Guest guest Posted December 7, 2001 Report Share Posted December 7, 2001 Yes it is very normal for you to be very tired. The fatigue is about the biggest and strongest side effect of the treatment you are on. The best advice I can give you is rest when you feel you need to, take vitamin B12 to help with your energy level, and REST!! Fatigue is a side effect of the Hepatitis in and of itself and it is worsened by the treatment. I got to where I could not even climb our stairs in our house without having to stop halfway up and resting. <br><br>Good luck and I hope the treatment works for you!<br><br>LeighAnn<br><a href=http://www.geocities.com/1Leighann target=new>http://www.geocities.com/1Leighann</a> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2001 Report Share Posted December 7, 2001 Yes it is very normal for you to be very tired. The fatigue is about the biggest and strongest side effect of the treatment you are on. The best advice I can give you is rest when you feel you need to, take vitamin B12 to help with your energy level, and REST!! Fatigue is a side effect of the Hepatitis in and of itself and it is worsened by the treatment. I got to where I could not even climb our stairs in our house without having to stop halfway up and resting. <br><br>Good luck and I hope the treatment works for you!<br><br>LeighAnn<br><a href=http://www.geocities.com/1Leighann target=new>http://www.geocities.com/1Leighann</a> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2001 Report Share Posted December 8, 2001 Yes ...tiredness or fatigue is normal as Leighann has said!! You muct remember one thing and this is a hard lesson to learn. with hep and the treatment you muct not push yourself, if you do you will find out that it is not forgiving and you will be down for a while to recover. Your body is not like it use to be and treatment is really hard on your body. The treatments are to fight the hep and you must rest so that your body can spend its energy to fight and not to do other things. It is just a fact of life that you need to take it easy while you are on treatment....good luck and rest rest rest!!!<br> love ya...tricia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2001 Report Share Posted December 8, 2001 Yes ...tiredness or fatigue is normal as Leighann has said!! You muct remember one thing and this is a hard lesson to learn. with hep and the treatment you muct not push yourself, if you do you will find out that it is not forgiving and you will be down for a while to recover. Your body is not like it use to be and treatment is really hard on your body. The treatments are to fight the hep and you must rest so that your body can spend its energy to fight and not to do other things. It is just a fact of life that you need to take it easy while you are on treatment....good luck and rest rest rest!!!<br> love ya...tricia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2003 Report Share Posted March 5, 2003 I am 6 weeks post-op and have been doing really well. I have lost 30 pounds (started at 206- now 176). But, for the last 5 days I have been extremely fatiqued. I sleep well and get plenty of rest after work- but I am incredibly fatigued. I have also felt that my mood is a little depressed. I still can only eat a very small (2-3 oz total) amount at any one time, and I feel like I'm " fuel-deprived " . Did anyone else experience this? I am taking two vitamins a day, trying to get as much protein and carbs as possible along with fruits and veggies. I have not had much luck with the protein supplements because I simply cannot take in enough volume to be able to get enough in. Any thoughts or suggestions? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2003 Report Share Posted March 5, 2003 Hi , I'd drop the carbs and concentrate on the protein more. Even if you have to pace yourself on the protein supplements over even an hour, it will help... Don't get discouraged, sometimes fatigue comes with the territory in the beginning... Hugs, Lynda Vance Always happy to be a contact........ ..........Please contact privately Cushing Oklahoma 9-5-2001 p8nlady@... 296/168 Re: fatigue? > I am 6 weeks post-op and have been doing really well. I have lost 30 pounds (started at 206- now 176). But, for the last 5 days I have been extremely fatiqued. I sleep well and get plenty of rest after work- but I am incredibly fatigued. > I have also felt that my mood is a little depressed. > I still can only eat a very small (2-3 oz total) amount at any one time, and I feel like I'm " fuel-deprived " . > Did anyone else experience this? > I am taking two vitamins a day, trying to get as much protein and carbs as possible along with fruits and veggies. > I have not had much luck with the protein supplements because I simply cannot take in enough volume to be able to get enough in. > Any thoughts or suggestions? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 Try adding as much salt as you can stand to V8 juice. Worked for me. F. Potter Re: fatigue? I am 6 weeks post-op and have been doing really well. I have lost 30 pounds (started at 206- now 176). But, for the last 5 days I have been extremely fatiqued. I sleep well and get plenty of rest after work- but I am incredibly fatigued. I have also felt that my mood is a little depressed. I still can only eat a very small (2-3 oz total) amount at any one time, and I feel like I'm " fuel-deprived " . Did anyone else experience this? I am taking two vitamins a day, trying to get as much protein and carbs as possible along with fruits and veggies. I have not had much luck with the protein supplements because I simply cannot take in enough volume to be able to get enough in. Any thoughts or suggestions? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 , Some people mix it with their yogurt. Some people make smoothies and just sip on them for a long while. I make a huge protein smoothie every morning and sip on it as long as it lasts. I take it to work with me in a big cup. By the end it's mostly liquid but it's okay. I buy the vanilla whey protein as it's flavor seemed to be easier to mix for me. If the fatique continues, call Dr R's office. Let them help you and find out if you have something going on. It isn't terribly unusally when you lose a lot of weight to get tired. I remember I did. Just watch it to see if it becomes chronic. Good luck with the protein. Cheryl Klein > I am 6 weeks post-op and have been doing really well. I have lost 30 pounds (started at 206- now 176). But, for the last 5 days I have been extremely fatiqued. I sleep well and get plenty of rest after work- but I am incredibly fatigued. > I have also felt that my mood is a little depressed. > I still can only eat a very small (2-3 oz total) amount at any one time, and I feel like I'm " fuel-deprived " . > Did anyone else experience this? > I am taking two vitamins a day, trying to get as much protein and carbs as possible along with fruits and veggies. > I have not had much luck with the protein supplements because I simply cannot take in enough volume to be able to get enough in. > Any thoughts or suggestions? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 drinking gatorade? getting enough salt? tips: take 3 vitamins per day--One Source is recommended protein supplements- mix it up and keep it in the fridge and sip sip sip...it doesnt have to go down all at once. Protein bars? they say the Detour Bars are great. if you eat salt for a day and dont feel better call RR xoxoxo be well cathy s in va > I am 6 weeks post-op and have been doing really well. I have lost 30 pounds (started at 206- now 176). But, for the last 5 days I have been extremely fatiqued. I sleep well and get plenty of rest after work- but I am incredibly fatigued. > I have also felt that my mood is a little depressed. > I still can only eat a very small (2-3 oz total) amount at any one time, and I feel like I'm " fuel-deprived " . > Did anyone else experience this? > I am taking two vitamins a day, trying to get as much protein and carbs as possible along with fruits and veggies. > I have not had much luck with the protein supplements because I simply cannot take in enough volume to be able to get enough in. > Any thoughts or suggestions? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 , You may be low on sodium. Are you drinking Gatorade? Or V8? Broth? Also, we should be taking 3 vitamins a day. I found that if I make my protein shake & put it in the freezer for a while, I can just sip on it--eventually I'll finish it. I still don't think I'm getting enough protein, but at least I'm getting in that 27g from the shake. Stacey 10/23/02 232/167 Re: fatigue? > I am 6 weeks post-op and have been doing really well. I have lost 30 pounds (started at 206- now 176). But, for the last 5 days I have been extremely fatiqued. I sleep well and get plenty of rest after work- but I am incredibly fatigued. > I have also felt that my mood is a little depressed. > I still can only eat a very small (2-3 oz total) amount at any one time, and I feel like I'm " fuel-deprived " . > Did anyone else experience this? > I am taking two vitamins a day, trying to get as much protein and carbs as possible along with fruits and veggies. > I have not had much luck with the protein supplements because I simply cannot take in enough volume to be able to get enough in. > Any thoughts or suggestions? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 The fatigue also comes when you are 2 and 3 years post op. Some days I can barely get out of my bed to go to work. I've tried everything and nothing has helped with the fatigue. I had more energy when I was just a few weeks post op compared to now. It sure doesn't make for an exciting life always being tired and wanting to sleep. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 , I have a similar problem. I am sure I am not taking in enough solids or liquids because the capacity of my stomach is so small. I am constantly experiencing my gorge rising back up my esophagus when I overfill my stomach. It is an all day battle between heartburn, fullness, and reflux trying to get all my medications, food, and suppliments in. Curt H. From " ssitterson@... " <ssitterson@...> on 5 Mar 2003: > I am 6 weeks post-op and have been doing really well. I have lost 30 > pounds (started at 206- now 176). But, for the last 5 days I have been > extremely fatiqued. I sleep well and get plenty of rest after work- but > I am incredibly fatigued. > I have also felt that my mood is a little depressed. > I still can only eat a very small (2-3 oz total) amount at any one time, > and I feel like I'm " fuel-deprived " . > Did anyone else experience this? > I am taking two vitamins a day, trying to get as much protein and carbs > as possible along with fruits and veggies. > I have not had much luck with the protein supplements because I simply > cannot take in enough volume to be able to get enough in. > Any thoughts or suggestions? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 Just an FYI about protein bars. Another great protein bar is the Keto Chocolate Peanut Butter bar sold by www.lifeservices.com. 20 grams of protein and no sugar. They taste just like Reese's Peanut Butter Cups. (Not that anyone on this list would care much about Reese's Peanut Butter Cups, but just thought I'd let you know.) They also have several other flavors, but that's my favorite. Pat Re: fatigue? drinking gatorade? getting enough salt? tips: take 3 vitamins per day--One Source is recommended protein supplements- mix it up and keep it in the fridge and sip sip sip...it doesnt have to go down all at once. Protein bars? they say the Detour Bars are great. if you eat salt for a day and dont feel better call RR xoxoxo be well cathy s in va > I am 6 weeks post-op and have been doing really well. I have lost 30 pounds (started at 206- now 176). But, for the last 5 days I have been extremely fatiqued. I sleep well and get plenty of rest after work- but I am incredibly fatigued. > I have also felt that my mood is a little depressed. > I still can only eat a very small (2-3 oz total) amount at any one time, and I feel like I'm " fuel-deprived " . > Did anyone else experience this? > I am taking two vitamins a day, trying to get as much protein and carbs as possible along with fruits and veggies. > I have not had much luck with the protein supplements because I simply cannot take in enough volume to be able to get enough in. > Any thoughts or suggestions? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 They taste just like Reese's Peanut Butter Cups. (Not that anyone on this list would care much about Reese's Peanut Butter Cups, but just thought I'd let you know come on pat....we are thin....not DEAD!! LOL xoxoxo cathy s in va (still loving a peanut butter reeses egg) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 Curt, Are you adding any protein supplement? If you are experiencing reflux, perhaps you need to try smaller meals more frequently.... Hugs, Lynda Vance Always happy to be a contact........ ..........Please contact privately Cushing Oklahoma 9-5-2001 p8nlady@... 296/168 Re: fatigue? > , I have a similar problem. I am sure I am not taking in enough solids or liquids because the capacity of my stomach is so small. I am constantly experiencing my gorge rising back up my esophagus when I overfill my stomach. It is an all day battle between heartburn, fullness, and reflux trying to get all my medications, food, and suppliments in. > > Curt H. > > From " ssitterson@... " <ssitterson@...> on 5 Mar 2003: > > > I am 6 weeks post-op and have been doing really well. I have lost 30 > > pounds (started at 206- now 176). But, for the last 5 days I have been > > extremely fatiqued. I sleep well and get plenty of rest after work- but > > I am incredibly fatigued. > > I have also felt that my mood is a little depressed. > > I still can only eat a very small (2-3 oz total) amount at any one time, > > and I feel like I'm " fuel-deprived " . > > Did anyone else experience this? > > I am taking two vitamins a day, trying to get as much protein and carbs > > as possible along with fruits and veggies. > > I have not had much luck with the protein supplements because I simply > > cannot take in enough volume to be able to get enough in. > > Any thoughts or suggestions? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 They do say that Detour Bars are great. But are they that good for us as WLS patients...? They do have lots of protein in them... but they also have lots of Carbs in them 21g. Not to mention Cholesterol... and not very low in fats... Compare them to a Snickers bar... According to Vitalady, the Glycerin in them wraps up the protein molecules and would need lots of stomach acid to dissolve which is something we just don't have an abundance. I'd just rather have a protein shake..... Hugs, Lynda Vance Always happy to be a contact........ ..........Please contact privately Cushing Oklahoma 9-5-2001 p8nlady@... 296/168 Re: fatigue? > drinking gatorade? getting enough salt? > > tips: > > take 3 vitamins per day--One Source is recommended > protein supplements- mix it up and keep it in the fridge and sip sip > sip...it doesnt have to go down all at once. Protein bars? they say > the Detour Bars are great. > > if you eat salt for a day and dont feel better call RR > > xoxoxo > be well > cathy s in va > > > > > > > > I am 6 weeks post-op and have been doing really well. I have lost > 30 pounds (started at 206- now 176). But, for the last 5 days I have > been extremely fatiqued. I sleep well and get plenty of rest after > work- but I am incredibly fatigued. > > I have also felt that my mood is a little depressed. > > I still can only eat a very small (2-3 oz total) amount at any one > time, and I feel like I'm " fuel-deprived " . > > Did anyone else experience this? > > I am taking two vitamins a day, trying to get as much protein and > carbs as possible along with fruits and veggies. > > I have not had much luck with the protein supplements because I > simply cannot take in enough volume to be able to get enough in. > > Any thoughts or suggestions? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 HA HA, I love Reese's and don't dare buy them cause I am truly chocolate addicted, LOL. How many calories in this bar? Cheryl > > I am 6 weeks post-op and have been doing really well. I have lost > 30 pounds (started at 206- now 176). But, for the last 5 days I have > been extremely fatiqued. I sleep well and get plenty of rest after > work- but I am incredibly fatigued. > > I have also felt that my mood is a little depressed. > > I still can only eat a very small (2-3 oz total) amount at any one > time, and I feel like I'm " fuel-deprived " . > > Did anyone else experience this? > > I am taking two vitamins a day, trying to get as much protein and > carbs as possible along with fruits and veggies. > > I have not had much luck with the protein supplements because I > simply cannot take in enough volume to be able to get enough in. > > Any thoughts or suggestions? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 I just went and checked. There are 220 calories in the bar. 9 gm of fat. 24 gm of protein. No mallitol (the stuff that gives you gas and diarrhea). No saccharin and no aspartame. Pat Re: fatigue? HA HA, I love Reese's and don't dare buy them cause I am truly chocolate addicted, LOL. How many calories in this bar? Cheryl > > I am 6 weeks post-op and have been doing really well. I have lost > 30 pounds (started at 206- now 176). But, for the last 5 days I have > been extremely fatiqued. I sleep well and get plenty of rest after > work- but I am incredibly fatigued. > > I have also felt that my mood is a little depressed. > > I still can only eat a very small (2-3 oz total) amount at any one > time, and I feel like I'm " fuel-deprived " . > > Did anyone else experience this? > > I am taking two vitamins a day, trying to get as much protein and > carbs as possible along with fruits and veggies. > > I have not had much luck with the protein supplements because I > simply cannot take in enough volume to be able to get enough in. > > Any thoughts or suggestions? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 , My daughter is tired all the time. Her specialist told me it does come with having CVID and if it starts to cause problems in everyday life she could give her some Ritalin to keep her going. Since I am so against drugs if we don't have to use them I was told to try caffeine. I give my daughter a can of mountain dew everyday and it has made all the difference in the world. She is still tired but not as tired. I find about once a week she sleeps for about 17 hours at one time and catches up. This has seem to help especially during school. Her teacher said she saw a remarkable difference in . She would arrive at school and be her perky happy self and her teacher would watch her go down hill. After the Mountain Dew is back to her perky happy self again. It isn't the best way to handle it but it works. Lorri ( CVID 14years old Fatigue? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 In a message dated 8/6/04 8:34:28 AM Pacific Daylight Time, llkraft@... writes: It isn't the best way to handle it but it works. Hi Lorri, Have you considered just buying caffeine pills and cutting them in half or quarters?? It would be much easier on her teeth. Just my two cents--since it's the caffeine that is helping her energy level. Sandi, Mom to , age 11. Immune deficiency, Tetrology of Fallot, Pulmonary valve transplant, Mitral valve stenosis, severe allergies, chronic ear, nose and throat infections, asthma and Carnitine deficiency. Suspected Di Syndrome. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 My son, who has Hyper IgM Syndrome, gets somewhat fatigued just before his IVIG treatment. Not that he slows down, just he goes to bed a bit earlier and has big, tired looking circles under his eyes for about a week prior to treatment. Fatigue is not an uncommon complaint for our kiddos. You may very well see an improvement after a few IVIG treatments. However, as an afterthought, some chronically ill children go through clinical depression, which is characterized by feeling very tired and sad. Several, if not many, of our kids have experienced depression. You may want to check into it. Speaking of depression. This is probably an area that can't be over-discussed, for both our children's and our own sakes. Being the parent of a PID kid can be very challenging. Having to deal with the illnesses themselves can be difficult enought, but feeling helpless to " make it better " , having to deal with added financial burdens, difficult schooling situations, insurance nightmares, increased pressure on marriage and family relationships.......have I said enough??? If any of you have experienced or are now experiencing depression, well, that would be a normal reaction. Find a way to take care of yourself too. Depression can be dealt with, but only if it is acknowledged. So if you have been feeling very tired, irritable, hopeless, take an inventory of what's going on with yourself and begin to do something about it today. God bless, Wenoka At 01:23 PM 08/06/2004 +0000, you wrote: >I was wondering if fatigue is a common issue with CVID? My son Conner has >virtually no energy to do anything and has been this way since he was >hospitalized in April. >snip> > >Mom to Conner (10, Asperger's, mild CP, partial seizures, asthma, GERD, and >CVID), >Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided), >Evan (10, mild hearing loss/unaided), >and Kelsey - surviving triplet (8, hearing - but not listening!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 In a message dated 8/6/2004 9:57:37 AM Eastern Daylight Time, tripletsand1@... writes: I was wondering if fatigue is a common issue with CVID? Yes, it sure is!!! Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 In a message dated 8/6/2004 11:59:12 AM Eastern Daylight Time, lighthouse68@... writes: Being the parent of a PID kid can be very challenging. Having to deal with the illnesses themselves can be difficult enought, but feeling helpless to " make it better " , having to deal with added financial burdens, difficult schooling situations, insurance nightmares, increased pressure on marriage and family relationships.......have I said enough??? If any of you have experienced or are now experiencing depression, well, that would be a normal reaction. Find a way to take care of yourself too. Depression can be dealt with, but only if it is acknowledged. So if you have been feeling very tired, irritable, hopeless, take an inventory of what's going on with yourself and begin to do something about it today. You brought tears to my eyes. I am all these things! Plus I can't do anything right anymore. Can't think straight. Mess everything I touch up, lose everything. I feel very overwhelmed. I am already on Celexa. It has always helped. But not since all this with Brittany I guess. Maybe I need the dose raised. Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Hi , here, who is 8 almost 9 has always had a problem with fatigue, she is picking up and has more energy being on IVIG, she still poops out at the 4th week. She has never been able to keep up with her friends, has to rest when playing, they now watch out for her and slow down the play when needed. AS far as others I have heard a lot of mom's say the same thing about fatigue. School is tough, she doesn't get recess every day, maybe 2 days a week, the other days she rests in the nurses office, she also does just one day of gym and not many after school things. mom to - CVID, asthma, GERD Fatigue? I was wondering if fatigue is a common issue with CVID? My son Conner has virtually no energy to do anything and has been this way since he was hospitalized in April. He hasn't really been sick since then. He's on prophylactic antibiotics and he is scheduled to start IVIG next month. He lies on the couch or just plays quietly in his room most of the day. His siblings are usually outside playing in the pool or riding bikes. I can get him to go outside with a lot of prodding, but he just seems exhausted all the time. He even complains about being tired alot, normally he doesn't complain about anything. I asked one of our docs and he said that it shouldn't be related. He said we could test him for the EBV, but it wouldn't change anything. If anyone can relate, please let me know, otherwise I'm thinking maybe we should start investigating things a bit further. Mom to Conner (10, Asperger's, mild CP, partial seizures, asthma, GERD, and CVID), Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided), Evan (10, mild hearing loss/unaided), and Kelsey - surviving triplet (8, hearing - but not listening!) _________________________________________________________________ Don't just search. Find. Check out the new MSN Search! http://search.msn.click-url.com/go/onm00200636ave/direct/01/<http://search.msn.c\ lick-url.com/go/onm00200636ave/direct/01/> This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribe@groups<mailto:-unsubscribe@groups>. To search group archives go to: /messages<PedP\ ID/messages> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 In a message dated 8/6/2004 5:13:05 PM Eastern Daylight Time, pmork@... writes: I don't know if it is related, but my Rebekah had major fatigue!!! It stopped after we raised her dose and after she had been infused for a year. That is great new, that the fatigue stopped! I bet you never thought it would after a whole year! I'm sure that gives many of us hope. Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
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