Unread 08-30-2010, 11:22 AM #1 (permalink)
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Default Increased muscle pain at night

Good day to you'all.
I'm having a lot of muscle pain and tightness in my arms and upper body at night.
It gets some better, or sometimes completely goes away by midday.
I was wondering if it's ALS related and if other PALS had similar experiences. Any suggestions?
God bless,Mary W.
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Unread 08-30-2010, 11:32 AM #2 (permalink)
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Default Re: Increased muscle pain at night

Mary, I hope someone who has experienced this will reply. I will say that my stiffness and strength gets better throughout the morning. I have tendonitis in my shoulders and arms. It doesn't get better during the day, but rather worse with the use I give my arms. Do you have the ALS weakness or is yours more spastic with pain? And, is your onset in your arms?
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Unread 08-30-2010, 01:38 PM #3 (permalink)
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Default Re: Increased muscle pain at night

Hi Ann,
My weakness is in my shoulders and upper arms. For example, I can still type with one hand, but can't lift my arm to comb hair.
Have a lot of stiffness in neck, upper back and chest muscles.
Was given a pain med, but it only makes me sleepy without much help.
God bless, mary
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Unread 08-30-2010, 03:21 PM #4 (permalink)
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Default Re: Increased muscle pain at night

Ohhh. Mary. We're on two ends of the same thing, then. My hands lose all strength. I have pain when I lift my arms. Not frozen shoulder, but tendon pain from no muscle. My arms look very saggy. I have Celebrex to take, but have been off it the last few days. I don't see any change while off it. But in bed, I lie only on my back, and my shoulders and arms don't hurt. I think that pain with ALS comes and goes sort of mysteriously. It certainly did with my legs when they were first losing it--they were my onset area. I had a lot of muscle pain with them. So sorry I can't give you anything in the way of help.

Are you in a hospital bed or another kind which can raise and lower head and foot? That, the alternating air overlay, and the woolfleece mattress pad keep me comfortable. Ladyinn used a sling for her bad arm. You might write her a note and ask what helps her. She began from the shoulders in her loss, and is very practical and helpful.
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Unread 08-30-2010, 08:51 PM #5 (permalink)
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Red face Re: Increased muscle pain at night

Mary, I know exactly what you mean about shoulder pain. I began losing strength in my left arm about two years ago, but at that time I just chalked it up to old age -- I'm 63 now. I noticed that the muscles in my arm were sometimes as hard and as round as a baseball but but they didn't hurt. Then last summer I started noticing that my shoulder pained me, especially at night. I tried massage, Tylenol, rice bags that I heated and around my shoulder. I tried acupuncture, physical therapy, occupational therapy, and none solved the problem for more than a few hours or a few days.

In Septmber, I went to Mayo Clinic and got the DX of ALS. The doctor there explained to me that the reason my shoulder was hurting was that the weight of my arm, which was hanging limply at my side all day, was pulling my arm out of the socket. The muscles that wrapped around from my shoulder blade had atrophied and it was the tendons that were being abused in an effort to hold my arm where it belonged. He suggested that I wear a sling during the day to hold my arm in place and continue to use the hot rice pack when I napped or retired for the night. Once the muscle stopped atrophying the pain went away.

I still use the sling on occasion, but infrequently. I continue to have a good grip in my left hand the only problem is getting the hand lifted to this spot that I went to grip.

Hope this helps give you an idea of what to do to relieve the pain. Please don't hesitate to contact me if I came to be a further assistance. I am losing the use of my right arm at the moment and am facing a new challenge -- not one that I ever expected I would have to face. But there is some good to come out of this illness, I have had the opportunity to meet so many strong, happy, witty And caring people in the forum. They have become like family. Welcome to our family.
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Unread 10-11-2010, 07:11 AM #6 (permalink)
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Default Re: Increased muscle pain at night

Hi.
My husband had some pain in his right shoulder at night especially when he lay on his right side. He now uses two pillows and Ibprufen 20mg at night which seems to have sorted the problem for now.

Thanks for the explamination for the cause of the pain, Ladyinn.

Regards
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Unread 10-11-2010, 10:04 AM #7 (permalink)
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Default Re: Increased muscle pain at night

Woollyback, hello, and welcome to the forum. I'm sorry to hear of your husband's pain in his shoulder, but wanted to suggest he try to sleep on his back, instead of his sides if possible. As these muscles atrophy, the joints have such a hard time.
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Unread 10-11-2010, 10:40 AM #8 (permalink)
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Default Re: Increased muscle pain at night

annie I love you. YOu help everybody
I am getting awful pain in right shoulder and left thigh at night. The devil is deztermined i shall not lie comfortably on either side
SIGh
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Unread 10-11-2010, 10:54 AM #9 (permalink)
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Default Re: Increased muscle pain at night

Dear Iris, I hear you with the pain. I learned to sleep on my back due to first numbness, then burning nerve pain in my hips. It caused my "better leg" to become useless very quickly, and permanently. I stayed on that side too long because it didn't hurt my back (my back is my nemesis which predates ALS by decades), having NO idea the damage I was doing to my leg. My shoulders are going and are in pain during the day. On my back in bed, they do not hurt. Of course, this includes the hospital bed and being able to make the angles just right for me.

And I know for most, including me, learning to never lie on the side is very hard....done only out of necessity.
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Unread 10-11-2010, 01:34 PM #10 (permalink)
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Default Re: Increased muscle pain at night

BUT ONE's mouth hangs open if one sleeps on one's back. How very inelegant!
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Unread 10-11-2010, 01:51 PM #11 (permalink)
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Default Re: Increased muscle pain at night

LOL, Iris, I have a small pillow tucked at the side of my head (in other words, on top of the regular pillow), and l turn toward it, which means my head is neither "hard over" to the side nor straight up. My mouth doesn't yet hang open.

If I find that changes occur and I'm inelegant, I'll get back to you. I promise. And if I have to really raise the head of the bed, maybe I'll have Phil tie my mouth shut with a long scarf... to match the two used as lassos for my feet. My mouth scarf will be pink and tie around my head. Bow on top.
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Unread 10-11-2010, 05:07 PM #12 (permalink)
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Default Re: Increased muscle pain at night

Jim has pain that increases throughout the day - the neuro seems to think it is related to his constant stiffness/spasms. They just added a 2nd antispastic medication (the name escapes me right now) on top of the baclofen. Thing is he got up to the recommended dosage and it made him zombie-like, scary zombie like. We backed down the dosage, Mentall he seems better but stiffness is back up. However, it never really touched the pain. He starts pain management on Friday. Would love to hear what others have to say. With his FTD it is sometimes difficult to manage his symptoms since he is not the best historian and cannot gauge the cause/effect of the treatment or symptoms.
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Unread 10-26-2010, 06:42 PM #13 (permalink)
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Default Re: Increased muscle pain at night

My grandmother is in late stages of ALS and is experiencing terrible shoulder pain in her left arm. Her arms have not been useful in quite sometime but the shoulder pain is new. She is in agony with the pain and I have been looking for answers and suggestions for her. She does not like to take the pain medication because it leaves her feeling "fuzzy" and tired. Ladyinn I am wondering if a sling might help her pain as well? I suspect the same reason the doctor gave you for your pain (atrophy of muscles and weight of her poor dead arm)

Any suggestions that we might try would be much appreciated. My grandmother sleeps on her back in a hospital bed with lots of extra padding. We elevate her head each evening. I hate to see her in pain.

Thank you,
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Unread 10-28-2010, 03:00 PM #14 (permalink)
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Default Re: Increased muscle pain at night

The sling does give me some relief when I am up and about but I haven't found it making much difference while in bed. I do feel better when I have my caregiver help me with range of motion exercises before retiring at night. After the exercises we put a warm/heated rice bag around the shoulder and shoulder blade and I find I drift off to sleep quite comfortably most nights.
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Unread 10-29-2010, 12:22 PM #15 (permalink)
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Default Re: Increased muscle pain at night

My husbands upper body muscles have atrophied so much and we have the same problems as above. Last week I have bought over the counter a tube of "Voltaren" emulgel. He says it helps. I make sure I wear gloves though.
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