Peripheral Neuropathy

Does anyone here suffer from Peripheral Neuropathy problems? I am a carer for my wife who has co ordination difficulties and mild learning difficulties following a brain injury. She is confined to a wheelchair when outside and can walk slowly with a walking aid when indoors but is very prone to falls. Several times this year we have had to get paramedics using a pneumatic lifting device to get her off the floor. For about 2 years now she has also been suffering from strong pins and needles like pain and cramps in her legs and feet. She had nerve conduction tests at Birmingham City Hospital and diagnosed with Peripheral Neuropathy. The treatment for this so far has been to give her liquid Amitriptyline because she can’t swallow tablets. Starting on a low dose of just a couple of Mls gradually increasing up to 10Mls per dose. Frankly, it has not had any effect at all so I wondered if any others here have Peripheral Neuropathy amongst their other problems and have found anything that helps with the pain? My wife also has diabetes and high blood pressure so I assume the Diabetes has caused nerve damage. Any advice welcome.

Hi Redbridge,

these threads might be a good place to start https://www.carersuk.org/forum/search?keywords=%2BPeripheral+%2BNeuropathy+&terms=all&author=&sc=1&sf=all&sr=posts&sk=t&sd=d&st=0&ch=300&t=0&submit=Search (hopefully the link will work.)

Melly1

Thank you Melly. It helps to see that we are not on our own with so many search comments on Peripheral Neuropathy but nobody has as yet mentioned what medications they are given for it or what effects they have. Since Amitriptyline seems to have little or no effect I wondered if any other sufferers had received better medications? There does not seem to be any ideas so far as to anyone finding an effective medication or treatment.

Hi,

you could PM Melina_1806a and ask her.

Melly1

Peripheral Neuropathy, (sometimes known as Diabetic Neuropathy) is usually caused by prolonged high blood sugar levels. This causes nerve damage to the longest nerves in the body, those in the legs/feet.

This damage is not reversible.

Amitryptyline is given for relief of nerve pain, (and also used an anti-depressant, as are so many other drugs for which it was not their original purpose). She may also be offered both Gabapentin and Pregabalin in the future.

It doesn’t surprise me at all that she falls regularly, the feet and legs just don’t work like they used to.Mine certainly don’t, but the PN has not got any worse since I’ve been on Insulin, (for Type 3 Diabetes).

Do you check her blood-sugar levels regularly?

Thanks for your advice Ayjay. We have had no mention at all of Gabapentin or Pregabalin. Are these instead of Amitriptyline or as well as I wonder. Anyway, worth knowing so I can ask the doctor about them. The funny thing is, I know all about the importance of keeping my wifes blood sugar levels correct and everytime we attend the diabetic clinic for reviews, I as her full time carer are always congratulated on how well I keep her sugar levels so the fact that you say its usually caused by prolonged high blood sugar levels is surprising. When we went for the nerve conduction tests, the level of stimulation voltage to get the nerves to react was unusually high. In fact the consultant who did the tests called in another medic to see the levels needed.
You are right that her ability to walk without falling has got much worse since she was diagnosed with Peripheral Neuropathy. She had co ordination problems with her legs and feet, arms and hands etc and also had swallowing difficulties which mean I basically have to cook her a normal meal and then put the individual items through a food processor to turn them into almost a paste before she can eat them safely. So the falling is certainly not caused by the Peripheral Neuropathy but is clearly made worse by it. I can keep her safe by only taking her out in her electric wheelchair when outside and following behind her supporting her when she walks with her walker indoors so she is not really bothered about the increased co ordination problems but its the pain from the strong needles & pins effect and cramping effects that is the biggest problem. It keeps her awake at night and is often an annoyance during the day as well although strangely, she does not seem to have it constantly and it comes and goes throughout the day and night. Also she cannot tell if her feet are hot or cold and there is limited feeling in the feet and legs. Anyway, the information you have given me regarding the Gabapentin and Pregabalin medications is something I can research and ask our doctor about so many thanks for your help and advice.

My mum suffered with PN for many years and was prescribed transdermal pain patches. They were applied to the top of her arm and lasted a week. I can’t remember the exact medication they used, but they came in various strengths and had to be prescribed by her GP.

Thank you Pennie, another thing to discuss with our doctor.

Pennie, was it Fentanyl. I know my mum had these for her pain.

Ah, yes, I think that was what they were!