IDK what's going on with me, but I'm searching for clues. I was diagnosed with Type 1 a little over a year ago. I was in DKA, bypassing my having type 2. Since then, I have been constantly having hip and lower back pain. I thought the statins were causing it, and although we tried 3 different statins, the pain continued, so i got off them. I've been off statins 2 months now, and this pain just won't go away. I've always been very fit, and have eaten healthily my adult life, so this is quite an issue for me.
Anyhow, all that I've researched about this says, like you mention, that it improves over time with good control. I do have good control, all the medical peeps are impressed (so they say), so.....
I thought to start a query on this forum to see if anyone knows about it. To see if this is the issue, or if it's something else. If it is, what kind of activity is best? I'm pushing myself to stay as active as I can. If I do anything strenuous, such as gardening for a couple of hours, I suffer for it. I can barely move. I was diagnosed with type 1 when I was 60, and I have too much living left to do to be debilitated by this. Yes, I'm frustrated with it. 🙂
PS, reading your diabetes journey attached to your post. Why the switch to Fiasp in Oct 2020?
Hiya, I've replied to this thread with updated information about my experiences with amyotrophy. Here it is again in response to your posting. I think it's really encouraging to know that you can recover from this, and I'm on my way - it's slow but is definitely happening. Good luck to you and please ask me anything about my experiences if it helps.
Heres the thread.
In May I posted about my experience with Diabetic Amyotrophy. At the time there wasn't a lot of info on the site about it - it's quite rare.
I've had the illness now for over a year and thought I'd let you know how I was getting on! It may help someone else, you never know. It's an odd thing indeed and I just wanted to share.
The symptoms are weight loss, muscle wasting, weakness, and extreme pain. It also effected my digestion.
In August I woke with a pain in my hip. It wasn't too bad and I thought I'd pulled a muscle pushing the grandchildren on the swings. Over the following fortnight it got worse and went down my leg to my knee and foot. Classic signs of sciatica which I'd had before - so I went to an osteophath. There wasn't anything that needed manipulation, and I was given a massage and a list of exercises. However, the pain increased over the following weeks and was really bad. I couldn't sleep because of it and was only getting 2/3 hours a night - I spent the rest of the time walking around the house clutching a hot water bottle to my back.
I also noticed that I'd started to lose weight; a couple of pounds a week. The GP still thought I had sciatica and referred me to physiotherapy who eventually sent me for an xray and MRI. The results showed slight disc degeneration and arthritis but didn't account for the amount of pain, weight loss or the fact that I was now beginning to lose muscle in my legs. My quadricepes began to disappear.
I started to limp and found I couldn't lift my leg or bear weight so couldn't climb stairs properly. My knee started to give way and I began to fall over without warning. I felt sick all the time and couldn't eat; sometimes I'd throw up after a few mouthfuls. The pain was now truly awful especially in my knee, and I was reduced to moaning and tears quite often.
I had lost 3 stone in 8 months and the GP was worried about cancer and gave me extensive tests, scans etc. One of these tests turned up a huge level in blood sugar and I had to go to A&E where I spent over a day being diagnosed and treated. I had type 2 diabetes and had probably had it for some time.
The GP was stumped and because of the diabetes, he now suspected neuropathy he didn't know which kind, so referred me to a neurologist who recognised my problem immediately and diagnosed Diabetic Amyotrophy. This is different from other neuropothies and is quite rare. They think it happened to me because I'd had untreated type 2 diabetes, which caused the nerves in my leg to become inflamed. It usually affects the kidneys first, so I guess I was lucky! I was given pegabalin to help with the pain.
It got a bit worse. It started affecting my other leg and I could barely walk. My balance went and I couldn't stand or get up from the toilet. However, the diabetes was under control and I began to stop taking tablets for it and now control it by diet alone. This is the first step in the only treatment there is. I went into - and am still in - a wheelchair. I can walk a bit with 2 sticks but am not safe outdoors with them - too tottery!
The good news for anyone out there who may have it is that a recovery is possible. Isn't that wonderful?! Very very slowly I can feel the strength returning to my legs. I've just managed to reduce my pain meds (pregabalin) and my appetite has returned. I am 5foot 4 inches and weighed 7stone but am beginning to put on weight again thank goodness -- the dietician has given me carte blanche to eat cream, cheese and butter for a while. There's a definite upside! I actually took a walk outside yesterday, through Sainburys car park and didn't fall over, so am hopeful that I can give up the wheelchair before too long.
I do hope this information might help spread the word about Diabetic Amyotrophy, and that if you're really unlucky enough to experience it, you can take hope that a recovery, in part or in whole, is possible. I'll let you know when I'm skipping again.
