Old 01-09-2017, 09:22 PM #1 (permalink)
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Default Terrible back and hip pain from ALS?

Trying to find out if this pain I'm having is from ALS or? Every single night I go to sleep I wake during the night and in the morning with terrible pain in my right hip and lower back. If I try to move, even an inch attempting to turn over it hurts so bad and is nearly impossible, I just give up. (I'm looking a trapezes online) It takes me a few minutes to get out of bed.

The pain started in the right hip...about the size of a baseball. Now it's hurting in my back as well. I would rate the pain about a 6 or 7 on a scale of 1 to 10.

After move around in the morning getting all my spastic stretching over with before sitting up in bed, the pain goes away for the day.

What do you think? Anyone?

Always appreciate your help and advice.

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Old 01-09-2017, 09:42 PM #2 (permalink)
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Default Re: Terrible back and hip pain from ALS?

It sounds like your sleep position is pressing on a nerve. It sounds like possibly your sciatic nerve?

If you have looser joints due to muscle weakness and are not able to adjust yourself in the night, there is greater chance things are being pulled out of alignment. The fact that it goes away with stretching and moving around is positive. I am so sorry you are having to deal with such excruciating pain.
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Old 01-09-2017, 10:42 PM #3 (permalink)
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Default Re: Terrible back and hip pain from ALS?

What is your bed setup? It certainly sounds positional and should be able to be solved.
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Old 01-09-2017, 11:10 PM #4 (permalink)
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Default Re: Terrible back and hip pain from ALS?

Tillie,

I share a queen size sleep number bed with my husband. It is not the type that is adjustable....only the soft/firmness of the mattress is adjustable.

Thank you Shiftkicker....I've been wondering if my pain would be helped by a hospital bed. I don't feel like I'm quite ready for that...but on the other hand, why continue to suffer unnecessarily if the pain is due to ALS.

Do most ALS patients suffer joint pain as well as muscle pain?

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Old 01-10-2017, 01:40 AM #5 (permalink)
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Default Re: Terrible back and hip pain from ALS?

Yes, often, in part because as the muscles holding the joint together weaken, the joint can no longer support the weight/position.

While you get into the hospital bed issue, I would consider a latex overlay so your muscles are more immersed but not "stuck," and can relax more. And short-term, you might try an NSAID dose before bed, a low voltage heating pad, massage/passive stretches before bed.
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Old 01-10-2017, 01:46 AM #6 (permalink)
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Default Re: Terrible back and hip pain from ALS?

Hi Carol
Yes I had exactly this problem with my left hip, I tried overlays and propping with cushions but to be honest it only went away when I got my hospital bed. It takes a bit of adjusting to find the right spot to take the pressure off my hip but the pain is gone and I can actually sleep on my side again with help from my hubby in rolling over.

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Old 01-10-2017, 03:56 AM #7 (permalink)
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Default Re: Terrible back and hip pain from ALS?

Thanks for answering re you bed - I completely agree as it was exactly what I watched with my Chris. Constant pain in joints, for Chris it was his shoulders as that is where the most wastage was at the time.

Please do consider a hospital bed, don't feel that it is something that you shouldn't need yet. Sleeping well and managing pain is one of the big ways of fighting this disease - don't let it rob you of sleep and plague you with pain if you can do something.

Definitely as the muscles waste the joints are not supported well and so extra strain is put on both muscles and tendons. If you have spasticity it seems the pain will usually be even greater as the tension puts even more stress on the joints.
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Old 01-10-2017, 08:38 AM #8 (permalink)
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Default Re: Terrible back and hip pain from ALS?

I've been in pain for a year. It started in my back and now it is pretty much all over. I already had an expensive adjustable bed, good mattress and latex overlay. I sleep on heating pads turned up to medium heat. During the day I sit in my lift chair with heat. I wake up in horrible pain every morning no matter how I adjust the bed. I'm torn between a dolphin mattress and a Pro Bed. I can still walk but the bottoms of my feet hurt horribly. I've tried various combinations of slippers, sneakers, braces, padding. I ordered Australian sheepskin to see if it helps my back. So far, the only thing to break the pain cycle is Oxy in very small doses. I have no idea if a Dolphin mattress will help this pain or if I should try a Pro Bed. The latest part to hurt is my right forearm. It is near the elbow. I have good range of motion in all my limbs but when I make a fist with my right hand, the pain goes up to an 8.

Floating in a warm pool gave me temporary relief but the pain came back. Same with hot tub. I do know being cold makes eveything worse.

I ordered a low voltage heating blanket from Amazon and returned it because the material felt uncomfortable. I'm going to hunt around for an all cotton or plush one in a twin size. I sleep in a Queen bed but only on one side. I've had people flip the mattress and padding but nothing seems to work. I sure hope the hospital bed I end up with addresses some of this pain.

I'm a very small person but I was quite muscular. Now I've gained 30 pounds and my body is not used to this weight, especially since it's losing muscle. Honestly, I wish I had never gained the weight.
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Old 01-10-2017, 08:48 AM #9 (permalink)
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Default Re: Terrible back and hip pain from ALS?

I have this also and you discribe it well.
I do range of motion movements with arms ,legs neck hips when I wake up and it goes away for the day. I don't move in the night, 4 hrs on the right side then up to pee then back in bed for 2 hr on the left. Then I wake with this pain in the a$$ that I work out slowly. I get a massage once a week and get that area worked on . Yes it is sort of sicatica nerve.
Water therapy helps a lot. Good luck, another thing to live with.
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Old 01-10-2017, 10:56 AM #10 (permalink)
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Default Re: Terrible back and hip pain from ALS?

Kim, there is a world of difference between a low voltage blanket and mattress pad. Larry could have never tolerated the blanket. And the material for the pad doesn't matter since it's under the sheet -- can even be under the mattress. Try it! As to your arms/elbows, you need some kind of support at night -- we used latex pieces from our local foam store but you can buy wraparound pieces made from foam, real/faux sheepskin, etc.
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Old 01-10-2017, 02:27 PM #11 (permalink)
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Default Re: Terrible back and hip pain from ALS?

Thank you, Laurie. I'm thinking about getting a new latex topper and the low voltage pad. My topper seems to have pooped out on my lately. I was going to wait until I had the hospital bed but I won't be getting that until after the remodeling is finished.

Thank you for all the great information. You've helped me so much.

On another note, Fred got a CPAP for apnea. He tolerated it for 4 hours but the mask did a number on his nose. He has a long nose but a very narrow bridge. They had it set at the highest setting. Just gave it to him with no instructions. He is 6'4" and thin/muscular. My RT therapist thought the apnea might have caused his heart arrhythmia. He was a runner and now has a pacemaker because his rate was going as low as 30 bpm. I told him this place is beginning to look like a hospital
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Old 01-10-2017, 06:52 PM #12 (permalink)
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Default Re: Terrible back and hip pain from ALS?

The nice thing about a topper and a heated mattress pad is that they will work on the hospital bed as well if the size matches up. You can trim the overlay if it's latex.

Very doubtful Fred's CPAP is on the right setting. He may want to titrate down...also, tell him to use "gentle paper tape" or another Nexmed tape on the bridge of his nose. But you guys could definitely set up shop down there!
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Old 01-10-2017, 08:37 PM #13 (permalink)
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Default Re: Terrible back and hip pain from ALS?

Unfortunately my adjustable bed is a Queen. Hoping I can get at least six more months out of it once the topper and mattress arrives (2 day Amazon delivery.) That'll give me more time to figure out what I need for a hospital bed/mattress as it is probably one of the biggest decisions I'll be making in the way of DME.

Thanks for the suggestion on Fred's CPAP.
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Old 01-11-2017, 08:41 PM #14 (permalink)
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Default Re: Terrible back and hip pain from ALS?

Is a latex topper something I could use on my side of the queen size bed? I guess I should look one up on google and see what they are like.
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Old 01-11-2017, 09:46 PM #15 (permalink)
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Default Re: Terrible back and hip pain from ALS?

You can use it on the whole queen or buy a twin size if you want to use it just for yourself. They are only 2 or 3 inches thick and my deep pocket sheets fit with room to spare. I'm chemically sensitive so it took a long time for me to find one that the odor didn't choke me up. Amazon has a queen one for less than $200. It is very comfortable. I ordered a replacement and a heated mattress pad yesterday. I also have some Australian medical grade sheepskin on order and can use it on my lift chair or bed.
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