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UPDATE ON HUBBY neuropathy please do this 1 thing

andreaabbott1

Well-Known Member
Messages
55
Sorry people its been so long but nothing and I mean nothing is being moved fast
we finally got to see our own family GP just before christmas
to say she was shocked about how my hubby is was an understatement
she thought he had MND
well thankfully she has moved things along
hubby had a nerve conduction test last week and an EMG
the results are sensorimotor axonal neuropathy

we see the neurologist this saturday

Christmas was horrid and I mean horrid my son came with his wife who I haven't seen in a year and hubby refused to eat or even attempt a conversation
he just laid on the sofa the whole of christmas

we are waiting now for a wheelchair and also physio started this week and she is like Mrs Trunchbull
she takes no nonsense and has told him that he is making the problem with his nerves worse by sitting/laying on his A*** all day
he has muscle atrophy but what muscle he has is functioning but he is not using them

he is now on Gabapentin the GP has removed the tramadol as he was self medicating and it wasnt helping with the pain but neither is the Gabapentin

He has also started having bowel and urine issues as well as swallowing problems but the GP says his swallowing food is a mental health things as he is able to drink and is not dribbling or choking

PLEASE PLEASE for your sake and the sake of your loved ones keep your bloods under control
my husbands type 2 has ruined OUR life , The childrens life they now have a dad who cant even climb stairs or go out
a dad who because of the pain he is in is to grumpy even to look at a picture book or eat meals with the family

a dad that my children his children wish would go away
high BG will take your life
 
Sorry to hear your news @andreaabbot1

It does serve as a warning to other diabetics that it is important to try and manage your condition.

(((((hugs)))))
 
Hello andreaabbott1, my heart goes out to you and your family,so sad,please take care of yourself and your children,we none of us are an island , things we do affect those around us more than we know, i hope others take note of the consequences of not controlling bs's,not just for the person who has diabetes,but for their loved ones too, sending you ((((( hugs))))) and fortitude , clive
 

Oh Andrea, I'm sorry your news isn't more positive.

I often say of so many conditions that they are "not solo sports", meaning it impacts so many others too. Sadly, your husband's condition is now in that league.

I hope the neurologist can find a way to make your husband comfortable enough to get a bit motivated to making the very best of his situation.
 
Please may I suggest that you check the safety notes for Garbapentin since it may be bringing about mood swings and/or depression. It appears to be contra-indicated for diabetics (warning only) or previous history of depression. Get back to you doctor if you have any concerns.

My wife was given it to treat her maniac depression when she was high, and it was used to quieten down her high moods. It did not suit her, and she was not on it for long. I myself have no experience apart from this.

However, i do empathise with your husband. I suffered 2 strokes and a heart attack, and these have affected my mobility somewhat. I am also sitting on my A~** a lot, and grumpy as hell too. It is depression at no longer being able to do what I used to do. I do not have answers myself, but I fight it by taking control of my diabetes by (a) interacting on this forum, (b) researching topics and increasing my own knowledge of diabetes treatments, (c) taking an active role in organising my diet and involving my family in all of these. Now I feel more in control, and spend less time contemplating my navel.
 

Hi. can I just respectfully disagree with something you have written here? Gabapentin isn't contraindicated for diabetics, and is in fact indicated for treating neuropathy caused by diabetes. It would certainly need to be prescribed with caution in anyone with a mental health issue that involves any extreme lowering of mood, and bipolar would certainly come under that heading.

Hope you didn't mind me pointing that out
 
Not at all. I was going by web info which is always suspect. However it was a website that has in the past been mostly reliable. Perhaps contraindicated is too strong a term that I used. There was a warning to consult doctor if diabetic, which is why I notated my comment as such. I have checked other sites now, and the only factors that may be of interest is that it may affect urine tests for protein [dipstick tests], and it should not be used with aluminium or magnesium (presumably supplement form?). My apologies. It seems Neurontin is the form to be used rather than Horizant. But my advice to check the data sheets holds still, since there seem to be some unusual side effects listed with this med.
 
Just to let you know everything he has had has been via the doctor they have tried pregabalin that didnt work
Amitriptyline, which because of the neuropathy and blood pressure drop when he stands he was taken off that, plus it didnt touch the pain at all
neither did tramadol
we are now on 600mg of Gabapentin morning and afternoon and 900mg in the evening and still no relief from the pain

he has never ever taken his diabetes seriously and has refused to eat healthy meals
I have posted on here for ages about trying to get him to eat correctly
frequent blood sugars in the 24,s or higher for 15 years

he has been lucky to get away without complications for so long
but this started suddenly in July 2015 as an ache and pins and needles in his toes
now he cant weight bear on either leg
his weight has gone from 18 stone down to 10 stone
he looks older than a 90 year old

the pain is constant burning, pins and needles, the feeling of muscles tearing
the knee joints hurting
electric shock feelings, muscle claudication
sensitive to touch
although he is still lucky that he can feel the difference between hot and cold and he can feel a pin touching his leg and a feather

he can no longer go upstairs so as such hasnt showed in 4 months
he cant lift himself off the loo so has a frame around the loo

honestly please please dont ever do this to yourselves or family
just say no to the ice cream or mashed potato or the cake, stop buying biscuits because yes 1 can and will hurt

I look at diabetes now as a destroyer of life , and it needs to be fought by the person who has it, like a naughty child who wants sweets and chocolate and you have to be firm and say no

I never really believed diabetes was a killer, but it is and a very sneaky killer to, because by the time you are aware of the damage it is doing its to late to stop it
 
So sorry Andrea, and thank you for the wake up call.
 

Sorry that things are going this way for both of you.

Who does the cooking? Is there any way you could bias things towards an LC type of diet. I would suggest LCHF because he does not need to lose weight, but there are others. Try carb substitutes such as cauli mash instead of mashed pot. My family are now converted to these simple changes, and find them very tasty.

In Germany the GP can prescribe Alpha Lipoic Acid (ALA) for neuropathy pain, and a dose of 600 to 800 mg pd seems to be the level needed for it according to the threads on this forum. It is not on scrip here in UK, but it may be worth looking on the forum for info. Just a thought. Good luck, and hope things improve in the Spring when the weather is hopefully better.
 
Today we finally saw the neurologists diagnose is neuropathy all of them plus painful neuropathy
the neurologist told hubby that he must inform the DVLA as hubby is no longer to drive

also told us it wont get better there is 0 chance
he has now put him on a drug called Duloxetine

he is sending him to gastrics to have a camera put down his food pipe as hubby is malnourished just about eating 500 calories a day and thats made up of ensure plus which is liquid based

we dont know if its the neuropathy affecting his eating or if its physiologic

obviously hubby isnt happy with the diagnoses

but now tells me he first had symptoms 6 years ago
but he didnt attend his appointments
didnt have his blood tests
would just mention to the GP my BS is high about 8 but that would be once a year and he didn't then go for his follow up appointments at the diabetic clinic

before anyone yells at me my posts date back to 2011 where I am begging for ideas to stop him buying and eating rubbish foods

I have tried, yelled screamed thrown out bad foods but the he would order in a take away curry
if I took cakes and biscuits and crisps out the shopping trolley he would yell at me in public.

cruel though it may sound I have no sympathy for him, and I am certainly not going to be his carer after the way he has treated me and the children
 
This is sad news indeed, and a significant warning to us here in this thread. I feel for you, and hope you find the strength to face this with fortitude.
 
andreaabbott1 said:
I am begging for ideas to stop him buying and eating rubbish foods
Click to expand...

Where is his limit line before this gets worse? I can't advise you your next course of action but abuse is now taking its toll.

He must feel absolutely useless but you have equal reason to feel angry
 
@andreaabbott1 ...have just read your updates and so sorry to hear that this is where it has come to......can also see that this is where I may be heading to at some point and that worries me....

...just picking up on your last comment about having no sympathy for him I would just say that I totally agree with that and as cruel as it may sound is my feelings towards my partner and his diabetes that he refuses to acknowledge and deal with...as a partner you can only do so much....bit by bit I am removing myself emotionally from the situation...

By the way my partner was also prescribed Duloxetine for neuropathic pain but don't think it really does much for him ....he still complains of pain and uses that as an excuse as to why he can't walk far...also spends the majority of day in bed and when he does get up does virtually nothing...can see him ending up in the same position as your husband but he won't change his ways ...is nothing more I can do if he won't listen to what people tell him....

Take care and look after yourself and the children.
 
Molly I feel for you, personally I dont know why I have stayed with him, well no I do simple because me and the children would be homeless, and I have worked hard he walked into my home but its rented.

I am going to talk to my GP this week and just tell her straight how it is as he cant care for himself not even make a sandwich,
he needs to go into a care home, because I now look at him as something I dont want anymore

sorry to any men out there and I know you are not all like him, but he is never in the wrong and NOW he is blaming me telling me I should have done more, he even said today (i smoke) to me "I hope you get lung cancer then I can say its your own fault"

sorry but what sort of man says that to his wife and the mother of his children
 
andreaabbott1 said:
sorry but what sort of man says that to his wife and the mother of his children
Click to expand...

Someone who does not care for you and your children and is lashing out in pure anger, unless of course he has history that predates his diagnosis
 

Andrea, I was a member of a forum for Carers until recently. Your words may seem too harsh to many, even after what you have been through, the mention of a care home. I am in total agreement with your decision, because the facts are that he will not get better from this, and the constant hard physical slog (not to mention the psychological side) of caring for someone who is losing their mobility and can do nothing for themselves, is a situation that can go on for many years, 10, 20, more. In reality, there is little help out there for carers (the real sort, not careworkers who are paid for doing the job) and the vast majority of the work falls to them. Lifting a grown adult in and out of a wheelchair, cleaning up wet bedsheets in the middle of the night, not to mention having to fetch and carry everything for somebody who is abusive and has done nothing to prevent the situation, is not something that should fall on your shoulders.
The first thing you should do is to contact Social Services and demand an urgent Carers Assessment, this is for you, not for your partner, and deals solely with your needs. You are under no obligation whatsoever to provide care for him (same goes for anybody who is caring for a relative) and can refuse to do so, a care package will then need to be put in place.

I'm going to send you a PM with details of a forum where you can get more detailed advice. It's a brave decision you have taken and I commend you for it.
 
I agree I looked after my father for 8 years with dementia as well as my daughter and her needs. when he eventually,went into a nursing home I collapsed with mental and physical exhaustion. I would not do it again and would not recommend it. Especially as the abuse you can receive in this situation takes longer to recover from. You may find he appreciate you more if you are not doing the careing. In any event you have done your best and deserve a life. Giving him 24/7 care will destroy a part of you. And it's not your fault. You cannot imagine the relief you will feel when he is in a nursing home the fact that he is getting expert care and you get to do the visits when and for as short or long as you like. Do it!
 
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