Fatigue, dizziness, and nauseousness

By onebetter
Posted May 5, 2008 at 9:47 pm

I found out I had FSGS in January. I do not have any other indicators except proteinuria and the only med I take is Lisinopril to regulate my blood pressure. I do experience times when I'm tired, even if I haven't exerted a lot of physical energy that day. I also may have a wave of nausea 1-2 times monthly. My number is pretty good, I'm at stage 2 but my last labwork indicated I was slightly anemic, hence the fatigue. Maybe you should make sure they check for anemia at your next appointment.

Paula

By mamagemini
Posted May 5, 2008 at 10:42 pm

Well I have a running order of compazine for nausea just because i get it randomly. I get it really bad after eating hamburger! Never fails. I think it is from the meds but it could be my kidneys not processing. From all I have read it is from the kidneys not processing foods correctly. Backing up so to say. Here is a link:

http://www.kidney.org/atoz/atozItem.cfm?id=95

it has to do with the urea building up in the kidneys...the wast not getting out? There is a lot of info on that site.
I hope it helps.

By Jenny1
Posted May 6, 2008 at 2:27 pm

Onebetter - my first thought when I started feeling this way was that it had to be a thyroid issue - it runs in my family. And then my sister brought up anemia - she was sure I was anemic. A co-worker thought it was allergies... so many things out there that can make you just want to sleep all day. My primary care doctor checked for all of those things, plus mono, and everything came out looking great. But thanks for the suggestion. She still thinks it's a sleep thing, so I'm having a sleep study done tonight to try to rule that out.

Mamagemini - Thanks for the link. That website has so much interesting information! I was thinking that a higher loss of protein could make me feel this way, but then again, maybe the wastes aren't getting out? All I know is I have a very hard time staying awake during the day, I don't have much of an appetite anymore, and I get nauseous every time I do eat. I just fear that I'm slipping back into nephrotic syndrome or even worse, kidney failure (my face and fingers have also been puffy lately).

By hope4health
Posted May 6, 2008 at 10:51 pm

Jenny,

I'm constantly fatigued and weak. I have MCD. I've been on prednisone and am trying to taper off the drug but am very sensitive to it and have had withdrawal symptoms like nausea, no appetite, extreme weakness and fatigue. It astounds me that the doctors didn't identify this as withdrawal symptoms until after the fact. Anyway, one possibility might be the meds you are on.

All the best

By SmileGodLovesYou
Posted May 6, 2008 at 10:54 pm

If you have more fluid on your abdomen that could make you feel more nauseous and less appetite. I pray you will feel better soon... maybe you just need more diuretics for better fluid management. Also remember to restrict fluids. I am actually happy to hear you have managed so well for 22 years. My daughter has had FSGS for two years. How do you know what stage you are in?

By SmileGodLovesYou
Posted May 6, 2008 at 10:55 pm

If you have more fluid on your abdomen that could make you feel more nauseous and less appetite. I pray you will feel better soon... maybe you just need more diuretics for better fluid management. Also remember to restrict fluids. I am actually happy to hear you have managed so well for 22 years. My daughter has had FSGS for two years. How do you know what stage you are in?

By mamagemini
Posted May 7, 2008 at 12:57 am

Jenny - it may just be what it is - CKD. All your symptoms are in the list of the same ones we had when we got sick. I think they just keep going. There are mornings I feel so sick, then I take a compazine and I feel able to get through the day. I drink tea a lot, green tea. Sometimes a soda in the morning helps me to get going to.
Do you get cravings? mine has been Mtn. Dew lately...lol.
When do you get your next blood tests? They should tell you whats going on.
Protein loss can cause all of this. Imagine all the years of protein loss. How long can we go with that and not start feeling it? Protein works for so much in our bodies and we lose it in mass quantities all day. It helps our brains, our energy and our muscles.
It also helps bridge that gap in our memory process - which for me is dwindling every day.
I'm rambling!

By Jenny1
Posted May 8, 2008 at 11:54 am

Thanks to all for the support and suggestions. Went to the neph yesterday afternoon and my numbers are normal for me. creat 1.8, BUN 26 (barely high), GFR 33 and protein 1.8. Of course, the protein has raised a little, but not enough to expect these issues. Looks like I'm back to square 1.

By Boussaar
Posted May 8, 2008 at 10:09 pm

You are describing the way I felt when I was diagnosed with FSGS last summer. I feel great now but I would see my neph for blood and urine work. I could not stay awake before I got treatment and even went to sleep driving. I had not energy and had trouble concentrating and my memory got so bad I could not remember anything. I have diabetes from the prednisone and sometimes when my sugar drops too low, I get very sleepy.

By onebetter
Posted May 12, 2008 at 12:21 am

Jenny1, I noticed your protein number is about the same as mine but your GFR is 33. I didn't know it was possible to spill a little protein but still be at a Stage 3. Are you on med management to keep your protein low or has you kidney damage gradually increased even with the low protein numbers? Does anyone know?

By Jenny1
Posted May 12, 2008 at 10:25 am

I was on med management to keep protien low for a while, but my blood pressure decided it couldn't handle it anymore, so I've been taken off. I think the damage has just gradually increased over time. I want to say I started out at 80% when I first got sick in 1986, and never went into remission, so I've been spilling proteing pretty consistantly since then. I'll have to pull out my past labs when I get home tonight and see exactly what the decrease has been over what period of time and let you know. . I know my numbers have been stable for a long time. What is your GFR?

By KAREN-AZ
Posted June 2, 2008 at 12:49 pm

I too experience your symptoms. My protein level keeps graudally increasing. My neph thinks that my symptoms are due to my low blood pressure, so he took me off diovan and altace. told me to monitor my blood pressure & when it goes back up to 120 start taking the diovan again & exclude the altace completely. I also feel that my abdomen has water retention & constantly tired that I feel that I can lay in bed all day. good luck

By Jenny1
Posted June 2, 2008 at 1:28 pm

Hey Karen. My primary care doc has recently decided that my blood pressure is way too low for me too, and has decreased my inderall (for migraines). Originally she wanted to take me off my lasix to increase blood pressure, but I said no. I really do need them for fluid management. So, she lowered the blood pressure med by 20 mg. She didn't say whether or not she thought the blood pressure was causing the symptoms - she still thinks it's a sleep disorder. Did a sleep study a month ago and still waiting for those results. Lowering the meds doesn't seem to have helped the blood pressure though - it's still running low MOST of the time (I had a good day last Tuesday with blood pressure actually in the normal range and high energy levels, but not since). It was actually 94/58 a couple of days ago, and that was a day that I coudln't get out of bed until 1:30 and so skipped all morning meds completely. I'm thinking I'm going to have to just cut it out and see what happens. I just can't function like this anymore - can't focus on work, want to sleep while driving (and I have a 62 mile commute) and just forget about doing anything at home. Also makes it incredibly difficult to go to the gym which sucks because I'm trying to lose the excess weight to help out the kidney's workload. How has being off the blood pressure meds worked for you? I'm leaving on vacation this friday and would really like to have everything worked out by then so I don't feel this way on vacation.

By onebetter
Posted June 10, 2008 at 11:42 pm

Sorry it took me so long to reply, I'm a military wife and we just moved to a different state. I went o my last neph appt on May 23, my GFR is still 77 and my protein spillage has dropped to 750. I'm still trying to wrap my head around all the stats... I don't know my creatine level or why that is important. All my doc ever did was concentrate on the protein. My Neph wasn't that good, I only saw an actual doctor for my initial visit and a PA after that. I'm praying that the military insurance will allow me to pick my own neph in my new state.

By mamagemini
Posted June 11, 2008 at 10:32 am

jenny1 - I have done the same...spill protein ever since I got sick. They can not stop it no matter what they do. It goes low but still spills at 7 or more for over 2 years now. My cholesterol won't go down either! BUT my blood pressure does! So some of the meds work. I take 9 a day now and not much change in the protein spill.
I'm just moving on with my regular life and hoping for the best. Some days get fricking tough like the post
I wrote on how my body hates me but the bad does not out weigh good by no means.
Then some days that flipping Compazine doesn't work and I vomit.
I am beginning to figure out that what I eat is a big part in how I feel. Food rules my life! Yeesh!!

By hsenid_k
Posted June 16, 2008 at 7:43 am

Hello Jenny, I am new to this forum. Last week I was diagonsed with FSGS. Am 31 and my urine protein is 3+ and my GFR well varies. Sometimes 80 and sometimes 37. Dont really know what is happening there. My neph says am at an early stage and has prescribed prednisone 80mg/day for 4-6 months. I am concerned about the diet. All he said was low sodium. I googled and found out that my food should have low pottasium and phosphorus as well. Can you give me some dietary advice?

By Jenny1
Posted June 23, 2008 at 9:10 am

hsenid_k - When I was first diagnosed, I was put on pred and a low sodium diet. That's all. I've heard talk of others eating low protein and low potassium as well, but my neph has never said anything about that to me. In fact, when I asked her about a low protein diet a couple of months ago, she said it would not benefit me. And as far as potassium is concerned, she's not worried about that unless the potassium in my blood becomes too high. I wouldn't worry too much about what you read on the internet as far as what diet you should be on. It really is all determined by your specific case - what your blood levels are. I'd just listen to the doc and follow the diet they say to follow.

By fsgsblahs
Posted June 24, 2008 at 7:43 am

hsenid_k -

I have always been told that you don't have to watch the Potassium or Phosphorus until you hit stage 4, and then that depends totally on your labs. I was also told that I didn't have to worry so much about sodium, since I don't retain any fluids, but I have never been on prednisone either. I would call your neph and ask those specific questions, because they could compare your labs with the pred. dosage and know what possible problems you may have while taking it.

By hsenid_k
Posted June 25, 2008 at 3:04 am

Jenny1 & fsgsblahs,

Thanks a lot for your time and input. I have an appointmnt on 3rd July, will also check with my neph about the same.

I am on prednisone for the last one week, 80 mg, everyday. Is there a way to tell before the labs, to find out whether it is helping or what side effects it will cause. Probably it depends on the body type, but in general is there an approximate time for these side effects to show up.
Regards.

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