Pain

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Iveson26

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Relationship to Diabetes
Type 1
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. My levels are now always in green so much more controlled, can’t remember the last time they were above 10 they are usually between 5 and 7.

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
I'm sorry you've had such a rough time of it. You have my deepest sympathy. I had a spell of DKA earlier this year and it was horrible. And I wasn't at anything like the levels that you had (ketones 5.9). But they still kept me in for 10 days as there was a whole load of knock on effects, which to be honest are still only settling down now

Sorry I can't be much help on the specifics but I do want to say that 1) DKA can be a big smash to the system and it can take any number of weeks (even months) to get back to feeling normal and 2) for me at least, I didn't think I felt "that bad" at the time of DKA and immediately afterwards but in hindsight I really wasn't in good physical place.

I very much hope that time will continue to help you as it has for me. But also don't be shy from pushing the doctors if you need more attention

Again I don't know if we are in anything like comparable situations (yours sounds much more acute than mine) but for what it's worth, I definitely didn't have enough energy to go round. I had time off work and I suppose I'm hindsight I did shortchange the family too, although as strength comes back that balance came back too

Please don't be too hard on yourself. I'm sure that your family will understand if it takes you longer to get back to normal

You'll have lots of people supporting you on this forum and wishing you well.

BTW your sugar control looks amazing!
 
Welcome to the forum @Iveson26 VeRoy pleased that you have found the forum.

So sorry to read what a rough time you are having. I have not heard of such extreme aches and pains, and I know that I felt a lot better once I got my insulin after DKA. You will take some time to recover from DKA, and there is now half speed when teaching. I did not go back full time for a while, and as a secondary teacher I was able to focus on specific exam classes inItaly. Give yourself time, and also talk to the School.

Your levels are amazing already, and it is important to know that it is impossible to get perfect levels. I tried for a long time and eventually believed others, and relaxed my expectations. Be good to yourself, talk to those around you and tap into the depth of experience on here. Plenty of help and support available from people who ‘get it’.
 
Hi @Iveson26 I agree that maybe reducing your work hours temporarily might help. It would give you a chance to regain your strength and rest. Although I know it might be hard mentally to reduce your hours, you could think of it as benefitting your class longterm too as you’d hopefully be stronger and have more energy.

I can’t comment on your pain except to say that it sounds miserable. Pain is very, very draining. I’m so sorry you’re suffering and I hope the meds help a bit. It would be sensible to get a professional opinion if the pain persists. Not from a GP, from a specialist. Having neuropathy in that area but not elsewhere seems unusual. Perhaps there’s another cause or perhaps it’s unconnected with your diabetes and to do with your spine or whatever. Also, as your pain cleared elsewhere on your body, maybe this too will clear and is only lingering because we use that muscle group so much?


There is something called Proximal Neuropathy, but it’s quite rare:

Proximal diabetic neuropathy - Wikipedia

en.m.wikipedia.org en.m.wikipedia.org

TLDR - request a referral to a specialist and consider reducing your hours at work for now.

Whatever it is, I really hope it improves.
 
Sorry to hear what a difficult time you have had, and the way your misclassification has impacted you.

One other possibility which might be worth considering or exploring is ‘treatment induced’ neuropathic pain (previously called insulin neuritis), where sustained high levels improve fairly rapidly, and can result in temporary nerve pain.

This write-up in the Lancet seems to share some similarities with your case (people aged 35 with 4-5 years diabetes duration)


The majority of people affected seem to have recovered in time.
 
I remember painful feet being one of @Pattidevans definite symptoms of diabetes after her mis-diagnosis of T2 (cos she was always T1, but had difficulty getting the NHS to do the necessary tests) and because she regularly walked miles and miles at the time she then invested in expensive walking boots - I mean I'm not criticising decent walking footwear being expensive cos 'good' footwear is never a waste of money however expensive, as far as I'm concerned. But anyway her feet didn't hurt to begin with and only started to when she was no longer having such high BGs, hence we concluded that the nerves in her tootsies had been damaged unknown to everyone and only hurt once they'd started to recover!

So Yes, absolutely, they sometimes can recover!
 
I have absolutely zero experience of your medical issues so can only offer virtual support with those. It does however sound like you need to give yourself a break both mentally and physically and trying to do a demanding job like teaching while you have all this going off must be a nightmare! Is there any chance your GP would sign you off for a while, at least until you are feeling much stronger?

Take care xx
 
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