Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 --I have no clue why some people are so severe with this and others not. I almost cried reading your message. I know my symptoms are mild and sometimes I feel like I am going to go crazy. I feel like I dont have enough energy for life and what I really want to do, which is normal for most, is just too exhausting to accomplish. I was in my local library looking for info on this illness when first diagnosed. There were two other women doing the same. We had a conversation. I am a mild case but cannot tolerate exercise very well. One of the women plays tennis and walks and is mild and the other says she is almost bed ridden from it. The only visible difference between us was weight. Me and the other mild woman are slim and the worse one is overweight. Not severely but overweight. I am not by any means putting anyone down for being overweight. I am just one of the lucky ones. If I had to exercise to lose weight I dont think it would happen. My theory is our bodies are not in good shape with this disorder and the extra weight I am sure makes it extra hard to have this. It is a horrible cycle. If I didnt have a great metabolism I would be overweight. Exercise makes me feel worse. There are some that have severe symptoms though that are not overweight. I am hoping someone will figure something out soon with this disease. It is not lifethreatening that I know of but it greatly reduces quality of life. Just keep going thats all we can do. - In @y..., " swanlilyy " wrote: > hi. i am new to this group, and have been and am going through hell > with this illness. i cannot function at all. i am in pain, dizzy, > have severe burning of my feet and legs, feel exhausted and miserable > all the time, and cannot function in life. no one understands. i feel > all alone in this! i have no friends because i cannot do anything. i > cannot go anywhere because of the dizziness and have passed out on a > number of occasions. i've had this illness since my teens, was > finally diagnosed ten years ago with cfs. i read some people can > function somewhat well with this illness, but i am not one of them as > my symptoms are so severe. i fear for my future, hospitalization? a > nursing home? disabled housing? right now i live at home, but what > happens years down the road? i cannot drive due to the fatigue and > ability to concentrate. i can't work, even though my iq is very high. > i am so left out of life. it is passing me by. i have tried all meds > for cfs, with little relief. i read all these testomonials from > people with cfs on vitamin sites, did they really have cfids? it > cannot be anything like what i have. these symptoms will not go away > no matter what. because of the long time i have had cfs, and all the > meds and therapies i have tried, it looks there is no hope for these > symptoms to ever go away. in fact, they've gotton worse in time, not > better. i never had the severe burning of my feet where i can't walk > until just a year ago, had all the tests, and was told there's > nothing to be done. how do people live like this, so isolated from > the world, no friends, just spending all their energy dealing with > the symptoms? is there anyone in this group who has cfs this badly? i > can't be the only one who has it like this? please let me hear from > you if you are as disabled by cfids. thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 --I have no clue why some people are so severe with this and others not. I almost cried reading your message. I know my symptoms are mild and sometimes I feel like I am going to go crazy. I feel like I dont have enough energy for life and what I really want to do, which is normal for most, is just too exhausting to accomplish. I was in my local library looking for info on this illness when first diagnosed. There were two other women doing the same. We had a conversation. I am a mild case but cannot tolerate exercise very well. One of the women plays tennis and walks and is mild and the other says she is almost bed ridden from it. The only visible difference between us was weight. Me and the other mild woman are slim and the worse one is overweight. Not severely but overweight. I am not by any means putting anyone down for being overweight. I am just one of the lucky ones. If I had to exercise to lose weight I dont think it would happen. My theory is our bodies are not in good shape with this disorder and the extra weight I am sure makes it extra hard to have this. It is a horrible cycle. If I didnt have a great metabolism I would be overweight. Exercise makes me feel worse. There are some that have severe symptoms though that are not overweight. I am hoping someone will figure something out soon with this disease. It is not lifethreatening that I know of but it greatly reduces quality of life. Just keep going thats all we can do. - In @y..., " swanlilyy " wrote: > hi. i am new to this group, and have been and am going through hell > with this illness. i cannot function at all. i am in pain, dizzy, > have severe burning of my feet and legs, feel exhausted and miserable > all the time, and cannot function in life. no one understands. i feel > all alone in this! i have no friends because i cannot do anything. i > cannot go anywhere because of the dizziness and have passed out on a > number of occasions. i've had this illness since my teens, was > finally diagnosed ten years ago with cfs. i read some people can > function somewhat well with this illness, but i am not one of them as > my symptoms are so severe. i fear for my future, hospitalization? a > nursing home? disabled housing? right now i live at home, but what > happens years down the road? i cannot drive due to the fatigue and > ability to concentrate. i can't work, even though my iq is very high. > i am so left out of life. it is passing me by. i have tried all meds > for cfs, with little relief. i read all these testomonials from > people with cfs on vitamin sites, did they really have cfids? it > cannot be anything like what i have. these symptoms will not go away > no matter what. because of the long time i have had cfs, and all the > meds and therapies i have tried, it looks there is no hope for these > symptoms to ever go away. in fact, they've gotton worse in time, not > better. i never had the severe burning of my feet where i can't walk > until just a year ago, had all the tests, and was told there's > nothing to be done. how do people live like this, so isolated from > the world, no friends, just spending all their energy dealing with > the symptoms? is there anyone in this group who has cfs this badly? i > can't be the only one who has it like this? please let me hear from > you if you are as disabled by cfids. thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 i'm sorry to hear that you're going through so much. i was told that there was nothing that i would be able to do to help myself with the CFS/FMS etc., but i am on a strict diet that is helping. it can't take everything away, but it does make it so i can function. i have been in the hospital because i was passing out a lot from dizzy spells, they're not fun. i sympathize with you and i hope that you feel better soon luv, ali --- swanlilyy swanlily@...> wrote: > hi. i am new to this group, and have been and am > going through hell > with this illness. i cannot function at all. i am in > pain, dizzy, > have severe burning of my feet and legs, feel > exhausted and miserable > all the time, and cannot function in life. no one > understands. i feel > all alone in this! i have no friends because i > cannot do anything. i > cannot go anywhere because of the dizziness and have > passed out on a > number of occasions. i've had this illness since my > teens, was > finally diagnosed ten years ago with cfs. i read > some people can > function somewhat well with this illness, but i am > not one of them as > my symptoms are so severe. i fear for my future, > hospitalization? a > nursing home? disabled housing? right now i live at > home, but what > happens years down the road? i cannot drive due to > the fatigue and > ability to concentrate. i can't work, even though my > iq is very high. > i am so left out of life. it is passing me by. i > have tried all meds > for cfs, with little relief. i read all these > testomonials from > people with cfs on vitamin sites, did they really > have cfids? it > cannot be anything like what i have. these symptoms > will not go away > no matter what. because of the long time i have had > cfs, and all the > meds and therapies i have tried, it looks there is > no hope for these > symptoms to ever go away. in fact, they've gotton > worse in time, not > better. i never had the severe burning of my feet > where i can't walk > until just a year ago, had all the tests, and was > told there's > nothing to be done. how do people live like this, so > isolated from > the world, no friends, just spending all their > energy dealing with > the symptoms? is there anyone in this group who has > cfs this badly? i > can't be the only one who has it like this? please > let me hear from > you if you are as disabled by cfids. thank you. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 i'm sorry to hear that you're going through so much. i was told that there was nothing that i would be able to do to help myself with the CFS/FMS etc., but i am on a strict diet that is helping. it can't take everything away, but it does make it so i can function. i have been in the hospital because i was passing out a lot from dizzy spells, they're not fun. i sympathize with you and i hope that you feel better soon luv, ali --- swanlilyy swanlily@...> wrote: > hi. i am new to this group, and have been and am > going through hell > with this illness. i cannot function at all. i am in > pain, dizzy, > have severe burning of my feet and legs, feel > exhausted and miserable > all the time, and cannot function in life. no one > understands. i feel > all alone in this! i have no friends because i > cannot do anything. i > cannot go anywhere because of the dizziness and have > passed out on a > number of occasions. i've had this illness since my > teens, was > finally diagnosed ten years ago with cfs. i read > some people can > function somewhat well with this illness, but i am > not one of them as > my symptoms are so severe. i fear for my future, > hospitalization? a > nursing home? disabled housing? right now i live at > home, but what > happens years down the road? i cannot drive due to > the fatigue and > ability to concentrate. i can't work, even though my > iq is very high. > i am so left out of life. it is passing me by. i > have tried all meds > for cfs, with little relief. i read all these > testomonials from > people with cfs on vitamin sites, did they really > have cfids? it > cannot be anything like what i have. these symptoms > will not go away > no matter what. because of the long time i have had > cfs, and all the > meds and therapies i have tried, it looks there is > no hope for these > symptoms to ever go away. in fact, they've gotton > worse in time, not > better. i never had the severe burning of my feet > where i can't walk > until just a year ago, had all the tests, and was > told there's > nothing to be done. how do people live like this, so > isolated from > the world, no friends, just spending all their > energy dealing with > the symptoms? is there anyone in this group who has > cfs this badly? i > can't be the only one who has it like this? please > let me hear from > you if you are as disabled by cfids. thank you. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 i'm sorry to hear that you're going through so much. i was told that there was nothing that i would be able to do to help myself with the CFS/FMS etc., but i am on a strict diet that is helping. it can't take everything away, but it does make it so i can function. i have been in the hospital because i was passing out a lot from dizzy spells, they're not fun. i sympathize with you and i hope that you feel better soon luv, ali --- swanlilyy swanlily@...> wrote: > hi. i am new to this group, and have been and am > going through hell > with this illness. i cannot function at all. i am in > pain, dizzy, > have severe burning of my feet and legs, feel > exhausted and miserable > all the time, and cannot function in life. no one > understands. i feel > all alone in this! i have no friends because i > cannot do anything. i > cannot go anywhere because of the dizziness and have > passed out on a > number of occasions. i've had this illness since my > teens, was > finally diagnosed ten years ago with cfs. i read > some people can > function somewhat well with this illness, but i am > not one of them as > my symptoms are so severe. i fear for my future, > hospitalization? a > nursing home? disabled housing? right now i live at > home, but what > happens years down the road? i cannot drive due to > the fatigue and > ability to concentrate. i can't work, even though my > iq is very high. > i am so left out of life. it is passing me by. i > have tried all meds > for cfs, with little relief. i read all these > testomonials from > people with cfs on vitamin sites, did they really > have cfids? it > cannot be anything like what i have. these symptoms > will not go away > no matter what. because of the long time i have had > cfs, and all the > meds and therapies i have tried, it looks there is > no hope for these > symptoms to ever go away. in fact, they've gotton > worse in time, not > better. i never had the severe burning of my feet > where i can't walk > until just a year ago, had all the tests, and was > told there's > nothing to be done. how do people live like this, so > isolated from > the world, no friends, just spending all their > energy dealing with > the symptoms? is there anyone in this group who has > cfs this badly? i > can't be the only one who has it like this? please > let me hear from > you if you are as disabled by cfids. thank you. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 To Swanlili, You are among friends here, one things that helps is having understanding and support as much as possible. We all share your sense of loss in life, isolation seems to be borne out of the lack of general knowledge regarding CFS. What therapies have you explored ? No one has a silver bullet yet but there are somethings that help people with symptoms. I urge you to explore the work of Dr. Garth Nicholson and his research with mycoplasmas. Dr. Nicholson uses long term Doxycyllin for his CFS patients, I tried it but wasn't successful, that does not mean it won't help you or others. Without an answer I feel helpless to help myself sometimes but reaching out this way makes a huge difference inwardly, that's where it's all at anyway. Please send an email anytime, you can know you have a new circle of friends ok? Be well, Reggie --- Alison Frechette abbuttercup55@...> wrote: > i'm sorry to hear that you're going through so much. > > i was told that there was nothing that i would be > able > to do to help myself with the CFS/FMS etc., but i am > on a strict diet that is helping. it can't take > everything away, but it does make it so i can > function. i have been in the hospital because i was > passing out a lot from dizzy spells, they're not > fun. > i sympathize with you and i hope that you feel > better > soon > luv, ali > > > --- swanlilyy swanlily@...> wrote: > > hi. i am new to this group, and have been and am > > going through hell > > with this illness. i cannot function at all. i am > in > > pain, dizzy, > > have severe burning of my feet and legs, feel > > exhausted and miserable > > all the time, and cannot function in life. no one > > understands. i feel > > all alone in this! i have no friends because i > > cannot do anything. i > > cannot go anywhere because of the dizziness and > have > > passed out on a > > number of occasions. i've had this illness since > my > > teens, was > > finally diagnosed ten years ago with cfs. i read > > some people can > > function somewhat well with this illness, but i am > > not one of them as > > my symptoms are so severe. i fear for my future, > > hospitalization? a > > nursing home? disabled housing? right now i live > at > > home, but what > > happens years down the road? i cannot drive due to > > the fatigue and > > ability to concentrate. i can't work, even though > my > > iq is very high. > > i am so left out of life. it is passing me by. i > > have tried all meds > > for cfs, with little relief. i read all these > > testomonials from > > people with cfs on vitamin sites, did they really > > have cfids? it > > cannot be anything like what i have. these > symptoms > > will not go away > > no matter what. because of the long time i have > had > > cfs, and all the > > meds and therapies i have tried, it looks there is > > no hope for these > > symptoms to ever go away. in fact, they've gotton > > worse in time, not > > better. i never had the severe burning of my feet > > where i can't walk > > until just a year ago, had all the tests, and was > > told there's > > nothing to be done. how do people live like this, > so > > isolated from > > the world, no friends, just spending all their > > energy dealing with > > the symptoms? is there anyone in this group who > has > > cfs this badly? i > > can't be the only one who has it like this? please > > let me hear from > > you if you are as disabled by cfids. thank you. > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2002 Report Share Posted August 23, 2002 Reggie, your knowledge regarding mycoplasmas interests me. When I was first diagnosed with parvo in 1997, I met a great woman from TX who was trying to help her son who was also diagnosed with parvo. She has done extensive research since then and has met with Dr. Nicholson and others who are suffering from Gulf War Syndrome. Did you have bloodwork done to look for mycoplasma infection? I'm curious if I should try that route with my doctor. L Re: severe cfs symptoms To Swanlili, You are among friends here, one things that helps is having understanding and support as much as possible. We all share your sense of loss in life, isolation seems to be borne out of the lack of general knowledge regarding CFS. What therapies have you explored ? No one has a silver bullet yet but there are somethings that help people with symptoms. I urge you to explore the work of Dr. Garth Nicholson and his research with mycoplasmas. Dr. Nicholson uses long term Doxycyllin for his CFS patients, I tried it but wasn't successful, that does not mean it won't help you or others. Without an answer I feel helpless to help myself sometimes but reaching out this way makes a huge difference inwardly, that's where it's all at anyway. Please send an email anytime, you can know you have a new circle of friends ok? Be well, Reggie --- Alison Frechette abbuttercup55@...> wrote: > i'm sorry to hear that you're going through so much. > > i was told that there was nothing that i would be > able > to do to help myself with the CFS/FMS etc., but i am > on a strict diet that is helping. it can't take > everything away, but it does make it so i can > function. i have been in the hospital because i was > passing out a lot from dizzy spells, they're not > fun. > i sympathize with you and i hope that you feel > better > soon > luv, ali > > > --- swanlilyy swanlily@...> wrote: > > hi. i am new to this group, and have been and am > > going through hell > > with this illness. i cannot function at all. i am > in > > pain, dizzy, > > have severe burning of my feet and legs, feel > > exhausted and miserable > > all the time, and cannot function in life. no one > > understands. i feel > > all alone in this! i have no friends because i > > cannot do anything. i > > cannot go anywhere because of the dizziness and > have > > passed out on a > > number of occasions. i've had this illness since > my > > teens, was > > finally diagnosed ten years ago with cfs. i read > > some people can > > function somewhat well with this illness, but i am > > not one of them as > > my symptoms are so severe. i fear for my future, > > hospitalization? a > > nursing home? disabled housing? right now i live > at > > home, but what > > happens years down the road? i cannot drive due to > > the fatigue and > > ability to concentrate. i can't work, even though > my > > iq is very high. > > i am so left out of life. it is passing me by. i > > have tried all meds > > for cfs, with little relief. i read all these > > testomonials from > > people with cfs on vitamin sites, did they really > > have cfids? it > > cannot be anything like what i have. these > symptoms > > will not go away > > no matter what. because of the long time i have > had > > cfs, and all the > > meds and therapies i have tried, it looks there is > > no hope for these > > symptoms to ever go away. in fact, they've gotton > > worse in time, not > > better. i never had the severe burning of my feet > > where i can't walk > > until just a year ago, had all the tests, and was > > told there's > > nothing to be done. how do people live like this, > so > > isolated from > > the world, no friends, just spending all their > > energy dealing with > > the symptoms? is there anyone in this group who > has > > cfs this badly? i > > can't be the only one who has it like this? please > > let me hear from > > you if you are as disabled by cfids. thank you. > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2002 Report Share Posted August 23, 2002 Reggie, your knowledge regarding mycoplasmas interests me. When I was first diagnosed with parvo in 1997, I met a great woman from TX who was trying to help her son who was also diagnosed with parvo. She has done extensive research since then and has met with Dr. Nicholson and others who are suffering from Gulf War Syndrome. Did you have bloodwork done to look for mycoplasma infection? I'm curious if I should try that route with my doctor. L Re: severe cfs symptoms To Swanlili, You are among friends here, one things that helps is having understanding and support as much as possible. We all share your sense of loss in life, isolation seems to be borne out of the lack of general knowledge regarding CFS. What therapies have you explored ? No one has a silver bullet yet but there are somethings that help people with symptoms. I urge you to explore the work of Dr. Garth Nicholson and his research with mycoplasmas. Dr. Nicholson uses long term Doxycyllin for his CFS patients, I tried it but wasn't successful, that does not mean it won't help you or others. Without an answer I feel helpless to help myself sometimes but reaching out this way makes a huge difference inwardly, that's where it's all at anyway. Please send an email anytime, you can know you have a new circle of friends ok? Be well, Reggie --- Alison Frechette abbuttercup55@...> wrote: > i'm sorry to hear that you're going through so much. > > i was told that there was nothing that i would be > able > to do to help myself with the CFS/FMS etc., but i am > on a strict diet that is helping. it can't take > everything away, but it does make it so i can > function. i have been in the hospital because i was > passing out a lot from dizzy spells, they're not > fun. > i sympathize with you and i hope that you feel > better > soon > luv, ali > > > --- swanlilyy swanlily@...> wrote: > > hi. i am new to this group, and have been and am > > going through hell > > with this illness. i cannot function at all. i am > in > > pain, dizzy, > > have severe burning of my feet and legs, feel > > exhausted and miserable > > all the time, and cannot function in life. no one > > understands. i feel > > all alone in this! i have no friends because i > > cannot do anything. i > > cannot go anywhere because of the dizziness and > have > > passed out on a > > number of occasions. i've had this illness since > my > > teens, was > > finally diagnosed ten years ago with cfs. i read > > some people can > > function somewhat well with this illness, but i am > > not one of them as > > my symptoms are so severe. i fear for my future, > > hospitalization? a > > nursing home? disabled housing? right now i live > at > > home, but what > > happens years down the road? i cannot drive due to > > the fatigue and > > ability to concentrate. i can't work, even though > my > > iq is very high. > > i am so left out of life. it is passing me by. i > > have tried all meds > > for cfs, with little relief. i read all these > > testomonials from > > people with cfs on vitamin sites, did they really > > have cfids? it > > cannot be anything like what i have. these > symptoms > > will not go away > > no matter what. because of the long time i have > had > > cfs, and all the > > meds and therapies i have tried, it looks there is > > no hope for these > > symptoms to ever go away. in fact, they've gotton > > worse in time, not > > better. i never had the severe burning of my feet > > where i can't walk > > until just a year ago, had all the tests, and was > > told there's > > nothing to be done. how do people live like this, > so > > isolated from > > the world, no friends, just spending all their > > energy dealing with > > the symptoms? is there anyone in this group who > has > > cfs this badly? i > > can't be the only one who has it like this? please > > let me hear from > > you if you are as disabled by cfids. thank you. > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2002 Report Share Posted August 23, 2002 Reggie, your knowledge regarding mycoplasmas interests me. When I was first diagnosed with parvo in 1997, I met a great woman from TX who was trying to help her son who was also diagnosed with parvo. She has done extensive research since then and has met with Dr. Nicholson and others who are suffering from Gulf War Syndrome. Did you have bloodwork done to look for mycoplasma infection? I'm curious if I should try that route with my doctor. L Re: severe cfs symptoms To Swanlili, You are among friends here, one things that helps is having understanding and support as much as possible. We all share your sense of loss in life, isolation seems to be borne out of the lack of general knowledge regarding CFS. What therapies have you explored ? No one has a silver bullet yet but there are somethings that help people with symptoms. I urge you to explore the work of Dr. Garth Nicholson and his research with mycoplasmas. Dr. Nicholson uses long term Doxycyllin for his CFS patients, I tried it but wasn't successful, that does not mean it won't help you or others. Without an answer I feel helpless to help myself sometimes but reaching out this way makes a huge difference inwardly, that's where it's all at anyway. Please send an email anytime, you can know you have a new circle of friends ok? Be well, Reggie --- Alison Frechette abbuttercup55@...> wrote: > i'm sorry to hear that you're going through so much. > > i was told that there was nothing that i would be > able > to do to help myself with the CFS/FMS etc., but i am > on a strict diet that is helping. it can't take > everything away, but it does make it so i can > function. i have been in the hospital because i was > passing out a lot from dizzy spells, they're not > fun. > i sympathize with you and i hope that you feel > better > soon > luv, ali > > > --- swanlilyy swanlily@...> wrote: > > hi. i am new to this group, and have been and am > > going through hell > > with this illness. i cannot function at all. i am > in > > pain, dizzy, > > have severe burning of my feet and legs, feel > > exhausted and miserable > > all the time, and cannot function in life. no one > > understands. i feel > > all alone in this! i have no friends because i > > cannot do anything. i > > cannot go anywhere because of the dizziness and > have > > passed out on a > > number of occasions. i've had this illness since > my > > teens, was > > finally diagnosed ten years ago with cfs. i read > > some people can > > function somewhat well with this illness, but i am > > not one of them as > > my symptoms are so severe. i fear for my future, > > hospitalization? a > > nursing home? disabled housing? right now i live > at > > home, but what > > happens years down the road? i cannot drive due to > > the fatigue and > > ability to concentrate. i can't work, even though > my > > iq is very high. > > i am so left out of life. it is passing me by. i > > have tried all meds > > for cfs, with little relief. i read all these > > testomonials from > > people with cfs on vitamin sites, did they really > > have cfids? it > > cannot be anything like what i have. these > symptoms > > will not go away > > no matter what. because of the long time i have > had > > cfs, and all the > > meds and therapies i have tried, it looks there is > > no hope for these > > symptoms to ever go away. in fact, they've gotton > > worse in time, not > > better. i never had the severe burning of my feet > > where i can't walk > > until just a year ago, had all the tests, and was > > told there's > > nothing to be done. how do people live like this, > so > > isolated from > > the world, no friends, just spending all their > > energy dealing with > > the symptoms? is there anyone in this group who > has > > cfs this badly? i > > can't be the only one who has it like this? please > > let me hear from > > you if you are as disabled by cfids. thank you. > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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