Guest guest Posted January 26, 2004 Report Share Posted January 26, 2004 I don't get sore calves or the numbness you are referring to, but I do on occasion get muscle cramps that can be fairly severe. The pain does not last for hours though, fortunately just for a few minutes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2004 Report Share Posted January 26, 2004 I don't get sore calves or the numbness you are referring to, but I do on occasion get muscle cramps that can be fairly severe. The pain does not last for hours though, fortunately just for a few minutes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2004 Report Share Posted January 26, 2004 --Mark Rowe Yes, I understand what you are going through. There are times that my legs are arms are numb or hurting that I have to get help to get up. Sometimes these will go less painfull so I can walk others require a pain killer to be able to walk. I also get these things that I call Feet Sieges its when my feet muscles and nerves tighten up allmost like a charle horse but worse. Then all I can do is curl up and hold very very very still and let it pass. I am going to see my foot doctor tuesday. So I know when your coming from. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2004 Report Share Posted January 26, 2004 Mark, I've had this problem quite a few times since starting on prednisone. My knees and calves cramp so badly I can't stand up for hours and normally have to take an Ultram to stop the pain. I've figured out its much worse if I get dehydrated during the day. Make sure you are drinking enough and especially drinking enough right before bed...but of course stay in whatever liquid restrictions you may be under. I'm not on any fluid restrictions so I tend to drink one or two large glasses of water right before bed. Yes I have to get up to pee half way thru the night but I don't have leg cramps in the morning anymore. Good luck with it, I know how badly they hurt and how that pain lasts for a day or longer. Amy Sore calfs.... Just wondering if anyone else suffers from sore calfs first thing in the morning? I am often woke up by numbness in my legs, arms and face. It gets better after I start moving around and get something to eat and drink though its painful to climb and descend stairs for a few hours . Usually my calfs feel sore for a couple of days, its that feeling when you have had a bad cramp in your calfs and they feel pretty sore for a good while later. Anyone experience these sore legs? --------------------------------- Yahoo! Messenger - Communicate instantly... " Ping " your friends today! Download Messenger Now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2004 Report Share Posted January 26, 2004 Mark, I remember getting those a lot when I first found out I had Iga. Infact, I had had them for years and didn't have a clue where they were coming from...now I know that they were probably related to the disease. Thankfully, I don't have them anymore after my transplant. -- In iga-nephropathy , Mark Rowe <mrowe1962@y...> wrote: > Just wondering if anyone else suffers from sore calfs first thing in the morning? I am often woke up by numbness in my legs, arms and face. It gets better after I start moving around and get something to eat and drink though its painful to climb and descend stairs for a few hours . Usually my calfs feel sore for a couple of days, its that feeling when you have had a bad cramp in your calfs and they feel pretty sore for a good while later. Anyone experience these sore legs? > > > --------------------------------- > Yahoo! Messenger - Communicate instantly... " Ping " your friends today! Download Messenger Now > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 Hi Amy Im not on prednisone just lisinopril amlodopine and atorvastatin. You could be right about fluids before sleep, I work shifts and when im on afternoons and come in around 11pm I have a pint of water. On the next morning I cannot recall being woken up by these feelings but when I am on earlies I still have that pint of water but over 4 hours before bed rather than the two hours before bed on afternoons and its then that I feel bad. Mark Purr-fection Sewing wrote: Mark, I've had this problem quite a few times since starting on prednisone. My knees and calves cramp so badly I can't stand up for hours and normally have to take an Ultram to stop the pain. I've figured out its much worse if I get dehydrated during the day. Make sure you are drinking enough and especially drinking enough right before bed...but of course stay in whatever liquid restrictions you may be under. I'm not on any fluid restrictions so I tend to drink one or two large glasses of water right before bed. Yes I have to get up to pee half way thru the night but I don't have leg cramps in the morning anymore. Good luck with it, I know how badly they hurt and how that pain lasts for a day or longer. Amy --------------------------------- BT Yahoo! Broadband - Free modem offer, sign up online today and save £80 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 Hi Looks like I will just have to wait for that transplant then I was wondering I know that most parts of life are regained after a transplant but is it possible to do ALL the things you used to do before? I really loved working out at the gym and its that that I miss the most. I am on blood pressure tablets atm but after a transplant I presume your bp would be in the normal range so the bp tablets get binned is that correct? Mark;) wrote: Mark, I remember getting those a lot when I first found out I had Iga. Infact, I had had them for years and didn't have a clue where they were coming from...now I know that they were probably related to the disease. Thankfully, I don't have them anymore after my transplant. --------------------------------- BT Yahoo! Broadband - Free modem offer, sign up online today and save £80 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 Hi The numbness is worrying esp in my cheeks and forehead, it always is worse on whatever cheek im sleeping on, thinking about it I think its bp related and possibly during the night my blood settles or collects around the lowest parts of the body in my extremities (no not that extremity ..). Thats my theory anyway Mark W4JC@... wrote: I don't get sore calves or the numbness you are referring to, but I do on occasion get muscle cramps that can be fairly severe. The pain does not last for hours though, fortunately just for a few minutes. --------------------------------- BT Yahoo! Broadband - Free modem offer, sign up online today and save £80 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 I don't think the numbness you describe has anything to do with IgAN itself. Maybe with the blood pressure pills though. Sometimes these affect how blood flows to extremities. Pierre Re: Sore calfs.... Hi The numbness is worrying esp in my cheeks and forehead, it always is worse on whatever cheek im sleeping on, thinking about it I think its bp related and possibly during the night my blood settles or collects around the lowest parts of the body in my extremities (no not that extremity ..). Thats my theory anyway Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 Hi Mark, I very much doubt that numbness is related to your IgAN. It would be a good thing to mention to your GP rather than to your Nephrologist though. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 Mark, It depends on what ALL you want to do again:) They don't want any contact sports, but you should be able to return to exercise. Infact, they encourage exercise...but no heavy lifting for awhile afer the transplant. I have returned to jogging most mornings--when it's not too freezing to do so! My life is completely back to normal, almost even better than before As far as the bp pills, I am not on any as of yet. Of course, they want to be careful since I do still have Iga, so I monitor my blood pressure every day, and if there was a slight raise in it then they would start to flip out, I'm sure. Right now it remains stable, but I've only have my transplant for almost 6 weeks now. Hope the calves feel better soon! > Mark, > I remember getting those a lot when I first found out I had Iga. > Infact, I had had them for years and didn't have a clue where they > were coming from...now I know that they were probably related to the > disease. Thankfully, I don't have them anymore after my > transplant. > > > > > > > --------------------------------- > BT Yahoo! Broadband - Free modem offer, sign up online today and save £80 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 Mark, It depends on what ALL you want to do again:) They don't want any contact sports, but you should be able to return to exercise. Infact, they encourage exercise...but no heavy lifting for awhile afer the transplant. I have returned to jogging most mornings--when it's not too freezing to do so! My life is completely back to normal, almost even better than before As far as the bp pills, I am not on any as of yet. Of course, they want to be careful since I do still have Iga, so I monitor my blood pressure every day, and if there was a slight raise in it then they would start to flip out, I'm sure. Right now it remains stable, but I've only have my transplant for almost 6 weeks now. Hope the calves feel better soon! > Mark, > I remember getting those a lot when I first found out I had Iga. > Infact, I had had them for years and didn't have a clue where they > were coming from...now I know that they were probably related to the > disease. Thankfully, I don't have them anymore after my > transplant. > > > > > > > --------------------------------- > BT Yahoo! Broadband - Free modem offer, sign up online today and save £80 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 Hi Mark, Regarding the BP meds post-transplant, here is my story. Before dialysis, I was on 10mg of Monopril and 25mg of Tenormin. During dialysis, I self-medicated (with the permission of my neph) due the the changes in BP during hemo. After receiveing my transplant close to 2 years ago, I have had to increase my Tenormin to 50mg, while my Monopril has remained unchanged. So, in my case, the BP meds didn't get binned. Also, I have more edema in my lower legs at the end of the day than ever before. Marty > > > Mark, > > I remember getting those a lot when I first found out I had Iga. > > Infact, I had had them for years and didn't have a clue where they > > were coming from...now I know that they were probably related to > the > > disease. Thankfully, I don't have them anymore after my > > transplant. > > > > > > > > > > > > > > --------------------------------- > > BT Yahoo! Broadband - Free modem offer, sign up online today and > save £80 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 I can only imagine how frustrating it must be to learn your Mom has to go through additional tests after waiting for so long already! It is good that they are so careful screening the donors, but the wait I am sure is hard. That is also quite a bit of weight to lose in 18 months. Have you seen a dietitian to help you? I saw a renal dietitian and she really helped me to prepare for a diet low in potassium and protein, but with enough calories to stabilize my weight when I was losing weight. You might ask your doctor for a referral. I am glad you are finding hope and encouragement here while you wait though. Take care, In a message dated 1/28/2004 3:56:53 AM Pacific Standard Time, mrowe1962@... writes: > Thank you for all your replies, the worst thing about this disease is not > the pain or even the constant hospital/gp visits its becoming the opposite of > what I was just 18 months ago, I have lost 35pounds of weight I am now just a > shadow of what I used to be, still reading your replies has given me hope > that I may regain some of what I have lost > > My mother came forward a year ago as a possible doner and yesterday after > going through 6 months of tests she had her appointment with a nephrologist to > give her the yes/no. She was so worked up and it came as a huge > dissapointment that they have realised that they need further tests because she had a > minor stroke a few years ago, so thats a least another 2 months waiting for the > appointment to come through then another month or two befoer they tell her the > results Better to be safe than sorry I know but the time that is now > being wasted when she could have had those tests when she was having her other > tests........ > > Anyway thanks for all your replies they are greatly encouraging and thats > the best medicinr of all......... hope > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 Hi Marty, that is concerning that you have more edema than ever before. What does your Neph say about that? Does it have anything to do with your difficult work hours? By the way, have things slowed down at all there? I hope your work schedule is more manageable and that you have fully recovered from your accident. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Thank you for all your replies, the worst thing about this disease is not the pain or even the constant hospital/gp visits its becoming the opposite of what I was just 18 months ago, I have lost 35pounds of weight I am now just a shadow of what I used to be, still reading your replies has given me hope that I may regain some of what I have lost My mother came forward a year ago as a possible doner and yesterday after going through 6 months of tests she had her appointment with a nephrologist to give her the yes/no. She was so worked up and it came as a huge dissapointment that they have realised that they need further tests because she had a minor stroke a few years ago, so thats a least another 2 months waiting for the appointment to come through then another month or two befoer they tell her the results Better to be safe than sorry I know but the time that is now being wasted when she could have had those tests when she was having her other tests........ Anyway thanks for all your replies they are greatly encouraging and thats the best medicinr of all......... hope --------------------------------- BT Yahoo! Broadband - Free modem offer, sign up online today and save £80 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Marty, My transplant nephrologist still has me on a low sodium diet. I can tell when I have to much sodium because I have weitght gain the next day over and above what I gain in consumed calories. I can also tell by the amount of edema in my legs and face. Re: Sore calfs.... Hi Mark, Regarding the BP meds post-transplant, here is my story. Before dialysis, I was on 10mg of Monopril and 25mg of Tenormin. During dialysis, I self-medicated (with the permission of my neph) due the the changes in BP during hemo. After receiveing my transplant close to 2 years ago, I have had to increase my Tenormin to 50mg, while my Monopril has remained unchanged. So, in my case, the BP meds didn't get binned. Also, I have more edema in my lower legs at the end of the day than ever before. Marty > > > Mark, > > I remember getting those a lot when I first found out I had Iga. > > Infact, I had had them for years and didn't have a clue where they > > were coming from...now I know that they were probably related to > the > > disease. Thankfully, I don't have them anymore after my > > transplant. > > > > > > > > > > > > > > --------------------------------- > > BT Yahoo! Broadband - Free modem offer, sign up online today and > save £80 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 My brother was rejected as a kidney donor after more than 7 months (various tests, plus waiting for appointments with neph/psychologist/social worker/surgeon and waiting for files to be sent, etc.). He was rejected after the very last test. Unfortunately, it happens. There are some things that can't be known until other things are done first. In his case, they couldn't have found what they did until that very last test. Yes, I could say he should have had that test earlier, but it just doesn't always work that way. After that experience, my advice to anyone in the process of having a donor worked up would be to expect the unexpected and don't count your chickens before they are hatched. There are so many ways any potential donor can be rejected. It's disappointing, but what can you do. It's a pretty serious operation and lifechoice as far as the donor goes. The doctors can't take any risks, and they usually don't. I've learned the hard way not to get too enthusiastic about these things. Anyway Mark, I sympathise with you. A lot of people have the same experience. Pierre Re: Sore calfs.... Mark - it is so difficult to deal with who we once were and what we are now. You are right - that is the most difficult thing to deal with. I feel like I've lost myself and I'm greiving the old me! How frustrating for you and your MOM....I'm sure she is beside herself, to have all this time pass and then be told - more tests! How incredibly disappointing. I hope the next phase of testing goes by quickly for you and your Mom and that everything works out in your favor. Rita Nucciarone Mark Rowe wrote: Thank you for all your replies, the worst thing about this disease is not the pain or even the constant hospital/gp visits its becoming the opposite of what I was just 18 months ago, I have lost 35pounds of weight I am now just a shadow of what I used to be, still reading your replies has given me hope that I may regain some of what I have lost My mother came forward a year ago as a possible doner and yesterday after going through 6 months of tests she had her appointment with a nephrologist to give her the yes/no. She was so worked up and it came as a huge dissapointment that they have realised that they need further tests because she had a minor stroke a few years ago, so thats a least another 2 months waiting for the appointment to come through then another month or two befoer they tell her the results Better to be safe than sorry I know but the time that is now being wasted when she could have had those tests when she was having her other tests........ Anyway thanks for all your replies they are greatly encouraging and thats the best medicinr of all......... hope Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 pierre isn't avapro an ace inhibitor? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 No, it's an angiotensin II receptor blocker, just like Cozaar and Diovan. Pierre Re: Sore calfs.... > pierre isn't avapro an ace inhibitor? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Hi , I do believe that sodium intake could be a big factor in my case. Plus, I am supposed to drink at least 3 liters of water a day. The transplant has to try and take the place of 2 healthy kidneys. Marty > > > Mark, > > > I remember getting those a lot when I first found out I had Iga. > > > Infact, I had had them for years and didn't have a clue where > they > > > were coming from...now I know that they were probably related to > > the > > > disease. Thankfully, I don't have them anymore after my > > > transplant. > > > > > > > > > > > > > > > > > > > > > --------------------------------- > > > BT Yahoo! Broadband - Free modem offer, sign up online today and > > save £80 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Hi , I do believe that sodium intake could be a big factor in my case. Plus, I am supposed to drink at least 3 liters of water a day. The transplant has to try and take the place of 2 healthy kidneys. Marty > > > Mark, > > > I remember getting those a lot when I first found out I had Iga. > > > Infact, I had had them for years and didn't have a clue where > they > > > were coming from...now I know that they were probably related to > > the > > > disease. Thankfully, I don't have them anymore after my > > > transplant. > > > > > > > > > > > > > > > > > > > > > --------------------------------- > > > BT Yahoo! Broadband - Free modem offer, sign up online today and > > save £80 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Hi , I do believe that sodium intake could be a big factor in my case. Plus, I am supposed to drink at least 3 liters of water a day. The transplant has to try and take the place of 2 healthy kidneys. Marty > > > Mark, > > > I remember getting those a lot when I first found out I had Iga. > > > Infact, I had had them for years and didn't have a clue where > they > > > were coming from...now I know that they were probably related to > > the > > > disease. Thankfully, I don't have them anymore after my > > > transplant. > > > > > > > > > > > > > > > > > > > > > --------------------------------- > > > BT Yahoo! Broadband - Free modem offer, sign up online today and > > save £80 > > > > > > Quote Link to comment Share on other sites More sharing options...
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