does anyone know anything about amyotrophy i am becoming increasingly worried about this and no doctors seem to have a answer for any of my aielments i am 23 years old and my control is good with my diabites but i am becoming increasingly stiffer and stiffer so if anyone has any light on this matter or suffers with it please tell me about your experiences and what i can do to heal myself if this is what i am suffering from i dont know if i am yet as i havent been diagnosed
diabetic amyotrophy
- Thread starter Rnicholls1990
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donnellysdogs
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I have been diagnosed with diabetic amyotrophy.(DA).
Basically, I've had restless legs for pretty much 5 years. Whenever I stop standing and "rest" it kicks off. Then I started getting chronic pain in my right hip and front of my right leg felt like it was pulling and painfully shrinking.
I had also chronic pain points in my back and shoulders, this then end up with being diagnosed as fibromyalgia. If, I sit down or lie down to this day I am chronic at getting up from stiffness- practically rolling myself off the bed to sit up and have coffee or smuggling up to my hubby in evenings the poor man literally has to push me up. This stiffness and painful points is made worse by doing nothing. I have had a mri scan of my lumbar and this showers erosion in certain discs, but it is considered normal for my age (50).
The pain in my right hip and leg disappeared for almost a year-but it was chronic for 2 years, and is just very minimal now.
I put my right hip and leg pain down to statins, as nobody ever could tell me why the pain went to my knee then stopped, and I had been on statins at the time.
My left leg and hip were so painful a few months back that I got out of bed and it was as if it was burning coals in my leg and I literally fell to the bedroom floor. I need the loo, so I tried to get up, but couldn't so I crawled to the toilet. Managed to get my hubby to lift me on it. Tried to get up and walk and again crashed to the floor riddled with pain. Hubby called ambulance. Spent 3 days in hospital where a general consultant diagnosed me with DA and I was on morphine then.
They sent me home with hill billy morphine,that I could not take. The hospital could not directly send me to the pain clinic so I had to see Gp, who then referred me.
I saw the pain clinic consultant a couple of weeks ago. She said she did not think I had DA- but an injury that occurs from running!, (i dont run!!). To establish if I have got DA she has now referred me to have an EMG study done and told me to ask Gp for restless legs tablets.
Amyotrophy does not have to be long term supposedly and can disappear quite quickly or an last a couple years... It apparently does start in one hip and top of leg but can then go to the other leg.
I have always had pretty good bloods which is what really cheeses me off, because it is meant to be linked to bad bg's.
Personally, I think that DA isn't recognised by gp's and consultants. I think so many diabetics are loaded up with statins and get what they think is muscle pain from statins. Where actually it could be DA. But, that is mainly because I blamed statins because I knew nothing about DA at all, I knew of neuropathy. I personally do think I have DA from what I have read and had described to me when I was in hospital, but diagnosis to be confirmed has to have the EMG study done on my legs by a neurologist.
However, I will say that the more I do the better I feel and the leg and hip pain diminishes. However, the pain in my back and shoulders get worse from stiffness !! I'd rather have the stiffness than the excruciating pain in leg and hip. It helps me enormously doing my job which is gardening. 5 years ago I had a sedentary life and that made my pain and brain so much worse.
There is no easy way to get these pains in legs understood, as (I believe) GPS aren't normally diabetic, don't necessarily take statins and will never have felt such pain anywhere like it- even if the have had contractions!! If they can't feel this level of pain, they will never come up with a disease or drugs to give relief from it.
My gps kept saying that they felt I should be treated for my depression and the pain would diminish. I could not get them to understand that the pain was excruciating and causing the depression!, now finally... I have found a Gp that wants to stop the pain and hasn't mentioned anything about antidepressant tabs at all. This pain impacts on all your thoughts because it is so painful and limiting and impacts so much on the quality of your life... That of course it causes you to feel mentally like s**t.
I would certainly go to your Gp, and discuss with your consultant, but be prepared for knock backs, because none of them think of DA.
Sent from the Diabetes Forum App
Basically, I've had restless legs for pretty much 5 years. Whenever I stop standing and "rest" it kicks off. Then I started getting chronic pain in my right hip and front of my right leg felt like it was pulling and painfully shrinking.
I had also chronic pain points in my back and shoulders, this then end up with being diagnosed as fibromyalgia. If, I sit down or lie down to this day I am chronic at getting up from stiffness- practically rolling myself off the bed to sit up and have coffee or smuggling up to my hubby in evenings the poor man literally has to push me up. This stiffness and painful points is made worse by doing nothing. I have had a mri scan of my lumbar and this showers erosion in certain discs, but it is considered normal for my age (50).
The pain in my right hip and leg disappeared for almost a year-but it was chronic for 2 years, and is just very minimal now.
I put my right hip and leg pain down to statins, as nobody ever could tell me why the pain went to my knee then stopped, and I had been on statins at the time.
My left leg and hip were so painful a few months back that I got out of bed and it was as if it was burning coals in my leg and I literally fell to the bedroom floor. I need the loo, so I tried to get up, but couldn't so I crawled to the toilet. Managed to get my hubby to lift me on it. Tried to get up and walk and again crashed to the floor riddled with pain. Hubby called ambulance. Spent 3 days in hospital where a general consultant diagnosed me with DA and I was on morphine then.
They sent me home with hill billy morphine,that I could not take. The hospital could not directly send me to the pain clinic so I had to see Gp, who then referred me.
I saw the pain clinic consultant a couple of weeks ago. She said she did not think I had DA- but an injury that occurs from running!, (i dont run!!). To establish if I have got DA she has now referred me to have an EMG study done and told me to ask Gp for restless legs tablets.
Amyotrophy does not have to be long term supposedly and can disappear quite quickly or an last a couple years... It apparently does start in one hip and top of leg but can then go to the other leg.
I have always had pretty good bloods which is what really cheeses me off, because it is meant to be linked to bad bg's.
Personally, I think that DA isn't recognised by gp's and consultants. I think so many diabetics are loaded up with statins and get what they think is muscle pain from statins. Where actually it could be DA. But, that is mainly because I blamed statins because I knew nothing about DA at all, I knew of neuropathy. I personally do think I have DA from what I have read and had described to me when I was in hospital, but diagnosis to be confirmed has to have the EMG study done on my legs by a neurologist.
However, I will say that the more I do the better I feel and the leg and hip pain diminishes. However, the pain in my back and shoulders get worse from stiffness !! I'd rather have the stiffness than the excruciating pain in leg and hip. It helps me enormously doing my job which is gardening. 5 years ago I had a sedentary life and that made my pain and brain so much worse.
There is no easy way to get these pains in legs understood, as (I believe) GPS aren't normally diabetic, don't necessarily take statins and will never have felt such pain anywhere like it- even if the have had contractions!! If they can't feel this level of pain, they will never come up with a disease or drugs to give relief from it.
My gps kept saying that they felt I should be treated for my depression and the pain would diminish. I could not get them to understand that the pain was excruciating and causing the depression!, now finally... I have found a Gp that wants to stop the pain and hasn't mentioned anything about antidepressant tabs at all. This pain impacts on all your thoughts because it is so painful and limiting and impacts so much on the quality of your life... That of course it causes you to feel mentally like s**t.
I would certainly go to your Gp, and discuss with your consultant, but be prepared for knock backs, because none of them think of DA.
Sent from the Diabetes Forum App
