Very scared - anyone have any positive nerve pain/neuropathy stories please

[Grins]

Hi

I am really after some positive stories please about how people have reduced their nerve pain. I am 36, Type 1 for 11 years and have recently developed painful peripheral neuropathy in my feet, I also have ulnar nerve compression so my hand goes numb at night (none of this actually confirmed by tests or neurologist, only the diabetic consultant). The symptoms are burning on soles and above feet if I stand for too long, if I walk with closed shoes, or allow to get overly warm. The feet are worse in the day. I also have what feels like spiders crawling up my legs. No numbness anywhere.

As I am only 36 with young children I am very very scared about what lies ahead. I have spent hours on the internet and can only find stories with very poor outlooks. I just wondered if anyone has had this and the nerve pain has improved for them. I know some people have had this on diagnosis and it has got better as their levels improved, but my Hba1c is 5.4% although I do have spikes and I am trying to prevent those as much as I can to try and improve the nerve pain.

My consultant said it is probably temporary and put me on Amitriptyline in April but it has recently got bad again even while I am on this. I am also trying Alpha Lipoic Acid and Oil of Evening Primrose.

I am very down about this and my children need their Mum back, so I would be so grateful for any encouraging words. Thank you.

 

[Diamattic]

Just to play devils advocate here - With your A1c being 5.4% (assuming it has always been that low) what if its not diabetes related? If i was in this situation i would be seeing a doctor for x-rays, or MRIs or whatever other tests need to confirm the cause instead of just assuming.

 

[Grins]

Thank you to you both for taking the time to read this and reply.

I am sorry @Dibbles1 to hear about your spinal injuries. I will try those remedies as I was taking the A version of Alpha Lipoic Acid. I've not heard of vitamin e 200 iu so that could be something to try. It is very encouraging that your neuropathy symptoms have improved with better sugar levels. Not heard of the arachnoiditis, I had a spinal injection 5 years ago (c-section) but didn't have symptoms till this year. The spider crawling is only v mild, it is the burning that bothers me the most.

@Diamattic - my A1c has always been under 6.4% more recently under 6% so it could be the slight improvement that is causing my nerves to go a bit crazy (as I have read this can happen, and one can hope )

I have had blood tests for all the usual Vitamin B/D, thyroid reasons but they all came back normal.

I have given up gluten in the last 2 weeks just to try something! Had some tummy issues which feel better but the nerve pain is not going, although I would assume this would take a while anyway if gluten was the cause.

I will push for X-rays and MRIs and generally make a nuisance of myself I have only had upper back trouble when I've been really tense and going through a stressful situation, and saw an osteopath. The osteopath fixed the back pain I just hope he hasn't caused another issue!

Has anyone else had nerve pain that has improved over time?

Thank you.

 

[jack412]

with BG in the 5's, I'd be asking "just supposing it wasn't diabetes, what else it could be"

 

[LucySW]

Dear Grins,

First, you poor thing, and totally, totally understand your fears.

Next thing, it does sound a bit odd, this being diabetes-related with such a stellar A1c. So get those tests.

Sometimes apparently tho this happens with v low A1cs - horrible luck. Dr Bernstein the very low-carber talks about this. BUT on the good side he maintsins that complications can certainly be reversed if BS is kept to what he calls normal levels. For him that's 4.8 pre and 5.6 post-prandially.

Obviously going low as a T 1 is difficult and dangers of going lower have to be taken into account and avoided. Don't know if the Dr B regime appeals to you: it's spartan. But it's one option. Have a look at his sites online - you can read the important bits online or e-book inexpensive.

Might some version of that be a possibility for you. Also, from what I've read, doesn't nerve pain get worse as nerves heal? Could that be going on here?

One of most important things is getting your consultant to take you and your worries seriously and work out a plan. Good luck! Could be any if us ..

 

[LucySW]

How are you doing Grins?

 

[Grins]

THanks for asking Lucy, I have actually made a promise to myself to stop googling for positive outcomes as I keep reading awful stories. I have an appointment with the Diabetic consultant next week but there is a long wait for the neurologist :-(

In the meantime I am trying to keep to very low carbs to avoid the highs and lows. I am very sensitive though, woke on 4.6 had a cup of coffee and now I am 7.6, so I have no idea how I am going to keep to 5.6 post meals!

Thanks, hope you are well

 

[LucySW]

On going up in the morning, many people find they have to eat something protein-based immediately on getting up, before breakfast, or their BG just goes up and up. It's because our livers are mobilising energy for us. Then they have breakfast a but later when they're ready. Some people were saying this just yesterday, I'll find the thread for you.

 

[LucySW]

I can't find it, but I know @noblehead commented, so hoping he'll come along. This whole thread is about that: http://www.diabetes.co.uk/forum/threads/pesky-dawn-phenomenon.57672/

Anyway, I eat four Brazil nuts first thing with a cup of tea. Then breakfast when poss.

 

[Grins]

That's really interesting! thanks for that, I am often unexpectedly high when I get to work (without breakfast), I just thought this was me over treating a hypo on waking (even though I don't take much sugar) and/or milky coffee before I leave the house.

I thought the liver dump happened earlier than this, and as I often wake with very low sugars I assumed it just didn't happen with me.

 

[Juicyj]

Hey Grins,

Please don't use 'Google' !! It's a minefield and it's so loose with information - diabetes isn't a one size fit's all and in your case it's a good idea to keep on top of your doctor and as said before, make a nuisance of yourself - it's easy to measure your diabetes in the state you are currently in rather than your achievements over time, which is a great HbA1c (which i'd cut my own right arm off for at the moment). Try and focus on how well you have done ?

I am also a mum and I got down for a while last year - diabetes related, it's not good for either you or your kids, they need a positive mummy, so try and divert your attention from focussing on your worries to try and think about something positive like them or what they are doing at school instead ?

Come on here to download your worries as your certainly not alone and remember it can and will get better x

 

[Grins]

Thank you @Juicyj have tears in my eyes now! Such a nice message thank you.

I think with the nerve thing I can only focus on the cases where it gets a lot lot worse, especially when I am feeling the symptoms on a daily basis. My HbA1C has always been low but it doesn't show the swings between lows and highs which I have always had. So I need to work on improving this.

There seems to be some cases on here where people have reversed nerve pain or at least improved the symptoms without meds so I just need to focus on that and focus on Christmas with the children too.

Thank goodness school is over today though, I am one "Parent Mail" away from a breakdown!!

Thank you x

 

[robert72]

On going up in the morning, many people find they have to eat something protein-based immediately on getting up, before breakfast, or their BG just goes up and up. It's because our livers are mobilising energy for us. Then they have breakfast a but later when they're ready. Some people were saying this just yesterday, I'll find the thread for you.

Yes, I get this 'waking rise' - happens when I get out of bed (obviously I should stay in bed ). I have to take 2 or 3 units of Novo to counteract it, otherwise my BG will rise into the teens.

 

[Juicyj]

Thank you @Juicyj have tears in my eyes now! Such a nice message thank you.

I think with the nerve thing I can only focus on the cases where it gets a lot lot worse, especially when I am feeling the symptoms on a daily basis. My HbA1C has always been low but it doesn't show the swings between lows and highs which I have always had. So I need to work on improving this.

There seems to be some cases on here where people have reversed nerve pain or at least improved the symptoms without meds so I just need to focus on that and focus on Christmas with the children too.

Thank goodness school is over today though, I am one "Parent Mail" away from a breakdown!!

Thank you x

Ah big virtual hug Grins, I don't think all the buzz/excitement and last week of school helps much either, it's all chaos here !!

Couple of tips with this - have you thought about meditation ? You can get a mindfulness one from youtube - just do a search and find 10 mins and a quiet area to listen to it, really good way of just relaxing and bringing it all into perspective. In regards to the swings - have your tried low carb and taking insulin 20 minutes before meal time ? Also exercise, do you get much ? I try a 10 min run after the school run in the morning now, I am no athlete but find this helps me start the day positively.

Try to enjoy your Christmas and focus on positives - message me for any support, your certainly not alone x

 

[Grins]

Not tried meditation because I am deaf so I am not sure how I would be able to listen to the video, especially if eyes have to be shut etc! But there must be something I can do with subtitles.

Going to try low carb but I have to eat vegetarian stuff in the office (long story!!) so this is going to be a challenge! Any low carb breakfast and lunch suggestions would be welcome!

I work full time and have the kids whenever I am not at work so I don't exercise anywhere near as much as I like. Have started going for a 20 min walk at lunch break though to at least get moving! Also my feet hurt with trainers on sometimes but will try and exercise more when they aren't hurting, a swim would probably be good.

Thanks again

 

[Juicyj]

Ok with meditation here's a simple exercise for you - try closing your eyes and focus on your breathing, so just breathe in and out but focus on the breath leaving the body and the breath as it enters your lungs, and how the breath feels. Try this for a couple of minutes then each time you breathe out focus on breathing out whatever is troubling you at the time - so on each 'out' breath focus on expelling your worries, just use one sentence and let it be your mantra as you breathe out. Then try and focus on your body and from your toes upwards try to tune into each part of your body sensing how it feels as you move your focus upwards to your head - don't worry if your mind wanders a little but try to get back into if you can - takes a bit of practice but get's easier the more you try. It will certainly relax you and help your deal with your worries better.

Low carb breakfast - if you can eat meat and dairy, try bacon and eggs, or an omelette with cheese an courgettes. For lunch take a home made soup but without bread or salads - here's some ideas: http://www.bbcgoodfood.com/recipes/collection/low-carbohydrate-recipes

Eating protein for breakfast will ensure you don't get the high's - however you will find that you need to take some insulin as your body converts this protein to glucose (body being quite clever at getting energy!) so this is a bit trial and error - but also means you stay full for longer also.

Swimming is great, so if you can this will be good for you too

 

[LucySW]

Going to try low carb but I have to eat vegetarian stuff in the office (long story!!) so this is going to be a challenge! Any low carb breakfast and lunch suggestions would be welcome!

A whole thread on detailed lo carb suggestions entitled What Did You Eat Today? here: http://www.diabetes.co.uk/forum/threads/what-have-you-eaten-today.36803/

Veggies are great for you, and are lo-carb! You need some protein too of course, but overboard carnivorousness is not mandatory.

If you're thinking of low-carbing, I found Jenny Ruhl's nutritional calculator very useful. It gives you a framework and helped me a lot:

http://www.phlaunt.com/diabetes/33614154.php

She is reliable. She wrote a really well-researched book on LCHF eating which is critical and objective.

Do what you need to do, love, but remember to try to fix the details one step at a time and then STOP and get on with life, and tackle it again a week later, or whatever your appointed time is. But first, decide what you want your diabetes people to do for you next week, and make sure you get that across to them. They will want to help.

Hugs from here,

Lucy

 

[LucySW]

I thought the liver dump happened earlier than this, and as I often wake with very low sugars I assumed it just didn't happen with me.

It seems it can start when you get up too. Does for me - I have to have something, or up it will go.

 

[LucySW]

Here's the thread I was talking about Grins: http://www.diabetes.co.uk/forum/threads/rise-in-blood-sugars-after-waking.69166/

Lucy