Guest guest Posted November 22, 2001 Report Share Posted November 22, 2001 Age range: 27 Male/female: female What are the symptoms? backache, stiffness and aching in general, headaches, intestinal problems, pain in hips, pain in neck, numbness in all extremities. Too much to mention! Has you illness been diagnosed? Yes, as well as Arnold Chiari Malformation and Syringohydromyelia How long was it that you suffered before you found out what was wrong? If Fibto-CFS How long have you been suffering with it? 5 years Is there a time that you can remember when it started? After my surgery for ACM. I had a portion of my skull removed, and I think it screwed with my nervous system. Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? Are you on disability? No weight problems. When I got sick, I went from 170 lbs to 124 lbs. I push myself beyond what I should and could do. I am on disability for the ACM. What have you found that helps ease the pain, warm baths, medications etc.? Do you have sleep problems? How do you deal with it? I always try to have too much going on to think about it alot! It helps me. When I sit down at night, it is worse. Do you have family that understands your illness? Yes, my husband is excellent. About the foods... I do not eat meat. Since I made that decision, it has helped tremendously. As well, alot of fruits and veges help keep my system straight. Red meats make me feel horrible. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2001 Report Share Posted November 22, 2001 Age range: 27 Male/female: female What are the symptoms? backache, stiffness and aching in general, headaches, intestinal problems, pain in hips, pain in neck, numbness in all extremities. Too much to mention! Has you illness been diagnosed? Yes, as well as Arnold Chiari Malformation and Syringohydromyelia How long was it that you suffered before you found out what was wrong? If Fibto-CFS How long have you been suffering with it? 5 years Is there a time that you can remember when it started? After my surgery for ACM. I had a portion of my skull removed, and I think it screwed with my nervous system. Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? Are you on disability? No weight problems. When I got sick, I went from 170 lbs to 124 lbs. I push myself beyond what I should and could do. I am on disability for the ACM. What have you found that helps ease the pain, warm baths, medications etc.? Do you have sleep problems? How do you deal with it? I always try to have too much going on to think about it alot! It helps me. When I sit down at night, it is worse. Do you have family that understands your illness? Yes, my husband is excellent. About the foods... I do not eat meat. Since I made that decision, it has helped tremendously. As well, alot of fruits and veges help keep my system straight. Red meats make me feel horrible. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2001 Report Share Posted November 22, 2001 Age range: 27 Male/female: female What are the symptoms? backache, stiffness and aching in general, headaches, intestinal problems, pain in hips, pain in neck, numbness in all extremities. Too much to mention! Has you illness been diagnosed? Yes, as well as Arnold Chiari Malformation and Syringohydromyelia How long was it that you suffered before you found out what was wrong? If Fibto-CFS How long have you been suffering with it? 5 years Is there a time that you can remember when it started? After my surgery for ACM. I had a portion of my skull removed, and I think it screwed with my nervous system. Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? Are you on disability? No weight problems. When I got sick, I went from 170 lbs to 124 lbs. I push myself beyond what I should and could do. I am on disability for the ACM. What have you found that helps ease the pain, warm baths, medications etc.? Do you have sleep problems? How do you deal with it? I always try to have too much going on to think about it alot! It helps me. When I sit down at night, it is worse. Do you have family that understands your illness? Yes, my husband is excellent. About the foods... I do not eat meat. Since I made that decision, it has helped tremendously. As well, alot of fruits and veges help keep my system straight. Red meats make me feel horrible. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2001 Report Share Posted November 22, 2001 In a message dated 11/22/2001 9:14:17 PM US Eastern Standard Time, parrot004@... writes: > Arnold Chiari Malformation and Syringohydromyelia Can you inform me as to what these two things are I have never heard of them before. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2001 Report Share Posted November 22, 2001 In a message dated 11/22/2001 9:14:17 PM US Eastern Standard Time, parrot004@... writes: > Arnold Chiari Malformation and Syringohydromyelia Can you inform me as to what these two things are I have never heard of them before. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2001 Report Share Posted November 22, 2001 In a message dated 11/22/2001 9:14:17 PM US Eastern Standard Time, parrot004@... writes: > Arnold Chiari Malformation and Syringohydromyelia Can you inform me as to what these two things are I have never heard of them before. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 My brain grew down over my spinal cord and formed syrinx tumors on the inside of my spinal cord. This was the Dx that I told you to take a look at after reading your very first email with us. You can do a general search on the web for more info. Missy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 My brain grew down over my spinal cord and formed syrinx tumors on the inside of my spinal cord. This was the Dx that I told you to take a look at after reading your very first email with us. You can do a general search on the web for more info. Missy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 My brain grew down over my spinal cord and formed syrinx tumors on the inside of my spinal cord. This was the Dx that I told you to take a look at after reading your very first email with us. You can do a general search on the web for more info. Missy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 Survey Would you share any or all of the things below? Your answer might just be a help to someone else in some areas. If you answer any of these questions please make a double space ( enter twice) between them so they will not all run together. Age range:40's Male/female:female What are the symptoms? traveling pain, and cluster headaches Has you illness been diagnosed? Yes How long was it that you suffered before you found out what was wrong? If Fibto-CFS How long have you been suffering with it? 15 months Is there a time that you can remember when it started? Yes Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? Are you on disability? I am 40 pounds over weight If you are any pointers for others trying to get on disability? What have you found that helps ease the pain, warm baths, medications etc.? Do you have sleep problems? How do you deal with it? I just recently started triing to get ssi. I have no hints sorry not yet, Some times medication, sometimes not. Yes I have sleep probluems Do you have family that understands your illness? No Some have found certain foods causes problems with CFS or Fibor, have you? No What type of Dr have you found that has helped you the most? my gp is a fairly good one. SEND POST TO: fibromyalgia-cfs HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html LIST OWNER: -owner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 Survey > > > Would you share any or all of the things below? Your answer might just be > a help to someone else in some areas. If you answer any of these questions > please make a double space ( enter twice) between them so they will not > all run together. > > > Age range:46 > Male/ > > What are the symptoms? severe pain in legs, lower cack, arms, shoulders > Has you illness been diagnosed? Yes > How long was it that you suffered before you found out what was wrong? I started with shortness of breath and some chest pains in 1994, finaly dx'ed in Nov. of 97 > Fibro-CFS How long have you been suffering with it? months > Is there a time that you can remember when it started? no > Some of us have found lack of exercise we are overweight. Have you found > this to be a problem also? Are you on disability? I am 55 pounds over weight, And Iwent on disability in march of 98 > If you are any pointers for others trying to get on disability? What have > you found that helps ease the pain, warm baths, medications etc.? Do you > have sleep problems? How do you deal with it? Yes I have sleep problems > > Do you have family that understands your illness? No > Some have found certain foods causes problems with CFS or Fibor, have you? > No > > What type of Dr have you found that has helped you the most? I have a rhuemo at Cleveland Clinic > > > > > > > > SEND POST TO: fibromyalgia-cfs > > HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html > LIST OWNER: -owner > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 Survey > > > Would you share any or all of the things below? Your answer might just be > a help to someone else in some areas. If you answer any of these questions > please make a double space ( enter twice) between them so they will not > all run together. > > > Age range:46 > Male/ > > What are the symptoms? severe pain in legs, lower cack, arms, shoulders > Has you illness been diagnosed? Yes > How long was it that you suffered before you found out what was wrong? I started with shortness of breath and some chest pains in 1994, finaly dx'ed in Nov. of 97 > Fibro-CFS How long have you been suffering with it? months > Is there a time that you can remember when it started? no > Some of us have found lack of exercise we are overweight. Have you found > this to be a problem also? Are you on disability? I am 55 pounds over weight, And Iwent on disability in march of 98 > If you are any pointers for others trying to get on disability? What have > you found that helps ease the pain, warm baths, medications etc.? Do you > have sleep problems? How do you deal with it? Yes I have sleep problems > > Do you have family that understands your illness? No > Some have found certain foods causes problems with CFS or Fibor, have you? > No > > What type of Dr have you found that has helped you the most? I have a rhuemo at Cleveland Clinic > > > > > > > > SEND POST TO: fibromyalgia-cfs > > HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html > LIST OWNER: -owner > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 Survey > > > Would you share any or all of the things below? Your answer might just be > a help to someone else in some areas. If you answer any of these questions > please make a double space ( enter twice) between them so they will not > all run together. > > > Age range:46 > Male/ > > What are the symptoms? severe pain in legs, lower cack, arms, shoulders > Has you illness been diagnosed? Yes > How long was it that you suffered before you found out what was wrong? I started with shortness of breath and some chest pains in 1994, finaly dx'ed in Nov. of 97 > Fibro-CFS How long have you been suffering with it? months > Is there a time that you can remember when it started? no > Some of us have found lack of exercise we are overweight. Have you found > this to be a problem also? Are you on disability? I am 55 pounds over weight, And Iwent on disability in march of 98 > If you are any pointers for others trying to get on disability? What have > you found that helps ease the pain, warm baths, medications etc.? Do you > have sleep problems? How do you deal with it? Yes I have sleep problems > > Do you have family that understands your illness? No > Some have found certain foods causes problems with CFS or Fibor, have you? > No > > What type of Dr have you found that has helped you the most? I have a rhuemo at Cleveland Clinic > > > > > > > > SEND POST TO: fibromyalgia-cfs > > HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html > LIST OWNER: -owner > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 Age range:30 tomorrow Male/female:Female What are the symptoms? Off and on numb fingers and toes, weak ankles, weak hands, pain in arms, shoulders,neck, all over head and jaw, tmj, bruxism, hypothyroid, diabetes (insulin resistance), irritable bowel, lack of stage 4 sleep, tension headaches 100% of the time, foggy mind, nausea, dysmennorrea (sp?), carpul tunnel, thoracic outlet syndrome, ummmm, fatigue, can't think of anything else. Has you illness been diagnosed?Tentatively by md, have app't with rheumy in Jan. How long was it that you suffered before you found out what was wrong? Headaches and tension for about 13 years, cfs for about 2 years. If Fibto-CFS How long have you been suffering with it? as above Is there a time that you can remember when it started? The headaches started when I was in high school. The sleeping issues and fatigue started about 2 yrs. ago. Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? I gained about 50 lbs. in a few months before I found out that I had insulin resistance, which was the cause. As far as exercise, yes, it is very hard to be motivated to exercise, although I do it. Not enough though. Are you on disability? No If you are any pointers for others trying to get on disability? My daughter is on SSI and although we had no problem getting it for her, I was given the advice that if we did, we should not give up. It may take a lot of appeals, and letters, but they count on the fact that you will end up giving up, and persistence is the key. What have you found that helps ease the pain, warm baths, medications etc.? I am still learning on this one. Cold helps my headaches-or just temp. changes in general, warm or cold. If I take 4 tylenol and 4 ibuprofin, It will take the edge off of my headaches. My Dr. just a few days ago prescribed Cyclobenzaprine,and it seems to be helping a lot. Icy Hot helps neck muscles temporarily. A body pillow helps me sleep better, and I have a foam rubber pillow that seems to be helping. I take just over the counter sleep med. and that helps me to stay asleep (Ambien makes me very groggy the next day), ritalin helps with daytime fogginess. Do you have sleep problems? How do you deal with it?Yes, I went had a sleep study and see above for treatment. Do you have family that understands your illness? My husband is very understanding and supportive, my extended family would rather not talk about it. Some have found certain foods causes problems with CFS or Fibor, have you? Can't say for sure on this one, although I am very intersted in diet changes to help. If anyone else has suggestions? What type of Dr have you found that has helped you the most? A Dr. that will take into account your suggestions for treatment, and respect that you have becom educated on this syndrome. My sleep Dr. (He's a pulmonologist) has helped a lot as far as prescriptions for the sleep issues. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 Age range:30 tomorrow Male/female:Female What are the symptoms? Off and on numb fingers and toes, weak ankles, weak hands, pain in arms, shoulders,neck, all over head and jaw, tmj, bruxism, hypothyroid, diabetes (insulin resistance), irritable bowel, lack of stage 4 sleep, tension headaches 100% of the time, foggy mind, nausea, dysmennorrea (sp?), carpul tunnel, thoracic outlet syndrome, ummmm, fatigue, can't think of anything else. Has you illness been diagnosed?Tentatively by md, have app't with rheumy in Jan. How long was it that you suffered before you found out what was wrong? Headaches and tension for about 13 years, cfs for about 2 years. If Fibto-CFS How long have you been suffering with it? as above Is there a time that you can remember when it started? The headaches started when I was in high school. The sleeping issues and fatigue started about 2 yrs. ago. Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? I gained about 50 lbs. in a few months before I found out that I had insulin resistance, which was the cause. As far as exercise, yes, it is very hard to be motivated to exercise, although I do it. Not enough though. Are you on disability? No If you are any pointers for others trying to get on disability? My daughter is on SSI and although we had no problem getting it for her, I was given the advice that if we did, we should not give up. It may take a lot of appeals, and letters, but they count on the fact that you will end up giving up, and persistence is the key. What have you found that helps ease the pain, warm baths, medications etc.? I am still learning on this one. Cold helps my headaches-or just temp. changes in general, warm or cold. If I take 4 tylenol and 4 ibuprofin, It will take the edge off of my headaches. My Dr. just a few days ago prescribed Cyclobenzaprine,and it seems to be helping a lot. Icy Hot helps neck muscles temporarily. A body pillow helps me sleep better, and I have a foam rubber pillow that seems to be helping. I take just over the counter sleep med. and that helps me to stay asleep (Ambien makes me very groggy the next day), ritalin helps with daytime fogginess. Do you have sleep problems? How do you deal with it?Yes, I went had a sleep study and see above for treatment. Do you have family that understands your illness? My husband is very understanding and supportive, my extended family would rather not talk about it. Some have found certain foods causes problems with CFS or Fibor, have you? Can't say for sure on this one, although I am very intersted in diet changes to help. If anyone else has suggestions? What type of Dr have you found that has helped you the most? A Dr. that will take into account your suggestions for treatment, and respect that you have becom educated on this syndrome. My sleep Dr. (He's a pulmonologist) has helped a lot as far as prescriptions for the sleep issues. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2001 Report Share Posted November 23, 2001 Age range:30 tomorrow Male/female:Female What are the symptoms? Off and on numb fingers and toes, weak ankles, weak hands, pain in arms, shoulders,neck, all over head and jaw, tmj, bruxism, hypothyroid, diabetes (insulin resistance), irritable bowel, lack of stage 4 sleep, tension headaches 100% of the time, foggy mind, nausea, dysmennorrea (sp?), carpul tunnel, thoracic outlet syndrome, ummmm, fatigue, can't think of anything else. Has you illness been diagnosed?Tentatively by md, have app't with rheumy in Jan. How long was it that you suffered before you found out what was wrong? Headaches and tension for about 13 years, cfs for about 2 years. If Fibto-CFS How long have you been suffering with it? as above Is there a time that you can remember when it started? The headaches started when I was in high school. The sleeping issues and fatigue started about 2 yrs. ago. Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? I gained about 50 lbs. in a few months before I found out that I had insulin resistance, which was the cause. As far as exercise, yes, it is very hard to be motivated to exercise, although I do it. Not enough though. Are you on disability? No If you are any pointers for others trying to get on disability? My daughter is on SSI and although we had no problem getting it for her, I was given the advice that if we did, we should not give up. It may take a lot of appeals, and letters, but they count on the fact that you will end up giving up, and persistence is the key. What have you found that helps ease the pain, warm baths, medications etc.? I am still learning on this one. Cold helps my headaches-or just temp. changes in general, warm or cold. If I take 4 tylenol and 4 ibuprofin, It will take the edge off of my headaches. My Dr. just a few days ago prescribed Cyclobenzaprine,and it seems to be helping a lot. Icy Hot helps neck muscles temporarily. A body pillow helps me sleep better, and I have a foam rubber pillow that seems to be helping. I take just over the counter sleep med. and that helps me to stay asleep (Ambien makes me very groggy the next day), ritalin helps with daytime fogginess. Do you have sleep problems? How do you deal with it?Yes, I went had a sleep study and see above for treatment. Do you have family that understands your illness? My husband is very understanding and supportive, my extended family would rather not talk about it. Some have found certain foods causes problems with CFS or Fibor, have you? Can't say for sure on this one, although I am very intersted in diet changes to help. If anyone else has suggestions? What type of Dr have you found that has helped you the most? A Dr. that will take into account your suggestions for treatment, and respect that you have becom educated on this syndrome. My sleep Dr. (He's a pulmonologist) has helped a lot as far as prescriptions for the sleep issues. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2001 Report Share Posted November 24, 2001 >Age range: 48 >Male/female: Female > >What are the symptoms? All over body pain and weakness, fatigue, IBS, >palpitations, episodes of burning muscle pain with minimal exercise, >headache, muscle cramps, vision disturbances, depression, short term >memory problems, " foggy " headed feeling, sleep disturbances, poor balance >and " stumbling on air " , it goes on and on. >Has your llness been diagnosed? Not yet officially, in the process of >elimination, but FMS is the most likely suspect. >How long was it that you suffered before you found out what was wrong? 8 years >If Fibto-CFS How long have you been suffering with it? 8 years >Is there a time that you can remember when it started? After a bout with >the flu, 8 years ago. >Some of us have found due to lack of exercise we are overweight. Have you >found >this to be a problem also? Definitely! > Are you on disability? No >If you are any pointers for others trying to get on disability? Sorry, no. > What have you found that helps ease the pain, warm baths, medications > etc.? Opiates, warm baths, bed rest, sleep. >Do you have sleep problems? Yes >How do you deal with it? When it gets really bad, medications. > >Do you have family that understands your illness? They try. >Some have found certain foods causes problems with CFS or Fibro, have >you? Not really > >What type of Dr have you found that has helped you the most? The doctor I >am currently working with, a rheumatologist. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2001 Report Share Posted November 24, 2001 >Age range: 48 >Male/female: Female > >What are the symptoms? All over body pain and weakness, fatigue, IBS, >palpitations, episodes of burning muscle pain with minimal exercise, >headache, muscle cramps, vision disturbances, depression, short term >memory problems, " foggy " headed feeling, sleep disturbances, poor balance >and " stumbling on air " , it goes on and on. >Has your llness been diagnosed? Not yet officially, in the process of >elimination, but FMS is the most likely suspect. >How long was it that you suffered before you found out what was wrong? 8 years >If Fibto-CFS How long have you been suffering with it? 8 years >Is there a time that you can remember when it started? After a bout with >the flu, 8 years ago. >Some of us have found due to lack of exercise we are overweight. Have you >found >this to be a problem also? Definitely! > Are you on disability? No >If you are any pointers for others trying to get on disability? Sorry, no. > What have you found that helps ease the pain, warm baths, medications > etc.? Opiates, warm baths, bed rest, sleep. >Do you have sleep problems? Yes >How do you deal with it? When it gets really bad, medications. > >Do you have family that understands your illness? They try. >Some have found certain foods causes problems with CFS or Fibro, have >you? Not really > >What type of Dr have you found that has helped you the most? The doctor I >am currently working with, a rheumatologist. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2001 Report Share Posted November 25, 2001 Age range: 23 Male/female: female What are the symptoms? Well, let's see, that ones kind of hard lol. I have muscle pain and weakness, joint pain and fatigue. Since I have other diseases, I'm not sure what causes what. Has you illness been diagnosed? Yes How long was it that you suffered before you found out what was wrong? Let's see, the general muscle pain and weakness has been at least 2 years now that I've had it on a daily basis. If Fibto-CFS How long have you been suffering with it? Is there a time that you can remember when it started? I'm not really sure, my memory is shot. Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? This is a major problem for me. I have not been able to work for over a year, and had a time where I was using a walker for about 6 months. I am just now able to clean my house, but I have to do a little, take a break.. I'm sure you know what I mean. Are you on disability? Actually, I had applied for disability in June. I just received a notice saying that I'm not approved. They said that I should still be able to work even though I have endo and back problems. Well I say =Þ to them and I am appealing. If I could work, I would. If you are any pointers for others trying to get on disability? Actually something interesting there too, I just found a web site last night that had an article by a Lawyer who specializes in defending FMS/CFS sufferers to get SSI. I will find the link again and post it soon if anyone wants it. What have you found that helps ease the pain, warm baths, medications etc.? Oxycontin helped with my pain for a while, but my body got used to it. I am on Flexril, Elavil (which I take for my bladder problems, but have raised the dosage to try to help with this), and Neurontin. I haven't noticed much of a difference, but my dr is going to up my dosage of Neurontin to see if that helps. Usually I take hot baths and sleep with a heating pad and electric blanket. I burn up, but I wake up with a little less stiffness than usual. Do you have sleep problems? How do you deal with it? I have problems falling asleep and wake up in the middle of the night, usually caused by the pain. The Elavil had helped me fall asleep for a while, but it doesn't anymore. I'm going to speak to my dr about it soon. Do you have family that understands your illness? Right now my family is basically clueless about FMS, it's just another disease that I have to deal with. Some have found certain foods causes problems with CFS or Fibor, have you? Not that I know of. What type of Dr have you found that has helped you the most? I haven't yet.. ===== Coordinator EndoCenter of Eastern New Mexico http://endogirl.tripod.com/endocenterofeasternnewmexico endogirl78@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2001 Report Share Posted November 25, 2001 Survey > Would you share any or all of the things below? Your answer might just be > a help to someone else in some areas. If you answer any of these questions > please make a double space ( enter twice) between them so they will not > all run together. > > > Age range: 29 > Male/female: Female > > What are the symptoms? Tiredness, severe burning pains over various parts of the body, headaches, dizzyness, forgetfulness, speech problems. > Has you illness been diagnosed? 2 years > How long was it that you suffered before you found out what was wrong? 4 years >If Fibro-CFS How long have you been suffering with it? since 1995 > Is there a time that you can remember when it started? After the birth of my twins. (Via ceaserean section) I also suffered a severe ear infection when i left the hospital. > Some of us have found lack of exercise we are overweight. Have you found > this to be a problem also? Slightly, just more recently I have noticed i feel fat I can't exercise. Are you on disability? No > If you are any pointers for others trying to get on disability? I might need help in this area myself soon. > What have you found that helps ease the pain, warm baths, medications etc.? I personally don't find much to help me at all I just seem to sleep pain off if I can. The tablets I have are not good. I find relaxing in a bath can be impossible at times and the pains become more severe. I often lie my head on a hot water bottle. > Do you have sleep problems? Yes My main problem at night is getting to sleep , then staying asleep. How do you deal with it? If i am having a bad night I just get up for an hour then try again. > > Do you have family that understands your illness? Not really. They try > Some have found certain foods causes problems with CFS or Fibor, have you? No > > What type of Dr have you found that has helped you the most? My local GP > > > > > > > > SEND POST TO: fibromyalgia-cfs > > HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html > LIST OWNER: -owner > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2001 Report Share Posted November 25, 2001 Survey > Would you share any or all of the things below? Your answer might just be > a help to someone else in some areas. If you answer any of these questions > please make a double space ( enter twice) between them so they will not > all run together. > > > Age range: 29 > Male/female: Female > > What are the symptoms? Tiredness, severe burning pains over various parts of the body, headaches, dizzyness, forgetfulness, speech problems. > Has you illness been diagnosed? 2 years > How long was it that you suffered before you found out what was wrong? 4 years >If Fibro-CFS How long have you been suffering with it? since 1995 > Is there a time that you can remember when it started? After the birth of my twins. (Via ceaserean section) I also suffered a severe ear infection when i left the hospital. > Some of us have found lack of exercise we are overweight. Have you found > this to be a problem also? Slightly, just more recently I have noticed i feel fat I can't exercise. Are you on disability? No > If you are any pointers for others trying to get on disability? I might need help in this area myself soon. > What have you found that helps ease the pain, warm baths, medications etc.? I personally don't find much to help me at all I just seem to sleep pain off if I can. The tablets I have are not good. I find relaxing in a bath can be impossible at times and the pains become more severe. I often lie my head on a hot water bottle. > Do you have sleep problems? Yes My main problem at night is getting to sleep , then staying asleep. How do you deal with it? If i am having a bad night I just get up for an hour then try again. > > Do you have family that understands your illness? Not really. They try > Some have found certain foods causes problems with CFS or Fibor, have you? No > > What type of Dr have you found that has helped you the most? My local GP > > > > > > > > SEND POST TO: fibromyalgia-cfs > > HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html > LIST OWNER: -owner > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2001 Report Share Posted November 25, 2001 Survey > Would you share any or all of the things below? Your answer might just be > a help to someone else in some areas. If you answer any of these questions > please make a double space ( enter twice) between them so they will not > all run together. > > > Age range: 29 > Male/female: Female > > What are the symptoms? Tiredness, severe burning pains over various parts of the body, headaches, dizzyness, forgetfulness, speech problems. > Has you illness been diagnosed? 2 years > How long was it that you suffered before you found out what was wrong? 4 years >If Fibro-CFS How long have you been suffering with it? since 1995 > Is there a time that you can remember when it started? After the birth of my twins. (Via ceaserean section) I also suffered a severe ear infection when i left the hospital. > Some of us have found lack of exercise we are overweight. Have you found > this to be a problem also? Slightly, just more recently I have noticed i feel fat I can't exercise. Are you on disability? No > If you are any pointers for others trying to get on disability? I might need help in this area myself soon. > What have you found that helps ease the pain, warm baths, medications etc.? I personally don't find much to help me at all I just seem to sleep pain off if I can. The tablets I have are not good. I find relaxing in a bath can be impossible at times and the pains become more severe. I often lie my head on a hot water bottle. > Do you have sleep problems? Yes My main problem at night is getting to sleep , then staying asleep. How do you deal with it? If i am having a bad night I just get up for an hour then try again. > > Do you have family that understands your illness? Not really. They try > Some have found certain foods causes problems with CFS or Fibor, have you? No > > What type of Dr have you found that has helped you the most? My local GP > > > > > > > > SEND POST TO: fibromyalgia-cfs > > HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html > LIST OWNER: -owner > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Age range: In my early 30s Male/female: Female What are the symptoms? Nearly constant pain in my shoulders and neck which sometimes will radiate down into my hips and when really bad into my legs as well or will radiate down my arms into my fingertips. I also have pain which can be found in my hands one day and around my knees the next. Tiredness-some days are better than others with this one. I used to have to take 2 two hour naps every day plus I would sleep 6-7 hours at night. Thank goodness I haven't done that in a while. Has you illness been diagnosed? Yes How long was it that you suffered before you found out what was wrong? If Fibro-CFS, How long have you been suffering with it? With some tiredness and a little achiness about 5 years. The pain and tiredness really didn't kick in until after my laparoscopic surgery to diagnose me with endometriosis in January of 2000. Is there a time that you can remember when it started? Yes...I used to be able to dance and all around have fun. I didn't have to worry about driving in the afternoons when my tiredness generally happens. Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? No I'm underweight by about 15 pounds. I have a high metabolism so I tend to digest my foods very quickly. I eat about 5-6 mini meals a day. Are you on disability? If you are any pointers for others trying to get on disability? No I don't know how to go about looking into this. What have you found that helps ease the pain, warm baths, medications etc.? Warm baths/showers, pampering oneself with aromatherapy products from Bath and Body Works, taking many breaks from my computer, using my Tempur Pedic mattress and body and bed pillows on my bed. Do you have sleep problems? How do you deal with it? Yes sometimes with regards to falling asleep at a decent hour (not 2 am!!). I deal with it a variety of ways including watching TV, getting on my computer, aromatherapy, etc. Do you have family that understands your illness? Only my husband and perhaps my brother. Everyone else in my family or in my husband's family doesn't really understand any of my illnesses. Some have found certain foods causes problems with CFS or Fibro, have you? No but I have stayed away from Beef for almost 2 years now as well as increasing my caffeine in take and I'm trying to eat more organic foods. What type of Dr have you found that has helped you the most? Haven't found one yet!!! I'm trying to get a handicapped parking permit and my PCP won't give me one even though I have difficulty in walking sometimes. She wants me to park as far away from the doors of stores as possible and get the exercise because I should be walking at least a mile a day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Age range: In my early 30s Male/female: Female What are the symptoms? Nearly constant pain in my shoulders and neck which sometimes will radiate down into my hips and when really bad into my legs as well or will radiate down my arms into my fingertips. I also have pain which can be found in my hands one day and around my knees the next. Tiredness-some days are better than others with this one. I used to have to take 2 two hour naps every day plus I would sleep 6-7 hours at night. Thank goodness I haven't done that in a while. Has you illness been diagnosed? Yes How long was it that you suffered before you found out what was wrong? If Fibro-CFS, How long have you been suffering with it? With some tiredness and a little achiness about 5 years. The pain and tiredness really didn't kick in until after my laparoscopic surgery to diagnose me with endometriosis in January of 2000. Is there a time that you can remember when it started? Yes...I used to be able to dance and all around have fun. I didn't have to worry about driving in the afternoons when my tiredness generally happens. Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? No I'm underweight by about 15 pounds. I have a high metabolism so I tend to digest my foods very quickly. I eat about 5-6 mini meals a day. Are you on disability? If you are any pointers for others trying to get on disability? No I don't know how to go about looking into this. What have you found that helps ease the pain, warm baths, medications etc.? Warm baths/showers, pampering oneself with aromatherapy products from Bath and Body Works, taking many breaks from my computer, using my Tempur Pedic mattress and body and bed pillows on my bed. Do you have sleep problems? How do you deal with it? Yes sometimes with regards to falling asleep at a decent hour (not 2 am!!). I deal with it a variety of ways including watching TV, getting on my computer, aromatherapy, etc. Do you have family that understands your illness? Only my husband and perhaps my brother. Everyone else in my family or in my husband's family doesn't really understand any of my illnesses. Some have found certain foods causes problems with CFS or Fibro, have you? No but I have stayed away from Beef for almost 2 years now as well as increasing my caffeine in take and I'm trying to eat more organic foods. What type of Dr have you found that has helped you the most? Haven't found one yet!!! I'm trying to get a handicapped parking permit and my PCP won't give me one even though I have difficulty in walking sometimes. She wants me to park as far away from the doors of stores as possible and get the exercise because I should be walking at least a mile a day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Age range: In my early 30s Male/female: Female What are the symptoms? Nearly constant pain in my shoulders and neck which sometimes will radiate down into my hips and when really bad into my legs as well or will radiate down my arms into my fingertips. I also have pain which can be found in my hands one day and around my knees the next. Tiredness-some days are better than others with this one. I used to have to take 2 two hour naps every day plus I would sleep 6-7 hours at night. Thank goodness I haven't done that in a while. Has you illness been diagnosed? Yes How long was it that you suffered before you found out what was wrong? If Fibro-CFS, How long have you been suffering with it? With some tiredness and a little achiness about 5 years. The pain and tiredness really didn't kick in until after my laparoscopic surgery to diagnose me with endometriosis in January of 2000. Is there a time that you can remember when it started? Yes...I used to be able to dance and all around have fun. I didn't have to worry about driving in the afternoons when my tiredness generally happens. Some of us have found lack of exercise we are overweight. Have you found this to be a problem also? No I'm underweight by about 15 pounds. I have a high metabolism so I tend to digest my foods very quickly. I eat about 5-6 mini meals a day. Are you on disability? If you are any pointers for others trying to get on disability? No I don't know how to go about looking into this. What have you found that helps ease the pain, warm baths, medications etc.? Warm baths/showers, pampering oneself with aromatherapy products from Bath and Body Works, taking many breaks from my computer, using my Tempur Pedic mattress and body and bed pillows on my bed. Do you have sleep problems? How do you deal with it? Yes sometimes with regards to falling asleep at a decent hour (not 2 am!!). I deal with it a variety of ways including watching TV, getting on my computer, aromatherapy, etc. Do you have family that understands your illness? Only my husband and perhaps my brother. Everyone else in my family or in my husband's family doesn't really understand any of my illnesses. Some have found certain foods causes problems with CFS or Fibro, have you? No but I have stayed away from Beef for almost 2 years now as well as increasing my caffeine in take and I'm trying to eat more organic foods. What type of Dr have you found that has helped you the most? Haven't found one yet!!! I'm trying to get a handicapped parking permit and my PCP won't give me one even though I have difficulty in walking sometimes. She wants me to park as far away from the doors of stores as possible and get the exercise because I should be walking at least a mile a day. Quote Link to comment Share on other sites More sharing options...
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