Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Welcome Tina! This is a great group. I look forward to hearing more from you. I am English and I have had CFS for about 20 yrs and been diagnosed for 3. English Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 >Thankyou Sandrea, I look forward to getting to know you! Welcome to the group . I am Sandrea. I am single and live with > 3 dogs and 3 cats. I was diagnosed with CFS about 3 years ago and fibro > more recently. I haven't worked since May 2004 and stay home mostly. I > was a librarian and prior to that a speech therapist. I have found the > folks in this group very friendly and hope you will as well. > Sandrea > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 >Thankyou Aylwin! Welcome , you've come to the right place. Aylwin > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2007 Report Share Posted March 20, 2007 Hi and Welcome: I too live in Missouri. St.Louis to be exact. I first came down with CFS in 1996 and made a full recovery after two years. Thought I was healed and it all behind me, but then had a relapse after a sinus surgery in 2001. Have now had CFS again for 6 yrs. And in April will be undergoing my 3rd sinus surgery. What part of Missouri do you live and are you able to work? Since 2001 I returned to work part time for a couple of years and then got to the point where I could no longer be dependable with the health issues and now I don't work at all. Take care and again, welcome! Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 Hi , I've been quiet for a while but am back now and would like to welcome you here. Hope you enjoy the group and I look forward to getting to know you better. Doreen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 Welcome. I also live in South Florida and would love to meet or at least communicate with those here in Florida. Blair Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 Hi Thank you Aylwin, you have gave me a bit of hope today. Having a really bad day today it is very Hard watching your child in pain and feeling hopeless that you can do nothing. didn't get to sleep until 5.30am. 's paed has been brill but she's not an ME expert, and I would disagree on a few things she has put to us ie phycaitry, as i had a really BAD experience with my other son Conor who is now 15. Conor took a virus at the age of 7 and has never been the same since, so called medical proffessionals had him sucidal. So that is a NO GO AREA FOR DAVID. I am convinced ME is GENETIC, although alot of people will argue with this. Previously to taken ill, he won the National Champions in Ju-Jitsu, was a keen rock climber and in boy scouts and Trampolining. NOW HE'S HOUSEBOUND ALMOST 2YRS (sad isn't it?) Sorry I didn't mean to ramble on!!!!!! How are you? Have you made no improvement? Talk soon Take Care Antoinette Aylwin wrote: Hi Antoinette, Welcome to the group! I just wanted to say that my son had ME for 3 years, ages 10 to 13, and he was also housebound, had to carry him to the loo. We had a lot of problems with doctors saying he was a " shirker " , even though he was very ill. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 HI Tina and Misty, I'm Also new I'm the mother of 13yr old ME sufferer , housebound almost 2yrs. TC Antoinette Misty wrote: Tina, Welcome to the group. I'm kind of new here myself, I've only been here a week or so. I'm 46, divorced (but in love with a great guy named, Dean) I live in south Florida with my 83 year old mother. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 >Thankyou Doreen! I would like to know how many of you have the symptom of feeling like you have a bad flu all the time, and what do you do about it, or is there anything? Hi , > > I've been quiet for a while but am back now and would like to welcome you > here. Hope you enjoy the group and I look forward to getting to know you > better. > > Doreen > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 >Hi Kim, I'm so sorry the CFS came back. I live in Peculiar, just outside of Kansas City. I worked for 7 years at American Century, quit since I was having my 3rd child, after he was born was when I got sick. I worked part-time at my mother's business she used to have, but I have not worked for almost 3 years. I actually have a disability hearing sometime soon. Can anyone tell me what to expect from this hearing? I was denied the first time, so now I have a lawyer, anyone been denied with a lawyer? Hi and Welcome: > > I too live in Missouri. St.Louis to be exact. I first came down with > CFS in 1996 and made a full recovery after two years. Thought I was > healed and it all behind me, but then had a relapse after a sinus > surgery in 2001. Have now had CFS again for 6 yrs. And in April will > be undergoing my 3rd sinus surgery. > > What part of Missouri do you live and are you able to work? Since 2001 > I returned to work part time for a couple of years and then got to the > point where I could no longer be dependable with the health issues and > now I don't work at all. > > Take care and again, welcome! > > Kim > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 Thank you for the welcome Antoinette! It's really nice to meet you, everyone here seems so friendly! Tina/KY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 Pleasure to meet you ! Thank you so much for the nice welcome! Tina/KY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 Hi Antoinette, Tina and Misty. I joined not too long ago myself, been quiet for a while because of oral surgery and recovery. Hope you enjoy it here and I look forward to getting to know you all better. Doreen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 Hi Sara, Sorry you've been sick so long, but I was wondering if I would find anyone else here like myself. I've had CFS and related illnesses for well over 30 years. I think it all began 'first' was panic syndrome. It was 1989 when I finally got diagnosed with the fatigue problem, by a naturopath. At first, megavitamin IVs were helping, but that sort of leveled itself out and then quit having any effect. Doreen Eugene, Oregon Re: new member Welcome Antoinette, This is a great group. I hope you find the same kind of support that I have here. I am English and I think I have been suffering from CFS for over 20yrs but finally diagnosed 3 years ago. English Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 Doreen, I have that all the time and all I really know to do is collapse in bed all day. I hate it! English Re: Re: new member >Thankyou Doreen! I would like to know how many of you have the symptom of feeling like you have a bad flu all the time, and what do you do about it, or is there anything? Hi , > > I've been quiet for a while but am back now and would like to welcome you > here. Hope you enjoy the group and I look forward to getting to know you > better. > > Doreen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 Hi ! That's exactly how I describe it. I just wish I could have people be in my body for a couple of hours just so they know what I mean....... I usuallydescribe it as: " I feel like I'm 80 years old and just ran a marathon with a bad case of the flu " (I'm in my early 40's, btw) If this is what the 40's feel like what is 80 really going to feel like? Or won't we live that long? Another way I would describe it is - I just feel " poisoned " sometimes. There is just no getting people to understand iunless they have this. From a fellow " flu " sufferer ~ Kate -------------- Original message -------------- From: metzdorf@... >Thankyou Doreen! I would like to know how many of you have the symptom of feeling like you have a bad flu all the time, and what do you do about it, or is there anything? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 Hi Antoinette, yes it's hell, worse than having it oneself, to watch your child suffer. At the risk of being forward, it sounds like your other son may have ME or a similar post viral syndrome. In my opinion it is genetics plus toxins (pesticides, car exhaust, whatever), sets the body up for an infection like this. That was my analysis of the experience. And I've got to tell you, seeing my son strong, doing construction, bristling with muscle and vitality, with a full social life and so on, just makes the world OK again for me, even though I remain so ill. It is sad, all you can do is care for him/them as best you can, and try to protect them from the worst of the ignorant docs. Sometimes alternative treatments such as good Chiropractic, NAET (as has been written about in this group, it's amazing what obscure allergies can contribute, plus one develops them with ME) can be helpful. I don't know about the paediatric book, I'm hoping the person who mentioned it will repost it. Then you could give it to your child's doc! Feel free to email me privately if you like, and don't ever worry about venting, I can take it! (Oh I can dish it out too <grin>). NEVER give up hope! It's so important to take care of yourself as well, so you can take care of them. Sending you waves of strength and comfort. You are not crazy and neither are your kids. Aylwin xo _____ From: CFAlliance [mailto:CFAlliance ] On Behalf Of antoinette christie Sent: Wednesday, March 21, 2007 4:20 AM To: CFAlliance Subject: Re: Re: new member Hi Thank you Aylwin, you have gave me a bit of hope today. Having a really bad day today it is very Hard watching your child in pain and feeling hopeless that you can do nothing. didn't get to sleep until 5.30am. 's paed has been brill but she's not an ME expert, and I would disagree on a few things she has put to us ie phycaitry, as i had a really BAD experience with my other son Conor who is now 15. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 > Hi Kate, I like your " poisoned " way of describing it. I feel like my body is infected with disease. I too feel like I am 80, I am 34. I can't imagine what I will feel like at 80, if I'm here that long. Hi ! > That's exactly how I describe it. I just wish I could have people be in > my body for a couple of hours just so they know what I mean....... > I usuallydescribe it as: > > " I feel like I'm 80 years old and just ran a marathon with a bad case of > the flu " > > (I'm in my early 40's, btw) If this is what the 40's feel like what is > 80 really going to feel like? Or won't we live that long? > Another way I would describe it is - I just feel " poisoned " sometimes. > There is just no getting people to understand iunless they have this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 , Doreen Aspirin or Tylenol helps me with this.. Aylwin _____ From: CFAlliance [mailto:CFAlliance ] On Behalf Of sarah Sent: Wednesday, March 21, 2007 12:04 PM To: CFAlliance Subject: RE: Re: new member Doreen, I have that all the time and all I really know to do is collapse in bed all day. I hate it! English Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2007 Report Share Posted March 22, 2007 Hi Doreen, Well I had a baby and then pneumonia when she was 2 weeks old and that was 25 yrs ago and that was when I first got the CFS. Though I ignored it and just kept on going like I had done before. Then about 8 yrs later I got diagnosed with Lupus!!!!! Two years ago fibro!!!!!!! Having a really bad flair of the Lupus-I think. It is so hard to know which is the condition causing all the extreme fatigue at the moment. I see the Rheumo on Monday-but fairly sure he does not believe in CFS-not that he has said anything but...........you know that look??? heheheheee Guess I will have to give in and take cortisone-I am going to look like a beached whale-which is NOT a pretty sight. lol Regards nerida Send instant messages to your online friends http://au.messenger.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2007 Report Share Posted March 22, 2007 I always wonder if we feel similar to chemo patients without the hair loss. Having never gone through chemo, I don't know. English Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2007 Report Share Posted March 22, 2007 > > >Thankyou ! > > > > > > > Welcome ! I look forward to hearing more from you. > > > > English > > > welcome rachel iknow you will like this group god bless marianne mo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2007 Report Share Posted March 22, 2007 There's a small mistake here. I didn't post that, I was being spoken " to " in this regard. I don't get this feeling, thankfully; I have enough other stuff. Doreen RE: Re: new member Doreen, I have that all the time and all I really know to do is collapse in bed all day. I hate it! English Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2007 Report Share Posted March 22, 2007 We should never know about chemo. I just got off the phone with my best and oldest freind who is dying of Lung Cancer. I know this is not a picnic but to talk with her breaks my heart. Blair Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2007 Report Share Posted March 22, 2007 Hi Nerida, I should just MMOB but thought I might mention that it's my understanding that cortisone is hell for the immune system (science types, weight in here).have you tried anything natural/alternative first? I'm taking Turmeric (yes the spice) which, in adequate doses, is an excellent anti-inflammatory. I was quite allergic until recently, we NAET'ed it so I could take it. Still working to build the dosage as I must do with all mew meds, herbs etc. I know that cortisone can be so helpful.as a last resort. Just an opinion/choice/something to think about? Tell me to keep it to myself if you like! Just Take Care, Aylwin Quote Link to comment Share on other sites More sharing options...
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