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neuropathy - Carers UK Forum


For issues related to specific conditions and disabilities.

The lastest illness my hubby has been diagnosed with is neurophathy. Specifically severe axonal generalised sensory motor large fibre poly neuropathy (what a mouthful).
At the moment he can no longer load bear, his feeling has gone in his legs and his has had to have a superpubic catheter fitted although they are exploring other causes for his bladder problems.
Every day there seems to be something else that he can't feel or do and with his other health issues(AF,diabetes, chronic pancreatits, fibromyalgia, hiatis hernia, arthritis........) his depression is getting worse.
Whilst diabetes has caused some of the problem it has been accelerated by other things such as the problems with his pancreas and previous problems with alcohol.

An one else out there caring for somone with this with or without other health issues
Hi. I have a partner with Diabetes (brittle), Nuropothy, fibromyalgia, blindness and several other undiagnosed conditions so I do have an idea what you are going through. The depression is hard to handle. Seeing the loved-one you have loved for so many years, go downhill and come to this in their lives, leaves the carer devastated and feeling so much in an array of emotions and every fibre of their being wanting to help relieve their loved-one of their daily pains and difficulties. A lt of the time we feel so alone, with the feeling that no-one else understands or cares just what has to be done on a daily basis to keep things from seeping into darkness and wanting to run for the hills! Oh boy its a struggle, but I only wrote this to show support and pass my best to you. As you know, love carries us on and for such a small word, them meaning of it is as vast as the universe! Please excuse the description, LOL but it did help me write it down.
Reagrds and understanding.
Thanks for the reply I think you nailled it on the head there
Booksey, I have come across a lot of young people who are suffering from diabetic neuropathy. There appear to be quite a variety of medications to take to try and alleviate the severe pain.I hvae talked to two young women who are prescribed morphine patches. I had no idea that the neuropathy pain was so severe.
To be fair LazyDaisy I don't think its the pain that bothers him so much. He as lots of pain in his body from other problems and I think it all merges into one. Its the loss of control of his body thats most upsetting for him. He can no longer weight bear. He has no idea where his feet are in relation to the rest of his body. (There is oftern a cry of Wheres me feet!!) His bladder control has gone. Hes not always sure if he needs the loo or not (so far no loss of control there Image ).
None of the professionals can believe that its happened so fast but the neuologist has identified contributing factors like his pancreas problems.
It must be terrible for younger people to be dealing with it on top of the diabetes itself
My husband now has a diagnosis of peripheral neuropathy. His sense of balance is very poor because he can't feel his legs properly. He also now has problems with bladder and bowel control. He has been in a rehab centre in Hereford since this morning, which is giving me a much needed rest, but at age 83 I am not sure how much rehabilitation is possible and suspect they will srnd him back home all too soon.
My daughter also has this, following surgery a couple of years ago. It seems to have got worse and she needs to use crutches a lot of the time. Over a week ago she had to go for a blood test and the nurse took the blood from A's bad arm. A tried to stop her, but was unsuccessful as the nurse insisted it would be fine. A found it more than normally painful when the needle went in and her arm has been very sore ever since. She doesn't know if the needle hit a nerve or if her neuropathy has affected how she reacted to the procedure. I rang up about it when it had been going on for a few days and the doctor left a prescription for some gel at the chemist, which has helped, but A has to use it quite frequently to get relief.

My partner has peripheral and autonomic neuropathy. No sensation in his remaining leg (he has had a toe amputation on his remaining foot with no anaesthetic!) His body is failing to digest food, what does get through the system struggles to get out. Passing urine is a strain. It he refuses to speak to anyone about catheterisation. I can't and won't make him do anything he doesn't want to do. It is hard seeing bodily functions fail. The heatwave is making him very ill. He can't regulate his own body temperature and is suffering badly. I'm trying to ignore his mood swings but I always feel like I'm getting it all wrong :/
I have ME and fibromyalgia and the pain is awful.
Hello, my partner has diabetic neuropathy, he was first diagnosed about 4 years ago, and watching his health decline has been really hard. It all happened so quickly really, it started with a strange sensational on his foot and quickly developed into severe pain and numbness throughout his whole body. He suffered a heart attack 2 years ago, he suffered no pain just a strange feeling so they think it has now affected the nerves around his heart. He is on a whole host of different medication to try and control the pain including zomorph, oramorph duloxatine amongst many others. He has recently been put back under the pain management team at the hospital to see if there's anything else they can do but I'm not hopeful. He has muscle weakness and can't walk far now, he has to use his wheelchair most of the time. He was very fit and active prior to becoming ill.