Numb Fingers and Feet

[StephenA]

Hi everyone. I switched to Haemo last year after 10 years of PD and I have now got numb finger tips which can get sore. I get some relief dropping my hands as low as I can (especially during dialysis), so reckon my circulation has been affected. Has anyone had experience with this and do they have any suggestions to reduce the effects? I had neuropathy in my feet during PD (as usual fancy name but no "cures"!). I have been taking alpha lipoic acid and paprika pills. Can't report any magic effects as yet. I had a quad heart by-pass last year, so wonder if that has had anything to do with it. Watch out for calcification of the veins - this is the reason for the by-pass. Don't know of any way to reduce it, but watch out for the calcium content of any PD bags. I had to use high Calcium due to shortage of the correct bags and ended up in hospital to reduce my Calcium blood levels. I was in a very bad state indeed. The labelling of the bags did not indicate the increased Calcium levels. I switched renal unit and supplier (to Fresenius), so be aware of possible alternatives and use them if necessary.

[Nicolala]

Hi stephenA

Sadly I have no cures either.

I suffer with numb feet when I walk. Have done for years. I had nerve conduction tests but they proved nothing. The specialist said my small nerves were probably dying due to long term dialysis. I was given a low dose of amytriptaline, which helped a little but made me feel really tired. Nocturnal dialysis has also helped.

You are right about calcification -the biggest killer of renal patients. My veins are quite bad and my fistula has been affected. Probably caused by the calcium based phosphase binders I took for years!

So- no advice or cure from me I'm afraid, but you're not alone. Just another negative effect on us of dialysis.

Good luck x

[StephenA in reply to Nicolala]

Hi Nikki. I love your contributions here. Yes, we have to be a tough bunch to do dialysis (wimps need not apply!!). If you could see the size of needles they use on me now.....! (I never watch the needle going in). I also had that amy-whatever but I felt so knocked about, it was not for me. My numb hands get better when I drop them below my waist, so circulation is a factor. Numb fingertips seem to be there all the time and key fumbling has become a way of life. Fortunately I can still grip my lawn bowls and play a great outside game. They say old bowlers never die, they just drop their bowls! The climate here allows for all year round bowling, so I can keep active. Problem at the moment is recovering from quad by pass is slow.... It's taking time to get my strength and fitness back, but it is getting better. The by pass was a life saver, so I must remain positive. Dialysis patients must never ignore any chest pains.

One of my replies suggested watching out for Vitamin B12 levels. I am going to see whether this is being monitored and whether a regular B12 shot is a good idea. I want to find out whatever can help and not simply rely on our so-called renal experts. All they seem to be interested in is our blood results which may not actually reflect our true condition. Any thoughts on this?

Keep up the good work. I am only 10 years behind you (a real novice at dialysis 10y on PD, <1 on HD).

Thanks and good luck for you, too.

S

[Nicolala in reply to StephenA]

I agree about renal people and blood results. Have not heard about b12- I'd be interested to hear how you get on.

Thanks for your comments -I only reply to things I have experienced or what I know anything about. I'm not an expert, but the best people to ask about dialysis things are patients themselves!

So glad your bowling hasn't been affected 😊

The heart bypass must have been a big thing. I'm currently having investigations into a heavy feeling in my chest. I'm hoping it's something and nothing.

Take care

Nikki x

[StephenA in reply to Nicolala]

Hi Nikki

I have just posted something which has had a brilliant effect on my life: Dialysis takes out good and bad. Good being the essential amino acids we need. Normally that comes from protein, but one AA we also need is made by our kidneys (not much good for us?), this is L-carnitine. I tried this as a supplement (the body builders and gym-bunnies love the stuff), and miraculously I can now return to the lawn bowling and play three full games each week - including league games for my club (no more as I cannot roll from my Lazy-boy in the dialysis unit). I feel so much stronger and wonder why my so-called support staff did not suggest this. I could barely make tea time before, though I seemed to be getting a bit better. I was still wondering why I was not even feeling as good as I did on PD. I still hate dialysis but while away the time watching videos on my little IdeaPad. The by-pass is no big deal - I found that most of the other bowlers have had three or four by-passes and that I am a novice at this cardiac business. My cardio says my heart is in good shape, it was just the arteries getting clogged (thanks, PD). Plenty of positives over here after a bit of depression. There are better ways to do things, if we just look.

Good luck & hope all's well, Stephen

[opie]

Hi, Sorry no answers for you but a question.......How long is 'long term dialysis'? I mean before calcification becomes a concern?

Is Baxter fluid worse than Fresenius? Can I ask to swap machines? I have heard that Fresenius is a better machine for pain and the Baxter machine isn;t getting any better after 3 years...

[StephenA in reply to opie]

I was on PD for 10 years: Baxter for around 8 of them, but since I nearly died from excess blood calcium (due to the supplier sending high calcium bags due to "back orders", though the nephrologist blamed "Tums" for it..... though I was using Renagel at the time. I had bad heartburn and apparently this could be due to the high calcium in my blood (I talked to my GP about it). I ended up for a week in hospital with a saline drip (!!) which actually reduced the calcium levels. Blood pressure was closely monitored, naturally. Neph was on leave at the time and the doctor had to figure out what to do by himself. Scary. As a result I switched to a new renal unit that used Fresenius (bicarbonate-based PD solution with alkaline pH, Baxter (lactate-based if I recall) had slightly acidic pH solutions) and also changed my neph. Luckily I was able to do this in South Africa. The Fresinius bags are more body-friendly, apparently. I used 2,5 litre Baxter and only 2,0 litre Fres bags, so less wear on the peritoneum. Unfortunately my PD effectiveness started declining and I am told that 10 years is a very long time for PD. At the end I was using 2.5% glucose and even 5% when my fluid offtake was low. The glucose level has a major effect on how much water is taken out. 5% was taking out almost a litre of excess! I never used a PD machine. Gravity worked well enough and the inconvenience was not a problem. Fresienius uses a twin bag system where you premix the solution by "cracking open" the bag before doing the exchange - bicarb is not as stable as lactate, so have to premix before use. Minor hassle really. I believe the Fres machines do this for you.

Calcification is a by-product of PD, so I am told. I am sure there were ways to reduce it, but I never was treated that way. Sometimes I'd like to throttle the Neph as I felt that I was not properly cared for. Blood testing seems to be the limit of their talents!

Now I am on Haemo, two huge needles in the arm 3 times a week. We dialysers are tough! No overnight dialysis at home here though I love the idea of long, slow dialysis. I don't fancy three nights in hospital dialysing although it's becoming available. Imagine the hospital fees....

Good luck. Watch the renal unit and the neph and don't be afraid to change if the service is poor.

[Nicolala in reply to opie]

I don't know the official point at which we become 'long term' but I suspect anything around 10 years. Calcification isn't a problem for everyone, I guess it's often because of parathyroid issues and calcium based binders, which aren't used much now.

[kayjay19]

So you are on Haemodialysis. Presumably you have some form of Fistula for the machine attachments, possibly in your upper arm. If so this involves a small amount of surgery to join arterial and veinous flows, and it should have been explained to you that there might be a circulation change in the circuits below the fistula. Check with your Access Clinic. Don't try other non-prescription medicines, until they are cleared by your Clinic.

[StephenA in reply to kayjay19]

Hi, thanks for the reply. Yes, I am tough, I do Haemo..... Needles no longer worry me. I had a "graft" installed into my left arm upper, not a fistula. Someting to do with my blood flow, though no options were offered. It was actually quite a big op to do and I spent around 5d in high care before getting out. Not at all minor. I was on PD for 10 years before that and the PD catheter insertion was a lot more "minor" (no high care needed). You are right about the loss of sensation below the graft, the inside of my lower left arn is less sensitive to the touch. My fingertips on both hands have become less sensitive since Hemo and I often have to drop my hands below my waist to recover feelings in my hands, so is a circulation problem, too. My feet became numbed during PD ("neuropathy" - diabetics seem to suffer this as well: I'm not diabetic). I find the severity in my hands is variable and wonder if hemo is influencing it. Sometimes it feels better after hemo.

Apparently removing clogs from grafts & fistulas is a normal "service" procedure and is a minor procedure.

This site is wonderful for the support it offer to "newbies" as well as old hands. Sharing experience is such a positive benefit.

Good luck to all dialysees out there!

[Coastwalker]

Anything neurological or numbness, I would be checking my vitamin B12 bloods, even when under 450 you can be told all Ok, nothing wrong, but take a look at a top selling book called 'Could it be B12 Deficiency' by Sally Pacholok, she also mentions anyone attending renal to get themselves checked too.

[StephenA in reply to Coastwalker]

Thanks, Coastwalker. Will check out the book.

[Coastwalker in reply to StephenA]

My Mum a KD patient had neuropathy in her feet and bad circulation, we were told it was to do with diabettes, but I have been wondering if could have been more a B12 Deficiency as the symptoms are identical. An emergency Doctor said Mum's no taste buds was down to B12 deficiency, also Mum had what they told us was a crumbled spine and osteoporosis was also written on her death certificate. Osteoporosis started to be connected to B12 Def back in 2004. This Book 'Could it Be B12' can save many lives as many don't realize they have low or B12 Deficiency.

Just a thought - Hopefully you are not on a statin like my Mum was ?

[StephenA]

Thanks for the reply. I am downloading a video about B12 now and will be talking to both my nephrologist as well as my renal unit people about this. I shall try to find out about my own B12 levels. We have so many potential side effects with dialysis and I often wonder if our so called care-givers are putting enough effort into our treatments. Here in South Africa we have a strong private medical "industry" that taps into our "Medical Aid" at every opportunity, but the Med Aid pays out for standard procedures and I wonder if important factors get left out (money is of prime importance!!). I ended up with a quad bypass thanks to calcification. Not a pretty sight for my wife, but I am still here. I don't have diabetes, fortunately, but it is a huge disease over here thanks to so-called modern diets. The renal units are filled with diabetics. It's a national crisis and not much effort has been put into publicizing the disease.There's going to be a sugar tax in April to reduce sugar consumption, but the alternative is "non-nutritive sweeteners" which are probably even more lethal.....

Yes, I am on a statin for cholesterol. Scary, but don't know what else to use (have to rely on the medical professionals). It's hard to avoid all the things I am supposed to (potassium, phosphates, calcium and so on). Back to the renal unit again tomorrow (it's my home from home) and will probably end up completely "bombed" afterwards - which usually means a strong day after, so for me is a good sign). I do hope that home dialysis we become available here as longer less stressful dialysis seems to give us a far better lifestyle.

Thanks and keep well: Stephen

[Dkgus53]

use a warm pad on your hands. you know those heat packs that hunters/campers use for heat during winter. that may help. my dialysis nurse told meabout that. I know it's an awfull feeling, I have it also.

[StephenA]

Hi, doesn't seem like 8 months since my last post. Great news from my side: I can feel so much better on the day after HD by watching my nutrition. I found that dialysis is very good at extracting amino acids (hence the increased need for protein) but also that L-carnitine is needed by the body (it's made by the body if your kidneys work), so I tried adding L-carnitine to my diet via supplements (used by the "gym-bunnies"!) and what do you know. I now go lawn bowling 3 times a week (hemo prevents more time on the greens) and feel really strong. It has also reduced the numbness/pain/freezing in my hands and feet. The change has been fabulous. Makes sense, too. Dialysis is not very clever about what it can remove, so good goes with the bad. Malnutrition is possible. Grill your doctors about this. One other benefit is that my weight has become stable.

One last suggestion (could be difficult in UK): get outside, go bowling, be active. Sweating will reduce fluids and also take out some of the excess potassium and sodium.

Finally my life is getting much better. 3 x 4h HD is a real pain in the posterior, but now the day after is "whoppeeeeee".

PS I suppose all of you are like me: reading ingredient contents of everything I buy. My potassium went haywire because I started to eat egg white for the protein - potassium went up as well. I've cut out all dairy products now (black coffee is nice) and am back in "spec". Good luck everyone.