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, I have been having similar problems with the shortness of breath but I keep blaming it on the fact that I have COPD. I use two inhalers and my PCP just today told me to increase the use of my albuterol inhaler from three to four times daily. I feel so stupid as even though I use a cane I cannot even make it to the apt dumpster to take my own trash sack and the dumpster is only about six parking places from my apt. As you may have noticed I also have been fussing about selling of not only my legs and feet now but everywhere, last night I gained three pounds overnight? I do so hope things will level out for you to some extent, I will keep you in my thoughts and prayers. Dolores lanebristow@...> wrote: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 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 June 16, 2005 Report Share Posted June 16, 2005 Hi, I have been having similar problems with the shortness of breath but I keep blaming it on the fact that I have COPD. I use two inhalers and my PCP just today told me to increase the use of my albuterol inhaler from three to four times daily. I feel so stupid as even though I use a cane I cannot even make it to the apt dumpster to take my own trash sack and the dumpster is only about six parking places from my apt. As you may have noticed I also have been fussing about selling of not only my legs and feet now but everywhere, last night I gained three pounds overnight? I do so hope things will level out for you to some extent, I will keep you in my thoughts and prayers. Dolores lanebristow@...> wrote: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 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 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 > > I don't think that there is any relationship between fatigue and cirrhosis. For example, one of the world experts on PSC concluded that fatigue in PSC is unrelated to the stage of liver disease: .... > > However, there is still controversy about whether fatigue is related to depression in PSC, and this paper says this isn't: > > " The prevalence of a depressive disorder in patients with PBC and PSC is not higher than in the general population. Fatigue in patients with PBC and PSC cannot be explained by depression. " ======================= I agree, . I also agree that depression is not the key to the fatigue either. My fatigue levels are rather severe, and have been for quite some years now (on a steadily increasing basis). I'm definitely not suffering from depression (been there, done that, don't ever want to do it again!), but I must note that I have had fibromyalgia since about 1990 which certainly affects this. At one point, my rheumatologist said it was one of the worst cases she had seen (that was before we knew about the PSC). Just as with so many other PSC symptoms, the fatigue level seems (IMHO) to hit everyone differently. It has astonished me that so many in this group are still working full-time or even part-time, for that matter! Then there are ones like Mike Z. who bicycled to the PSC Conference a couple of years ago, and Wim who is training to do the same thing this year. I'm astonished and amazed by them!!! It takes me a day or two (literally) to recover after vacuuming the living room or taking a shower. Friday, I decided to mix up a pound cake and was totally wiped out by the time I got it in the oven. I honestly didn't think I was going to finish it. For what it's worth, my fatigue level was quite pronounced in stage 1 and is very pronounced now that I'm in cirrhosis. The bigger difference now seems to be due to muscle wasting. Regards, Carolyn B. in SC 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 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 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 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 Hi ; There are lots of dietary factors that can affect gut permeability, and one of these is retinoic acid (which is derived from vitamin A): ______________________ Mol Pharmacol. 71: 250-258 (2007) Cellular retinoic acid bioavailability determines epithelial integrity: role of retinoic acid receptor alpha agonists in colitis. Osanai M, Nishikiori N, Murata M, Chiba H, Kojima T, Sawada N Department of Pathology, Sapporo Medical University School of Medicine, South-1, West-17, Sapporo, Japan. osanaim@... The epithelial barrier is determined primarily by intercellular tight junctions (TJs). We have demonstrated previously that all-trans retinoic acid (atRA) plays an important role in forming functional TJs through a specific retinoic acid receptor (RAR)/retinoid X receptor heterodimer in epithelial cells. However, the physiological relevance of retinoic acids (RAs) in maintaining the epithelial integrity remains to be examined. Here, we show that several types of RA, including atRA, promote the barrier function of epithelial TJs. Conversely, RA depletion in the cells by overexpressing CYP26s, cytochrome P450 enzymes specifically involved in the metabolic inactivation of RAs, induces an increase of permeability as measured by two differently sized tracer molecules, inulin and mannitol. This RA-mediated enhancement of barrier function is potentially associated with the increased expression of TJ-associated genes such as occludin, claudin-1, claudin-4, and zonula occludens-1. We also found that RARalpha is a preferential regulator of the epithelial barrier in vitro. Studies of murine experimental colitis, which is characterized by increased gut permeability, reveal that RARalpha stimulation significantly attenuates the loss of the epithelial barrier during colitis in vivo. Our results suggest that cellular RA bioavailability determines the epithelial integrity, because it is a critical regulator for barrier protection during mucosal injuries. PMID: 17035595 ______________________ So making sure that you don't become vitamin A-deficient is one practical step that you can take to maintain a healthy gut. Because PSCers are often vitamin A deficient, it is important that you get checked for vitamin A (and other fat soluble vitamin deficiencies) IN CONSULTATION WITH YOUR DOCTOR. I'm not recommending self medication with vitamin A, because the danger of this is over-medicating; when vitamin A is taken in excess this can be toxic to the liver! Other dietary factors that regulate intestinal permeability include omega-3 fatty acids found in fish oils: _________________________ Mol. Immunol. 45: 1356-1365 (2008) n-3 polyunsaturated fatty acids prevent disruption of epithelial barrier function induced by proinflammatory cytokines. Li Q, Zhang Q, Wang M, Zhao S, Xu G, Li J Institute of General Surgery, Jinling Hospital, No 305 East Zhongshan Road, Nanjing 210002, China. Defects in tight junction barrier have been considered as an important etiologic factor of Crohn's disease. n-3 polyunsaturated fatty acids (PUFAs) exert beneficial effects on inflammatory bowel disorders. However, the mechanisms remain unknown. We found that docosahexaenoic acid (DHA, 22:6 n-3) and eicosapentaenoic acid (EPA, 20:5 n-3) changed lipid environment in membrane microdomains of tight junction in vitro. n-3 PUFAs treatment effectively prevented the redistribution of occludin and ZO-1 and distortion of TJ morphology, reduced transepithelial electrical resistance induced by IFN-gamma and TNF-alpha. We also observed dramatic reorganization of TJ proteins in epithelial lateral membrane following treatment with these cytokines. Our findings for first time indicate that n-3 PUFAs play an important role in proinflammatory cytokines-induced permeability defects and epithelial barrier dysfunction by modifying lipid environment in membrane microdomains of tight junction. PMID: 1793690. _________________________ So I'm not saying that vitamin A is the ONLY factor affecting gut permeability. Again, it all boils down to whether or not the connection between chronic fatigue syndrome and a leaky gut is true or not. These guys who are proposing this hypothesis suggest that " treatment with specific antioxidants and a " leaky gut diet " , which both aim to treat increased gut permeability, and immunoglobins intravenously, " offers a novel approach to treatment of chronic fatigue syndrome. ___________________ Neuro Endocrinol. Lett. 28: 739-744 (2007) Normalization of the increased translocation of endotoxin from gram negative enterobacteria (leaky gut) is accompanied by a remission of chronic fatigue syndrome. Maes M, Coucke F, Leunis JC MCare4U Outpatient Clinics, Belgium. crc.mh@... There is now evidence that chronic fatigue syndrome (CFS) is accompanied by an increased translocation of endotoxins from gram-negative enterobacteria through the gut wall, as demonstrated by increased prevalences and median values for serum IgM and IgA against the endotoxins of gram-negative enterobacteria. This condition can also be described as increased gut permeability or leaky gut and indicates intestinal mucosal dysfunction (IMD). Here we report a case of a 13 year old girl with CFS who showed very high values for serum IgM against the LPS of some enterobacteria and signs of oxidative and nitrosative stress, activation of the inflammatory response system, and IgG3 subclass deficiency. Upon treatment with specific antioxidants and a " leaky gut diet " , which both aim to treat increased gut permeability, and immunoglobins intravenously, the increased translocation of the LPS of gram negative enterobacteria normalized and this normalization was accompanied by a complete remission of the CFS symptoms. PMID: 18063928. ___________________ I don't know whether or not the chronic fatigue in PSC has the exact same cause as in chronic fatigue syndrome: I'm just simply trying to point out the similarities. Best regards, Dave R. > > 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 Hi ; There are lots of dietary factors that can affect gut permeability, and one of these is retinoic acid (which is derived from vitamin A): ______________________ Mol Pharmacol. 71: 250-258 (2007) Cellular retinoic acid bioavailability determines epithelial integrity: role of retinoic acid receptor alpha agonists in colitis. Osanai M, Nishikiori N, Murata M, Chiba H, Kojima T, Sawada N Department of Pathology, Sapporo Medical University School of Medicine, South-1, West-17, Sapporo, Japan. osanaim@... The epithelial barrier is determined primarily by intercellular tight junctions (TJs). We have demonstrated previously that all-trans retinoic acid (atRA) plays an important role in forming functional TJs through a specific retinoic acid receptor (RAR)/retinoid X receptor heterodimer in epithelial cells. However, the physiological relevance of retinoic acids (RAs) in maintaining the epithelial integrity remains to be examined. Here, we show that several types of RA, including atRA, promote the barrier function of epithelial TJs. Conversely, RA depletion in the cells by overexpressing CYP26s, cytochrome P450 enzymes specifically involved in the metabolic inactivation of RAs, induces an increase of permeability as measured by two differently sized tracer molecules, inulin and mannitol. This RA-mediated enhancement of barrier function is potentially associated with the increased expression of TJ-associated genes such as occludin, claudin-1, claudin-4, and zonula occludens-1. We also found that RARalpha is a preferential regulator of the epithelial barrier in vitro. Studies of murine experimental colitis, which is characterized by increased gut permeability, reveal that RARalpha stimulation significantly attenuates the loss of the epithelial barrier during colitis in vivo. Our results suggest that cellular RA bioavailability determines the epithelial integrity, because it is a critical regulator for barrier protection during mucosal injuries. PMID: 17035595 ______________________ So making sure that you don't become vitamin A-deficient is one practical step that you can take to maintain a healthy gut. Because PSCers are often vitamin A deficient, it is important that you get checked for vitamin A (and other fat soluble vitamin deficiencies) IN CONSULTATION WITH YOUR DOCTOR. I'm not recommending self medication with vitamin A, because the danger of this is over-medicating; when vitamin A is taken in excess this can be toxic to the liver! Other dietary factors that regulate intestinal permeability include omega-3 fatty acids found in fish oils: _________________________ Mol. Immunol. 45: 1356-1365 (2008) n-3 polyunsaturated fatty acids prevent disruption of epithelial barrier function induced by proinflammatory cytokines. Li Q, Zhang Q, Wang M, Zhao S, Xu G, Li J Institute of General Surgery, Jinling Hospital, No 305 East Zhongshan Road, Nanjing 210002, China. Defects in tight junction barrier have been considered as an important etiologic factor of Crohn's disease. n-3 polyunsaturated fatty acids (PUFAs) exert beneficial effects on inflammatory bowel disorders. However, the mechanisms remain unknown. We found that docosahexaenoic acid (DHA, 22:6 n-3) and eicosapentaenoic acid (EPA, 20:5 n-3) changed lipid environment in membrane microdomains of tight junction in vitro. n-3 PUFAs treatment effectively prevented the redistribution of occludin and ZO-1 and distortion of TJ morphology, reduced transepithelial electrical resistance induced by IFN-gamma and TNF-alpha. We also observed dramatic reorganization of TJ proteins in epithelial lateral membrane following treatment with these cytokines. Our findings for first time indicate that n-3 PUFAs play an important role in proinflammatory cytokines-induced permeability defects and epithelial barrier dysfunction by modifying lipid environment in membrane microdomains of tight junction. PMID: 1793690. _________________________ So I'm not saying that vitamin A is the ONLY factor affecting gut permeability. Again, it all boils down to whether or not the connection between chronic fatigue syndrome and a leaky gut is true or not. These guys who are proposing this hypothesis suggest that " treatment with specific antioxidants and a " leaky gut diet " , which both aim to treat increased gut permeability, and immunoglobins intravenously, " offers a novel approach to treatment of chronic fatigue syndrome. ___________________ Neuro Endocrinol. Lett. 28: 739-744 (2007) Normalization of the increased translocation of endotoxin from gram negative enterobacteria (leaky gut) is accompanied by a remission of chronic fatigue syndrome. Maes M, Coucke F, Leunis JC MCare4U Outpatient Clinics, Belgium. crc.mh@... There is now evidence that chronic fatigue syndrome (CFS) is accompanied by an increased translocation of endotoxins from gram-negative enterobacteria through the gut wall, as demonstrated by increased prevalences and median values for serum IgM and IgA against the endotoxins of gram-negative enterobacteria. This condition can also be described as increased gut permeability or leaky gut and indicates intestinal mucosal dysfunction (IMD). Here we report a case of a 13 year old girl with CFS who showed very high values for serum IgM against the LPS of some enterobacteria and signs of oxidative and nitrosative stress, activation of the inflammatory response system, and IgG3 subclass deficiency. Upon treatment with specific antioxidants and a " leaky gut diet " , which both aim to treat increased gut permeability, and immunoglobins intravenously, the increased translocation of the LPS of gram negative enterobacteria normalized and this normalization was accompanied by a complete remission of the CFS symptoms. PMID: 18063928. ___________________ I don't know whether or not the chronic fatigue in PSC has the exact same cause as in chronic fatigue syndrome: I'm just simply trying to point out the similarities. Best regards, Dave R. > > 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 Fatigue can be a general symptom of liver disease. It may or not be related to what stage you are in. The liver has so many functions that most people with liver disease have to deal with varing degrees of fatigue. Every persons body reacts differently especially with PSC. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 Fatigue can be a general symptom of liver disease. It may or not be related to what stage you are in. The liver has so many functions that most people with liver disease have to deal with varing degrees of fatigue. Every persons body reacts differently especially with PSC. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 Cheryl, Hi! Sorry to jump in on this. I thought I'd chip in the little bit of information that I know about the Pain Clinics/Pain Rehab. My understanding of them (or at least the one at the Mayo Clinic) is that they are there to wean people off of pain medications and teach them ways to use the limited amounts of energy and mobility that you have in the best ways possible. 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). In any case, the pain clinic was recommended to me by Mayo ville. However, Mayo Rochester doesn't seem to think it would be beneficial. I'm not entirely sorry to hear them say so. I know a few people who have been to the pain clinics. Some swear by it and some say it was a waste of time and finances (it's expensive, at least here at Mayo). 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). Anyhow, I'm not sure I gave any help or clarification of if I just added to the confusion, but I hope it helped at least a little! Sandi in VA/Rochester Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 Cheryl, Hi! Sorry to jump in on this. I thought I'd chip in the little bit of information that I know about the Pain Clinics/Pain Rehab. My understanding of them (or at least the one at the Mayo Clinic) is that they are there to wean people off of pain medications and teach them ways to use the limited amounts of energy and mobility that you have in the best ways possible. 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). In any case, the pain clinic was recommended to me by Mayo ville. However, Mayo Rochester doesn't seem to think it would be beneficial. I'm not entirely sorry to hear them say so. I know a few people who have been to the pain clinics. Some swear by it and some say it was a waste of time and finances (it's expensive, at least here at Mayo). 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). Anyhow, I'm not sure I gave any help or clarification of if I just added to the confusion, but I hope it helped at least a little! Sandi in VA/Rochester 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...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 Cheryl, My daughter has chronic pain and she sees a doc in Salt Lake that has really helped her. She actually has an implant that helps in some way (I don't know details). She was not able to work before she saw this particular doc and after the implant she is able to work full time at a job that is pretty physical. Barbara (Wife of , PSC 07) > > Subject: Re:Fatigue > To: > Date: Tuesday, March 31, 2009, 10:57 AM > >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 > > -----Original message----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 Cheryl, My daughter has chronic pain and she sees a doc in Salt Lake that has really helped her. She actually has an implant that helps in some way (I don't know details). She was not able to work before she saw this particular doc and after the implant she is able to work full time at a job that is pretty physical. Barbara (Wife of , PSC 07) > > Subject: Re:Fatigue > To: > Date: Tuesday, March 31, 2009, 10:57 AM > >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 > > -----Original message----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2009 Report Share Posted April 1, 2009 But severe brain-fog tends to get worse as you get worse, right? =============== From: [mailto: ] On Behalf Of Fatigue can be a general symptom of liver disease. It may or not be related to what stage you are in. The liver has so many functions that most people with liver disease have to deal with varing degrees of fatigue. Every persons body reacts differently especially with PSC. Quote Link to comment Share on other sites More sharing options...
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