Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 Dear Allie, I can only ask if you have tried using the gel ice packs. It really helps to put them between your legs. It numbs for awhile and cools down the burning. Hope this helps some. Donna acharbon@... wrote: > > From: acharbon@... > > I haven't posted for a long while - the pain was too bad to sit at computer. > > I'm very discouraged with the severe pain all the time, not only POC. Have tried everything... > > I'm looking to correspond with anyone who might have tried guaifenesin. This was a long shot for me as nothing else had helped and the literature indicated that both Interstitial Cystitis (which I've had over 25 yrs) and Vulvodynia are addendums to Fibromyalgia and they often clear up if the FM is treated. > > I have it a good go - almost 6 mos at 600 mg 2X's daily. My VVS and blad pain really increased, but they said the experience is to get worse before better, that it is 'cycling'. Well, it got so bad, I was so swollen, could almost not urinate... My dr decided it was time to quit! I don't give up easily, but I did have to consider that this was making me much worse.... > > Now, I have nothing more to try. All creams, including Estrace, burn. At my wits end, I'm mixing things, hoping something will ease it. Today I tried a Vit E capsule plus proctosedyl (which eases the burn of hemorrhoids somewhat) and Dermabase. I'm afraid of trying anything and not trying anything! > > I used to be a walker - for exercise, now can barely walk around the house at times, often bedridden. I'm pretty active in support groups still, often by phone and computer, try to stay positive, but this is about the nth degree! I'm coming to the archives on the days I can but would appreciate a cc at my home address. I cannot keep my files organized so for now am on NO MAIL. > > I think this list and all its sharing is about the most positive thing in my life now - the only thing that gives me any hope at all. Thanks to all for being so frank and helpful. > > Allie > > ------------------------------------------------------------------------ > Where do some of the Internet's largest email lists reside? > http://www.onelist.com > At ONElist - the most scalable and reliable service on the Internet. > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 1999 Report Share Posted November 29, 1999 Hi, I noticed allot of questions re: guaif. I feel fortunate that I have hooked up with the Vulvar Pain Foundation (they seem " cutting edge " to me). Check out their website and click on Guaifenesin and it may answer many of the questions being posted. Dr. St. Amand has a new book out also which goes into great detail re: guaif. The office # is: - I personaly found the staff kinda busy and brisk - but, it would be worth a call to get the name of the book. Also, check the archives because someone posted a few weeks ago an excellent post of guaif. and the book and general info. http://www.vulvarpainfoundation.org/upfmore.htm Best, Darlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 Shari, I give her 600mg Guaifenesin in the morning and also before bed. You can get a list of salicylate free products on Dr. St. Amand's website. www.fibromyalgiatreatment.com. He had us remove all herbals (oral and topical)....mint toothpastes, most shampoos and soaps are poison he claims to FM pattiens. She even had to be careful of aloe tipped razor cartridges. I stocked up on personal products at the pharmacy in his building that carries all the one's that are OK after our initial visit. Since your child doesn't have FM, maybe it's not important to remove the salicylates though. Hope the guaifenesin works for your daughter too!!! Susi guaifenesin I'm going to try over the counter Mucinex (600mg. Guaifenesin) for our daughter. Since she has phosphate crystals in her urine and an oxalate problem - it may help. The treatment is supposed to reverse the symptoms of fibromyalgia but I don't have a clue how it will affect autism. She has some of the same symptoms and she also has a cold right now which I was going to use this for anyway. While researching the ingredient of Mucinex before I gave it to her for congestion today - I ran across the treatment plan for fibromyalgia and ridding the body of excess oxalate and phosphate. I think I need to watch for calcium excretion, too. Shari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 Susi, How old is your daughter? Our daughter is 12 1/2. Thanks for the website. Was your daughter also diagnosed with ASD? Have you noticed improvements in any of those areas using guaifenesin? Shari guaifenesin I'm going to try over the counter Mucinex (600mg. Guaifenesin) for our daughter. Since she has phosphate crystals in her urine and an oxalate problem - it may help. The treatment is supposed to reverse the symptoms of fibromyalgia but I don't have a clue how it will affect autism. She has some of the same symptoms and she also has a cold right now which I was going to use this for anyway. While researching the ingredient of Mucinex before I gave it to her for congestion today - I ran across the treatment plan for fibromyalgia and ridding the body of excess oxalate and phosphate. I think I need to watch for calcium excretion, too. Shari Quote Link to comment Share on other sites More sharing options...
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