Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 I am newly diagnosed, so this is new to me. But I seem to fatigue so easily. Walking to the mailbox about does me in- my arms and legs get so tired not to mention the shortness of breath. I guess this goes with having mito but I get so discouraged sometimes. I am not complaining but my husband does not understand. I have recently gone on disability through my work and I think he forgets there is a reason I am not working! I guess I am just tired and need to vent since it's hard to find people that understand. This probably makes no sense so I am going to bed. Thanks to you all! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 HI , It DOES make sense. Those of us who experience fatigue totally understand. I sleep for 18 to 20 hours a day and at times even longer than that. There are days when I sleep for 48 hours and longer straight through, no getting up to eat, drink or potty. My fatigue is really bad. And like you almost anything I do I am tired afterwards. It is discouraging and at times it is hard to accept. The reason your husband doesn't understand is most likely b/c you look fine. So many people who don't know about the disease or don't understand the disease think and often say " Well, you look good today " and under my breath I say " If you only knew how long it took me to get ready today and get out of the house " In time your husband will understand what you are going through and what this disease is all about. It is hard on them b/c they don't know what to do to help us. He is also welcome on this list. We have some guys who are members here and maybe they can help him with his feelings. The shortness of breath(aka SOB) should be checked out. If you haven't already had this checked please do. SOB can be what we also know as " Air Hunger " or something that is worse and needs attention. Have you had any Pulmonary Function Tests(PFT's) done? Have you had an echo done? These are important tests that you might want to mention to your doctors and have them send you for them. I get them done yearly. And always remember that you are at the right place to VENT. That is what we are here for. We all understand and have been in your shoes. It is hard to deal with having a disease, not working any longer, and the changes in your life. We are here for you, so VENT away........ If I can help you with anything else let me know and you can always email me privately at peetie@... Hugs, Ann-Marie P.S. have a good night. At 10:43 PM 6/16/2005, you wrote: >To: > >Subject: fatigue > >I am newly diagnosed, so this is new to me. But I seem to fatigue so >easily. Walking to the mailbox about does me in- my arms and legs get >so tired not to mention the shortness of breath. I guess this goes with >having mito but I get so discouraged sometimes. I am not complaining >but my husband does not understand. I have recently gone on disability >through my work and I think he forgets there is a reason I am not >working! I guess I am just tired and need to vent since it's hard to >find people that understand. This probably makes no sense so I am going >to bed. Thanks to you all! > > > > >Medical Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 HI , It DOES make sense. Those of us who experience fatigue totally understand. I sleep for 18 to 20 hours a day and at times even longer than that. There are days when I sleep for 48 hours and longer straight through, no getting up to eat, drink or potty. My fatigue is really bad. And like you almost anything I do I am tired afterwards. It is discouraging and at times it is hard to accept. The reason your husband doesn't understand is most likely b/c you look fine. So many people who don't know about the disease or don't understand the disease think and often say " Well, you look good today " and under my breath I say " If you only knew how long it took me to get ready today and get out of the house " In time your husband will understand what you are going through and what this disease is all about. It is hard on them b/c they don't know what to do to help us. He is also welcome on this list. We have some guys who are members here and maybe they can help him with his feelings. The shortness of breath(aka SOB) should be checked out. If you haven't already had this checked please do. SOB can be what we also know as " Air Hunger " or something that is worse and needs attention. Have you had any Pulmonary Function Tests(PFT's) done? Have you had an echo done? These are important tests that you might want to mention to your doctors and have them send you for them. I get them done yearly. And always remember that you are at the right place to VENT. That is what we are here for. We all understand and have been in your shoes. It is hard to deal with having a disease, not working any longer, and the changes in your life. We are here for you, so VENT away........ If I can help you with anything else let me know and you can always email me privately at peetie@... Hugs, Ann-Marie P.S. have a good night. At 10:43 PM 6/16/2005, you wrote: >To: > >Subject: fatigue > >I am newly diagnosed, so this is new to me. But I seem to fatigue so >easily. Walking to the mailbox about does me in- my arms and legs get >so tired not to mention the shortness of breath. I guess this goes with >having mito but I get so discouraged sometimes. I am not complaining >but my husband does not understand. I have recently gone on disability >through my work and I think he forgets there is a reason I am not >working! I guess I am just tired and need to vent since it's hard to >find people that understand. This probably makes no sense so I am going >to bed. Thanks to you all! > > > > >Medical Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2005 Report Share Posted June 18, 2005 Thanks! I ahve had pft's and an echo done. They were both abnormal. My pft's are not good! I am on a bipap now and I am still trying to get used to it. My ejection fraction is 45 which is not horrible but not normal and my left atrium is enlarged.My doctors are following me closely. One of my biggest challenges now that is stressing me out is my insurance. I will be losing it in August unless I want to pay COBRA. But i can't afford to let it lapse but my dear husband doesn't think we can afford it . So this has been a major issue right now and it's not helping me as far as how I am feeling. Anyway thanks to all of you!! Ann-Marie Mc peetie@...> wrote: HI , It DOES make sense. Those of us who experience fatigue totally understand. I sleep for 18 to 20 hours a day and at times even longer than that. There are days when I sleep for 48 hours and longer straight through, no getting up to eat, drink or potty. My fatigue is really bad. And like you almost anything I do I am tired afterwards. It is discouraging and at times it is hard to accept. The reason your husband doesn't understand is most likely b/c you look fine. So many people who don't know about the disease or don't understand the disease think and often say " Well, you look good today " and under my breath I say " If you only knew how long it took me to get ready today and get out of the house " In time your husband will understand what you are going through and what this disease is all about. It is hard on them b/c they don't know what to do to help us. He is also welcome on this list. We have some guys who are members here and maybe they can help him with his feelings. The shortness of breath(aka SOB) should be checked out. If you haven't already had this checked please do. SOB can be what we also know as " Air Hunger " or something that is worse and needs attention. Have you had any Pulmonary Function Tests(PFT's) done? Have you had an echo done? These are important tests that you might want to mention to your doctors and have them send you for them. I get them done yearly. And always remember that you are at the right place to VENT. That is what we are here for. We all understand and have been in your shoes. It is hard to deal with having a disease, not working any longer, and the changes in your life. We are here for you, so VENT away........ If I can help you with anything else let me know and you can always email me privately at peetie@... Hugs, Ann-Marie P.S. have a good night. At 10:43 PM 6/16/2005, you wrote: >To: > >Subject: fatigue > >I am newly diagnosed, so this is new to me. But I seem to fatigue so >easily. Walking to the mailbox about does me in- my arms and legs get >so tired not to mention the shortness of breath. I guess this goes with >having mito but I get so discouraged sometimes. I am not complaining >but my husband does not understand. I have recently gone on disability >through my work and I think he forgets there is a reason I am not >working! I guess I am just tired and need to vent since it's hard to >find people that understand. This probably makes no sense so I am going >to bed. Thanks to you all! > > > > >Medical Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 My last biopsy said stage 1-2 but my last MRCP showed a 50% stricture and a Dialated duct, not the Common Bile Duct but the next branch up. Thus far I have not been told that I have cirhossis. I do have fibromyalgia, but the fatigue has never been as bad as it has been this last year. My LFT's have tripled over the last 3 months so I think I am progressing and so is the fatigue!! Dawn > > Does everyone with PSC who experiences fatigue also have cirhossis of the liver? > I have been trying to understand the issue of fatigue and I had an extremely disconcerting discussion with a doctor today. I am hoping some of you may be able to help me put my mind at ease. > Thanks > Theresa > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 I, too, had fatigue as my primary symptom for many years. The URQ pain followed. I was biopsied 3 years ago at stage 2 (but originally diagnosed nearly 10 years ago). My Hep talked to me last week about repeating the biopsy to get an update on the progression of the disease, but together we decided against it. Although it's apparently routine to re-check every 3-5 years, the doctor acknowledged that I wasn't sick enough to be listed yet and if my biopsy showed disease advancement, it wouldn't change the medication or treatment I'm receiving. Anyway, I never seem to know if my fatigue is exclusively from the PSC now or if it's also a result of the pain medication I take (I go to a Pain Clinic to deal with the chronic pain - something that affects some, but not all of us). Regardless, fatigue is the element that I find most overwhelming. Fatigue can be present at early stages as well as advanced stages, but I've never heard that its presence is necesssarily an indication of serious disease progression. Hang in there! Get as much rest as you can, and try getting into the routine of some regular exercise - even if it's walking from one end of your local mall to the other. I know when I went to physical therapy, I had much more energy than I do now. I just can't find the time to go to :PT when I'm working 50-60 hours a week. When I'm not working, I'm sound asleep! Debbie in Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 Hi ,If I understand your views on fatigue, there is nothing that anyone can do about it except take vitamin A?Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 Debbie, What do they do for your pain at the clinic? Where is your pain? I have severe pain all over, bad headaches, just really awful. I take Norco 10/325 1 1/2 pills every four hours. It barely maintains. I too am fatigued to the point of being an invalid. My itching is as bad as it's ever been. I can't sleep at night because of it. any way dr wants me to go to pain specialist and I want to know what they do for you. I've never heard any thing good about the one in our area. Thanks, Cheryl ID PSC Re:Fatigue .. >  > Anyway, I never seem to know if my fatigue is exclusively from the PSC now or if it's also a result of the pain medication I take (I go to a Pain Clinic to deal with the chronic pain - > > Debbie in Seattle > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 Thanks , your emails and answers are truly amazing. Do you know Jeff Brower (a philosophy professor at Purdue)? We know Jeff and his wife from our common residence in Iowa City, IA.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 Sandi, Thank you. this is a pain doctor and I don't know what he does except I know people who've gone to him and they said it didn't help at all. It is not a clinic in the sense that you talked about. My issue with the whole idea right now is that the pain is not diagnosed definitively. I have not heard of vistaril for itching. I will check into it. I have tried the rifampin and it didn't help. I see the ENT tomorrow who is working on the Relapsing Polychondritis/Wegener's Granulomatosis diagnosis. I am very discouraged right now. They found a lot of protien in my urine (24 hour catch) and I don't know what to make of it. The dr I see tomorrow is the one who ordered the 24-hr urine test. I have an appointment with the transplant center on May 1 but I don't like the doctor that I will be seeing. They have a new center in SLC now at the Univ. of Utah and I'm thinking of going there, but I don't know. The itching is making it impossible to think lately. I see my PCP on thurs. I hate to get my hopes up that I will figure anything out, but I can't help hoping. It's just that I'm always disappointed. I am whining, so I will end now. Take care, Cheryl Re: Re:Fatigue > > Cheryl, > > The pain clinic here at Mayo was 3 weeks in length and 7 days a week I believe (but I'm not 100% sure on that). > As to pain, I have constant pain and itching, too. For the pain, I've been given 6mg of Dilaudid. It doesn't fix things, but it does take the edge off occasionally. It always works through IVs, but the pills don't seem to do as well for me. They had also given me Tramadol, but I find that one sort of useless. For me, Tylenol Extra Strength is a bit more effective than the Tram. For itching, I'm on a combo of Rifampin (2x a day) and Vistaril (2X a day). > > > > Sandi in VA/Rochester > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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