Hi! So glad to be a part of this :))

[hollyberryo3]

Open to any advice and support with Type 1 Diabetes and painful neuropathy. Thank you!

 

[rebrascora]

Hi and welcome.

Really sorry to hear you are suffering from neuropathy at such a young age. Where is it (feet or hands or somewhere else) and do you have medication to help manage the pain?

How long have you been diagnosed and how do you manage it ie MDI or a pump? Just wondering if this might be temporary neuropathy which sometimes occurs after diagnosis when levels have been high for a while and then start to come down once treatment is commenced and the nerves have a period when they complain at the sudden change and then start to regenerate, both of which can cause discomfort. Hopefully, this is what you are experiencing rather than long term neuropathy as a result of poorly managed diabetes which is generally not reversible.

The more info you can tell us about your specific circumstances, the more appropriate our support and advice can be. Sending (((HUGS))) as it must be worrying to be experiencing pain when you are so young.

 

[hollyberryo3]

Thank you so much for your reply!
The pain is in my feet and lower legs. I’ve only been diagnosed with diabetes for 5 years so I hope it’s temporary neuropathy as you say.
I’ve always struggled to keep my sugar levels stable, my average being 15-18. But the past month I’ve been on top of it, lowering my average to 9!
I’ve join the forum because I’ve always felt so isolated. I’m so grateful for your reply.

 

[rebrascora]

Really pleased you have found the forum as diabetes can be quite isolating and it has been a huge comfort and support to me to be here since my diagnosis 5.5 years ago and I have learned so much from the members here. I was a bit of a late starter with Type 1 at 55yrs old. The knowledge and practical experience here is second to none, so I hope others who live with neuropathy will be able to give you some tips that have helped them.

Great to hear that you have managed to get your levels down such a lot but a little concerning that they were high for so long. It must be really tough managing Type 1 though your late teens though, so I am not in any way judging as I really don't know how I would have coped! It has definitely been much easier (if a bit of a shock) to deal with it later in life. Has the neuropathy just started since you managed to reduce your BG levels? If so, that would suggest it might be temporary.

Which insulin(s) do you use and do you have tech to help you manage your diabetes.... a sensor to monitor your levels should be standard these days.... perhaps Libre or Dexcom?..... and maybe a pump too? If so which one?

Look forward to hearing more from you and I am sure others will be along soon to to say hello and ask questions and offer support.
I hope you don't mind questions? 😉 ..... Diabetes can be surprisingly individual, so the more info we know about how you manage yours the more appropriate our comments will be to your specific circumstances. Obviously you do not have to answer any questions that you are not comfortable about, so don't feel obliged to reveal anything you don't want to.

 

[Satan’s little helper]

Thank you so much for your reply!
The pain is in my feet and lower legs. I’ve only been diagnosed with diabetes for 5 years so I hope it’s temporary neuropathy as you say.
I’ve always struggled to keep my sugar levels stable, my average being 15-18. But the past month I’ve been on top of it, lowering my average to 9!
I’ve join the forum because I’ve always felt so isolated. I’m so grateful for your reply.

Hello, welcome. I’ve been through my teens as T1. Understand the isolation. It’s great you’re bringing your levels inline. Don’t worry about short set backs. We all have them. Is your GP or diabetic team aware of your neuropathy?

 

[stephenS50]

Hello there @hollyberryo3 and welcome to the forum...So sad to read about your problems regarding neuropathy...and all this at your age too.I do hope the pain is short term.

 

[hollyberryo3]

Really pleased you have found the forum as diabetes can be quite isolating and it has been a huge comfort and support to me to be here since my diagnosis 5.5 years ago and I have learned so much from the members here. I was a bit of a late starter with Type 1 at 55yrs old. The knowledge and practical experience here is second to none, so I hope others who live with neuropathy will be able to give you some tips that have helped them.

Great to hear that you have managed to get your levels down such a lot but a little concerning that they were high for so long. It must be really tough managing Type 1 though your late teens though, so I am not in any way judging as I really don't know how I would have coped! It has definitely been much easier (if a bit of a shock) to deal with it later in life. Has the neuropathy just started since you managed to reduce your BG levels? If so, that would suggest it might be temporary.

Which insulin(s) do you use and do you have tech to help you manage your diabetes.... a sensor to monitor your levels should be standard these days.... perhaps Libre or Dexcom?..... and maybe a pump too? If so which one?

Look forward to hearing more from you and I am sure others will be along soon to to say hello and ask questions and offer support.
I hope you don't mind questions? 😉 ..... Diabetes can be surprisingly individual, so the more info we know about how you manage yours the more appropriate our comments will be to your specific circumstances. Obviously you do not have to answer any questions that you are not comfortable about, so don't feel obliged to reveal anything you don't want to.

I totally agree- it’s a massive adjustment at any stage in life. I wish I was more with it when I was first diagnosed, but it’s better now than never.
At the moment I have the Libre Flash 2 and am on Novorapid and Tresiba. I’m not sure if that’s popular?

 

[hollyberryo3]

Hello, welcome. I’ve been through my teens as T1. Understand the isolation. It’s great you’re bringing your levels inline. Don’t worry about short set backs. We all have them. Is your GP or diabetic team aware of your neuropathy?

Thank you so much!
Yes, I’m in touch with my GP at the moment and we are discussing my bloods next week.

 

[rebrascora]

Novo(not so)Rapid as we often call it, is one of the commonest mealtime (bolus) insulins in use I believe and Tresiba is often prescribed alongside it and has it's supporters and it's detractors. It is a very long lived basal insulin, lasting about 36 hours, so each daily dose tops up the previous dose. If you have a fairly routine lifestyle with regular (or no) exercise, this can be a real asset, but if you have a vary variable lifestyle or perhaps female hormones which cause havoc with your BG each month then it can be less than ideal. There are other shorter acting basal insulins which last 12-24 hours which can allow you to adjust your doses to accommodate needing more or less at certain times of the month of before or afer exercise and will give you reasonable results in almost real time, whereas Tresiba takes 3 days for any change in dose to have it's full effect.

Can I ask, are you under a specialist diabetes clinic, with a consultant and highly qualified Diabetes Specialist Nurses (DSNs) for your care or just your GP and perhaps a nurse at your GP practice. The reason I ask is that most GPs have very limited knowledge of Type 1 diabetes management and it is an extremely complicated condition to manage. You therefore should be receiving treatment and support from a specialist clinic, especially if you have been struggling for the first few years with such persistently high levels.

 

[everydayupsanddowns]

Welcome to the forum @hollyberryo3

Glad you have found us!

And well done on the significant reductions you’ve made in your glucose levels. Sorry to hear it has triggered some nerve pain, but hopefully this will only be transient / temporary and may ease as your levels settle into their new averages.

Feel free to fire away with any questions, or just offload where you are facing the frustrations and annoyances of daily glucose juggling. Folks here ‘get it’. 🙂

 

[hollyberryo3]

Novo(not so)Rapid as we often call it, is one of the commonest mealtime (bolus) insulins in use I believe and Tresiba is often prescribed alongside it and has it's supporters and it's detractors. It is a very long lived basal insulin, lasting about 36 hours, so each daily dose tops up the previous dose. If you have a fairly routine lifestyle with regular (or no) exercise, this can be a real asset, but if you have a vary variable lifestyle or perhaps female hormones which cause havoc with your BG each month then it can be less than ideal. There are other shorter acting basal insulins which last 12-24 hours which can allow you to adjust your doses to accommodate needing more or less at certain times of the month of before or afer exercise and will give you reasonable results in almost real time, whereas Tresiba takes 3 days for any change in dose to have it's full effect.

Can I ask, are you under a specialist diabetes clinic, with a consultant and highly qualified Diabetes Specialist Nurses (DSNs) for your care or just your GP and perhaps a nurse at your GP practice. The reason I ask is that most GPs have very limited knowledge of Type 1 diabetes management and it is an extremely complicated condition to manage. You therefore should be receiving treatment and support from a specialist clinic, especially if you have been struggling for the first few years with such persistently high levels.

Wow, I had no idea. That’s really good to know. Thank you for that.

At the moment I just have my GP and nurses so I will definitely look into that.