Neuropathy Help

[sam1959]

Hi Laura
For over 4yrs i tried to tell doctors etc i had neuropathy and all
said i had not. I went through all of the symptons you could ever
imagine and i had become very depressed and most nights i would
cry as it was so bad. I saw a consultant that at last listened to me
and he put me on Gabapentin which has been a blessing. It
started to work very quickly also helped with my moods too.
He then wrote to doctor telling him i had peripheral vascular neuropathy.
I also went on to ebay and was able to buy ladies diabetic socks at
a reasonable price. these also work for me.
On the subject of a foot cradle my father swears by his so much so i
will now be getting one for the odd occasion my feet do play up.
I wish you well and hope this may have helped a little.

ruth

 

[Ginnie48]

Hi sorry you're having such trouble with your feet.Mine have been like that for about 5 years but this last 6 months have been the worst.I know what you mean about crying,especially at night ,thats when the pain is worst,I've been sleeping,or trying to sleep with my feet out of the bed to try and get relief.I've even been known to put them in ice in the early hours,just to get rid of that"walking on glass" feeling.I'm hoping that now I've been diagnosed with Type 2 that I may get some help,seeing as the Neurologist has told me that I won't be under him anymore for the Peripheral Neuropathy and that it's up to the Diabetic Clinic to take over.That was at the beginning of February and I still haven't heard anything yet.I've only seen the Practice nurse once,when she told me I had Type 2,put me on Metformin and said she'd see me in 6 months.
I'm going to try and be possitive,I think joining this site is going to be a big help.I hope you feel, like me,that hearing from others who are experiencing the same pain etc,helps me feel like I'm not alone and that there are things to help.
I sleep with my earphones on and Classic FM playing all night and douse my pillow with Lavender oil!I must look a sight with my legs hanging over the end of the bed and earphones attached lol,but hey I'm willing to try anything.I hope you start to feel better soon and we'll probably meet in chat.Till then take care,Ginnie x

 

[Soundgen]

Statins reduce the amount of Cholesterol available to your body . mylenin sheath which is made of fatty deposits from Cholesterol deposited with the help of B vitamins , take Statins and reduce the amount available for Myelin sheath building , ALL diabetics have Vitamin B problems . see the Benfotiamine link for details , http://www.diabetes.co.uk/diabetes-...10&t=9454&p=130298&hilit=Benfotiamine#p115896

Unless of course the Benfotiamine is encouraging some repair to the nerves, which might explain the return of the pains.

 

[Anonymous]

Soundgen.
Your previous post has been edited to remove one of your comments.

You were previously warned about the banned link on this forum and the reason why it is banned here. Yet again you are still seeking to promote it here. This will not be tolerated.

You are running the risk of a suspension and/or banning permanently from this forum if you persist.

Mod 3

 

[georgethetee]

Sorry to hear of your troubles Laura.

I have to agree with Dobbs about tight bg control but easier said than done. We have to walk that tightrope to survive these problems. I have had Type 1 for 57 years, high dose, and had not many complications so am mostly lucky, especially if you discount the triple-ankle break I sufferred whilst hypoing a year ago.

Take care please

George

 

[rogerd1]

I have had Neuropathy for 16 yrs. It started just as you stated and it is frightening at first. With good control and the right medication, you do learn to life with it. You get on with life in spite of the pain.
I have also had a spinal stimulation implant. This helps a great deal. I lead a good life now I have a few tricks mentioned by others, eg socks, good shoes, insoles. talk to your nurse and specialist Doctor and pain specialist.
Good luck
Roger

 

[Dan Olner]

Just signed up to this forum to find out about neuropathy, and found this thread. Brilliant. It's actually my mother who has neuropathy - cranial, autonomic, causing sickness/diarrhoea. It's much worse when she lies down. She also has a dropped foot.

I'm at her flat now - it's been a hard time. She's been "self-medicating" with pretty much anything she can get - various benzodiazapines, even methodone. The result has been a complete mess and, of course, the first casualty has been her diet - ruining the first real line of attack against the neuropathy. I'm here trying to make sure that doesn't start again, but i don't know what the best thing to do is.

But now she's off all these again and the neuropathy's in full force, it's horrible. There are so many ideas here for dealing with it I'd never come across. Sadly, she seems to already have made her mind up on what she believes will work. But it's been interesting reading all different treatments I'd never heard of before. Is everyone here from the UK...?

As with others here, I don't think the GP picked up on it for a long time, which hasn't helped.

If anyone's got any good suggestions on how a relative can help a vulnerable sufferer deal with UK health services to continue making sure we're trying everything possible, I'd really appreciate it. Though perhaps any medical professional would not respond well to me turning up going "I've been reading a forum and I've got this big list of things we'd like to try...!"

I'm just scared that, unless we can continue to find ways to improve things, she'll just fall back on zonking herself out in any way possible, thus not only ruining her dietary control but continuing to become more and more frail. Any suggestions or thoughts gratefully received. And of course it's just nice to talk to others about this.

 

[ham79]

Dan so sorry to hear about your mums suffering you need to kick up holy hell to get her help.
As for my neuropathy the pain team have said it is not neuropathy it's my spine woo hoo 6 months wasted

 

[Synonym]

As for my neuropathy the pain team have said it is not neuropathy it's my spine woo hoo 6 months wasted

You will then find that you are the one who has to decide whether to go for surgery or not. No advice has been proffered to me except to say that "it could work but it may not work or it could make it all worse". What to do eh? :? :roll:

Hope you do better!

 

[ham79]

wow that is awesome but hey I'm already in wheelchair :shock:

 

[Synonym]

wow that is awesome but hey I'm already in wheelchair :shock:

Well, spinal surgery is clearly not to be undertaken lightly but there is obviously a point, where you probably are, where the only way is up. I am hanging on in there at the moment but if things continue on the downward slope undoubtedly I will have to go for it too.

Wishing you very well with it all.

 

[iHs]

This probably doesn't do anything for neuropathy but might for spinal problems. Medtronic the insulin pump peeps also do a small device that controls spinal pain. Have a look at tamethepain.com/

 

[Dave56]

This is to anyone who has been diagnosed with Neuropathy.
The main problem with neuropathy is the loss of feeling as I found out to my misfortune in 2008.
I developed an injury to the underside of my right foot, which despite being given various strenghts of antibiotics and treatment I eventually lost all 5 toes. So if anyone has been confirmed as having the condition please make sure you check your feet everyday, use a mirror to check the underside. And if you do find even the smallest thing seek medical advice straight away. Dont end up like me, even today I am still having problems such as balance.

 

[tonypeps]

Hi, I have auto-immune vasculitis with peripheral neuropathy and only was diagnosed as diabetic in the course of treatment for that. For the first six months I lived on a serious diet of codeine every night.
Now the AV is under control i find that the circulatory damage is helped by wearing Milletts thermal underwear as soon as it gets nippy outside.
really confuses the shop assistants who can't ever decide whether i need them for orienteering or x-country skiing.

 

[Laura72]

Hi everybody and thanks so much for all your fantastic suggestions. I ain't been coping too well with it all. The pain and lack of sleep are really taking their toll. I would like to mention at this time that I am 23 which to a lot of people is a young age to develop neuropathy. Ive met with the diabetic nurse specialist and she said im doin everything that she would have told me to do - wow...I suppose I thought she would have more to say!!!

 

[REDBULL2K7]

hi all , im new to al of this , was dianoised about 8 weeks ago , went to my docs as i was going to the toilet during the night alot and tired all day , been like it for about a year so my own fault , but since going and having my blood checked etc and finding out it was 23.9 im now down to 7 - 10 , but what i dont get is im getting all the nerve problems as described on here , burning toes and stabbing burning pains in my testicles and stomach i did tell the nurse and all she said was it will get better when my readings get better but didnt offer me no medicine ? .Also i find it impossible to get any good sleep , i feel like im buzzing all the time , i wake up at usually 3 am and cant get back to sleep then and the pains now doing my head in so im going to the docs and ask for some help , also since being dianosed i havnt seen a dietion or had a eye test ? should i by now ?

im on glidazide 80 mg 1 in morning and night
and 1 sitagliptin 100 mg in the morning

also my nurse keeps saying she wants to get me off the glidazine in time ?

thanks

ps im 41 and umder weight in fact where i was losing weight i was quite happy turns out it was probably to do with the fact i was diabetic .

 

[ltvegh]

I am 26 and have had Nueropathy both peripheral and autonomic for 8 years. I can understand how frightening it is the first stages and can even remember getting completely wasted to forget the pain (which I would never recommend as it only made it worse!) However I remember that in the beginning I too couldnt bear to have the bed clothes touch my legs and so this may seem a strange suggestion but I use to wear tights to bed because the pain seemed to be coming from the friction of the covers moving against my skin, try a tightish pair of tights and see if this helps.

I am now on amitriptylline and codeine, they make you sick and tired in the beginning but once used to them they seem to help. I know it sometimes feels that you are so alone especially as it is not something that can be definitively diagnosed but you are not many of us understand the pain and confuison that comes with Nueropathy especiall when considering that we already have the Diabetes to deal with. Please remember to always log on here of give someone callto talk about the symptoms because I suffered from deep depression when I first got it.
Take care and remember you are not alone.