Amyotrophy

[Plastirion]

I have just discovered (after seeing a partner of my usual GP) that I have been suffering from diabetic amyotrophy as well as diabetic neuropathy for the past two years. I have also just discovered a web site for other sufferers and what a revelation. I haven't been able to understand why I have suffered so much pain which started before I was diagnosed as type 2 in January 2009 and six months later was put on insulin.
I wonder if there are any people on this web site with the same condition who feel desparately ill and alone as it is not widely known and is not caused by neglect, as I was first told.
Best wishes for Christmas and the New Year to you all
Joan

 

[Northerner]

I hadn't heard of it before Joan, are you now getting treatment for it? Do you have a link to the site you mention?

 

[Robster65]

Hi Joan.

Not heard of it but looked it up and it says it is now termed Proximal Diabetic Neuropathy. Assuming this is what you have, there's a wikipedia article about it here....

http://en.wikipedia.org/wiki/Diabetic_amyotrophy

It sounds quite optimistic in its long term treatment which I hope is of some comfort, even though it must be terrible to live with.

Rob

 

[Plastirion]

Found diabetes.ygoy.com helpful. I've been on pregabalin and tramadol for some time and am now also taking amitriptilyne to help me sleep. Thanks to lots of exercise (I believe - dog walking and the gym has helped enormously) I don't need any walking aids, not even a stick and I'm now feeling good. Apparently 1% of diabetics get this little known disease, the cause of which is not known but it usually occurs mainly in middle aged men (just my luck!).
Best wishes
Joan

 

[Sinco]

diabetic amyotrophy

Joined the site today and found your thread after searching on amyotrophy. I was diagnosed with type 2 diabetes in August 2011 but no one could explain my sudden weight loss unbearable pain in legs and feet etc. mobility rapidly deteriorated until I was unable to walk at all. Doctor unable to diagnose illness but warned my wife that I may not see christmas! In december I was given a massive dose of steroids which I aqm told is something doctors try when they don't know what else to do? - I started to make progress and have been able to reduce my levels of pain killers (currently morphine, amytriptilene, paracetomol). Have been trying excercise but have found that too much has the effect of increasing the pain levels. After 5 months I have still not managed to sleep for more than 2 hours at a time due to being woken up by the pain.

 

[Copepod]

As you've discovered, Sinco, there's not much mention of amyotrophy, as it's pretty rare. What's less rare is the experience that many people find after diagnosis with type 2 diabetes is that other problems start to lessen once blood glucose levels return to nearer normal.

From what you say about reducing painkillers, yet exercise still being limited by pain, you need to discuss exactly what and when to take - either your GP or pharmacist should be able to help. Your combination of strong painkiller morphine with a mild painkiller paracetamol is relatively unusual, but if it works for you, then that's fine. Amitriptyline (usually starting with 10mg at night) is a good extra to other painkillers. As exercise is such an important part of controlling type 2 diabetes, having adequate pain relief so that you can move enough, is vital, so do push your GP or pharmacist for further help / advice. If there's an exercise referral scheme in your area, then getting advice from there would be good. As you mention (in your Newbie thread) you were in Police, it would be worth asking your Benevolent Fund etc in case they can refer you for physiotherapy etc.