Leg Pain at night from not moving?

[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]

the pain

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]

Pain associate with ALS?

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?

 

[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