plz help!

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nikkiwhyte

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Relationship to Diabetes
Type 1
Hello! I'm a newbie to this site and in a way to diabetes to! I was diagnosed when I was 7, I'm now 21 but in the past have never looked after my diabetes. Not purposely mistreated it just taken it for granted.

Last week I started to get pins and needles in my arms and legs and my eyes were playing up. I have been to specialist and doctors and explained the whole situation of not having looked after it and wanting to start a fresh. My pins and needles have now turned to agonising burning pains which are keeping me awake at night. The doctors etc have said to me that although I have neuropathy - if I eventual control my bloods well this will ease off. I guess I just need to hear if anyone else has been in this same situation and able to give me some advice or reassurance!

It's been a major reality check and I just hope it's not too late to turn things around.

Thanks!
 
Hi you are not alone!

Hi nikki

You will meet some really nice people on here, sorry to hear about your problems. I can only give one piece of advice and that is to get yourself under control. But im sure youve heard that from many people.

What I can say is its good in here you will meet some great people and they are all good listeners.

Good luck and welcome to one of the best messaging facilities for diabetes going. 😉
 
Hi! Really nice to hear from you! I'd was told by a nurse to check the site out as I was so confused and needing to talk to people in the same situation.

I've got every intention of getting things under control just need to realise that it'll be a slow process. As I say just worried I've done myself longterm damage at such a young age.

🙂
 
I haven't got the same experience as you but I was diagnosed as type 1 at age 21 so I guess similar in the sense of 'starting from scratch'.

I think the most important thing is to try to get as much information as you can, both by yourself on places like this and from your healthcare team, if you feel you need a refresher on something ask for an appointment etc. Does your local hospital run any education courses such as dafne? They can be so useful both in giving you the knowledge you need and in reinvigorating a desire to get good control. It may be that you need to go right back to basics and forget about what ratios etc you are using now and start again but it really can be done, I tried to ignore my diabetes for a few years when I was first diagnosed but actually found that by devoting some time to working at it it actually became easier to manage.

Good luck with everything and do ask if you think we can help at all!

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Nikki, I'm relatively new to this (2 yrs next week) and I have neuropathy in my hands and feet. I found that since I've got more control over my sugars and I'm more confident with my diabetes, things have improved. My fingers feel more like mine again and I'm gradually getting some feeling back in my feet - so don't despair, things can get better. Obviously the first thing to do is to get those sugars under control and get into a routine that you are comfortable with. There are lots of good people on here who are more than happy to listen and help out. good luck.
 
Hi Niki, what a rotton wake up call :(
Just to let you know I have read many reports of people reversing the neuropathy with good control.
So yes you can do it. Ask for all the help/support you need.
Do you carb count? If not learn so you can have even better control once you can carb count ask for a pump.
But you must be able to show your medical team that you can keep records and do your blood tests at least 4 times/day pref 8 though.
Best wishes
Sue
 
Thanks guys! Ye it's been a horrible wake up call - been feeling very down about the whole situation but trying not to let it get to me as don't want to slip into feeling sad all the time - coz I'm certainly not like that normally!!

I've heard of a few cases of where things have been reversed and also others where they haven't and people have been put on painkillers so I guess it's just a matter of time.

The specialist gave me a target of bloods between 8 - 12 (high to the "average" diabetic) but realistic for me at this stage. Don't want readings going from so high to so low. I need to come to terms with the fact that this won't be an over night fix. Does anyone know roughly how long the process could take?

I was checking my BM about 8 times a day and got into trouble for overkill (1) so just been checking before meals now. I'm just so hoping I havn't done myself any permanent damage and of course you always think worse case scenarios like loss of limbs etc! Sounds silly but in those kind of situations you do!

I'm finding this all so useful already hearing from other people in the same boat.
 
Hi there, another Nikki here 🙂

I am 23 and found out at the end of last year that I have neuropathy so can empathise with the burning pains, I'd never felt anything quite like it before. I take medication for it and it has helped, some pain still but not as bad. Hope that yours can come under control too.

I think it's a sensible approach to bring your blood sugars down gradually, as right away aiming for 4-7 will likely make you feel as if you are low as you are used to being so much higher which wouldn't be very pleasent.

I'm sure with the support and advice here you will get back into control and feel more confident again about what you are doing. Has your nurse mentioned any courses like DAFNE to you? I'm not sure if you know how to carb count or would be interested in it? think it's cool that your nurse directed you to this site.
 
Hi Nikki! Great to hear from you!

It's so refreshing to hear from people in the same situation (although not nice you're suffering too :( ).

The pins and needles were awful to start with but this burning is agony and so worrying. I really am hoping with time it will get better.

I never even realised until I visited my specialist yest about carb counting and I'm booked to go onto a morning course and yes she mention the DAPNE course to be which I'm certainly interested in. . I was put onto Humalog and Levemir about 3 years ago and none of the carb counting was explained to me. Should I buy the Carb Counting book recommended on here in the meantime until I go on the Car Counting course? I want to do everything possible to get things under control and I don't mind the changes it has on my lifestyle as long as I can get back to feeling like myself again.

I'm not sure how long to leave the pains before going to the doctor. Should I leave it a week or so to see if control helps or should I get painkillers from doctors in the meantime anyway. I have been taking paractemol but don't like the idea of popping them constantly!

Do you find your neuropathy restricting now or are you not really effected now you are on the painkillers?

Sorry for so many question I'm just so curious about it all!

Thank you!
 
nikkiwhyte said:
Thanks guys! Ye it's been a horrible wake up call - been feeling very down about the whole situation but trying not to let it get to me as don't want to slip into feeling sad all the time - coz I'm certainly not like that normally!!

I've heard of a few cases of where things have been reversed and also others where they haven't and people have been put on painkillers so I guess it's just a matter of time.
There are certain pain killers that help with the pain. Basically it's nerves that are damaged and as you gain control they object. If you need help for the pain ask for it do not suffer.

The specialist gave me a target of bloods between 8 - 12 (high to the "average" diabetic) but realistic for me at this stage. Don't want readings going from so high to so low. I need to come to terms with the fact that this won't be an over night fix. Does anyone know roughly how long the process could take?
The reason for the higher range is so that you do not do any more damage. If you gain control to quickly then you can cause more problems esp to your eyes. So gently does it.

I was checking my BM about 8 times a day and got into trouble for overkill (1) so just been checking before meals now. I'm just so hoping I havn't done myself any permanent damage and of course you always think worse case scenarios like loss of limbs etc! Sounds silly but in those kind of situations you do!
Fingers crossed you wont loose your limbs. You have had your wake up call. You are young you are doing things to rectify the problemso all this is in your favour.

I'm finding this all so useful already hearing from other people in the same boat.
There is always someone ready and willing to help and listen and forums have been a lifeline for many people So welcome to the club 🙂
Click to expand...
Do a google search for Alpha-Lipoic acid many people rave about it and say it helps with neuropathy
Best wishes
Sue
 
It sounds like the pain is bad so it's worth going to your GP and see if s/he will prescribe anything. Do you find paracetamol helps? I didn't find any painkillers helpful, I'm on gabapentin, which is actually an anti-convulsant medication but used for neuropathy and nerve pain. it has helped with the pain although I do experience the side effect of sleepiness.
does it restrict me? good question that I've had to think about. there are times at work when my feet hurt and I can't bear to put them on the ground and I have to sit with them up for a minute. but generally I don't think it restricts me.

I think it's great that you will be able to do DAFNE in the future, carb counting really is all it's cracked up to be. I can't imagine taking a novorapid dose without carb counting, even if it's only a rough guestimate (like in a restaurant). it can take a bit of time to get the hang of and work out the ratios. I think everyone should be taught it on going onto a basal bolus regieme.

the book I'd reccommend is by John Walsh and it's called 'using insulin', he's from the US but you can buy it on amazon and the blood sugar numbers are written in mmol/l and mg/dl (think thats right but the US measurement anyway). It teaches how to make sure your basal dose (levemir or lantus) is right, how to work out your insulin: carb ratio, how to compensate for exercise, and pretty much all you need to know. i found it very helpful.

thanks sue for mentioning Alpha-Lipoic acid, hadn't heard of it, from my google it appears that you buy it from health food shops, is that right?
 
sofaraway said:
thanks sue for mentioning Alpha-Lipoic acid, hadn't heard of it, from my google it appears that you buy it from health food shops, is that right?
Click to expand...

As far as I know or on line. I haven't heard of anyone getting it on prescription before.
I seem to remember some people also saying Vit B works wonders as well. So might be worth doing a bit of research and seeing what you come up with.
 
No I con't find paracetomal helps that much - in fact if at all. I'm dreading going home tonight and how painful it will be during the evening :( . I've made an appointment with my doctor tomorrow so hope to get painkillers then as finding it agony. I was going to go to the chemist after work to see if there is anything they can prescribe over the counter that may give me quick pain relief for tonight - any ideas?

I'm finding that my knees appear to be feeling weaker and burning up but I've always had bad knees so maybe it's just affected vulnerable areas...I'm not sure.

Will def being looking into Alpha-Lipoic and also Vit B to see which will help most. As I say I'm desperate now to get things sorted.

I've read a few cases on here of people with same symptoms as me and they have eased with drugs and with time and better control also so I'm hoping that will be the same for me.

Ye I'm just guessing my carbs at the moment but at least I'm more aware of the situation than I was before.

Strangely feel better already just for talking about things!

Thanks for book recomendation off to have a look on Amazon for it! 🙂
 
Thanks so much for website. Going to have to learn to control carbs myself at the moment until I can get a course to go on. So the table on the website was of great help! Although the calculations gave me a sore head and I'm slightly confused by a few things so will call my specialist tomorrow.

Thanks again! :D
 
hi nikki, i had the same sort of problems a few years ago. after being diagnosed with type1 i didnt accept it and carried on in my old ways for years. it was only after getting a wake up call that i started to take better care of myself. i started to loose the sight in my left eye which was bad as im already partially blind in my right eye. all i can say is my sight has improved 10x already thanks to better control. the doctors cant say if the remaining damage is there for good but i live in hope it isnt.
 
Hi Mike!

All doctors etc I've spoken to have said things should get better with better control etc I just need to realise that this won't happen over night! I'm very impatient!! The same as you I'm just hoping that I haven't done any long term damage but taking each day as it comes and focussing on making things better and looking forward.

How are you coping with things now?
 
hi nikki,

im getting a lot better with things. i saw a my docs and also my dn and they were really helpful and understanding with what i had done and also why i had done it. they also gave me the stark truth that my eyesight could be lost and it may never return, but also i still suffer from really bad swings in my bg levels. and this is when im doing everything correct to lol. all i can do is like you said be good stay fit and hope for the best.
 
Ye my doctors and DN have been the same and keep assuring me that at 21 I should be able to turn things around although I'm struggling to believe that right now. Finding it hard to get my BM's under control and feeling extremely weak and lifeless. Not myself at all. I'm sorry to hear about your eyesight but it's great that it did get better with control. How long did you not look after yourself for if you don't mind me asking?
 
well i wouldnt take my insulin for months at a time and also i ate all the wrong things and carried on smoking and drinking. basically hit self destruct mode. i was in denial and even when i had insulin it was begrudgingly. i realise now its was totally selfish and wrong but at the time i didnt want to be a diabetic and thought if i ignored it it would go away. i still get down sometimes but now i have a great way to get myself back to feeling ok again. also i carb count so i can have any food i like now and it has helped me.

so how come things are bad for you??
 
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