Itching bad and can't sleep!

[zona]

Hello,
    It's been over a year since I have been on this sight! I am stage 5 with a gfr of 15 sometimes lower. It goes up and down. The past few days I have felt kinda weird. Brain fog, itching way more than usual,stomach issues. Just feel like crap! By feeling kinda weird I mean...sort of like a feeling of dread. Like I am dreaming or something. My bun and creatinine went up this last lab test as well as my Phosphorus and uric acid. Does anyone else experience these feelings  of doom or is it just me?

[billybags]

Phew, sounds like you are nearly ready for dialysis sad to say. Have you been seen by your neph recently?

[Cordelia]

Hi Zona, 

That's exacty the way I was right before starting Dialysis.  I itched SO bad, I clawed myself and bled, it was really bad. (Means your phosphorus is likely very high)   I forgot appointments  and even forgot to meet my husband for lunch once or twice, which wasn't like me.  I didn't want anyone touching me either, I just wanted to crawl into a corner and die.  I also wasn't sleeping at night either, I was a insomniac at night and wanted to sleep during the day.

Are you having severe muscle leg cramps at night or are you vomiting and nauseated with a loss of appetite?

Sounds like you likely need to start Dialysis

[zona]

Oh yes! The itching is so bad but worse at night! Even my eyelids itch. I have scratched my skin raw in places as well. My phos. level was 5.1 and uric acid was 9.9. Creatinine 3.27 and bun 70. Bun and creatinine have been much higher. It must be the phos.making me itch. No cramps but restless legs!!!!! And my stomach hurts but only a little nausea in the early morning hours. I just got over having fluid overload and my heart is slightly enlarged. I am on 6 lasix a day at 80.mg. each to help with the edema. But still having trouble controlling it. Yesterday my neph. called to tell me it is time to start restricting my fluids as much as I can because my kidneys just could not handle it anymore. I am wondering if she is thinking I may be close to starting dialysis.

[Cordelia]

Hi Zona,       

Yes, I had restless legs too. The itching is caused by the high phosphorus. 
A steel brush wouldn't have even relieved the itching, it was that bad.          I still have scars from where I scratched so hard that I bled.

I had difficulties breathing also.  It all sounds so familiar.

I'm really glad you're in the care of a nephrologist.

[zona]

Oh yes Cordelia, I have been seeing the same neph. for 18 years! I have done well but the last year or 2 things are starting to slide downhill. By the way Cordelia was my Grandmas name! I have not heard it in a while!

[Cordelia]

   Thank you! I like your name, also! It's very pretty!   

That's awesome you're in good care then!     

Do you know the cause of your kidney function declining?

[willowtreewren]

Zona, I'm sorry to hear that things have gotten so bad. It does sound like dialysis is going to be sooner rather than later. Do you have a fistula in place?

I've been thinking of you. 

Aleta

[zona]

Hi Aleta! Yes, it seems if it's not one thing it's another. I do have an av fistula in place. It was placed 2 years ago when the doctor thought for sure dialysis was around the corner. But my numbers have remained fairly stable until recently. I am sitting here right now and the sun just went down and I am starting to itch again. I guess it builds up during the day. Still I don't think the bun and creatiinine level is too bad..like I said it has been worse. When I hear people say they didn't start until the gfr reached below 10 I wonder how they coped with the symptoms. And if I am being a big baby. LOL! I hope things are going well in your world.

[zona]

Thank you Cordelia, I have IGAN and hypertension. My dad and grand-dad had it as well. So it runs in my family. My niece passed away at the age of 30 from it but she had heart problems as well and had a massive heart attack before she reached the point of dialysis.

[willowtreewren]

Zona,

It is not just about the numbers, but about how you feel! When Carl started dialysis he felt better almost immediately!

When do you see your neph next? I hope soon. I know that thought of having to go through dialysis is scary, but you will probably feel so much better. In the mean time, try eliminating as much phosphorous from your diet as possible.

We were thrilled at how much better Carl could eat AFTER he started dialysis. When we went to the grocery store it was like Christmas. Well, actually that was after he started NxStage. He was actually too low on potassium and phosphorous and we had to add those foods back into his diet!

Hugs, Zona. 

Aleta

[Cordelia]

I'm so sorry to hear about your niece, Zona     

I agree with Willowtreen too, you'll likely feel a lot better after starting dialysis...........I also felt a lot better after I started dialysis, my appetite returned.     

[zona]

Thanks guys. I see my neph again in a couple of weeks. But I think I will cal the nurse and have my labs checked again. Better to be safe. I am so tired of this thing. I was telling someone yesterday...if only I could just have one day that I could not think about being sick but I go to sleep with it and wake up with it. It always there and ready to knock me on my knees.

[Cordelia]

         We're here for you

[beachbum]

My GFR got down to 7. I was told conflicting stories from different drs. One dr told me the itching and restless legs were caused by my anemia and another dr said it was the phosphorus. I agree with the second dr. I would really feel the itching and restless legs if I ate something high in phoshorus, especially right before I went to bed. I don't know why but I also avoided the phosphorus binders for a long time, probably because my levels weren't too high and I was already taking so many pills. My phosphorus climbed to 6.8 and the itching and restless legs were almost unbearable. I got my binders and started feeling better within a week! Now I take my binders with every meal and watch what I eat. I also cut out dark soda completely. I hope you feel better soon!

[zona]

quote author=beachbum link=topic=24995.msg403353#msg403353 date=1321455989]
My GFR got down to 7. I was told conflicting stories from different drs. One dr told me the itching and restless legs were caused by my anemia and another dr said it was the phosphorus. I agree with the second dr. I would really feel the itching and restless legs if I ate something high in phoshorus, especially right before I went to bed. I don't know why but I also avoided the phosphorus binders for a long time, probably because my levels weren't too high and I was already taking so many pills. My phosphorus climbed to 6.8 and the itching and restless legs were almost unbearable. I got my binders and started feeling better within a week! Now I take my binders with every meal and watch what I eat. I also cut out dark soda completely. I hope you feel better soon!
[/quote]
Oh my gosh! That sounds like what I am going through. For a long time I didn't take my binders because they upset my stomach.Now I take them faithfully. But the only thing the binders seem to do for me is help with the bone pain. My phosphorus level went up though. Restless legs is so bad and that with the itching makes me crazy!

[Cordelia]

I wasn't on binders when I started Dialysis. Not until about 2 months after I started D.   Beginning dialysis is what took the itch and restless legs, severe leg cramps, away.   I really didn't notice any "difference" when I started my binders.....all that happened is that my labs were better but as far as the itch and restless legs, it had absolultely no bearing for me.

[sullidog]

When I was on dialysis in the hospital I think the floor nurses were uneducated because I got my very first binder without a meal and because of that I didn't learn until later that the binders were only suppose to be taken at meal time and not by themselves.
I had the same symptems as you and I started dialysis right away.

[Restorer]

When I was in the hospital last year, the nurses kept bringing me my binders with the rest of my pills. I'd tell them they ONLY work when I eat a meal, and they'd say, "Well, take them now anyway, and I'll ask the doctor about it." Then I'd refuse, and they wouldn't bring my binders with my meal.

[billybags]

Restorer, We play crafty now, when hubby has to stay in hospital we keep a tub of Renagel in his bag so he can have them when HE needs them, not when they want to give them out, it works well. We also squirrel away paracetamol, .things you do.