Diabetic review - can't do anything about the peripheral neuropathy as it is

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AJLang

AJLang

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Relationship to Diabetes
Type 1
I had my telephone review with my diabetic consultant and because my blood pressure, blood glucose and cholesterol are all good and I don't smoke there are no modifiable factors that I can improve to improve/reduce the worsening of the neuropathy unless it becomes painful, pins and needles etc - and then it would be medication but I'm already zogged (is that a word) out on my current dose of amitriptylene that I have for my migraines and back issues.
It appears that it can just happen because of so long with diabetes - but obviously it's not a given if you've had diabetes for a long time.
On the plus side she said that I'm doing fabulously and she understands how hard I have to work to control it with the gastroparesis.
She is also going to put me on the priority list for when they get funding for CGM's - only problem is that it will only be for Dexcom's and I can't use that because of the cocodamol - and my back is in an awful condition if I stop the cocodamol.
She will also be ordering my 50 year diabetes medal.
 
Is it worth a chat with your GP about medication options now you know what the consultant has said. I was a zombie on amitriptyline but do really well with a low dose of gabapentin. Are there other pain killers that will work to do the job the codeine does for your back?
 
Thebearcametoo said:
Is it worth a chat with your GP about medication options now you know what the consultant has said. I was a zombie on amitriptyline but do really well with a low dose of gabapentin. Are there other pain killers that will work to do the job the codeine does for your back?
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Thank you @Thebearcametoo for a great suggestion. My GP refers to the pain clinic and they tried gabepentin for my back but it didn't help at all. The only other option was the amitriptylene - which I also have for my chronic silent migraines. When I tried more than 30mg of that - as my neurologist wrote - it had a sedative effect on me and I was sleeping more than 14 hours a day. But even with the amitriptylene without the cocodamol my back is in constant pain - and even with both of these I can't walk more than a few metres without significant pain. I'm also on ibuprofen four times a day and when I've previously tried stronger NSAIDs I've felt like I'm drunk (with absolutely no alcohol involved) and tramadol levels me either in bed or in the bathroom.
I guess part of it is how my medications interact because including insulin I'm on 16 or 17 different ones (in various amounts) each day.
 
AJLang said:
She is also going to put me on the priority list for when they get funding for CGM's - only problem is that it will only be for Dexcom's and I can't use that because of the cocodamol - and my back is in an awful condition if I stop the cocodamol.
She will also be ordering my 50 year diabetes medal.
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Dexcom changed their sensors when the G6 came out so you can use paracetamol now without a problem.
 
Pumper_Sue said:
Dexcom changed their sensors when the G6 came out so you can use paracetamol now without a problem.
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Sue that is brilliant news. Thank you so much. My consultant didn't know that.
 
Flutterby said:
I am sorry to hear this recent update. You definitely do amazingly well but I know that doesn't help with the neuropathy. You so deserve that medal.x
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Thank you Karen xx
 
What about Pregablin (aka Lyrica), the epilepsy drug that is also prescribed for neuropathic pain? I know someone that takes it without any rubbish side effects like drowsiness.

I agree, you very much deserve that medal! 🙂
 
It’s so hard when you’re juggling different aspects of your health. And pain is so exhausting on top of everything else. It’s great that dexcom doesn’t seem to be a problem now. I hope it’s helpful and the funding comes through quickly.
 
Bloden said:
What about Pregablin (aka Lyrica), the epilepsy drug that is also prescribed for neuropathic pain? I know someone that takes it without any rubbish side effects like drowsiness.

I agree, you very much deserve that medal! 🙂
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Thank you very much Bloden. I will discuss that with my doctors if the neuropathic pain needs managing. I need to stay on the amitriptylene for my chronic silent migraines which affect how I function neurologically.
 
Thebearcametoo said:
It’s so hard when you’re juggling different aspects of your health. And pain is so exhausting on top of everything else. It’s great that dexcom doesn’t seem to be a problem now. I hope it’s helpful and the funding comes through quickly.
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Thank you. My greatest fear is the peripheral neuroapthy will cause more problems with me walking short distances around the house and using my hands - I already have difficulties because of what the neurologist assumes is the silent migraines but have now got that reasonably under control thanks to combination of two medications - it still affects me a lot each week but at least I can still use my hands some of the time to type and craft. I've got to be careful that I don't overthink what could happen and just take each day at a time.
 
Thank you so much @happydog. I’m really sorry that you’re going through such a difficult time at the moment xx
 
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