Guest guest Posted December 17, 1998 Report Share Posted December 17, 1998 Questionaire > > >To All > >I have been thinking that firstly I hate the word " sporadic " ........... > >At one time some months ago, Kurt I think it was you that had the idea to >form a questionaire with many questions, thoughts and ideas to pose to >family members to try and see if there was a common link to this disease. >I haven't heard talk of it since. I have a question to pose group >members.......... > >Would it be a worthwhile project to begin????.....we know that a >questionaire has been done by government agencies needless to say they will >not share that information with us. I am willing to begin such a project >with help from ALL the members. I think firstly we need to compile what >would constitute a questionaire to cover all bases. I would not want to >pry but I think and have come to the conclusion that we all want and need >more answers. > >I would appreciate thoughts and ideas on this. Please email me privately >as to not cause flood mailing on the list. >email address guntah@... > >I would also like to add that with the Holidays closely approaching and it >being such an overwhelming time for many, that my thoughts, prayers and >strength are with you all. > >Sincerly >a G. > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 1998 Report Share Posted December 19, 1998 Hi a... SPORATIC MEANS " WE DON " T KNOW!! Please let me in on your questionaire as my mom just died from this dreadful disease. We are still in shock. nne..CPUB90@AOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Age range: 44 Male/female:&NBS; F What are the symptoms? pain, depression, visual disturbances, irritable bowel and bladder, headaches, muscle spasms, numbness tingling in hands and feet, periods of insomnia along with excessive sleep patterns at times, memory problems, fevers, lots of kidney infections. Hands hurt all the time as well as ankles, wrists, knees, hips. Has you illness been diagnosed? Yes How long did you suffer before you got help? a couple of months but it was two years before I was officially diagnosed. Is there a time that you can remember when it started? Yes, I was in an awful automobile accident in 1991. I had constant problems after that. Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? Yes Are you on disability? Disabilty is a sore subject..lol. I was on disability for seizures. Then I was feeling better, they got under control and I went back to work in 98. I was doing ok until I started with other symptoms that dibilitated me. So I am now trying for disabilty again. I know it's going to be a rough ride. If you are any pointers for others trying to get on disability? Unfortunately not. What have you found that helps ease the pain, warm baths, medications etc.? Medications- combinations of antidepressants, pain meds, warm baths, meditation, good mattress. I also have other illnesses that have similar symptoms with the fibro. So I'm on plaquinal, Lodine and muscle relaxers as well. Do you have sleep problems? How do you deal with it? yes I have sleep problems quite often. I pay for it dearly the next day. The fatigue and pain a re more intense. Do you have family that understands your illness? Not really. Some have found certain foods causes problems with CFS or Fibro, have you? I think anything with additives, and salty foods. It's better to try and eat all natural foods. What type of Doctor have you found that has helped you the most? My rheumatologist. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Age range: 44 Male/female:&NBS; F What are the symptoms? pain, depression, visual disturbances, irritable bowel and bladder, headaches, muscle spasms, numbness tingling in hands and feet, periods of insomnia along with excessive sleep patterns at times, memory problems, fevers, lots of kidney infections. Hands hurt all the time as well as ankles, wrists, knees, hips. Has you illness been diagnosed? Yes How long did you suffer before you got help? a couple of months but it was two years before I was officially diagnosed. Is there a time that you can remember when it started? Yes, I was in an awful automobile accident in 1991. I had constant problems after that. Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? Yes Are you on disability? Disabilty is a sore subject..lol. I was on disability for seizures. Then I was feeling better, they got under control and I went back to work in 98. I was doing ok until I started with other symptoms that dibilitated me. So I am now trying for disabilty again. I know it's going to be a rough ride. If you are any pointers for others trying to get on disability? Unfortunately not. What have you found that helps ease the pain, warm baths, medications etc.? Medications- combinations of antidepressants, pain meds, warm baths, meditation, good mattress. I also have other illnesses that have similar symptoms with the fibro. So I'm on plaquinal, Lodine and muscle relaxers as well. Do you have sleep problems? How do you deal with it? yes I have sleep problems quite often. I pay for it dearly the next day. The fatigue and pain a re more intense. Do you have family that understands your illness? Not really. Some have found certain foods causes problems with CFS or Fibro, have you? I think anything with additives, and salty foods. It's better to try and eat all natural foods. What type of Doctor have you found that has helped you the most? My rheumatologist. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Age range: 44 Male/female:&NBS; F What are the symptoms? pain, depression, visual disturbances, irritable bowel and bladder, headaches, muscle spasms, numbness tingling in hands and feet, periods of insomnia along with excessive sleep patterns at times, memory problems, fevers, lots of kidney infections. Hands hurt all the time as well as ankles, wrists, knees, hips. Has you illness been diagnosed? Yes How long did you suffer before you got help? a couple of months but it was two years before I was officially diagnosed. Is there a time that you can remember when it started? Yes, I was in an awful automobile accident in 1991. I had constant problems after that. Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? Yes Are you on disability? Disabilty is a sore subject..lol. I was on disability for seizures. Then I was feeling better, they got under control and I went back to work in 98. I was doing ok until I started with other symptoms that dibilitated me. So I am now trying for disabilty again. I know it's going to be a rough ride. If you are any pointers for others trying to get on disability? Unfortunately not. What have you found that helps ease the pain, warm baths, medications etc.? Medications- combinations of antidepressants, pain meds, warm baths, meditation, good mattress. I also have other illnesses that have similar symptoms with the fibro. So I'm on plaquinal, Lodine and muscle relaxers as well. Do you have sleep problems? How do you deal with it? yes I have sleep problems quite often. I pay for it dearly the next day. The fatigue and pain a re more intense. Do you have family that understands your illness? Not really. Some have found certain foods causes problems with CFS or Fibro, have you? I think anything with additives, and salty foods. It's better to try and eat all natural foods. What type of Doctor have you found that has helped you the most? My rheumatologist. Quote Link to comment Share on other sites More sharing options...
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