Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Dear Sherri, I am new at the site and really confussed on how it all works. Do we all get all the emails that people send to one another? LOL My neuro problems aren't helping me here! lol. Anyway, I saw your email about the flare question in my mailbox and even though I don't know how all this works, had to answer at least what I believe. I have had fibro and chronic fatigue most my life and I am 44 now. I think I have seen a lot in fibroland and what I have noticed is that there are times when you almost feel like you are going into some sort of remission. I do not believe that fibro has remissions, but I do believe that chronic fatigue does. When it seems like you are going into a remission, all your symptoms are almost not there, but just there enough to make you know that it is still there. Symptoms are mild and trigger points may only be one or two, in areas that are your worst areas when in a flare. If tested by trigger points, you may not have the dx of fibro, but it is still there. (Darn It!) Just when I think it is going, I fall, I get sick or something and it flares up on me. I have had times of remission with the Chronic fatigue, but never the fibro. Hope this helps. Just my two cents. May Life Be Kind To You! Silverlocket/Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 That's good news Sherri. Hope it lasts and lasts. a Faye --- Sherri B slb@...> wrote: > Hello one and all! Hope everyone is feeling better > today!! Our weather has > taken a break from the humidity and it's about time > > > Okay, I was wondering..... > If you ARE NOT in a flare, do you still hurt? > > I'm doing pretty good right now except for my neck > and shoulders only > hurting when I move the wrong way. Am I still in a > flare? I do not feel > sick right now either. Not sure what's going on. I > even swept and mopped > the floor yesterday and I am not hurting today!!! > > Just wondering... > Hugs, > Sherri > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 That's good news Sherri. Hope it lasts and lasts. a Faye --- Sherri B slb@...> wrote: > Hello one and all! Hope everyone is feeling better > today!! Our weather has > taken a break from the humidity and it's about time > > > Okay, I was wondering..... > If you ARE NOT in a flare, do you still hurt? > > I'm doing pretty good right now except for my neck > and shoulders only > hurting when I move the wrong way. Am I still in a > flare? I do not feel > sick right now either. Not sure what's going on. I > even swept and mopped > the floor yesterday and I am not hurting today!!! > > Just wondering... > Hugs, > Sherri > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 That's good news Sherri. Hope it lasts and lasts. a Faye --- Sherri B slb@...> wrote: > Hello one and all! Hope everyone is feeling better > today!! Our weather has > taken a break from the humidity and it's about time > > > Okay, I was wondering..... > If you ARE NOT in a flare, do you still hurt? > > I'm doing pretty good right now except for my neck > and shoulders only > hurting when I move the wrong way. Am I still in a > flare? I do not feel > sick right now either. Not sure what's going on. I > even swept and mopped > the floor yesterday and I am not hurting today!!! > > Just wondering... > Hugs, > Sherri > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 I hope so too but my neck is really starting to hurt. Had to take daughter to eye dr today so also wanted to go to walmart, probably too much for one time. I am also getting very tired > > That's good news Sherri. Hope it lasts and lasts. > > a Faye > --- Sherri B slb@...> wrote: >> Hello one and all! Hope everyone is feeling better >> today!! Our weather has >> taken a break from the humidity and it's about time >> >> >> Okay, I was wondering..... >> If you ARE NOT in a flare, do you still hurt? >> >> I'm doing pretty good right now except for my neck >> and shoulders only >> hurting when I move the wrong way. Am I still in a >> flare? I do not feel >> sick right now either. Not sure what's going on. I >> even swept and mopped >> the floor yesterday and I am not hurting today!!! >> >> Just wondering... >> Hugs, >> Sherri >> >> > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 I hope so too but my neck is really starting to hurt. Had to take daughter to eye dr today so also wanted to go to walmart, probably too much for one time. I am also getting very tired > > That's good news Sherri. Hope it lasts and lasts. > > a Faye > --- Sherri B slb@...> wrote: >> Hello one and all! Hope everyone is feeling better >> today!! Our weather has >> taken a break from the humidity and it's about time >> >> >> Okay, I was wondering..... >> If you ARE NOT in a flare, do you still hurt? >> >> I'm doing pretty good right now except for my neck >> and shoulders only >> hurting when I move the wrong way. Am I still in a >> flare? I do not feel >> sick right now either. Not sure what's going on. I >> even swept and mopped >> the floor yesterday and I am not hurting today!!! >> >> Just wondering... >> Hugs, >> Sherri >> >> > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Sherri writes, > Okay, I was wondering..... > If you ARE NOT in a flare, do you still hurt? Yes, you still hurt. If you are me, you hurt all the time. Only in a flare, the pain is much worse. > > Take care, Irene Books may well be the only true magic Alice Hoffman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Sherri writes, > Okay, I was wondering..... > If you ARE NOT in a flare, do you still hurt? Yes, you still hurt. If you are me, you hurt all the time. Only in a flare, the pain is much worse. > > Take care, Irene Books may well be the only true magic Alice Hoffman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Sherri writes, > Okay, I was wondering..... > If you ARE NOT in a flare, do you still hurt? Yes, you still hurt. If you are me, you hurt all the time. Only in a flare, the pain is much worse. > > Take care, Irene Books may well be the only true magic Alice Hoffman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 --- The only time I don't feel any pain is after half a pint of vodka. If I can sleep in the next morning I won't have a hangover. I can only do this about once a month, because in actuality, ethanol is VERY BAD for us. On my best day, I have some level of pain. In @y..., Sherri B wrote: > Hello one and all! Hope everyone is feeling better today!! Our weather has > taken a break from the humidity and it's about time > > Okay, I was wondering..... > If you ARE NOT in a flare, do you still hurt? > > I'm doing pretty good right now except for my neck and shoulders only > hurting when I move the wrong way. Am I still in a flare? I do not feel > sick right now either. Not sure what's going on. I even swept and mopped > the floor yesterday and I am not hurting today!!! > > Just wondering... > Hugs, > Sherri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 --- The only time I don't feel any pain is after half a pint of vodka. If I can sleep in the next morning I won't have a hangover. I can only do this about once a month, because in actuality, ethanol is VERY BAD for us. On my best day, I have some level of pain. In @y..., Sherri B wrote: > Hello one and all! Hope everyone is feeling better today!! Our weather has > taken a break from the humidity and it's about time > > Okay, I was wondering..... > If you ARE NOT in a flare, do you still hurt? > > I'm doing pretty good right now except for my neck and shoulders only > hurting when I move the wrong way. Am I still in a flare? I do not feel > sick right now either. Not sure what's going on. I even swept and mopped > the floor yesterday and I am not hurting today!!! > > Just wondering... > Hugs, > Sherri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 --- The only time I don't feel any pain is after half a pint of vodka. If I can sleep in the next morning I won't have a hangover. I can only do this about once a month, because in actuality, ethanol is VERY BAD for us. On my best day, I have some level of pain. In @y..., Sherri B wrote: > Hello one and all! Hope everyone is feeling better today!! Our weather has > taken a break from the humidity and it's about time > > Okay, I was wondering..... > If you ARE NOT in a flare, do you still hurt? > > I'm doing pretty good right now except for my neck and shoulders only > hurting when I move the wrong way. Am I still in a flare? I do not feel > sick right now either. Not sure what's going on. I even swept and mopped > the floor yesterday and I am not hurting today!!! > > Just wondering... > Hugs, > Sherri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Ahhhh, the old booze, I can't hold it at all so guess that's out for me, LOL! I've never been a good drinker. Sherri > > --- The only time I don't feel any pain is after half a pint of > vodka. If I can sleep in the next morning I won't have a hangover. > I can only do this about once a month, because in actuality, ethanol > is VERY BAD for us. On my best day, I have some level of pain. > > In @y..., Sherri B wrote: >> Hello one and all! Hope everyone is feeling better today!! Our > weather has >> taken a break from the humidity and it's about time >> >> Okay, I was wondering..... >> If you ARE NOT in a flare, do you still hurt? >> >> I'm doing pretty good right now except for my neck and shoulders > only >> hurting when I move the wrong way. Am I still in a flare? I do > not feel >> sick right now either. Not sure what's going on. I even swept and > mopped >> the floor yesterday and I am not hurting today!!! >> >> Just wondering... >> Hugs, >> Sherri > > > > SEND POST TO: fibromyalgia-cfs > > HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html > LIST OWNER: " Missy " Parrot004@...> > UNSUBSCRIBE:fibromyalgia-cfs-unsubscribe > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Ahhhh, the old booze, I can't hold it at all so guess that's out for me, LOL! I've never been a good drinker. Sherri > > --- The only time I don't feel any pain is after half a pint of > vodka. If I can sleep in the next morning I won't have a hangover. > I can only do this about once a month, because in actuality, ethanol > is VERY BAD for us. On my best day, I have some level of pain. > > In @y..., Sherri B wrote: >> Hello one and all! Hope everyone is feeling better today!! Our > weather has >> taken a break from the humidity and it's about time >> >> Okay, I was wondering..... >> If you ARE NOT in a flare, do you still hurt? >> >> I'm doing pretty good right now except for my neck and shoulders > only >> hurting when I move the wrong way. Am I still in a flare? I do > not feel >> sick right now either. Not sure what's going on. I even swept and > mopped >> the floor yesterday and I am not hurting today!!! >> >> Just wondering... >> Hugs, >> Sherri > > > > SEND POST TO: fibromyalgia-cfs > > HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html > LIST OWNER: " Missy " Parrot004@...> > UNSUBSCRIBE:fibromyalgia-cfs-unsubscribe > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2002 Report Share Posted November 25, 2002 In a message dated 11/25/2002 1:44:34 PM Central Standard Time, tczcowl@... writes: > > My son is congested. His physician says it's bronchitis,plus he has > an ear infection. She thought that he needed a chest x-ray. When I called > the CF clinic, they said that since he has one in the Spring, we didn't > need to do another one. She said to just have him take the meds for the > ear infection. > Any comments. > > Cheryl,mom to 3 boys, Zac 6 yrs. wocf, Jake 2 yrs. wocf, Matty 10 mo. wcf I would say do a throat Culture! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2002 Report Share Posted November 25, 2002 In a message dated 11/25/2002 1:44:34 PM Central Standard Time, tczcowl@... writes: > > My son is congested. His physician says it's bronchitis,plus he has > an ear infection. She thought that he needed a chest x-ray. When I called > the CF clinic, they said that since he has one in the Spring, we didn't > need to do another one. She said to just have him take the meds for the > ear infection. > Any comments. > > Cheryl,mom to 3 boys, Zac 6 yrs. wocf, Jake 2 yrs. wocf, Matty 10 mo. wcf I would say do a throat Culture! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Jill THanks for your quick response. Hope all is well with you. I tried to get your address so that when we were in Toronto and on the way to the cottage I could have stopped in or at the very least called. However our computer crashed and it looks like we need to get it cleaned up or a new hard drive as my son states (all I see are dollar signs) Anyway we had a good time at Sauble, the weather was great. Its also a sad time there as it was one of Danny's favourite places to be. There are alot of great memories, so we tried to concentrate on those. Take Care & thanks again Betty Re: another question > Try a wet compress gently draped over the eye. It will reduce in swelling, > but it may take time - the infection and the drops are an irritant, and the > response is the swelling. > > Jill > > > > > > > To learn more about EDS, visit our website: http://www.ehlersdanlos.ca > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Try a wet compress gently draped over the eye. It will reduce in swelling, but it may take time - the infection and the drops are an irritant, and the response is the swelling. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 Hello everyone, I saw an ad on TV for an Inogen 1 machine. I called them to get information because I was thinking about maybe buying a portable when my house sells. I got a call today and they said that Medicare will pay for the machine but I would have to use them as my oxygen provider. They said that I would also get a small concentrator in case anything went wrong with the Inogen. It is all done by phone. I would love to have the machine. That and a small generator would solve my sailing problems. However I wouldn't have tanks. It sounds to me as though the battery lasts for 3 hours so if I had 2 batteries I could go for 6 hours. Around here the power can go out for days. I have had power outages for as long as 3 days in Port Orchard. I didn't live in town, though. I will see my pulmo doctor next Thursday and I'll talk to him but I wanted to find out what you all think. Beverley Joy, IPF 09 Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 BJ I don't recall what levels of oxygen you are on, but I would never consider an Inogen as my only source of oxygen. It cannot be used for sleep, is pulse only, and doesn't go very high in terms of liter flow. The only POC that has continuous is the Sequal Eclipse. As to the company you called, I suspect they are one of what I politely refer to as the POC pushers who push you toward that solution because that is all they have. While it might work for some COPD patients, it will not long term for a PF'er. Be very very wary of their promises. Inogen is fine for what it's designed for but has many limitations. There are plenty of other ways to solve your sailing problems with either compressed oxygen, liquid oxygen or with even regular concentrators and inverters or generators tossed in. An Inogen also might help for a short time as part of a solution. Although, if I were looking to purchase a POC, there are several others I'd probably choose over the Inogen. It was first so still gets more attention than it deserves versus the others offered today. > > Hello everyone, > I saw an ad on TV for an Inogen 1 machine. I called them to get information because I was thinking about maybe buying a portable when my house sells. I got a call today and they said that Medicare will pay for the machine but I would have to use them as my oxygen provider. They said that I would also get a small concentrator in case anything went wrong with the Inogen. It is all done by phone. I would love to have the machine. That and a small generator would solve my sailing problems. However I wouldn't have tanks. It sounds to me as though the battery lasts for 3 hours so if I had 2 batteries I could go for 6 hours. Around here the power can go out for days. I have had power outages for as long as 3 days in Port Orchard. I didn't live in town, though. I will see my pulmo doctor next Thursday and I'll talk to him but I wanted to find out what you all think. Beverley Joy, IPF 09 Idaho > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 BJ I don't recall what levels of oxygen you are on, but I would never consider an Inogen as my only source of oxygen. It cannot be used for sleep, is pulse only, and doesn't go very high in terms of liter flow. The only POC that has continuous is the Sequal Eclipse. As to the company you called, I suspect they are one of what I politely refer to as the POC pushers who push you toward that solution because that is all they have. While it might work for some COPD patients, it will not long term for a PF'er. Be very very wary of their promises. Inogen is fine for what it's designed for but has many limitations. There are plenty of other ways to solve your sailing problems with either compressed oxygen, liquid oxygen or with even regular concentrators and inverters or generators tossed in. An Inogen also might help for a short time as part of a solution. Although, if I were looking to purchase a POC, there are several others I'd probably choose over the Inogen. It was first so still gets more attention than it deserves versus the others offered today. > > Hello everyone, > I saw an ad on TV for an Inogen 1 machine. I called them to get information because I was thinking about maybe buying a portable when my house sells. I got a call today and they said that Medicare will pay for the machine but I would have to use them as my oxygen provider. They said that I would also get a small concentrator in case anything went wrong with the Inogen. It is all done by phone. I would love to have the machine. That and a small generator would solve my sailing problems. However I wouldn't have tanks. It sounds to me as though the battery lasts for 3 hours so if I had 2 batteries I could go for 6 hours. Around here the power can go out for days. I have had power outages for as long as 3 days in Port Orchard. I didn't live in town, though. I will see my pulmo doctor next Thursday and I'll talk to him but I wanted to find out what you all think. Beverley Joy, IPF 09 Idaho > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 BJ last year i wanted to by a POC, at the time i was using demand 2 lpm. Today, when active, i use continuous 3 - 4 lpm. glad i did not invest in a POC that would not provide me with enough o2 as the disease progresses Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 inactive 4/09 www.transplantfund.org--- Subject: another questionTo: Breathe-Support Date: Friday, April 24, 2009, 2:05 AM Hello everyone, I saw an ad on TV for an Inogen 1 machine. I called them to get information because I was thinking about maybe buying a portable when my house sells. I got a call today and they said that Medicare will pay for the machine but I would have to use them as my oxygen provider. They said that I would also get a small concentrator in case anything went wrong with the Inogen. It is all done by phone. I would love to have the machine. That and a small generator would solve my sailing problems. However I wouldn't have tanks. It sounds to me as though the battery lasts for 3 hours so if I had 2 batteries I could go for 6 hours. Around here the power can go out for days. I have had power outages for as long as 3 days in Port Orchard. I didn't live in town, though. I will see my pulmo doctor next Thursday and I'll talk to him but I wanted to find out what you all think. Beverley Joy, IPF 09 Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 BJ last year i wanted to by a POC, at the time i was using demand 2 lpm. Today, when active, i use continuous 3 - 4 lpm. glad i did not invest in a POC that would not provide me with enough o2 as the disease progresses Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 inactive 4/09 www.transplantfund.org--- Subject: another questionTo: Breathe-Support Date: Friday, April 24, 2009, 2:05 AM Hello everyone, I saw an ad on TV for an Inogen 1 machine. I called them to get information because I was thinking about maybe buying a portable when my house sells. I got a call today and they said that Medicare will pay for the machine but I would have to use them as my oxygen provider. They said that I would also get a small concentrator in case anything went wrong with the Inogen. It is all done by phone. I would love to have the machine. That and a small generator would solve my sailing problems. However I wouldn't have tanks. It sounds to me as though the battery lasts for 3 hours so if I had 2 batteries I could go for 6 hours. Around here the power can go out for days. I have had power outages for as long as 3 days in Port Orchard. I didn't live in town, though. I will see my pulmo doctor next Thursday and I'll talk to him but I wanted to find out what you all think. Beverley Joy, IPF 09 Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 Thank you for your input. BJ another questionTo: Breathe-Support Date: Friday, April 24, 2009, 2:05 AM Hello everyone, I saw an ad on TV for an Inogen 1 machine. I called them to get information because I was thinking about maybe buying a portable when my house sells. I got a call today and they said that Medicare will pay for the machine but I would have to use them as my oxygen provider. They said that I would also get a small concentrator in case anything went wrong with the Inogen. It is all done by phone. I would love to have the machine. That and a small generator would solve my sailing problems. However I wouldn't have tanks. It sounds to me as though the battery lasts for 3 hours so if I had 2 batteries I could go for 6 hours. Around here the power can go out for days. I have had power outages for as long as 3 days in Port Orchard. I didn't live in town, though. I will see my pulmo doctor next Thursday and I'll talk to him but I wanted to find out what you all think. Beverley Joy, IPF 09 Idaho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2009 Report Share Posted April 24, 2009 Thank you for your input. BJ another questionTo: Breathe-Support Date: Friday, April 24, 2009, 2:05 AM Hello everyone, I saw an ad on TV for an Inogen 1 machine. I called them to get information because I was thinking about maybe buying a portable when my house sells. I got a call today and they said that Medicare will pay for the machine but I would have to use them as my oxygen provider. They said that I would also get a small concentrator in case anything went wrong with the Inogen. It is all done by phone. I would love to have the machine. That and a small generator would solve my sailing problems. However I wouldn't have tanks. It sounds to me as though the battery lasts for 3 hours so if I had 2 batteries I could go for 6 hours. Around here the power can go out for days. I have had power outages for as long as 3 days in Port Orchard. I didn't live in town, though. I will see my pulmo doctor next Thursday and I'll talk to him but I wanted to find out what you all think. Beverley Joy, IPF 09 Idaho Quote Link to comment Share on other sites More sharing options...
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