Leg Pain

Bestfriends14

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Depends on why she has the pain. Typically when the pain is mostly at night in bed, (PALS, please chime in if I'm wrong) it is due to the atrophying leg muscles. For whatever reason, everything seems to pull more at night, meaning ankle joints are pulled, along with knee and hip joints from lying down. I guess it's the immobility of lying horizontal that causes pain, at least that is the case for my hubby.

I know your mum doesn't like the Stryker boots, but if she doesn't start to wear them, she's going to get nerve pain in her ankles, which will just worsen her discomfort.
 

KimT

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Some of mine is due to atrophy but a good portion is due to sensory nerves getting irritated. According to Mayo Clinic, this can happen, especially with slow progression cases. I also have pain from a rotator cuff injury and a contracture of my knee that PT helped but couldn't "fix."

I'm lower dominant so I don't have much spasticity. Cramps were all but eliminated by a combination of Valium and magnesium.
It's interesting because my feet feel like I have peripheral neuropathy but they don't (per nerve conduction study last year). That's when I found out motor neuron diseases can and do affect sensory nerves. Not always but sometimes.

Mine is a complex case because I had sports injuries and a TBI from falling while running. At the time pain in these areas were resolved but now that my muscles are slowly wasting, those injuries are painful. For a long time I thought I had fibromyalgia but Mayo ruled that out as a co-morbidity. Central pain syndrome is a real issue because if you have pain that won't go away, your body re-wires to keep hurting. Early after my diagnoses I hurt my back from repetitive motion and was able to break the pain cycle with Oxy. It only took a small dose but I took it for three months. I was good until my first post-diagnosis fall. I sprained my good ankle and my gait (hopping) threw off my back again. Until the ankle healed (about six months) I used a wheelchair and took Oxy. Eventually I was able to walk with a limp but since that time (2017) I've had pain.
 

em9988

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Depends on why she has the pain. Typically when the pain is mostly at night in bed, (PALS, please chime in if I'm wrong) it is due to the atrophying leg muscles. For whatever reason, everything seems to pull more at night, meaning ankle joints are pulled, along with knee and hip joints from lying down. I guess it's the immobility of lying horizontal that causes pain, at least that is the case for my hubby.

I know your mum doesn't like the Stryker boots, but if she doesn't start to wear them, she's going to get nerve pain in her ankles, which will just worsen her discomfort.
Why does the atrophying mostly bother them at night and not during the day?
Some of mine is due to atrophy but a good portion is due to sensory nerves getting irritated. According to Mayo Clinic, this can happen, especially with slow progression cases. I also have pain from a rotator cuff injury and a contracture of my knee that PT helped but couldn't "fix."

I'm lower dominant so I don't have much spasticity. Cramps were all but eliminated by a combination of Valium and magnesium.
It's interesting because my feet feel like I have peripheral neuropathy but they don't (per nerve conduction study last year). That's when I found out motor neuron diseases can and do affect sensory nerves. Not always but sometimes.

Mine is a complex case because I had sports injuries and a TBI from falling while running. At the time pain in these areas were resolved but now that my muscles are slowly wasting, those injuries are painful. For a long time I thought I had fibromyalgia but Mayo ruled that out as a co-morbidity. Central pain syndrome is a real issue because if you have pain that won't go away, your body re-wires to keep hurting. Early after my diagnoses I hurt my back from repetitive motion and was able to break the pain cycle with Oxy. It only took a small dose but I took it for three months. I was good until my first post-diagnosis fall. I sprained my good ankle and my gait (hopping) threw off my back again. Until the ankle healed (about six months) I used a wheelchair and took Oxy. Eventually I was able to walk with a limp but since that time (2017) I've had pain.
is there anything my mom can take to help this nerve irritation? me and my dad are literally burning our candles from both ends at this rate
 

Bestfriends14

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The outside of the ankle muscles start to atrophy, thus causing the feet to splay outwards, pulling on the knee and hip muscles, as a result. This causes nerve pain and can subsequently cause permanent nerve damage.That's why PALS start to wear the Stryker boots. My husband has little to no spasticity, so massage will not alleviate the pain at night.

My husband refused to wear the Stryker boots for months and finally I put my foot down and insisted. I was no longer going to have my sleep disturbed every hour; I was exhausted and he was exhausred. Using the boots, having a comfortable bed (see Kim T's and my previous post about bed types [other than a hospital bed]), and using CBD for relaxation and sleep, my husband had slept through the night ever since. It has now been 4 months since he woke up throughout the night and we both function much better
 

lgelb

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I agree that the boots and possibly supplemental foam are essential if the feet, legs and hips are not aligned. There is no pain management that can compensate for this. Angling the upper and lower parts of the bed for comfort (usually they should not be at the same angle) may also take some trial and error.
 

KimT

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Gabapentin & Valium help me sleep. I'm not afraid to try various combinations of drugs. I'm fortunate that my pain management doctor is a neurologist.
 

em9988

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its getting worst, she can barely stay asleep for 30 mins at a time now.

if shes awake she can actually stay in the same position and spot for hours and be fine but if she falls asleep for even 30 mins she'll wake up in immense pain all over groaning, she describes it as if there's knives cutting her muscles in her arms and legs.

This period lasts for at least an hour after waking up from falling asleep. we've tried everything in this thread already and my dad and I are mentally and physically at our limits.

It seems entering sleep does something and triggers this pain, does anyone experience this or know why?
 

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I'm so sorry - have you gone back to her neurologist and gone over the issue with them?
It sounds like it is beyond what we can take guesses at since what has worked for others isn't working for you.
Really miserable situation for everyone - I think you need medical help which may involve medications, equipment or physio type consultations. Possibly someone to see the actual home setup. Possibly a sleep study.
 
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