Leg Pain at night from not moving?

[MtPockets]

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]

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

[ZenArcher]

Could it be sciatica?

http://www.mayoclinic.com/health/sciatica/DS00516

[Al]

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]

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

[janf]

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 jan_franks@yahoo.com

[MtPockets]

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]

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]

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]

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]

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]

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

[landscape]

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]

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]

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!

[AAA]

Capt Al,

Keep the socks on.
My husband had a double PE (Pulminary Embolism) Easter of 06 after he noticed swelling in his left leg.
That would be the last thing you would want to add onto all the other ailments.
Angie in AZ

[MtPockets]

I have been keeping the pressure stockings on every day and increased the quinine to double what I was taking. Now that things have seemed to have leveled out the whole leg bones are not hurting, but I'm still experiencing high levels of pain in the hip and knee joints from lack of movement. Last night I did not get to sleep until 4 am.

I don't understand the hip joint pain or the knee pain as I have never had any trouble with either of these before. Guess it's just another ALS mystery symptom.

Anyhow over all I have been doing better, The pain is bearable and something I can live with. I'm more worried about the loss, of muscle mass in my arms. THe spasms seem to be focusing on my upper body now. Neck, stomach, arms, and sides. While I'm sitting here it feels like a little man is playing the drums on my buttocks. :-D What a weird feeling that is.

God Bless
Capt AL

[Peg B]

Hi Captain Al,

I have no idea if this could be applicable. But hip and knee pain is also associated with siatica. The pain often radiates from the back to hips and knees. Is is possible you could have that or something else and it is not connected to ALS? I am sorry to hear that you are in pain and uncomfortable. You are in my prayers. Sincerely, Peg

[MtPockets]

You may be right Peg. I have had sciatic pain for over 18 years now due to lower back injury. Maybe it has just progressed due to the muscle loss in my legs and is showing up in my joints now. Anyway it's no bigger. Just wondering if others experienced similar symptoms.

Everyone have a great weekend.

God Bless
Capt AL

[Brentt]

Hello Capt.
I have some problems with my lower back that caused severe pains in my legs and lumbar. I have 3 buldging disc's in my lumbar spine. After all the ex-rays and the MRI's the physical therapy and the injections into the disc's I finally was put on methadone. I hated the association with opiates but the pain was so bad I had to try it. I have been on the methadone for about 6 years now and have only needed some increased amounts over the time. I started taking the methadone and all the pains went away. My father is 73 with a horrible looking spine and he has been in pain forever until I told him how well the methadone worked for me. Since he began the methadone, he has been over doing it at his business. Other people I know that suffered from lower back injuries have been put on the methadone, all with positive results. It's worth a try especially with the ALS going on.
Hope to help.
Brentt

[MtPockets]

Thanks everyone for the good ideas. I may have found out what was causing the severe pain in my leg bones. It seems the pressure stockings the doctor had ordered for me were way too small and were cutting the blood off at my thighs. I tried not wearing them for a few days and the pain has almost gone away. I still have the joint pain, but the severe bone leg pain has eased off.

You never know with all that is happening when something a Doctor gives you to help you might wind up hurting you.

God Bless
Capt AL

[CindyM]

:( Sorry you had to find out the hard way what was causing your pain, AL. I hope you are sleeping better now? Cindy

[MtPockets]

I spoke too soon. The leg, knee, and hip pain has returned. I have increased my quinine to try to help. The only answer so far from my GP Doctor is to up my pain meds and try to get a different size pressure stocking.

I will be going to see my Neurologist this week and will request that she put me in the hospital for tests until they find out the cause. The pain is unbearable.

If anyone else has any ideas, please let me know.

God Bless
Capt AL

[CindyM]

Hey Al- did we think about blood clots? My Mom said they were quite painful. I hope they find out soon what is causing this. I hate to think of you in pain. Cindy

[AngelManFL]

Al and/or everyone,

This type of pain is exactly what I have been suffering for the past eighteen months! It is what started me down this entire road.. Deep deep bone pain is the only words I could find to describe to the doctors or that at night it feels like the muscles are tearing away from the bones - not a single pain med for me has helped.. The pain in my legs have eased up considerably though unfortunately that is due to the deadening of the nerves in both my legs. It(the easing of the pain) started in my feet and just slowly eased up my legs. My spine is where I have that exact pain now, from the base of neck and all the way down spine to my tailbone and still in hips and entire pelvis. There has to be some connection somewhere - since initially ALS was not to be associated with pain at all! I've read other post about similar issues of the same exact described pain your exprssing Al, unfortunately I've hadn't time to get them all.. Can anyone help??? :confused:

[MtPockets]

I went to my Neurologist yesterday and she had no idea what was causing the pain either. We are trying different size pressure stockings and treatment for lymphedema to see if these will help. So far three Doctors have all told me to just increase my pain meds and increase the Balcolfen?

If I do not get relief soon I am going to have my GP put me in the hospital and run some tests. They have checked me twice for blood clots as they say the pain is similar, but they have not found any. After hurting for 2 months if they had been blood clots they would have gone to my lungs by now.

Thanks for any suggestions and help.

God Bless
Capt AL

[Rachel]

Hi Al

My mum suffered from terrible leg pain in her last few weeks and, again, no-one knew what caused it. She got relief from a muscle relaxant (diazepam I think) which worked quite quickly if given by injection.

It did tend to make her sleepy, but I guess that would be ok if taken at night.

Might be worth mentioning to your doctor.

Take great care of yourself

Rachel

[MtPockets]

Thought it might be time for an update on the leg pain issue. Here we are several months later and the pain is still there. The various Doctors have tried to change my pain meds to control the pain, and it has helped to some extent. At least now I am getting sleep at night.

It seems the leg pain has changed over time. Here lately I do not wake up screaming and crying with intense pain like before. It's more of a steady pain in the bones still, that feel like if I could just reposition my legs somehow the pain would ease off. It helps some to move the legs to another position, but the pain is still there.

I think part of what is helping is I am now on rather large doses of pain killers.
I take 20 mg of Opana in am and 40 mg at night. This is: Oxymorphone is in a group of drugs called narcotic pain relievers. It is similar to morphine.
I take Lortabs 10mg 3 times a day. I also take Demerol for break through pain as the Doctors call it. At night when then pain is so bad I cannot sleep at all.

I have been on pain medications for over 18 years due to a lower back injury that gave me chronic low back pain for all that time. As a result of long term use of pain killers It has become more difficult for the medications to work. My body has become use to them.

All of my Doctors agree that they just trying to make me more comfortable as there is nothing they can do to treat ALS as it progresses.

I am back to wearing the pressure stockings. I got a larger size so it would not restrict the blood flow so much. It is amazing how much fluid can accumulate in the legs, if I do not wear the stocking. And then after wearing them a few days my legs look like little birds legs.

A word of caution to anyone starting to wear the stockings, just in case your nurse or Doctor does not tell you. Do not sleep in the stockings. Take them off at night to give your legs a break. My nurse never mentioned this until after I had the severe leg pain.

I am currently at a level of pain that I can manage, with all the meds. I just hate the effects they cause. But, if I have a choice to make, between the pain or the meds, I choose the meds any day.

I hope everyone has a great week, and wonderful weekend. Thanks again for all your suggestions. :smile:

[Peg B]

Thank you. It is good info. Kind of you to share, as always. Peg

[trustinggod]

Hi Al,

It's good to read that you are at a better place with the pain you've been experiencing.
I pray for you often and the update really helps me to pray more specifically.

I am so very thankful that Linda didn't have too much pain from ALS. In fact I never read anything, (prior to coming on this forum) and I read everything I could find about ALS, that mentioned pain associated with the disease. Linda had pain in her bottom sometimes when she was in the wheelchair too long and she always had a stiff and sore neck the last year as her neck muscles no longer could support her head completely. Until we devised a way to keep her heels from resting upon the sheets all night she'd get raw spots there but otherwise she was pretty pain free. I had no idea at the time that she was so blessed. I'm sorry you have so much pain. I wish some of us here who do not have ALS could each take a day and carry your burden of pain for you.

I wanted to share something my friend passed along to me last week to help me through some hard times.

F = Fantastic
A = Adventure
I = In
T = Trusting
H = Him

Be well my friend,
Jeanne

[MtPockets]

Thanks so much for your prayers Jeanne and your kind comments Peg.
I really like the:

F = Fantastic
A = Adventure
I = In
T = Trusting
H = Him

I really like that saying and the way you put it. I will print this out and hang it on the wall in front of my computer to remind me why.....

So many many times I have been asked that question "WHY", whether by private message, e-mail, or in person and that just sums up the answer so great. I know it would be hard for a non-Christian to understand the importance I am putting on that word, FAITH.

For I truly believe the bible when it says in:

1 Peter 1:7 "That the trial of your faith, being much more precious than of gold that perisheth, though it be tried with fire, might be found unto praise and honour and glory at the appearing of Jesus Christ:"

Romans 1:16 "For I am not ashamed of the gospel of Christ: for it is the power of God unto salvation to every one that believeth; to the Jew first, and also to the Greek."

Romans 1:17 "For therein is the righteousness of God revealed from faith to faith: as it is written, The just shall live by faith."


I just had to add the scripture, because I do so much feel I am in a battle, trial, fight, whatever you want to call it for my very soul. And not just for mine, but for all those who read my posts. I pray that the seed of faith that has been planted in our lives would grow into a massive tall oak tree. Strong, standing alone against all the forces that might come against us. Yet we still stand, proud, tall, and strong to the very end.

Ephesians 6:13 "Wherefore take unto you the whole armour of God, that ye may be able to withstand in the evil day, and having done all, to stand."

[MtPockets]

I was surprised to find out yesterday that I had to remove myself from Hospice care in order to attend an ALS clinic in Lafayette, La. in the next couple of weeks. Seems there is some sort of conflict with Medicare paying for both services at one time. I can have one or the other, but not both. So I canceled the Hospice service for now.

My wife is upset about going to the ALS Clinic because she is still in denial and feels that if they concur of the Dx I got back on May 11, 2006 for ALS, then she will lose all hope of it being anything else. I have accepted this Dx from the beginning, but she keeps holding out hope for something treatable. I suppose we all would like for that to happen.

Sometimes life is cruel, and definitely not fair, but we have to grow where we are planted. It's hard to put into words sometimes. I just feel my Father in heaven will not put on me more than I am able to bear, and He expects me to share the H O P E
that is within me, for the end of our days.

It is not the end, only the beginning.