Nerve damage help - follow on

[RuthW]

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!

Typically nerve damage is bilateral - it occurs on both sides simultaneously. And there shouldn't be any swelling. Swelling is more typical of a clot. I think you shouldn't wait. I think you should go to A&E.

 

[Lunar_Lapin]

Typically nerve damage is bilateral - it occurs on both sides simultaneously. And there shouldn't be any swelling. Swelling is more typical of a clot. I think you shouldn't wait. I think you should go to A&E.

Sorry think I've explained badly - there is now swelling I just meant the size of the area has increased x 8

 

[JRW]

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!

That's what I experienced, I could hardly walk for several months due to the pain in my feet, I had to wear trainers to work in the office. Thankfully it was temporary, and back to normal now.

 

[Moggies12]

Sounds like the same as mine.

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.

Never like to hear of anyone in pain, but relieved to hear others have been through what I'm currently experiencing and have improved! I was getting scared this was my future. I was given Amitriptyline, but it didn't help and I'd terrible side effects, now been on Pregabalin for just a couple of days and have had a fairly decent nights sleep for the first time since all this nerve pain started, so feeling a bit more hopeful. Still don't really understand why this happens to some people and don't like to "just keep taking the tablets", so I understand how annoyed you must be Lunar. I'm lucky that all the medical folks I've been involved with have taken the time to explain (as best they could !)what's going on. As the others have said, push for a better explanation, and don't let them make you feel stupid! Hope things improve soon!

 

[gemma6549]

Never like to hear of anyone in pain, but relieved to hear others have been through what I'm currently experiencing and have improved! I was getting scared this was my future. I was given Amitriptyline, but it didn't help and I'd terrible side effects, now been on Pregabalin for just a couple of days and have had a fairly decent nights sleep for the first time since all this nerve pain started, so feeling a bit more hopeful. Still don't really understand why this happens to some people and don't like to "just keep taking the tablets", so I understand how annoyed you must be Lunar. I'm lucky that all the medical folks I've been involved with have taken the time to explain (as best they could !)what's going on. As the others have said, push for a better explanation, and don't let them make you feel stupid! Hope things improve soon!

Hopefully you will see some good results from the pregabalin, it wasn't strong enough for me on it's own but I know others have been successful with it. Mine was pretty severe as my sugars had been high for 6 years. This meant the pain effected my entire body. I spent 12 months in the house in tears, we took multiple trips to a & e where I was sedated because honestly the pain was so bad I wanted to die! I could only leave the house in a wheelchair and even the bumps in that going over the pavement was too much to take. I would have 3-4 baths during the night to try and distract me, it was honestly the worse time of my life and I can look back now feeling so grateful that I got through it.

Pain is such a terrible thing to live with, I feel for anyone going through it.

 

[Moggies12]

Hopefully you will see some good results from the pregabalin, it wasn't strong enough for me on it's own but I know others have been successful with it. Mine was pretty severe as my sugars had been high for 6 years. This meant the pain effected my entire body. I spent 12 months in the house in tears, we took multiple trips to a & e where I was sedated because honestly the pain was so bad I wanted to die! I could only leave the house in a wheelchair and even the bumps in that going over the pavement was too much to take. I would have 3-4 baths during the night to try and distract me, it was honestly the worse time of my life and I can look back now feeling so grateful that I got through it.

Pain is such a terrible thing to live with, I feel for anyone going through it.

Thanks Gemma! It's early days for me. My pain is primarily in the lower half of my body and a bath is the only thing that makes it feel normal!

 

[Nuthead]

You need to push for a referral. I have nerve problems in my feet and legs and both hands. For over a year it has been put down to diabetes however now, after finally fighting for a referral it is suspected to be a more serious underlying problem. So I am now waiting for an overnight stay in a central London hospital for more extensive tests. Not happy about the possible diagnosis, in fact I'm b****y terrified. At least it gives you a fighting chance to get it sorted

 

[jack412]

I think one leg swelling is bad, both legs not so bad

 

[JRW]

Never like to hear of anyone in pain, but relieved to hear others have been through what I'm currently experiencing and have improved! I was getting scared this was my future. I was given Amitriptyline, but it didn't help and I'd terrible side effects, now been on Pregabalin for just a couple of days and have had a fairly decent nights sleep for the first time since all this nerve pain started, so feeling a bit more hopeful. Still don't really understand why this happens to some people and don't like to "just keep taking the tablets", so I understand how annoyed you must be Lunar. I'm lucky that all the medical folks I've been involved with have taken the time to explain (as best they could !)what's going on. As the others have said, push for a better explanation, and don't let them make you feel stupid! Hope things improve soon!

I feel for you, I was scared at one point I wouldn't be able to work properly again, such was the pain, and the inability to sleep properly. Chronic pain just grinds you down, so glad you found something to help. I'm sure it will get better, my thoughts are with you.

 

[ann34+]

Thanks Gemma! It's early days for me. My pain is primarily in the lower half of my body and a bath is the only thing that makes it feel normal!

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!

I agree with others that you do need further testing to exclude any thing else, but given the time of onset the other explanations are more likely - i do not know why you were not told, as i was, years ago, that the introduction of insulin causes all sorts of new problems which may take as long as you have had undiagnosed high blood glucoses to resolve - this can be years, and, for some things, it was for me. I had severely swollen and heavy legs, i could hardly lift them at all, after i was out of intensive care, and I could hardly see - fortunately these resolved over time, the leg swelling in about 3 months, - then, much later, only when the HbA1c had been normal for a while, severe pain kicked in, not all the time, but it was debilitating, and at the same time there were times of long term sharp pinpricks over the whole body, but worst legs and feet, also feelings as if water was trickling down my legs, all sorts of strange feelings,interspersed with numb areas, as this improved i started getting really sharp almost electric shock sensations in my legs, it could make me jump, - i did not know it at the time, but this is probably good, if you get this, do not panic, as it seemed to show that my nerves were sorting out. Much later, as the hand sensations had started later and lasted longer, i was referred for testing in a lab, but things, at least by that time, were ok. Many many years later i am fine - i hope yours sorts out also - good control, at least for me - was the clue to improvement. If you are not on the pump, get one if you can, i could not, at that time, and that made recovery all the more difficult. Best wishes, Ann

 

[Lunar_Lapin]

I agree with others that you do need further testing to exclude any thing else, but given the time of onset the other explanations are more likely - i do not know why you were not told, as i was, years ago, that the introduction of insulin causes all sorts of new problems which may take as long as you have had undiagnosed high blood glucoses to resolve - this can be years, and, for some things, it was for me. I had severely swollen and heavy legs, i could hardly lift them at all, after i was out of intensive care, and I could hardly see - fortunately these resolved over time, the leg swelling in about 3 months, - then, much later, only when the HbA1c had been normal for a while, severe pain kicked in, not all the time, but it was debilitating, and at the same time there were times of long term sharp pinpricks over the whole body, but worst legs and feet, also feelings as if water was trickling down my legs, all sorts of strange feelings,interspersed with numb areas, as this improved i started getting really sharp almost electric shock sensations in my legs, it could make me jump, - i did not know it at the time, but this is probably good, if you get this, do not panic, as it seemed to show that my nerves were sorting out. Much later, as the hand sensations had started later and lasted longer, i was referred for testing in a lab, but things, at least by that time, were ok. Many many years later i am fine - i hope yours sorts out also - good control, at least for me - was the clue to improvement. If you are not on the pump, get one if you can, i could not, at that time, and that made recovery all the more difficult. Best wishes, Ann

I am glad that your condition improved, and thank you, I have booked another appointment with the head gp at my doctors surgery and will be complaining about the manner of the last doctor as well as pushing for further investigating into the causes of my issues!

 

[Moggies12]

Good for you! Hope it goes well! Keep us posted.