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question for t1d

Dull but constant in top, front of legs to knees which feel they have tight elastic bands around them. Goes into my hips.

Diagnosed as diabetic amyotrophy.

Only thing that helps is actually to keep moving and trying to use legs..


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I ache all over, but that's because I live on the Somerset Levels, so have spent all day sand bagging!
 
I had in one leg first, the it pretty much went away for about a year.. Then it came back horribly in my other leg and hip. I literally fell out of bed and crawled to toilet whilst hubby got ambulance. I told A&E I would rather die than live with amputation I was that much in pain.

Nowadays it constantly aches with a dullness but as if both legs muscles are shrinking and pulling all the time at top of legs. Hurting most if I sit down, and at night.

It is meant to go, but I have really good control for T1 except when my pump causes me ****!! I never had bad control either, been T1 almost 30 years.

I just accept as nothing takes away pain, drugs send me off my head and better trying to manage myself by doing what I can. If it goes.. Great, but in meantime I'd rather have my brain working and knowing I'm alive by feeling the pain than have my brain addled through drugs.

I did think it was statin damage, not totally convinced that it isn't as it only started after I took them, but the official diagnosis was diabetic amyotrophy.


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Wow how do you cope? :/
I've been type 1 since november bit of a struggle most days managing bloods and mental illness.
Social phobia & anxiety there now pushing for. A diagnoses of ocd for blood testing :| icant help it vthough have to know what they are:( haha
 
My control ( on a pump ) remarkably improved after being less ocd on testing. Dont get me wrong, i still test about 10 times a day, but I not write them down and analyse them consistently now.

It natural to be ocd on bgs when so newly diagnosed because it is a strange new way of life really.

It is now recognised that diabetes and depression are linked together. It is part of GP's target levels to check diabetics and depression. Depression not nice though either.

If you look after your diabetes, but don't let it rule your life.. You will be fine. You may well struggle at times and that why it so fantastic to have this forum. It helps with everything, anything and it certainly has helped me.

You're still in early days yet. Dont be too hard on yourself and try to make a point of having laughter everyday at some point....




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Of course you can be anxious... Certainly after being diagnosed so recently. I cried myself to sleep every night for 6 weeks when diagnosed.

Sociabilty... Not everybody wants to be social. When newly diagnosed you can be worried about injecting in public places, making sure you hav ur kit with you, coping at school or at work or just in your home with the fear of high or low levels.

I wish there were more health professionals that were actually diabetic type 1... Then they may well be more aware of the anxiety, depression etc...


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Of course you can be anxious... Certainly after being diagnosed so recently. I cried myself to sleep every night for 6 weeks when diagnosed.

Sociabilty... Not everybody wants to be social. When newly diagnosed you can be worried about injecting in public places, making sure you hav ur kit with you, coping at school or at work or just in your home with the fear of high or low levels.

I wish there were more health professionals that were actually diabetic type 1... Then they may well be more aware of the anxiety, depression etc...


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Sometimes get what they call 'Referred Pain' when injecting, it's weird as you don't feel the pain in the injection site itself but elsewhere, I can inject in the leg and get a sharp pain between the shoulders :confused:
 
noblehead said:
Sometimes get what they call 'Referred Pain' when injecting, it's weird as you don't feel the pain in the injection site itself but elsewhere, I can inject in the leg and get a sharp pain between the shoulders :confused:
Click to expand...

Errrr that's bizarre!


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hale710 said:
Errrr that's bizarre!
Click to expand...


Yeah it is, doesn't happen all the time but occasionally it does, DSN said it's quite common in those who inject, the pain only lasts a split second but it's weird just the same.
 
noblehead said:
Sometimes get what they call 'Referred Pain' when injecting, it's weird as you don't feel the pain in the injection site itself but elsewhere, I can inject in the leg and get a sharp pain between the shoulders :confused:
Click to expand...

Yeah, I've had that before from leg shots (although not often).
 
robert72 said:
Yeah, I've had that before from leg shots (although not often).
Click to expand...

I was using the legs as an example Rob, I've also experienced it when injecting in the arms, stomach and buttocks, pleased I'm not the only one :)
 
Yes I love this site its weird we seem to know more about diabetes then the pros do! While hear has anyone elses dietician slagged them off ? As mine does I got a new 1 last appointment and I already hate her. After being told I could eat what I want by my first dietician as long as I took the right insulin this one tells me she wants start cutting out fat, and chocolate ect yet even when I do eat chocolate I keep tight control of bloods, so what's the problem?? Or am I missing point? Lol I already have problems with my diet because of the diabetes I get phobic of trying things I used to eat and there aware of that but they still feel the need to pile pressure on?
 
I've never seen a dietitian as T1 diabetic for nigh on 30years. So it intrigues me why you are seeing a dietician for more than one appointment, as I thought that you got a dafne course nowadays.

So keading on from that-have you got a normal bmi and weight?


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What's diabetic amotoyphory ?? I get pains in my bones sometimes feels like the flu?
And ... I've fallen deeply into depression At times yet I didn't know diabetes is linked with depression do that's good to know. !
 
Diabetic amyotrophy is severe pain that starts iff normally in the top of one leg and hip. It is severe and the muscle between your knee and hip feels as if it is shrinking all the time. The pain is severe in hip. It does feel as if it is deep in your leg. It can disappear, mine did. But then it really came back with vengeance in my other hip and top leg. Sitting down is horrendous. Your legs feel pain all the time. The only test to determine if it is DA is to have a neurologist wire up the signals in your brain whilst needles are put in to your leg (obviously not numbed) so they can check the berve signals out. The needles are painful too whilst being done and the day after. There isn't anything that helps drugwise, unless you want to have your brain addled.
Not everybody has these symptoms.. They can vary.


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