Leg Pain at night from not moving?

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MtPockets

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I have been having really bad pain in my legs at night that I think comes from not being able to move in my sleep. I have to wake up and use the trapeze bar to move any at all, since my legs will not move on their own.

In the past few months I have noticed a pain that is not like the nerve pain from my back lumbar disc, I've had that type pain for over 18 years now, so I am familiar with that one.

This is different, pain that is intense, sharp and it feels like it follows the bone of the entire leg. The right leg is worse than the left, but the left is catching up.

This is a new symptom for me and keeps me awake at night even with pain killers. I was wondering if anyone else has experienced this type pain from not being able to move at night or whatever?

My docs did a couple of ultra sounds to rule out blood clots, and they said they saw nothing in the veins or arteries that could be causing the problem?

Probably just another mystery of ALS I guess. What do you think?

God Bless
Capt AL
 

CindyM

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Hi Al. I am sorry you are having htese symptoms. I'm assuming you have tried all the usual - like memory foam pads? Too bad somebody couldn't massage your legs! Cindy
 

Al

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How much Quinine are you taking Al? I think I remember you saying you get it OTC. Here it is prescription 300mg. Maybe you need more.
AL.
 

patricia1

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Maybe come calcium magnisum and Zinc in one Pill It helps with cramps
 

janf

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MY LEGS HURT TOO AL ALMOST FEELS LIKE THE BONE I CAN MOVE MINE. AS YOU KNOW I DID HAVE A LUNG BLOOD CLOT THEY ARE STILL CONCERNED ABOUT MY LEG S SWELLING SEVERELY. I HAD STINGING SENSATIONS IN MY GROIN IT NOW IS GONE AFTER BLOOD THINERS HMMMM MAKES ME WONDER WHAT THAT WAS ABOUT? I TAKE BACLOFEN THEY HAVE INCREASED IT JAN FRANKS MY E-MAIL IS [email protected]
 

MtPockets

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Leg Pain like the bone

I've had sciatica for 18 years due to disc injury, this is different.
I probably need to try going up on the quinine, AL. Just to see if it helps.

I'm also fighting the leg swelling really bad. Wearing the compression stocking all day, and try to keep leg rests on the wheelchair up to help with that. The stockings seem to hold the swelling down, but they are a pain to get on and off. I'm also taking the diuretic the doc gave me to remove the fluids.

The very first time my legs swelled really big, I had a similar pain, but in only one area of the leg bone, not all the way down like now. They ran a couple of ultra sounds at the time and could not see anything. But the tech told me if I had a sharp pain like that again in one spot to come in immediately. I think they were suspecting a blood clot at the time.

Thanks for all the suggestions, I'll try increasing the quinine to see if I can get some relief. I kept waking my wife up all night because it hurt so bad I was crying with the pain, even after taking my pain meds. She rubbed my legs for me, which used to help, but this time just rubbing them seemed to make them hurt more? :confused:

I be confused.:-D

My last visit to the Neuro she said the emg which was 1 year after my DX, May 11, 2006, showed that I have the slow moving type ALS. Thank God for that. It is now up in my arms, neck, and throat. I am losing a lot of my arm strength, but I guess it's good news that it took a year to reach my arms.

God Bless
Capt AL
 

CindyM

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Hey Al- maybe it is time to talk to your Doc? If a big strong guy like you is in tears then something is wrong! Take care of yourself, buddy. Cindy
 

MtPockets

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That's true.

My wife just said the same thing. She is going to call the Neurologist this morning. I guess she needs some sleep for a change.:)

God Bless
Capt AL
 

patricia1

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Have you tried putting a pillow belween you legs while you are on your side It helps take the pressure off the lower back Maybe that would help. I have trouble with my arms not moving and the joints in my shoulder are painful if I move then out to the side. Pat
 

MtPockets

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Thanks for the suggestion Pat. I've been sleeping that way for about 10 years now to help relieve the lower back nerve pain. I think I've tried just about everything?

For the benefit of Christians who might want to share things with one another, I wanted to let you know about the thread titled, "Christians sharing hope with one another".

It seems many are not familiar with this thread. Please feel free to post and share with us.

Thanks again for everyone giving me some more ideas.

God Bless
Capt AL
 

janf

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We Love You Al Hope The Pain Gets Better I'll Pray For You. Let Us Know What He Says. Janf
 

landscape

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Hello Capt Al:

You say "I'm also fighting the leg swelling really bad. Wearing the compression stockings all day, and try to keep leg rests on the wheelchair up to help with that."

In order to get the swelling down efficiently, you need to get your legs higher than your heart. In the wheelchair you are almost certainly not doing that. You are probably sitting with significant flexion at the hip and pressure on the backs of your legs.

If you can still lie flat, try spending time (in a recliner chair that goes right back? in bed during the day time?) with your legs elevated and the rest of your body LOWER than your legs. Gravity rules!

If do you rest in bed during the day time, do you get the same pain?

Please make sure you read this link.
http://www.living-with-als.org/Diane/swelling.html

I realise it has been printed here many times before but it contains lots of info on swelling. Read the last paragraph about diuretics!

And if you do think you might have a blood clot the message is: don't massage your leg!--

Take care.
 

MtPockets

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Good nights sleep! Thank You.......

I increased the quinine and left my compression stockings on at night and the pain is going away. Last night I had the first full nights sleep, with no crying, in weeks. Thank you for your prayers, I definitely needed them and they worked. Praise God.

Thanks Landscape for the info. I am using a motorized lift chair recliner during the day that gets my legs almost even with my heart and straight out, so that helps some also. Thanks for the link. A lot of good information there.

I am having more difficultly typing as my arms are becoming very weak now and my hands shake all the time. Thankfully I can still eat and swallow food and my medicine. It's weird how this disease goes in spurts of progression sometimes. Like my upper arms had started spasms just for a couple of weeks now and already I have lost a lot of arm strength. My legs took much longer for this to happen?

I hope everyone has a great weekend.

God Bless
Capt AL :-D
 

joelc

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Dear Al,

Hope and pray things are getting better.......

Have you tried drinking LOTS of water? I have been able to avoid Quinine so far, even though I have a filled prescription, by taking Ibuprofen and drinking tons of good clean filtered water. A wierd side effect of drinking lots of water has been a decline in my need to get up at night and use the washroom at night.

God Bless!
 
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