have a good day, let us know why! LOL We're all willing to listen and try whatever might improve our lives. Glad you wandered in...so sit and stay a spell and visit or just read..whatever helps YOU! ((((HUGS))) BJ (a grandmother of one 6 year old who MAKES me keep going! ) New to the Group Hello Everyone. I have had symptoms of fibromyalgia most of my life. I am 40. I was diagnoses about 5 years ago after spending thousands of dollars on doctors, tests and hearing all the usual stuff about it all being in my head. I have come here for hope and encouragement. I am not any use to my children or husband in the condition I am in. I am always tired and sick. I recently quit my job because I couldn't take the physical pain anymore. We are now forced to live on one income and I am very concerned about the future. Thank you all for being here. Candy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2001 Report Share Posted May 28, 2001 Thank you Kate for the welcome. I tried to get disability several years ago, but my doctor doesn't think I'm sick enough. I think he believes that I am exaggerating the pain. I am looking for another doctor. this is very disappointing because I've been with him for quite awhile and he was the one who finally diagnosed me. On my last visit, he told me there was nothing more he could do for me, and wished me a good life. I walked out of his office stunned. I am currently taking Celexa, Klonopin and Flexeril. I want to wean off of these meds and use something natural, herbs etc. I have no health insurance since I lost my job so I need to do something because the meds I am on are very expensive. I'm not sure how to wean myself off of these meds, doesn't anyone have any ideas. I know that no one here is a doctor, and I will be calling mine tomorrow to ask him about going off the meds. I don't think they are helping do anything except keep me sedated. I want my life back. I've suffered from this problem for so long that I was too young to even know what life was. At 40, I am ready to start finding out. Candy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2001 Report Share Posted May 28, 2001 Hi Candy-- Welcome to the group! You've come to the right place. Not only is this a great place to get support for those bad days, but you'll find lots of info here from people who are actually getting well. From this list and from the lists at St. 's, I've learned TONS that has contributed to me having MUCH better days. While I can't even begin to list all the theories of FMS, I'll post just a few here that have made sense to me, and that I'm either currently acting on or plan to in the future. 1) The Guaifenesin Protocol: This is outlined pretty much in its entirety on the web site www.guaidoc.com. In a nutshell, Dr. St. Amand, who wrote " What Your Doctor May Not Tell You About Fibromyalgia " (get this book), and who has had FMS himself most of his adult life (he's 70), poses a convincing theory that because of a genetic defect, FMS patients build up phosphates in their bodies, which over the course of time make us very very ill. He's found that the drug guaifenesin has resulted in a complete reversal for many of his patients. It's a regimen that requires some study, but I've been feeling better in the seven weeks I've been on the protocol. We'll see how I do long term. Read the book, go to the site, and eventually join the " guai support " and " fms recovery " lists at http://maelstrom.stjohns.edu. 2) Mercury toxicity: This makes incredible sense to me, and I'm sure it greatly contributes to FMS. I've emailed with a number of patients who experienced dramatic improvement from having their fillings out and doing chelation. While I had my fillings out 15 years ago, I never went ahead with chelation because of cost. This is something I'm going to revisit, as I'm very impressed with the recovery reports. 3) Mycoplasma infections: People with FMS are known to have these infections in much higher proportion to the general population. They're essentially blood cell infections that can hide from our immune systems. They may explain why I felt so great while on the antibiotic Zithromax for a sinus infection. Zithromax is used to treat mycoplasma infections, so that sounds like a connection to me. Other patients have reported great results with intestinal cleanses and the like; taking undenatured whey as a supplement to guaifenesin (some speculate whey is a natural mercury chelator); and taking thyroid medication, even though their thyroid tests are normal. (One theory of FMS is that while the body is producing enough thyroid hormone, it's not absorbing it.) I certainly don't mean to overwhelm you with info, but I'm hoping that you'll be inspired to know that many people feel MUCH better once they've found what works for them. The bottom line is that there IS hope, which I know is what you came here for. I've noticed, too, that those who seem the most open to new theories and who aggressively go after a cure (with much trial and error, of course) are the ones who seem to do better overall, whether they actually hit on that cure or not. Best wishes, and welcome to the group! Ann in NJ, 42 > >Reply-To: fibromyalgiacured >To: <fibromyalgiacured > >Subject: New to the Group >Date: Mon, 28 May 2001 16:16:59 -0700 > >Hello Everyone. > >I have had symptoms of fibromyalgia most of my life. I am 40. I was >diagnoses about 5 years ago after spending thousands of dollars on doctors, >tests and hearing all the usual stuff about it all being in my head. I >have come here for hope and encouragement. I am not any use to my children >or husband in the condition I am in. I am always tired and sick. I >recently quit my job because I couldn't take the physical pain anymore. We >are now forced to live on one income and I am very concerned about the >future. Thank you all for being here. > > >Candy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2001 Report Share Posted December 18, 2001 > I am new to this group. I have joined in hopes of maybe helping others. I was a healthy person until I had a root canal, if you would like to read my story you can find it at: > http://webpages.charter.net/kyarbrough/rootcanals.htm > Since putting my story on the internet I have heard from others with similar stories and have posted some of them at: > http://webpages.charter.net/kyarbrough/rootcanalemails.htm > > The very day my tooth was extracted, my chronic fatigue left, after 3 years of feeling exhausted, I no longer wanted to just lay around. When the tooth came out the pressure that I had felt inside my head for 3 years was gone, it felt like when the tooth came out that air came out of that hole and relieved the pressure. It took longer for some symptoms to disappear. > > > > Talk to Ellen the Moderator of this group. She will set you forward and where you want to be. She is a sweetheart! You live and learn You scream you burn (Alanis tette) That's what was happening to me and I don't want to have it happen to you! Send a message to Ellen directly and you will learn! Happy Holidays, TJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 I can't go on progesterone and don't want to bring back the migraines caused by fluctuations in the hormones, but I dearly would love to have my sex life back. Welcome. How much and what kind of P have you done??? P hates me right now, but I am saturated with it. I also didn't know we needed so small an amount to help us. I was always given 100-200mgs of P, so no wonder I felt sick!!! This maybe you, as well. Also if I don't have enough E, I wouldn't be able to tolerate any P. So you may be getting E but maybe not enough for YOU!....These are all just me throwing ideas at ya. What did Carole have to say to all of this, she knows you and your situation? She seems to be happy with her BHRT. You are in the right place for lots of feedback, we share and are still working alot of bugs out of our individulal BHRT too, glad you're here . :-))) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2008 Report Share Posted December 6, 2008 Hi, I have Sarcoidosis and found this site through them. I went to my primary care physician who told me that my bumps were rashes. I don't agree with her. (Doctor's don't like to be challenged.) She said if I still have my bumps after two weeks, she'd send me to a dermatologist. She prescribed Betamethason Dipropionate (a topical cream.) My bumps have appeared all over--elbows, ankles, shins, arms, upper lip, and my back. Most have itched, except for the one on my upper lip. I'm also on Prednisone for my Sarcoidosis. I take 15 mgs. every other day. I've been as high as 60 mgs. every other day. Every time I tapered down to 10, I got worse and had to go back up to 40 mgs every other day. However, my last CTScan was stable. So my pulmonologist started to have me taper down every three months. I was wondering if this might be the problem with my bumps--that I have been tapering down so much that something had to give. This time these bumps. I haven't been diagnosed with EN yet. But, I will keep this group abreast of my symptoms and how my doctors address my issues. I will also read posts to see what others say. Any advice? Let me know. Thanks, sfsudora Quote Link to comment Share on other sites More sharing options...
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