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Nerve damage help - follow on

Lunar_Lapin

Lunar_Lapin

Well-Known Member
Messages
53
Location
Leicestershire
Type of diabetes
Type 1
Treatment type
Insulin
So I recently posted about what I had been told was nerve damage in my left leg and following the advice of most on here I went to see my gp. She did some tests and my leg leg was a lot more sensitive (in a painful way) than my right. She then told me that it may or may not be related to my diabetes and that she could prescribe me medication to control the pain... Am I missing something here? I told her I did not want medication and that I wanted to figure out what was causing it so I could resolve this to ensure it doesn't keep getting worse as it is doing. She said she didn't know what was causing it and handed me a prescription. Am I being deluded by saying I feel like I have been completely fobbed off?

http://www.diabetes.co.uk/forum/thr...m-i-being-told-all-is-okay.73730/#post-800732





Edited to add link to previous post.
 
Last edited by a moderator:
You have been fobbed off. You have every right to be referred to someone who can give you a diagnosis. I would be pestering my GP practice for a referral.
 
I agree you need to ask for a referral to a specialist who knows this field. Someone who specialises in diabetes as well as nerve damage and pain management so that they can find the cause, after all how can they give you medication to treat something when they don't know what they are treating?
 
It's OK controlling the pain but you want to know what the cause is and can it be prevented, agree with the above that you should ask for a referral.
 
Every time I try and start pushing for a referral I get made to feel stupid. I asked what had to be done to find out what the problem was and she just gave me a prescription for Amitriptyline and said it might help. I am so angry I'm shaking
 
catherinecherub said:
I did find this.


How do I get a referral to a specialist?

http://www.nhs.uk/chq/pages/1094.aspx?categoryid=68&subcategoryid=153

Is there another Dr. in your surgery that you could see to explain how you are feeling about decisions made about your health?
Click to expand...

Thank you. I don't really know any of the doctors at my gp surgery very well but I can ring up and book with someone different. Don't know what I'll do if they try and tell me to just take medication.
 
Amitriptyline is an anti depressive drug but it does work to enhance painkillers, I would push for a second opinion
Good luck
Jan
 
brottonmoores said:
Amitriptyline is an anti depressive drug but it does work to enhance painkillers, I would push for a second opinion
Good luck
Jan
Click to expand...

Yes she did say that in larger doses it is used as an anti depressant. I think I will go back and ask for a different doctor.
Thank you
 
Lunar_Lapin said:
Yes she did say that in larger doses it is used as an anti depressant. I think I will go back and ask for a different doctor.
Thank you
Click to expand...

I had massive nerve pain when I was first diagnosed, after lowering my BG levels for a prolonged period I no longer have nerve pain. I hated Amitryptline, and Gabapentin was useless (another antidepressant). At the time the only relief I got was using Tramadol hydrochloride. You need to get to the cause though, and a dr who understands the issues.
 
JRW said:
I had massive nerve pain when I was first diagnosed, after lowering my BG levels for a prolonged period I no longer have nerve pain. I hated Amitryptline, and Gabapentin was useless (another antidepressant). At the time the only relief I got was using Tramadol hydrochloride. You need to get to the cause though, and a dr who understands the issues.
Click to expand...

This is one of the things I am confused about though. There was no nerve pain when I was diagnosed, as my hba1c has come down the sensations are getting worse and the area affected has increased in size around 8 times. It seems to be the opposite way round to what should be happening!
 
JRW said:
I had massive nerve pain when I was first diagnosed, after lowering my BG levels for a prolonged period I no longer have nerve pain. I hated Amitryptline, and Gabapentin was useless (another antidepressant). At the time the only relief I got was using Tramadol hydrochloride. You need to get to the cause though, and a dr who understands the issues.
Click to expand...


I had this temporary form of insulin neuritis (neuropathy as a reaction to the reintroduction of insulin) the combination therapy of duloxetine and pregabalin was amazing. I couldn't have got through without it.
 
Lunar_Lapin said:
This is one of the things I am confused about though. There was no nerve pain when I was diagnosed, as my hba1c has come down the sensations are getting worse and the area affected has increased in size around 8 times. It seems to be the opposite way round to what should be happening!
Click to expand...


Lunar believe it or not this is more common than you think. Your body gets used to running with higher sugar levels and so when you bring them down you can develop insulin neuritis. It took me a long time to get the help I needed from a pain specialist, he put me on the combination therapy I mentioned earlier, duloxetine and pregabalin and it was such a relief.

If this is what you have then please rest assured with maintained good control it will go away.
 
Lunar_Lapin said:
Yes she did say that in larger doses it is used as an anti depressant. I think I will go back and ask for a different doctor.
Thank you
Click to expand...

Starting dose for depression with Amitriptyline is 75 mg. I use it for my neuropathy and it is effective. I take 25 mg.

Get your diabetes consultant to refer you to a neurologist. Mine did. GP,s are jack of all trades masters of none !
 
I was told Amitriptyline used to be an anti depressant but is no longer used for that as there are much more effective drugs, it is now only used to treat neuropathy.
 
Lunar_Lapin said:
This is one of the things I am confused about though. There was no nerve pain when I was diagnosed, as my hba1c has come down the sensations are getting worse and the area affected has increased in size around 8 times. It seems to be the opposite way round to what should be happening!
Click to expand...

My BG was >40 MMOL when I was diagnosed, and apparently had been high for a very long time, a couple of years. The explanation my consultant gave as I had no nerve pain prior to diagniosis, was that the pain was down to a massive adjustment in BG in bringing it into control, which affected my nerves. I found it hard to understand as I didn't have the nerve pain when I had diabetes and it was untreated and undiagnosed. The reality is that I had massive nerve pain when I was diagnosed, and made the transition to managing it with insulin.

2.3 years after being diagnosed I don't have any nerve pain. Hope you can get to a similar position.
 
Lunar_Lapin said:
So I recently posted about what I had been told was nerve damage in my left leg and following the advice of most on here I went to see my gp. She did some tests and my leg leg was a lot more sensitive (in a painful way) than my right. She then told me that it may or may not be related to my diabetes and that she could prescribe me medication to control the pain... Am I missing something here? I told her I did not want medication and that I wanted to figure out what was causing it so I could resolve this to ensure it doesn't keep getting worse as it is doing. She said she didn't know what was causing it and handed me a prescription. Am I being deluded by saying I feel like I have been completely fobbed off?

http://www.diabetes.co.uk/forum/thr...m-i-being-told-all-is-okay.73730/#post-800732





Edited to add link to previous post.
Click to expand...
Lunar_Lapin said:
So I recently posted about what I had been told was nerve damage in my left leg and following the advice of most on here I went to see my gp. She did some tests and my leg leg was a lot more sensitive (in a painful way) than my right. She then told me that it may or may not be related to my diabetes and that she could prescribe me medication to control the pain... Am I missing something here? I told her I did not want medication and that I wanted to figure out what was causing it so I could resolve this to ensure it doesn't keep getting worse as it is doing. She said she didn't know what was causing it and handed me a prescription. Am I being deluded by saying I feel like I have been completely fobbed off?

http://www.diabetes.co.uk/forum/thr...m-i-being-told-all-is-okay.73730/#post-800732





Edited to add link to previous post.
Click to expand...
I had severe critical care peripheral nerve damage following kidney failure last year. My gp said it would clear up on its own- but it wasn't improving (even as my bs righted itself) so I demanded referral to a neurologist who was brilliant and gave me lots of exercises to try before going on pain medication. I'm now seeing improvement in the pain without meds so it can be done!
 
JRW said:
My BG was >40 MMOL when I was diagnosed, and apparently had been high for a very long time, a couple of years. The explanation my consultant gave as I had no nerve pain prior to diagniosis, was that the pain was down to a massive adjustment in BG in bringing it into control, which affected my nerves. I found it hard to understand as I didn't have the nerve pain when I had diabetes and it was untreated and undiagnosed. The reality is that I had massive nerve pain when I was diagnosed, and made the transition to managing it with insulin.

2.3 years after being diagnosed I don't have any nerve pain. Hope you can get to a similar position.
Click to expand...


Sounds like the same as mine.
 
Lunar_Lapin said:
Every time I try and start pushing for a referral I get made to feel stupid. I asked what had to be done to find out what the problem was and she just gave me a prescription for Amitriptyline and said it might help. I am so angry I'm shaking
Click to expand...
Hi Lunar,
I would be furious as well your GP is probably under instructions to not refer anyone due to the costs. My Mum was given this information when asking for a referral. GP told her he was not allowed to until he had tried different drugs to treat the symptoms even though he hadn't got a clue what he was treating.

So in your shoes I would sit down and write a very polite, short, practical letter as to why you want a referral. Include quality of life, pain and mental health.
If no joy then go to PALS for help.
Do go through the letter writing first though.
 
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