Guest guest Posted June 14, 2000 Report Share Posted June 14, 2000 Hi Helen, And welcome Pete is certainly a lucky guy to have you!!! If his family doesn't see renal failure and dialysis as serious, I doubt anything you say will make a difference! My goodness! What led you and Pete to go to the doctor? I mean, what kind of symptoms was he having? or was he? Kidney failure can be pretty silent til it gets to a really serious stage. Good luck to you both Meenie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 Welcome ne. If you have any questions, please ask. paulaj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2009 Report Share Posted April 29, 2009 There are number Fibro support groups in and around Toronto that might be helpful. > > I would like to introduce myself. I am ne from Ontario, aged 56. I just got my diagnosis yesterday and am just beginning my search for information. > thanks in advance > susanne > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2009 Report Share Posted August 4, 2009 Welcome Sara, I understand it is difficult when your family doesn't understand; especially when they have seen you working hard before this happens, then you are not able to do things you once did... it can be very frustrating. Joy ________________________________ To: fibromyalgiacured Sent: Monday, August 3, 2009 3:19:14 PM Subject: newbie I to everyone !! I have had Fibro for 15 yrs or more;; I feel so alone for Most of my friends and Family Members just don't understand the day to day struggles I go through !! I am hoping to find a place where I can talk and don't be judged ,a place where I can learn more on this horrible syndrome and a way to just get on with my life !!! Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2009 Report Share Posted August 4, 2009 Sweetie, You have found a group here that is more than understanding. This wonderful group shares their ideas to help and support each other. Welcome to the neighborhood. One thing I want you to read is fibrofix.com. Go to the site and take some notes. A dear friend form this group wrote this up to help us especially 'beginners'. She was a terrific lady and left this legacy of advice. Subject: newbie To: fibromyalgiacured Date: Monday, August 3, 2009, 2:19 PM I to everyone !! I have had Fibro for 15 yrs or more;; I feel so alone for Most of my friends and Family Members just don't understand the day to day struggles I go through !! I am hoping to find a place where I can talk and don't be judged ,a place where I can learn more on this horrible syndrome and a way to just get on with my life !!! Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 Sara I think you have come to the right place. Feel free to pour your heart out. I think we all understand and have been there. I think most of us understand what it feels like to have everyone to think you are a pain in the you know what or that we are hypochondriacs. Very depressing situation. Find people who are supportive. Help those around you to become more supportive. Show them some of the information you find out. Help them to see you need help and that you will accept it. Most people will then become supportive for the few who do not, let them go. You are worth it. > > > > > I to everyone !! I have had Fibro for 15 yrs or more;; > I feel so alone for Most of my friends and Family Members just don't > understand the day to day struggles I go through !! > I am hoping to find a place where I can talk > and don't be judged ,a place where I can learn more > on this horrible syndrome > and a way to just get on with my life !!! > > Sara > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 Hey Sara, I understand, people don't understand the limitations this disease puts on us. I was once a very busy person who worked 70 hrs a week and sometimes two jubs, plus taking care of my yard and dogs... but now if I don't pace myself I can't do anything for a week afterward. It is hard for me to feel like I am rested. I know I am sleeping; but I am not sure how restful.. welcome to the group we are here for you. Joy ________________________________ To: fibromyalgiacured Sent: Wednesday, August 5, 2009 3:15:06 PM Subject: Re: newbie Sara I think you have come to the right place. Feel free to pour your heart out. I think we all understand and have been there. I think most of us understand what it feels like to have everyone to think you are a pain in the you know what or that we are hypochondriacs. Very depressing situation. Find people who are supportive. Help those around you to become more supportive. Show them some of the information you find out. Help them to see you need help and that you will accept it. Most people will then become supportive for the few who do not, let them go. You are worth it. On 8/3/09 3:19 PM, " herrinsara " <herrinsarayahoo (DOT) com> wrote: > > > > > I to everyone !! I have had Fibro for 15 yrs or more;; > I feel so alone for Most of my friends and Family Members just don't > understand the day to day struggles I go through !! > I am hoping to find a place where I can talk > and don't be judged ,a place where I can learn more > on this horrible syndrome > and a way to just get on with my life !!! > > Sara > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 Wecome! First of all, I recommend you go to fibrofix.com, it will help tremendously. This site gives alot of information and advise. Group members here are filled with their experiences and what has helped them. Dealing with a teenager with this disease is difficult. I say this because she is prone to her coke and chocolates. But what teen girl isn't? *So far the members here in our group have mentioned the cravings are due to lack of magnesium in the our bodies. *As far as the doctors...well, I have made my opinion on the type you just mentioned. For the sake of your niece's quality of life try to seek doctors who at least believe in the disease if not understand it....so important especially for a child. *Look at her diet...she may be allergic to foods. You may begin with taking wheat and seeing her response between a day to five days with out the wheat. Then grains...then fungus foods. Make notes on a specialized notebook specifically for her. *She should definitely be weaned from coke....it is more than difficult especially for one as young as her. *Introduce more vegetables and protien meats and fish. *Make sure she takes her vitamins and mineral supplements. You should do all this slowly so as not to shock her system and she can get used to the almost overwhelming change. But this all must be done under supervision of a doctor who knows or understands Fibromyalgia. Since she is so young you can't take chances by doing this completely without having proper medical guidance. What I have noted is an overall picture what has helped many of us. We all have different needs and stages of the disease. So what may work for one may not work for the other. So take notes...very important to do so. And do not be shy to ask your questions, all of us will answer as plainly and clearly as possible. I will pray for your neice. God bless, Subject: Newbie To: fibromyalgiacured Date: Wednesday, August 5, 2009, 9:51 PM Hi All, I have just joined this group in search for answers not for myself but for my niece, who has been diagnosed with Fibromyalgia, she is 15 and has been suffering for a year. She has just been given low dose chemo as a treatment and I am in shock at the poisons the doctors who really don't believe in this disease are giving her. Any information would be welcome. I do believe diet can help with the symptoms but being a teenager she seems to live on coke and chocolate. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 Wow!!!! Chemo for fibro????????????? That seems like overkill to me. Are you sure you have all the information. I would sue them if that was my child. Your niece needs a serious education on her body. Her pain will have to out weigh her love of coke and chocolate. She¹s addicted to them. She has to take the same care of herself as a juvenile diabetic. When kids are diabetic they have the same temptations all the time. Its self discipline and love of her self as well. A counselor could help her with her selfdestructive behavior also. I hope she gets well. I hope she is not getting chemo for fibro. That will kill her immune system. Good luck tanya. Tell her we are all pulling for her and let her read some of these so she can see this is her life and how important it is to take care of herself. > > > > > Hi All, I have just joined this group in search for answers not for myself but > for my niece, who has been diagnosed with Fibromyalgia, she is 15 and has been > suffering for a year. She has just been given low dose chemo as a treatment > and I am in shock at the poisons the doctors who really don't believe in this > disease are giving her. Any information would be welcome. I do believe diet > can help with the symptoms but being a teenager she seems to live on coke and > chocolate. > Thanks > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 Great advice maria. Good for you. > > > > > Wecome! > > First of all, I recommend you go to fibrofix.com, it will help tremendously. > This site gives alot of information and advise. Group members here are filled > with their experiences and what has helped them. > Dealing with a teenager with this disease is difficult. I say this because she > is prone to her coke and chocolates. But what teen girl isn't? > > *So far the members here in our group have mentioned the cravings are due to > lack of magnesium in the our bodies. > *As far as the doctors...well, I have made my opinion on the type you just > mentioned. For the sake of your niece's quality of life try to seek doctors > who at least believe in the disease if not understand it....so important > especially for a child. > *Look at her diet...she may be allergic to foods. You may begin with taking > wheat and seeing her response between a day to five days with out the wheat. > Then grains...then fungus foods. Make notes on a specialized notebook > specifically for her. > *She should definitely be weaned from coke....it is more than difficult > especially for one as young as her. > *Introduce more vegetables and protien meats and fish. > *Make sure she takes her vitamins and mineral supplements. > > You should do all this slowly so as not to shock her system and she can get > used to the almost overwhelming change. But this all must be done under > supervision of a doctor who knows or understands Fibromyalgia. > Since she is so young you can't take chances by doing this completely without > having proper medical guidance. > What I have noted is an overall picture what has helped many of us. We all > have different needs and stages of the disease. So what may work for one may > not work for the other. So take notes...very important to do so. > And do not be shy to ask your questions, all of us will answer as plainly and > clearly as possible. > I will pray for your neice. > God bless, > > > > From: tanya_m72 <cianalas@... <mailto:cianalas%40westnet.com.au> > > Subject: Newbie > To: fibromyalgiacured > <mailto:fibromyalgiacured%40yahoogroups.com> > Date: Wednesday, August 5, 2009, 9:51 PM > > > > Hi All, I have just joined this group in search for answers not for myself but > for my niece, who has been diagnosed with Fibromyalgia, she is 15 and has been > suffering for a year. She has just been given low dose chemo as a treatment > and I am in shock at the poisons the doctors who really don't believe in this > disease are giving her. Any information would be welcome. I do believe diet > can help with the symptoms but being a teenager she seems to live on coke and > chocolate. > Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 I have magnificent teachers... Thanks, Teach, M > > From: tanya_m72 <cianalaswestnet (DOT) com.au <mailto:cianalas% 40westnet. com.au> > > Subject: Newbie > To: fibromyalgiacured@ yahoogroups. com > <mailto:fibromyalgi acured%40yahoogr oups.com> > Date: Wednesday, August 5, 2009, 9:51 PM > > > > Hi All, I have just joined this group in search for answers not for myself but > for my niece, who has been diagnosed with Fibromyalgia, she is 15 and has been > suffering for a year. She has just been given low dose chemo as a treatment > and I am in shock at the poisons the doctors who really don't believe in this > disease are giving her. Any information would be welcome. I do believe diet > can help with the symptoms but being a teenager she seems to live on coke and > chocolate. > Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2012 Report Share Posted August 9, 2012 Hi Everyone,I came to this group because last month the doctor told me to give my 3.5 yr old miralax for constipation. I didn't research it as I should have. After a week my daughter just wasn't herself. The miralax didn't help with the constipation and I did realize that the miralax had to be the reason for her change. (She wouldn't talk, was very clingy but she is talking now but not like she was.) Now almost a month later she is still not acting herself. She is beginning to have repetitive behaviors, aggression, at times she seems to be in a daze and is having tantrums. I have a son with autism and she is beginning to look like she might be and it's scaring the crap out of me. I feel like I'm losing her. Is there anything I can do to reverse this? Please help!Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2012 Report Share Posted August 9, 2012 Janet, welcome, we're very sorry to hear your story and glad you found us. This is exactly why we created this group. We're all looking for answers, but sadly we haven't found a way to reverse anything. Fresh lemons are one option, I know it sounds funny, but if indeed this medication causes metabolic acidosis, the body to become too acidic, like the FDA is investigating. Lemon's are alkaline at the opposite end of the spectrum and see worth trying. This has been a God Sent for urinary issues, will post the e we received about this after this one...............all we can do, is keep searching and ensure they don't ever get this medication again. Keep in mind that there are parents on here that have told their medical professionals about their reaction to PEG and they put their child in the ER and gave it to them anyway, under different names............bowel cleansers, Golytely, Nulytely, etc. They ended up having another severe reaction. Jeanie..........see below the drug oversight board meeting........time, will heal, time...................push water, fresh lemonade is cleansing ☺ Stick with Wellness practioners that tend to find causes, not treat symptoms............ The Drug Safety Oversight Board discussed reports of metabolic acidosis, metabolic acidosis with increased anion gap, and neuropsychiatric adverse events in children using polyethylene glycol (PEG) products. Metabolic acidosis is a disturbance in the body's acid-base balance and causes too much acid in the blood. In some situations, metabolic acidosis can be a mild, chronic condition; however, it may lead to shock or death in severe cases. Neuropsychiatric adverse events may include seizures, tremors, tics, headache, anxiety, lethargy, sedation, aggression, rages, obsessive-compulsive behaviors including repetitive chewing and sucking, paranoia and mood swings. http://www.fda.gov/Drugs/DrugSafety/DrugSafetyNewsletter/ucm190244.htm To: "miralax " <miralax >Sent: Thu, August 9, 2012 9:15:35 PMSubject: newbie Hi Everyone, I came to this group because last month the doctor told me to give my 3.5 yr old miralax for constipation. I didn't research it as I should have. After a week my daughter just wasn't herself. The miralax didn't help with the constipation and I did realize that the miralax had to be the reason for her change. (She wouldn't talk, was very clingy but she is talking now but not like she was.) Now almost a month later she is still not acting herself. She is beginning to have repetitive behaviors, aggression, at times she seems to be in a daze and is having tantrums. I have a son with autism and she is beginning to look like she might be and it's scaring the crap out of me. I feel like I'm losing her. Is there anything I can do to reverse this? Please help! Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2012 Report Share Posted August 10, 2012 Look into the gluten free and soy and milk free diets. Good luck. To: " miralax " <miralax > Sent: Thursday, August 9, 2012 10:15 PM Subject: newbie Hi Everyone,I came to this group because last month the doctor told me to give my 3.5 yr old miralax for constipation. I didn't research it as I should have. After a week my daughter just wasn't herself. The miralax didn't help with the constipation and I did realize that the miralax had to be the reason for her change. (She wouldn't talk, was very clingy but she is talking now but not like she was.) Now almost a month later she is still not acting herself. She is beginning to have repetitive behaviors, aggression, at times she seems to be in a daze and is having tantrums. I have a son with autism and she is beginning to look like she might be and it's scaring the crap out of me. I feel like I'm losing her. Is there anything I can do to reverse this? Please help!Janet Quote Link to comment Share on other sites More sharing options...
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