Pains

[jim lakin]

Hi all - diagnosed June 2022 - no longer able to walk -i have only just started to have sharp stinging / burning pains in left foot (upper/heel and toes) and right knee - occurring mainly on waking up - pain eases after taking paracetamol - just wondering if anyone else is having same issues ?

[JamesW]

Hi Jim,

I went through a period of time where I was getting sharp, stinging pain in my right thigh, which was generally down to my loss of muscle bulk and pressure being put onto a nerve that caused me the pain. It only happened when I was first went to bed at night and then went off again.

I would get this checked out by your GP, or maybe your MND Nurse 👍

[jim lakin]

Thanks JamesW both Doc and Nurse are only suggesting a different painkiller ?

[Ellie]

jim lakin I'd be more inclined to ask your physiotherapist or OT to rule out positional issues. xx

[KimB]

Jim,

I'm in the minority of MND patients that have painful sensory issues with no other co-morbidity to explain it. I'm lower motor neuron dominant so I don't have spasticity. I was diagnosed in 2015 but my bad pains started in 2018. First it was my knee which irritated me but it really felt mechanical rather than neurological and it still may have been caused by reduced bulk from my nearby muscles. Anyway, it still hurts like crazy every day.

My foot is horrible. Only one of them. It feels like pins and needles and fire ants. It is a burning, horrible pain that radiates up my calf. It's 24/7. The only think that makes it feel better is ice. I'm constantly putting it in a bucket of ice water or using ice packs on it.

My neurologist even tested me to see if I had developed some sore of peripheral neuropathy, not related to motor neuron disease. I went to two podiatrists and tried cortisone injections with no positive results. I wake up three or four times each night and have to ice it. The more I stand on it, the more it burns and hurts. All my doctors are baffled. I have found several other people with ALS who describe this exact type of pain. My nerve conduction studies are normal.

I treat it with Neurontin and take Valium and Remeron to sleep. Even with some CBD oil and THC tinctures, it still burns like mad.

The one thing I'd rule out is uric acid buildup (gout). That can cause issues with joints and feet.

Do you reposition your legs throughout the day and night? Sometimes that can help if it's aching pain rather than pins & needles/burning pain.

I'm so sorry.