Guest guest Posted April 28, 2001 Report Share Posted April 28, 2001 I don't get sleep apnea, but as a child I sopped using pillow (still prefer to sleep flat) because I felt vaguely suffocated when I relaxed with my head propped up. I stopped trying to explain this because people would say that my lung function was superb, tilting my chin slightly should have no effect... But I continued to have this problem until a few years ago. Now it is not so noticeable, but when I had an X-ray last Sept., my MD observed that I had reversed the curve of my neck so now it is slightly curved BACK rather than forward. Unfortunately, this causes my head to slip around on my neck and gives migraines and visual problems; however it does seem to have relieved feeling of suffocation. I wonder since you write of this whether the problem may have been some part of the inside of my throat " collapsing " slightly against my up-curved vertebra,slightly reducing air flow? I am uncomfortable having my head turned to right or left relative to body also, so I use my pillows to prop my head at the sides so that I face the ceiling and do not twist my neck at all... Incidently, now I compromise and tuck a rolled up towel under where the curve was supposed to be, but still prefer my head level with my body and not twisted/rotated.... I have never heard of this sort of soft tissue problem, so after my initial description (of my throat feeling " less open " with my head on the pillow) met with skepticism, I simply didn't ask about it anymore... I bet this is related to what your MD was telling you, though, even though nothing testably abnormal (like apnea or low breathing function) was ever observed for me. Sascha --- tootsalba > wrote: > > >smginleyrn@... wrote: >> > >> It is a type of " atypical " sleep apnea, which my doc says is from the EDS. He says because soft tissues are lax, they collapse, and partially obstruct, or obstruct the airways causing low oxygen, and poor sleep, as deep sleep is difficult to achieve. > > >Now that stirs a thought from when Ann was 4 years old and was to get >her tonsils out. The ENT surgeon asked me if Ann chewed chewing gum. I >said indignantly, No. of course not! I was advised to get her to chew >gum to tighten her throat muscles and help prevent bleeding. So there I >was, teaching Ann how to chew gum. It worked, because she had no >bleeding problems. I did the same with Joy when she was 3 and needed >her tonsils out. After that I gave up on the gum. > >It may be worth a try - who knows, I might even try it myself and see if >it works. > >Love and hugs, > >Lilian. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 I have the 1998 Dallas conference on video. Not really much to learn from that though. Pierre Fatigue > > > So many comments about fatigue in various threads that I thought I would > just start a new subject line. > > The thing about fatigue is that, whether one has it or not, and whether > one's nephrologist thinks it is or it isn't related to IgAN, there isn't a > heck of a lot anyone can do about it. It's not like they have a magic > energy > pill they can give you. > > Plus, fatigue can be attributed to so many other things, like blood > pressure > medications, as just one example, the even slight depression that comes > from > having a chronic illness, or, simply not eating enough protein and energy > foods, , etc. A lot of people just instinctively cut back on food when > they > have chronic renal failure, even relatively moderate renal failure. That > can > definitely make you feel sluggish and tired. > > Good activity followed by good sleep is probably the best way to fight > fatigue. > > ...just some things to think about. > > Pierre > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 Everyone is different. I know through experiment that if I eat a lot of meat in one sitting I get pain later. It's really funny in restaurants asking for a small steak! Mind you, I also get cravings for meat at times as well. Reply-To: iga-nephropathy To: <iga-nephropathy > Subject: Re: Re: Fatigue Date: Wed, 29 May 2002 11:37:30 -0400 I suspect that's where people following a self-imposed low protein diet may get into a bit of trouble - just not enough protein and calories to meet the body's energy needs. Pierre Re: Re: Fatigue > I agree with you there. A friend of mine who is a nurse explained to me > that when the body mobilises to fight infection it takes energy from where > ever it can get it. She also said that when you are spilling protein, in a > sense you are peeing away your energy. Though I have to say that the > medication doesn't help either! > > _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 Meat certainly can be hard to digest. You wouldn't have too much trouble with my portions. You should see what 1 oz, or 25 mg of meat looks like! Pierre Re: Re: Fatigue > > > > I agree with you there. A friend of mine who is a nurse explained to me > > that when the body mobilises to fight infection it takes energy from > where > > ever it can get it. She also said that when you are spilling protein, in > a > > sense you are peeing away your energy. Though I have to say that the > > medication doesn't help either! > > > > > > > > > _________________________________________________________________ > Join the world's largest e-mail service with MSN Hotmail. > http://www.hotmail.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 Very small I expect. I saw our celebrity nutritionist on the telly (pre diagnosis and UK trip), and she was saying that normal people don't need to consume nore than 100g of meat per meal, and that 80g was ideal. I weighed it out and thought that was a very small meal! Reply-To: iga-nephropathy To: <iga-nephropathy > Subject: Re: Re: Fatigue Date: Wed, 29 May 2002 21:26:33 -0400 Meat certainly can be hard to digest. You wouldn't have too much trouble with my portions. You should see what 1 oz, or 25 mg of meat looks like! Pierre Re: Re: Fatigue > > > > I agree with you there. A friend of mine who is a nurse explained to me > > that when the body mobilises to fight infection it takes energy from > where > > ever it can get it. She also said that when you are spilling protein, in > a > > sense you are peeing away your energy. Though I have to say that the > > medication doesn't help either! > > > > > > > > > _________________________________________________________________ > Join the world's largest e-mail service with MSN Hotmail. > http://www.hotmail.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 Can everyone please put in to buy Peirre a pair of magnifying glasses so that his meat looks bigger ? kaz Re: Re: Fatigue > > > > I agree with you there. A friend of mine who is a nurse explained to me > > that when the body mobilises to fight infection it takes energy from > where > > ever it can get it. She also said that when you are spilling protein, in > a > > sense you are peeing away your energy. Though I have to say that the > > medication doesn't help either! > > > > > > > > > _________________________________________________________________ > Join the world's largest e-mail service with MSN Hotmail. > http://www.hotmail.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 Sounds kinda naughty Kaz. : ) Re: Re: Fatigue > > > > I agree with you there. A friend of mine who is a nurse explained to me > > that when the body mobilises to fight infection it takes energy from > where > > ever it can get it. She also said that when you are spilling protein, in > a > > sense you are peeing away your energy. Though I have to say that the > > medication doesn't help either! > > > > > > > > > _________________________________________________________________ > Join the world's largest e-mail service with MSN Hotmail. > http://www.hotmail.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 Hi Sally Good message, it sounds like fatigue plagues you at about the same level as it does me. I do exercise, gently I would add, I do aqua aerobics and swim, and it absolutely finishes me off for the evening, but I have to agree with Pierre, the next day I definitely feel better. I will continue to snoop around in the background and mention it to my medics, and maybe one day we will get a reason for it. It helps me to cope, by pacing my daily activities, and accepting help when offered, believe me that was hard, I am a stubborn moo!!!! I now know what my limitations are, and like it or not, I sleep when I need it. Not applicable to us all I know, but I was medically retired on ill health grounds from my job, primarily due to IGAN, but I have other health issues, which may or may not be connected to IGAN, so have time to nap during the day if I need to. I hope it helps to know that you are not alone with this fatigue thing, and I am interested in all the documents you care to share with us. Best wishes Fatigue So many comments about fatigue in various threads that I thought I would just start a new subject line. The thing about fatigue is that, whether one has it or not, and whether one's nephrologist thinks it is or it isn't related to IgAN, there isn't a heck of a lot anyone can do about it. It's not like they have a magic energy pill they can give you. Plus, fatigue can be attributed to so many other things, like blood pressure medications, as just one example, the even slight depression that comes from having a chronic illness, or, simply not eating enough protein and energy foods, , etc. A lot of people just instinctively cut back on food when they have chronic renal failure, even relatively moderate renal failure. That can definitely make you feel sluggish and tired. Good activity followed by good sleep is probably the best way to fight fatigue. ...just some things to think about. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 I was in a probationary period with my job when igan showed on the medical (eventually) I now have no job and getting one when you have to put a kidney disease down in the medical questionnaire has not been funny (or successful). Bitter? Me? Nah!! Fatigue > > > So many comments about fatigue in various threads that I thought I > would > just start a new subject line. > > The thing about fatigue is that, whether one has it or not, and > whether > one's nephrologist thinks it is or it isn't related to IgAN, there > isn't a > heck of a lot anyone can do about it. It's not like they have a magic > energy > pill they can give you. > > Plus, fatigue can be attributed to so many other things, like blood > pressure > medications, as just one example, the even slight depression that > comes > from > having a chronic illness, or, simply not eating enough protein and > energy > foods, , etc. A lot of people just instinctively cut back on food when > they > have chronic renal failure, even relatively moderate renal failure. > That > can > definitely make you feel sluggish and tired. > > Good activity followed by good sleep is probably the best way to fight > fatigue. > > ...just some things to think about. > > Pierre > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 Hi Yes naff aint it. You try getting travel insurance, it costs nearly as much as the holiday!!! As for your not getting a job, smacks of a tad of discrimination if you ask me, isn't there a law against this, for people with disability? Visible or not? I would check this out with the Citizens Advice Bureau, worth a try you know. Good luck for the future job hunting. Re: Fatigue I was in a probationary period with my job when igan showed on the medical (eventually) I now have no job and getting one when you have to put a kidney disease down in the medical questionnaire has not been funny (or successful). Bitter? Me? Nah!! Fatigue > > > So many comments about fatigue in various threads that I thought I > would > just start a new subject line. > > The thing about fatigue is that, whether one has it or not, and > whether > one's nephrologist thinks it is or it isn't related to IgAN, there > isn't a > heck of a lot anyone can do about it. It's not like they have a magic > energy > pill they can give you. > > Plus, fatigue can be attributed to so many other things, like blood > pressure > medications, as just one example, the even slight depression that > comes > from > having a chronic illness, or, simply not eating enough protein and > energy > foods, , etc. A lot of people just instinctively cut back on food when > they > have chronic renal failure, even relatively moderate renal failure. > That > can > definitely make you feel sluggish and tired. > > Good activity followed by good sleep is probably the best way to fight > fatigue. > > ...just some things to think about. > > Pierre > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 Aw shucks... Reply-To: iga-nephropathy To: <iga-nephropathy > Subject: Re: Re: Fatigue Date: Sun, 2 Jun 2002 16:41:28 +1000 Um.....yeah that's what i meant....lol. Or was it? Well blame ...she's the one that helped me find my sense of humour again kaz Re: Re: Fatigue > > > > > > > I agree with you there. A friend of mine who is a nurse explained to > me > > > that when the body mobilises to fight infection it takes energy from > > where > > > ever it can get it. She also said that when you are spilling protein, > in > > a > > > sense you are peeing away your energy. Though I have to say that the > > > medication doesn't help either! > > > > > > > > > > > > > > > > _________________________________________________________________ > > Join the world's largest e-mail service with MSN Hotmail. > > http://www.hotmail.com > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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