neuropathy any suggestions?

[strateup]

I have been on dialysis for 9 years.  I have noticed the neuropathy in my lower legs and feet only seems to be getting worse.  I 'm not dibetic, just diagnosed as renal neuropathy.  My feet stiffen up horribly, especially after a long car ride.  when I lay in bed at night I have to put my feet outside the covers as it feels that I am standing on hot asphalt.  Forget being able to run, they just won't move as fast as my brain.  Also forget squatting down because there is simply no getting back up.  I take amitryptiline which helps somewhat.  Do any of you experience this or maybe have found someyhing that can help, anything would be appreciated

[Sluff]

I wish I could help srateup, but I don't have any idea, I do hope you get to the bottom of this problem.

[Black]

Ask your neph about Lyrica.

[goofynina]

I believe Panda_9 mentioned Gabapentin for this very problem as well, just another suggestion, hope you get better soon 

[Panda_9]

Are you on conventional dialysis? I beleive it certainly doesnt help with the neuopathy and there its not reversable whilst you remain on dialysis. Nocturnal is supposed to improve it, but I have been on nocturnal for 12 months and mine has not improved. I get alot of pain, pins and needles, and my feet feel like they are on fire. Summer is particularly bad. I have to wear joggers/runners all the time as any other shoes cause great pain. My feet feel like they are bruised, and I also get sharp shooting pains up the middle of my toes any in other spots. The skin is incredibly sensitive, I hate anyone or anything touching my feet.
I do take gabapentin and ever since I started taking it the pain has decreased a fair bit, I dont get pins and needles, and they arent so sensitive. They still get a bit hot, but no where near as bad as they have been. Im not sure if the gabapentin or the nocturnal has helped with the heat sensation, its hard to tell. But I sleep a hell of alot better since starting on the medication, and it has also helped with the restless legs, which I hardly get now. I really recommend trying Gabapentin. It does dialyse out of your system though so its important to remember to take it AFTER dialysis. Take it straight after so it gets a chance to kick in by the time your ready for bed.
I actually did miss a dose or two once as I couldnt get to the pharmacy and OMG I barely slept a wink as my feet felt like someone was shoving cannulas into them. So it definitely has worked for me.

[jedimaster]

I have been only 6 months on hemo and my legs get super hot, super sensitive and they hurt!....I know what you are talking about...

[Panda_9]

If its really bothering you please do seek treatment for it, as I know how awful it is. I have it pretty bad (well i think it is anyway lol), pretty much my whole foot/feet are numb and it travels almost up to my knees. It has also started to appear in my finger tips. Without the gabapentin neither me nor my partner ever got a decent nights sleep!

[BigSky]

The answer I get on this from my doctor is that it is normal and will take a transplant to change.

Personally.......  I say BS.

Back in 87 I was on dialysis for just over 2 years.  Back when by an conceivable measure dialysis was not as good as it is today.  At that time I never had any numbness at all in my feet.  This go around it started within 2 weeks of being on the machine and hasn't let up.

[strateup]

Thanks for all the suggestions, I am going to ask my Neph tommorrow about gabapentin.  If she prescribes it I will get back and let you all know how well it worked.  Thanks again.   

[Panda_9]

The answer I get on this from my doctor is that it is normal and will take a transplant to change.

Personally.......  I say BS.

Back in 87 I was on dialysis for just over 2 years.  Back when by an conceivable measure dialysis was not as good as it is today.  At that time I never had any numbness at all in my feet.  This go around it started within 2 weeks of being on the machine and hasn't let up.

Its not going to be the same every time. This time round I got the numbness before I even started dialysis. Because you are never waste free when you are on dialysis, it is unlikely the neuropathy will go away or improve without a transplant. It is supposed to improve with nocturnal dialysis, I guess the pain has a little bit, but the numbness hasnt.
After I had a transplant, I got all feeling back in my feet and the pain/heat/tingling went away completely.

[angela515]

The answer I get on this from my doctor is that it is normal and will take a transplant to change.

Personally.......  I say BS.

You would be surprised how true that is... transplant fixes alot of problems people have on dialysis. Obviously for the main reason that your not haveing toxins floating around in your body messing everything up.

I remember my transplant like it was yesterday... the MINUTE I woke up from the surgery, I felt brand new... I dont know how to explain it... I felt like, I had never been sick in my life, I felt so much energy and wonderful... (Obviously some pain but I was pretty doped up to care about it)... I could hardly wait to get up and start walking... No more RLS, no more high blood pressure... no more weird taste of foods, and no more insomnia. 

[Panda_9]

The answer I get on this from my doctor is that it is normal and will take a transplant to change.

Personally.......  I say BS.

You would be surprised how true that is... transplant fixes alot of problems people have on dialysis. Obviously for the main reason that your not haveing toxins floating around in your body messing everything up.

I remember my transplant like it was yesterday... the MINUTE I woke up from the surgery, I felt brand new... I dont know how to explain it... I felt like, I had never been sick in my life, I felt so much energy and wonderful... (Obviously some pain but I was pretty doped up to care about it)... I could hardly wait to get up and start walking... No more RLS, no more high blood pressure... no more weird taste of foods, and no more insomnia. 

I felt exactly the same after my transplant, it was great!!

[BigSky]

You would be surprised how true that is... transplant fixes alot of problems people have on dialysis. Obviously for the main reason that your not haveing toxins floating around in your body messing everything up.

I remember my transplant like it was yesterday... the MINUTE I woke up from the surgery, I felt brand new... I dont know how to explain it... I felt like, I had never been sick in my life, I felt so much energy and wonderful... (Obviously some pain but I was pretty doped up to care about it)... I could hardly wait to get up and start walking... No more RLS, no more high blood pressure... no more weird taste of foods, and no more insomnia. 

Yes I did have a transplant so I do know.  However I do not buy into the medical community on that I have to wait for a transplant before the numbness will subside. 

[Panda_9]

Whilst you remain on dialysis and with the continual toxins rollercoaster it is unlikely that the numbness will improve. My feet and legs have been numb for 3-4 years and have only gotten worse over time.

[Black]

The answer I get on this from my doctor is that it is normal and will take a transplant to change.

Personally.......  I say BS.

Back in 87 I was on dialysis for just over 2 years.  Back when by an conceivable measure dialysis was not as good as it is today.  At that time I never had any numbness at all in my feet.  This go around it started within 2 weeks of being on the machine and hasn't let up.

Sky, Are you still having the problem?  Did you ask your neph about Lyrica?  I have peripheral neuropathy due to poor blood flow in one leg (inoperable, clogged femoral artery) and the Lyrica has made a huge difference.  It also helped Mike before he started dialysis when the RLS was so bad he couldn't sleep.

[BigSky]

Sky, Are you still having the problem?  Did you ask your neph about Lyrica?  I have peripheral neuropathy due to poor blood flow in one leg (inoperable, clogged femoral artery) and the Lyrica has made a huge difference.  It also helped Mike before he started dialysis when the RLS was so bad he couldn't sleep.

They are still numb to some degree. They have improved quite a bit from my turning up my blood pump during dialysis over what the doctor wants.     My medical records essentially state the problem occurred from not being on the right dialyzor in the beginning  which led to low kt/v's for several months.

[Black]

They are still numb to some degree. They have improved quite a bit from my turning up my blood pump during dialysis over what the doctor wants.     My medical records essentially state the problem occurred from not being on the right dialyzor in the beginning  which led to low kt/v's for several months.

As if ill health isn't bad enough, we have to live with the mistakes made by the people who are supposed to be looking after us. 

Glad there has been improvement.