Diabetic neuropathy

artfuldodger said:

Anybody have any other advise on how to help cope with it

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Hi @artfuldodger my very limited understanding is the brain misinterpreting the lack of input from nerves in the extremities as cold or pain as its trying to replace the lack of information with past experiences and absence of expected signals.

However there are also physical symptoms which fly in the face of this, my fingers are cold because they are cold. I can measure this with a thermometer, this is empirical. There is no misinterpreting this sensation for pain my brain barely registers any discomfort. I often don't notice it.

My feet on the other hand are often painfully cold although not cold to the touch. Its worse at night.

What makes both of these things worse, both feet and hands, is coming into contact with anything cold. Simply a cold floor even with slippers, holding a cold glass of water, or a cool mattress at night, used to love that feeling.

Your post doesn't mention any issues with hands so some things I find help a little, when ever possible my feet insulated from the floor, not elevated just off the floor. Changing into different pairs of shoes throughout the day & multiple pairs of slippers seems to help maybe its just a placebo effect or more likely at times I can physical feel the soles of my shoes are cold to the touch perhaps not insulating my feet as well as I think.

Realising I have been sat in front of the keyboard or TV for to long and getting up and moving around for a bit helps. This also work a bit at night when I have trouble sleeping.

A hot water bottle at the bottom of the mattress to take the chill of, even in summer.

You said your GP issued amitriptyline 10mg for night times to help.
Same here with the instruction to keep upping the dosage until I found a level that managed the pain effectively.
Perhaps that's something you should check with your GP.

You don't say how long you have been on 10mg for it can take month before you feel the desired effects. There are people on here that have had success by reducing blood sugars, @KennyA has spoken about it recently on a couple of other posts.

For me I didn't like the side effects of amitriptyline, instead I am working on moving around more and simply trying myself out expending some energy , through increased activate through the day, so I can fall asleep more easily at nights.

Seems to be helping.

artfuldodger said:

unfortunately I am very limited to exercise

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Have you considered an Electronic Muscle Stimulation (EMS) pad.

The sales pitch:
Electronic foot pads are devices designed to provide warmth, massage, or therapeutic stimulation to the feet. EMS foot pads use low-frequency electrical impulses to stimulate muscles and nerves in the feet, promoting blood circulation and helping to relieve soreness, tension, and pain associated with conditions like arthritis. Heated foot pads are commonly used to provide warmth and relief for cold feet , particularly beneficial for individuals with poor circulation, arthritis, or conditions like Raynaud's syndrome.

I bought on a while back, I don't use it as often as I should to get the full benefit, you might find it helpful. You can pick them up fairly cheaply on line.

artfuldodger said:

problem with most pain killers like ibuprofen can't take as it messes my insulin up will try and walk a little at night see if that helps with sleep

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Sorry @artfuldodger just reread your post and missed these points.

Ibuprofen and other such pain killers wont help with neuropathy as the pain is in the coming from the nerve endings, or lack of, which is the reason I suggested checking with your GP, and upping the dosage of the amitriptyline it works differently.

Walking at night I just get up and walk back and forth in the house for a couple of mins, even standing for a little helps. Don't have to strain yourself.

Peaple with neuropathy should get there b12 checked. I have it and I am going to check with my GP if mine has ever been checked after reading this.
type 2 diabetic with neuropathy, especially if taking metformin, should have vitamin B12 levels checked due to a known association between metformin and B12
deficiency, which can cause or worsen neuropathy. Routine testing is recommended for these high- risk patients to allow for prompt diagnosis and treatment, which can prevent permanent nerve damage.

Yes, I have terrible neuropathy in my feet and toes, and it's now creeping into my fingers. I keep asking my GP about my B12, but apparently, my blood tests show I'm not deficient! They keep offering me Amytryptiline but they just make me like a zombie!! I'm now trying Electrical Muscle Stimulation...I can't say there's a huge improvement as yet, but I'll keep going with it. Good luck xx

sue1309 said:

I'm now trying Electrical Muscle Stimulation...I can't say there's a huge improvement as yet, but I'll keep going with it

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Hi @sue1309,
This is purely anecdotal and may be due to other factors reducing blood sugars, exercise, etc ...

That said I am using a EMS mat for my feet seems to have lessened the stabbing pins and needles sensations. I have gone from multiple times every day to occasionally through the week. Even then they are less severe.

It does nothing for the cold/pain but you can get heated EMS mats that may help you.

What I have found helps a lot are electronic hand warmers.
A surprise beneficial side effect is they have reduced the Skin Crawling feeling in my hands( like ants crawling over your skin) a very common symptom in neuropathy.

They work so well for my hands I bought an additional pair shaped like smarty tubes (the first pair is shaped like a pebble to fit into gloves.) to use on my feet so I can curl my toes round them where the pain is mostly focused. I find this helps a lot with the getting some much needed warmth to my feet reducing the stinging cold sensation.

The science behind it, heat stimulates blood flow and reduces the pain.

Hope that's of some help to you.

My Mum has type 2, tentatively diagnosed with diabetic neuropathy, and has lost mobility, in big part due to spending nearly 90 days in hospital with minimal movement over 4 visits since May (the first stay under a stroke consultant because of her left leg not working, the other 3 stays due to infections picked up from previous stays!).

Currently we have a hoist, and it is needed to move Mum anywhere - for example, from her chair to the commode. Her left leg is mostly unresponsive as well as having drop foot, and her right leg is better but also very weak, but there is some muscle control, so we are hopeful of building up enough strength to at least be able to use a rotunda, or ultimately a stroller.

I say a tentative diagnosis because we have only had a stroke doctor explain a nerve conduction study results, which he caveated as not being his speciality.

What we have not had a medical answer to yet, is whether it is possible for Mum to get back to being able to stand unaided, or even walk a little, if she puts in enough exercise. My Mum is quite demoralised though and feels like nothing will get better, and as her now fulltime carer it is wearing me down too. My concern is that since she was losing mobility before the first hospital stay, and now her muscles are very weak, is there really a chance of getting back to the start of this year when she could go to the bathroom unaided, and make a cup of tea, even a spot of gardening and out to shops?

Melgar said:

I’m sorry to hear what you and your mom are going through. Do you have access to a physiotherapist. Even for just a consult? Keeping your mom’s joint muscles mobile, I would think, is imperative. There are likely exercises you can help your mom with to help her retain some joint mobility and muscle strength.

I sit with a senior, she is 103. Unfortunately she is now bed ridden for much of the time following a fall, but she is at home. She has a hoist to lift her in and out of her wheelchair. Her carers, under the supervision of her physio, exercise her arms and legs several times a day.

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Mum has been seen by a few physios at hospital as well as at home, who have tasked her with some initial minimal exercises. Unfortunately she is not very motivated to do them, and I hate badgering her all the time, but I have started to take more responsibility to push her. It will be slow going though.

The biggest challenge is getting mum to the commode. The recommended way is to hoist her onto the commode, wheel her to the bed, hoist her onto the bed, remove her undergarments, hoist her back onto the commode, let her do what needs doing, then clean up, hoist her back to the bed, replace her clothing, hoist her back to the commode for transit back to her chair, then hoist her into the chair. It takes so long that either Mum has an accident mid transit, or has lost the urge to go!

The only other alternative we try at the moment, is using a rotunda, and I physically help mum lift up enough off the chair to pull her undergarments down, before spinning and almost throwing her onto the commode set at right angles to the chair, then doing it in reverse. I recognise this is fraught with danger - although there is a large item of furniture to wedge the commode against so it can't slip backwards. Since Mum is developing sitting sores, it is also painful tugging her clothing around, especially trying to pull up undergarments.

We are hoping for a minilift to try next week, but it still needs Mum to have some strength in her legs.

Mum hates the hospital bed, and stays pretty much 24/7 in her riser/recliner chair which adds to the challenge of looking after her. We do get carers in twice a day, but they have to use the hoist, and never coincide with when Mum needs the toilet. Luckily it is only no2s as she has a urostomy so no1s is easy to manage.

We can't be the first in this situation - does anyone have any potential tips? We have discussed the idea of disposable pants but Mum is not keen on them, and then cleaning afterwards would be tricky.

I am in a similar situation having had a stroke in May and came out of hospital 2 weeks ago. My left side doesn't function, and I am transiting between commode and wheelchair, or heightened lavatory seat, or stairlift, via zimmer frame. It is exhausting and humiliating. I too have been given physio exercises to do to strengthen my leg and arm, but unlike the situation you have to manage, I am very motivated to do them. I don't notice any changes, but my poor husband, who has ended up as my carer, and various friends who visit, all say they see improvements. So I keep on keeping on. If your Mum can stand at all, the zimmer is a godsend for supporting through the underwear removal and restoration rites, and of course, any standing even if supported by a hoist, will strengthen the legs. I have a hospital bed with a grab handle for getting in and out, and can manage to sit on the side of it for being dressed. It's a miserable situation for all, and how much it can improve is in the lap of the gods so I really feel for you and your Mum.