I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: texasstyle on August 16, 2009, 07:45:27 AM
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My husband has the nueropathy in his feet. It's getting to be more than pins and needles, now sometimes painful. Last year he even had a nail in his foot and didn't know it. What can I do to help relieve this? Does the fluid retention aid in this? Thanks, Carolyn
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Is it diabetic neuropaty? If so, lose weight, get sugars undercontrol and grin and bear it. There are some creams that give temporary relief (I think it is Capsium but it is made of pepper and burns the bejesus out of you)..but best thing is get sugars into range if it is diabetic....
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There are medications for neuropathy, but doctors prescribe it usually depending on severity. I am not sure which ones are renal safe though, I never used them since it started at age 10. However mine is diabetic related and I'm not sure your husbands is, but can start without being diabetic. Start off by talking to your doctor who may refer you to a specialist. Fluid build up can have an effect on the nerves though. As far as doing anything on your own, nothing has helped me, it is a grin and bear it for the moment and mine are more like electrical shocks than pins and needles. Only thing that has helped me though was getting my transplant. It's not gone, but less frequent nd intense.
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Longer hemodialysis on a more efficient filter might help.
It did for me. And I'm not diabetic.
8)
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Thank you for all your responses. I get something out of each reply. I believed it stemmed from diabetes originally. For a few years his sugar was in the 300's (untreated) but is on Januvia now. I'm sure the untreated diabetes started a whole cycle of things leading to kidney failure. His weight is decent now as well as his sugar. I'm learning so much about dialysis here. Filters, blood flow, etc.. Seems everyone her knows exactly what is going on with their dialysis treatment. This is going to big a big help to me since we're thinking about doing it from.
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Hello..I too have Neuropathy in my feet and my hands, Oh yea! after years we have finally found a doctore who would diagnose me with severe hand and foot neuropathy reaching up to my knees and to my elbows the medication I am on Neurotin, or Gabapetin my neuropathy is not diabetes related that at least is one thing tested for and found not to have whew!, my wife is a type 1 and she has neuropathy tho not as bad as I do, we are in the middle of getting the house ready for painting and removing trim pieces i wear sandals all the time(so nothing touches my toes) and step-ed on a nail with out knowing, my daughter saw it had gone through my foot! hard to imagine how I could have so little feeling and yet be in such pain!, my condition makes it difficult to walk most days for longer than few minutes at a time.
One doctor informed me that starting dialysis would help lessen the pain while another(the Neph.) said " Dialysis would not make any symptoms lessen or go away", OK so who do I believe? at least the meds work! I am on 1200 mg. per day spread out with out the meds it feels like being connected to a 220 electrical line and someone is shocking me!!
I pray your husband finds relief no one should live is such pain with some kind of relief.
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Hmm...should of proof read better! sorry if somethings make little sense it is difficult to typs with such long talons you know!
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The doc who said dialysis will not lessen/ If it does great, if it doesn't, you just get madder and madder at the doc who told you it would when it didn't. But just from reading what you said and the severity, I don't see improvement hapening to much because how much the nerve cells are damaged already going by the biology, microbiology, and Human Anatomy classes I have taken a couple years ago and articles I read while waiting in the doctor offices. Hopefully it does improve some, you never know.
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Thank you Sir Chris...well not sure I would get madder it is enough at least that someone in the medical profession finally believes me and as always there is hope.
Hmm...do I have to learn all that stuff too? my brain is befuddled most days, very bad short term memory I always say that I have the memory span of a naat(tiny winged bug).
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that's 'gnat' tallons. yer welcome.;)
my neuropathy is not diabetic-related, as i'm not diabetic. i get the electric shock feelings in the feet. sometimes, it's like bamboo shoots under the toenails. other times, i can't feel my feet at all, but i can feel the floor or ground under them. weird. once the nerves are damaged, there's no getting them back, so nueropathy is a lifetime companion. dialysis can only remove a small percentage of the toxins from the body. some of that excess drains into the feet, thanks to gravity, and nerve damage is the result.
one more fun feature of kidney failure.
:waving;
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Longer hemodialysis on a more efficient filter might help.
It did for me. And I'm not diabetic.
8)
As I said, I had very bad peripheral neuropathy in my legs, which began several months before I started hemodialysis.
It was so bad that when I was at home and on the floor exercising, I couldn't just stand up after finishing. I would have to drag myself to a chair and pull myself up. When I was outside walking, it was difficult for me to step up onto the sidewalk after crossing the street. I would have to walk to a nearby lamppost so I could grab onto it and give myself a boost up.
At first when I began hemodialysis, the neuropathy in my legs was not improving. In fact, it seemed to be spreading to my fingers. So my Nephrologist researched the dialysis filter that removed a greater amount of the 'middle molecule" toxins which were thought to cause, among other things, peripheral neuropathy in non-diabetic kidney patients.
My hemodialysis treatments were increased to five hours, instead of four hours, three times a week. After many months, the neuropathy slowly started to recede, and I began to regain my general strength.
While I still have some neuropathy, it is not as debilitating as it was.
8)
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Thanks everyone (again). Neuropathy must have the ability to get very bad. How horrible that must be. I'm feeling for anyone who has it. What a trying ordeal. I've got to talk to the dialysis unit soon and find out the real scoop on how much dialysis my husband really needs. If there is any slight possibility that more dialysis time can help than it's worth it. His feet are swollen a lot. I never knew of meds for it. "Middle molecule" toxins? How cow! You guys know your stuff! I am anxious to soak all this up. The human body is fascinating. Too bad it can't keep itself from kidney failure right? It's a scorcher today (I'm actually from PA! lol) so I'm staying in the a.c all day reading as much as I can on the boards. Starting to feel like I can be part of the gang now.
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Be very careful of your feet. My husband, diabetic since 13, now 59 has Charcot Foot. It is a very debilitating condiction. Not to scare you, but we think my husband broke a small bone in his foot that went undetected. When it was, it was too late. Although there is a operation for Charcot, it is a very long rehab period. So check your feet and I would even recommend getting maybe yearly xrays to be sure your bones are all intact. If you have a podiatrist, mention Charcot to him and tell him you don't want it to develop it in your feet. Take care and good luck.
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Gnat.....thank you LightLizard will have to make sure I tell my kitty about that when he comes back in, he spells good but some words he is not so good at.
So sorry to hear about your situation 'Zach' you give me hope and we shal see what happens, I too broke a toe in my left foot did'nt know for couple weeks until my wife finally convinced me to have it checked out by our doctior and of course the xray showed the break.
With my wife being type 1 diabetic her feet are a major concern to us now it seems so are mine.
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My neph prescribed me 300 mg Neurontin (gabapentin) at bedtime every evening, for this condition.
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Woohooo! :sarcasm; I get to have an EMG test Thursday to see how bad my neuropathy is effecting my left leg. I have only heard not so comfortable news from the doc and a friend who had it done. Sort of like putting an Amp/Ohm meter on you except one end is pointy and painful when they run the test. Hope I can shock one of those idiot doctors or techs in the room afterwards >:D :rofl;
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Try grabbing one same time they poke you!
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:rofl; :rofl; and hopefully touching another colleague
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Zach,
I'm glad to know you were able to resolve some of your neuropathy issues using a different filter and longer hemodialysis. That gives some of us a little hope. Does that mean you did NOT need to take neurontin?
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Does that mean you did NOT need to take neurontin?
I never took any drug for the neuropathy.
Just more and better hemodialysis.
And physical therapy is very important. As the saying goes, "Use it or lose it."
8)
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Zach, this is all very interesting. I am in a wheelchair now, due to neuropathy. I can walk about 6 steps with a walker but thats it. Worse than that is the loss of ability to do much of anything with my hands due to neuropathy. I'm very interested to lean what type of dialyizer you are using. I am using Revaclear, 3hours, 3 times a week. I am not diabetic. Doc's offer no help with this condition so I am looking for any information to help my case.
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Zach, this is all very interesting. I am in a wheelchair now, due to neuropathy. I can walk about 6 steps with a walker but thats it. Worse than that is the loss of ability to do much of anything with my hands due to neuropathy. I'm very interested to lean what type of dialyizer you are using. I am using Revaclear, 3hours, 3 times a week. I am not diabetic. Doc's offer no help with this condition so I am looking for any information to help my case.
It is suspected that middle-weight molecular toxins are responsible for neuropathy.
Revaclear appears to be a dialyzer with excellent middle-weight molecule clearance, so you're doing the right thing there.
Among medications, Neurontin is favored. High doses of biotin have proven helpful too.
For more info, go here:
http://emedicine.medscape.com/article/1175425-overview
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Circle,
Would you have a recommendation for a wheelchair? My husband is at the point with Charcot Foot that his mobility is practically nonexistent. I am healthy and would be the one carting around a wheelchair to the car, etc. I am looking for a light weight one that folds up in the backseat of the car. Although the one we just rented is supposed to fit in the backseat it doesn't fit in our Taurus. (Also, my husband is a musician so his speaker cabinet takes up a good deal of room in the trunk.) Thanks so much for any info....
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Rob has nueropathy in his feet due to being a type 1 diabetic. He even had osteomylitis in the same toe (the big one) twice and almost came close to losing it.
What has helped him was contorlling his sugars, seeing a podiatrist every 6 weeks and never going barefoot. He makes sure his feet are looking good and never cuts his toenails himself, his podatrist does that. He learned his lesson and believes all diabetics should see a podiatrist a few times a year. Rob also makes sure he wears the right type of shoes. Since the osteomylitis, he wears shoes that wide width and comfortable. Being that he is an electrician and on his feet all day, this is very important to him.
We found a great store for wide with shoes for men and they are known nation wide for their wide widths and sizes. Thankfully it's in our state, so we get to visit in person. It's called http://www.wideshoes.com/ (http://www.wideshoes.com/). We had the hardest time finding wide enough shoes that didn't dig in, cut in or having stitching that would bother Rob's feet.
Good luck!
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Zach, this is all very interesting. I am in a wheelchair now, due to neuropathy. I can walk about 6 steps with a walker but thats it. Worse than that is the loss of ability to do much of anything with my hands due to neuropathy. I'm very interested to lean what type of dialyizer you are using. I am using Revaclear, 3hours, 3 times a week. I am not diabetic. Doc's offer no help with this condition so I am looking for any information to help my case.
Sounds like you need more dialysis. While your Kt/V may be good at 3 hours, it would seem that 3 hours isnt enough time to remove enough of the middle molecule toxins.
Adding an extra hour each session would give you an additional 12 hours of dialysis, or the equivalent of 1 extra week of 4 hour dialysis runs a month.
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Hi everybody! Umm....I have noticed for some time that my toes 'dance' or twitch for no apparent reason I can't feel the muscles and no feeling so it is kinda weird watching them which is something I find my self doing alot.
They seem to 'dance' after I've been on my feet for a while or after the long day not that I do much walking as it is, I do bike ride with the kids, its easier to get along and my kids of course appreciate dad comming along.
Just wondering if anyone else experiences the same thing.
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I got my time increased from 3 hours to 3 1/2 hours. Still pushing for 4 hours, but it is a time slot issue. Hoping this will help with nueropathy over time. Thanks for all your help and suggestions everyone!
redz...sorry, I can't help with the wheelchair selection, I use a powerchair. You should post your question in the "Wheelchair Discussions" section.
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I got my time increased from 3 hours to 3 1/2 hours. Still pushing for 4 hours, but it is a time slot issue.
Excellent. More time is better.
8)
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I have increased from 3 and 1/2 to 4 and 1/2 hours with little effect on my neuorpothy. My personal care physician finally gave me 300 mg of neurotin a day and it has worked miracles for me. Not only has the pain and numbness gone from my feet, but it also lessened the horrible itching I was enduring.
After some experimenting we found that 100 mg in the morning and 200 mg before bed works best. Side effects? Dizziness and sleepiness during the day. We tried using less than 300 mg per day (maximum dosage for hemo patients) but the pain and itching returned.
I wish you well. I can empathize as my life was becoming pretty miserable before finally finding some relief.