Can barely walk

[The_Vincester]

Before my kidneys were wiped out in April, I was pretty physically active. I'm currently on PD, but sometimes find it difficult just to walk - not just energy, but physical pain.

I was on steroids, but tapered down to none almost a month or more ago. The most agonizing is in my Achilles, but my legs ache in general. Does anyone else experience this?

[Riki]

Do you have any fluid on your legs?  Excess fluid on the legs can make it incredibly painful to walk, sometimes even to just stand up can be excruciating. 

I experienced this when I started hemo 3 years ago.  My mom said that my legs were the size of stove pipes.  They were at least twice the size that they were supposed to be.  I was in the hospital for 2 weeks, while I transitioned from PD to hemo, and I had to use a walker to walk anywhere and if I wanted to go further than just down the hall, I had to use a wheelchair.  When I got home, the nurses at my unit were much more aggressive towards the fluid than the nurses in the hospital I was in, and the majority of the fluid was gone in about a week.  My legs were back to normal size, and I could stand and walk without any pain.

[The_Vincester]

Nope, no fluid build up at all.

[lmunchkin]

I believe I would consult with a Doctor.  No telling what it may be!

lmunchkin
 

[Marina]

Before my kidneys were wiped out in April, I was pretty physically active. I'm currently on PD, but sometimes find it difficult just to walk - not just energy, but physical pain.

I was on steroids, but tapered down to none almost a month or more ago. The most agonizing is in my Achilles, but my legs ache in general. Does anyone else experience this?

Has  your  vit  D  been checked  lately?   

Is your  hemoglobin within   range?             When  my hemoglobin is  on the  low  side,  it  hurts  to  walk.   I  get  so  tired,   not  just  the  energy  part,  but my  legs  ache  like  crazy. 
I'm  experiencing    that   right  now.           I gotta  check  with  TX  center  to  see if I  can take  aranesp.


Hope you  feel  better  real  soon!!   

Marina

[Riki]

You have to ask for Arenesp?  I get it automatically every 2 weeks, along with venifer.  Everybody in my unit does.  Some get it more often than that.  Even when I was on PD I got Arenesp every 2 weeks

[The_Vincester]

What is Arrnesp? Is that like Epogen? I take that shot twice a week...

[billybags]

It could be a wide range of things but you can garentee it has to do with your kidnys. My husband has had the same problem for over a year. he is doing the overnight cycler.

His symptoms are: 
Feeling he has no strength in his legs ;
He says his legs do not feel like they belong to him.
They ache like mad in bed at night.
He also gets pain in his flank.

He has seen a Vascular surgeon and he said that all his arteries in his legs are OK. We have seen a Neurologist who has done tests and he says that his electrodes are not meeting up and the signals are not getting to his brain. We are waiting for a lumber puncture appointment, apparently they test for proteins in the spinal fluid.To much protein is not good.

Over the months he has been given prescriptions for--- Morphine, gabapentine, and a few more. He has stopped taking them because they make him feel dozy.

I see that you have been on steroids, this neurologist says that if they find too much protein he would try him on steroids, I don't know. Ask to see a neurologist.let me know.

[The_Vincester]

@billybags - Those symptoms are very similar. I don't always have the ache in my legs in bed, but I have and it's brutal.

It certainly does sometimes feel like my legs are not mine and the signals are "mixed up."

[texasstyle]

I'm wondering if you have some  in the legs. You might want to inquire about that too. Hmm.. I  hope you feel better soon!

[Marina]

You have to ask for Arenesp?  I get it automatically every 2 weeks, along with venifer.  Everybody in my unit does.  Some get it more often than that.  Even when I was on PD I got Arenesp every 2 weeks

Now  that  I'm  transplanted  MY  insurance  won't  pay  for  aranesp  unless  my   hemoglobin  falls  below  10.
It's  different  for  dialysis  patients.   On dialysis  if you  fall  below  11 you  automatically  get  EPO,  Aranesp  or  Procrit.

[Riki]

You have to ask for Arenesp?  I get it automatically every 2 weeks, along with venifer.  Everybody in my unit does.  Some get it more often than that.  Even when I was on PD I got Arenesp every 2 weeks

Now  that  I'm  transplanted  MY  insurance  won't  pay  for  aranesp  unless  my   hemoglobin  falls  below  10.
It's  different  for  dialysis  patients.   On dialysis  if you  fall  below  11 you  automatically  get  EPO,  Aranesp  or  Procrit.

I don't quite understand the whole insurance thing.  Where I am, if you need it, you get it, if you're in a hospital anyway.  If not, it depends on whether the province will pay for it or not.  I got EPO and Iron once a week after my last transplant, for about a month after I got home, I think.  I remember, my boyfriend (at the time) was terrified of needles.  When the nurse showed up to give me the injections, he'd go for a long walk. *L*

[cassandra]

your pain in the legs could be calcium being too high or too low, or you bicarbonate being too low. what are your bloods like? good luck

[Bill Peckham]

your pain in the legs could be calcium being too high or too low, or you bicarbonate being too low. what are your bloods like? good luck

I was thinking calcium too. And a low potassium can leave you feeling pretty strange.

[mcclane]

You have to ask for Arenesp?  I get it automatically every 2 weeks, along with venifer.  Everybody in my unit does.  Some get it more often than that.  Even when I was on PD I got Arenesp every 2 weeks

Now  that  I'm  transplanted  MY  insurance  won't  pay  for  aranesp  unless  my   hemoglobin  falls  below  10.
It's  different  for  dialysis  patients.   On dialysis  if you  fall  below  11 you  automatically  get  EPO,  Aranesp  or  Procrit.

I don't quite understand the whole insurance thing.  Where I am, if you need it, you get it, if you're in a hospital anyway.  If not, it depends on whether the province will pay for it or not.  I got EPO and Iron once a week after my last transplant, for about a month after I got home, I think.  I remember, my boyfriend (at the time) was terrified of needles.  When the nurse showed up to give me the injections, he'd go for a long walk. *L*

my province won't supply aranesp unless it is absolutely necessary.  but my wife's work covers the cost of aranesp 100%, so when it is time to get some more, she charges (air miles, woo hoo !!!!) and then sends in the receipts.  few weeks later, the full cost from her work's insurance arrives.

I used to be on pd, and i found just the extra dialysate fluid sloshing around in your gut area would leave me winded.  I had 2L fills, so i was schlepping around my own body weight plus 2L of fluid all the time.

[okarol]

You have to ask for Arenesp?  I get it automatically every 2 weeks, along with venifer.  Everybody in my unit does.  Some get it more often than that.  Even when I was on PD I got Arenesp every 2 weeks

It was used more but things changed. A few months ago studies revealed the dangers of over use of erythropoiesis-stimulating agents.
The US Food & Drug Administration has issued a warning that Procrit, Epogen, and Aranesp, used in patients with chronic kidney disease, may put them at risk of heart attack, stroke, and death
http://www.webmd.com/cancer/news/20110624/fda-new-warning-for-procrit-epogen-aranesp

[Deanne]

It could be from the prednisone, too. I had a great deal of difficulty walking when I was on prednisone. One of the side effects can be muscle wasting. I also had a lot of foot and leg pain to go with it. I couldn't walk in the mornings because my feet hurt so badly. It got batter as my prednisone dose dropped, but it took several months before the pain went away altogether and I never did regain all of my former mobility. I always feel a bit clumsy now and it's been about 15 years since I've taken prednisone.

[*kana*]

Do you take cholesterol meds?  Other have made great points and I just wanted to add that one in because you can get those symptoms from other drugs other than D drugs. 

[The_Vincester]

After some testing, it's definitely the prednisone.