Pain

PRFI26

Newbie
Messages
4
Type of diabetes
Type 1
Treatment type
Insulin
Background
Diagnosed T2 2019 - HB 126 worked hard to lose 3.5 stone, great diet and exercise but lowest I got it was 75 before it shot back up to 99.

Fast forward to July 2023 - admitted to hospital with HB of 175 and ketones over 7, 7st weight loss now weighing less than 7 stone DKA and told how remarkable it was I was still functioning - I felt ‘okay’ still living a very normal life! Diagnosed T1

Came out of hospital after a week feeling anxious with my two insulin pens and a libre on my arm - felt rubbish for a couple of weeks then bang! The pains were unbearable, every joint / muscle ached from my neck to my ankles - my chest was awful! I put this down to my periods returning diabetic team kept telling me it was normal it was recovery my body had been through trauma - still early days…

Flew to Greece, spent most the time there miserable - expecting a heart attack at any given moment. Constantly popping pills trying to get rid of the pain. Arrived home and couldn’t eat - very thought of food made me feel sick. Dr prescribed naproxen.

Now, almost 4 weeks on, I have almost lost the weight I regained after hospital - the pains and aches have eased but the top of my back thighs to the back of my knee has the worse stinging sensation - dr has now given me antriptiline (only two days ago) and told me she believes it to be neuropathy I am confused as when my diabetes was uncontrolled and I was ‘dangerously Ill ‘as they kept telling me I felt much better than now. I am trying my very hardest to eat now too.

So main reason for this long post is to ask if there anything I can do or take to help me I am only 35, a primary school teacher and I am really struggling both physically and mentally. I am putting little energy I do have into teaching my lovely class and then have zero energy at home for my own family - I feel nobody understands what I am going through and I just want to feel like me again!! The word neuropathy has only been suggested by GP I’ve had no actual testing
 

urbanracer

Expert
Retired Moderator
Messages
5,187
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Not being able to eat as many chocolate digestives as I used to.
Background
Diagnosed T2 2019 - HB 126 worked hard to lose 3.5 stone, great diet and exercise but lowest I got it was 75 before it shot back up to 99.

Fast forward to July 2023 - admitted to hospital with HB of 175 and ketones over 7, 7st weight loss now weighing less than 7 stone DKA and told how remarkable it was I was still functioning - I felt ‘okay’ still living a very normal life! Diagnosed T1

Came out of hospital after a week feeling anxious with my two insulin pens and a libre on my arm - felt rubbish for a couple of weeks then bang! The pains were unbearable, every joint / muscle ached from my neck to my ankles - my chest was awful! I put this down to my periods returning diabetic team kept telling me it was normal it was recovery my body had been through trauma - still early days…

Flew to Greece, spent most the time there miserable - expecting a heart attack at any given moment. Constantly popping pills trying to get rid of the pain. Arrived home and couldn’t eat - very thought of food made me feel sick. Dr prescribed naproxen.

Now, almost 4 weeks on, I have almost lost the weight I regained after hospital - the pains and aches have eased but the top of my back thighs to the back of my knee has the worse stinging sensation - dr has now given me antriptiline (only two days ago) and told me she believes it to be neuropathy I am confused as when my diabetes was uncontrolled and I was ‘dangerously Ill ‘as they kept telling me I felt much better than now. I am trying my very hardest to eat now too.

So main reason for this long post is to ask if there anything I can do or take to help me I am only 35, a primary school teacher and I am really struggling both physically and mentally. I am putting little energy I do have into teaching my lovely class and then have zero energy at home for my own family - I feel nobody understands what I am going through and I just want to feel like me again!! The word neuropathy has only been suggested by GP I’ve had no actual testing

Hi @PRFI26

First thought is what type of insulins are you taking? Glargine based insulins are known to cause muscle/joint pains in a small number of patients - something like 1 in 10,000 people which doesn't mean much if you're the one, right!

I had something similar when using Lantus and then Abasaglar which are both Glargine based insulins. For me it was mainly arms and shoulders that were most painful but legs also. After some pleading with doctors I was switched to Levemir (Detemir Insulin) and all my pains went away within a couple of days. You might get some resistance from your GP/consultant but it's worth raising the issue.

Please also check the PIL that came with your medication. Your pains may be due to neuropathy but it's worth checking this.

Hope you get it sorted.
Best wishes, Urb'
 

EllieM

Moderator
Staff Member
Messages
9,345
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
forum bugs
Hi @PRFI26 and I'm so sorry you are suffering like this.

To be honest, I would be slightly skeptical about a diagnosis of neuropathy from a GP, I would much prefer a referral to a hospital clinic where they will have much more experience of T1 diabetes and in particular what can happen when recovering from such a high hba1c. Do you have a number you can call for the hospital clinic so that you can describe your symptoms to them?
 

PRFI26

Newbie
Messages
4
Type of diabetes
Type 1
Treatment type
Insulin
Hi @PRFI26

First thought is what type of insulins are you taking? Glargine based insulins are known to cause muscle/joint pains in a small number of patients - something like 1 in 10,000 people which doesn't mean much if you're the one, right!

I had something similar when using Lantus and then Abasaglar which are both Glargine based insulins. For me it was mainly arms and shoulders that were most painful but legs also. After some pleading with doctors I was switched to Levemir (Detemir Insulin) and all my pains went away within a couple of days. You might get some resistance from your GP/consultant but it's worth raising the issue.

Please also check the PIL that came with your medication. Your pains may be due to neuropathy but it's worth checking this.

Hope you get it sorted.
Best wishes, Urb'
Hi, Thankyou for your reply.
I am currently on Fiasp for food intake and 18u of tougeo every morning - I am glad you mentioned this as I have wondered about the tougeo and recently stopped injecting into my thigh but now my tummy instead. I was going to mention it to GP but didn’t, will definitely do now though - Thankyou
 

urbanracer

Expert
Retired Moderator
Messages
5,187
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Not being able to eat as many chocolate digestives as I used to.
Hi, Thankyou for your reply.
I am currently on Fiasp for food intake and 18u of tougeo every morning - I am glad you mentioned this as I have wondered about the tougeo and recently stopped injecting into my thigh but now my tummy instead. I was going to mention it to GP but didn’t, will definitely do now though - Thankyou
hmmm, Tujeo is a Glargine based insulin. This is a link to the PIL

1696150432925.png
 
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beekeeper21

Member
Messages
12
Hi @PRFI26 and I'm so sorry you are suffering like this.

To be honest, I would be slightly skeptical about a diagnosis of neuropathy from a GP, I would much prefer a referral to a hospital clinic where they will have much more experience of T1 diabetes and in particular what can happen when recovering from such a high hba1c. Do you have a number you can call for the hospital clinic so that you can describe your symptoms to them?
Hi. This all strikes a real note with me. After going onto insulin (basaglar) a few months ago, I have been having the most horrific pains in my legs and feet. What are the alternatives to Glargine based in insulin?
 

beekeeper21

Member
Messages
12
Hi @PRFI26

First thought is what type of insulins are you taking? Glargine based insulins are known to cause muscle/joint pains in a small number of patients - something like 1 in 10,000 people which doesn't mean much if you're the one, right!

I had something similar when using Lantus and then Abasaglar which are both Glargine based insulins. For me it was mainly arms and shoulders that were most painful but legs also. After some pleading with doctors I was switched to Levemir (Detemir Insulin) and all my pains went away within a couple of days. You might get some resistance from your GP/consultant but it's worth raising the issue.

Please also check the PIL that came with your medication. Your pains may be due to neuropathy but it's worth checking this.

Hope you get it sorted.
Best wishes, Urb'
Does anyone know if there are any studies, papers, articles on this? I have had very similar issues since starting on Abasaglar a few months ago and what I first thought was the onset of neuropathy has turned into really painful muscle spasms all over my body. At the time I thought 'just my look' I have avoided neuropathy all this time with high BG and now that I'm on insulin I suddenly get it. I'm not thinking it may be a reaction to the insulin but I want to have a slightly stronger case to put to my GP than ''the internet says''. In my experience the specialists are not that willing to action anything that isn't their idea so any help on academic/medical journals or writings on this would be really appreciated. Thanks
 
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beekeeper21

Member
Messages
12
Thanks. Yeah, though it seems to be a listed side effect with most insulins. I'm trying to find a way to persuade my diabetic nurse (or her consultant) to switch me. It seems that Glargine is the cheapest, hence the preference for using it with new patients I guess. I just want to have as much in my aresenal as I can when I have the discussion.
 
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Antje77

Oracle
Retired Moderator
Messages
19,506
Type of diabetes
LADA
Treatment type
Insulin
Thanks. Yeah, though it seems to be a listed side effect with most insulins. I'm trying to find a way to persuade my diabetic nurse (or her consultant) to switch me. It seems that Glargine is the cheapest, hence the preference for using it with new patients I guess. I just want to have as much in my aresenal as I can when I have the discussion.
For what it's worth, I experienced this side effect quite badly, I just never thought it was the Lantus.
I only found out after I switched to Tresiba for unrelated reasons and my aches disappeared.
Once I found out I did report to the Dutch equivalent of Yellow Card.
 
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beekeeper21

Member
Messages
12
That's really interesting. I've been suffering quite badly as well and deep down I'd wondered if it started at the same time as I went onto insulin but never really made the link (until I saw this original post). Now I'm hoping that this is the cause because all other blood test results are not showing anything.
 
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