Old 04-20-2009, 08:29 AM #1 (permalink)
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Question is als painful?

I help care for my mother at times and she cries much complaining that she is in so much pain. She is at the point now where she has no control over any appendage below her neck. She has 40% lung capacity left and has now started experiencing problems swallowing. She will begin taking morphine patches soon to help with the pain. Does anyone know how far along the als ladder she seem to be? She constantly is asking for me/someone to move her arms/legs/hands/feet to different positions every 5-10 minuets. Is this normal? I'm feeling overwhelmed. Thanks for you help/advice/support!
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Old 04-20-2009, 08:54 AM #2 (permalink)
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Teg,
My husband had severe pain - he tried neurontin with some degree of success, but also had to use fentanyl patches along with ativan. Many with ALS do not have pain, but when they do, it seems to be very severe. Jim's doctor told us that only about 20% of her patients experienced pain, but for those that do, it is very difficult to combat. I did take Jim to a pain management specialist, and frequent repositioning helped him too, along with range of motion exercises, massage, heat, etc.
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Old 04-20-2009, 04:53 PM #3 (permalink)
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Mom never really complained about pain till about the last 6 months.. We had to keep reshifting her and moving Mom to different positions..
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Old 04-20-2009, 10:30 PM #4 (permalink)
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I know everyone has different experiences with this awful disease but your Mom sounds a lot like my Mom. She has had ALS for three years now and it has affected her limbs mostly. She can still talk and eat but her breathing is getting involved now (at 50% now). She calls the pain "nerve pain" and she can't stand having anything touching her feet most of the time. She too needs to have her limbs repositioned and her right arm muscle at the top is constantly "bunched". Right now she can't stand anyone moving her arm more than a couple of inches away from her body. We do range of motion for her legs and arms two to three times a day when she feels up to it. She takes demoral for the pain as she's alergic to morphine and codeine. All of her doctors told her there's no pain with ALS also but she says they must be wrong because she get's extreme pain.

We did get a special mattress for her bed that alternates the pressure periodically and she has been able to sleep through the night since she got it. She spends most of her time on the bed now as it's the most comfortable place for her.

I wish you all the luck in the world with your Mom and hope you can find support and answers here, as I have.
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Old 04-20-2009, 10:46 PM #5 (permalink)
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My mother is experiencing severe pain in her legs now.
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Old 04-21-2009, 06:50 AM #6 (permalink)
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Quote:
Originally Posted by kylisa View Post
My mother is experiencing severe pain in her legs now.
If your Mom is unable to bend her own legs as my Mom was.. bend them for her every now and then.. Will help..
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Old 04-23-2009, 07:34 PM #7 (permalink)
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She cannot move her legs much without help. We rub her legs and back. She is taking Lortabs and Neurontin. It is getting worse and she has began to cry at times due tio the pain. I fear it will not be long before she will need a patch of some kind for pain. She has been a real trooper dealing with this disease, until now. Things are going downhill quick.

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Old 04-23-2009, 09:32 PM #8 (permalink)
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I never thought I would reply to this thread.

Today my husband had his head leaning on the wall with a look on his face that was forlorn. I asked if something was wrong. He said he was in pain. My husband has always been impervious to pain. I asked him where his pain was located and he said it's just all over. He wanted to know if other pALS experience pain, as we were told like others that there is no pain with ALS. He has been miserable today.

I know he will object to pain medication.

Unlike you all's pALS, my husband still walks and can pretty much move himself in bed in a limited manner.

I wonder why he's having pain?
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Old 04-23-2009, 11:02 PM #9 (permalink)
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I can only speak from looking at a PLS diagnosis but can tell you, the spasticity is a pain in the neck, a pain in the legs and a pain in the side (hip muscles?).

I guess I'm supposed to call it "discomfort". Yeah, that's better - discomfort (then it is no longer pain...)

Anyway, the "discomfort" can sure make a body uncomfortable (maybe even to the point of possibly experiencing PAIN!).

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Old 04-24-2009, 08:19 AM #10 (permalink)
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Dad said Mom was up at 2:30 this morning with pain in her legs. She was up again at 6 am hurting all over. The ALS doctor has upped her Lortab strength and began Neurontin in the morning and at night. This is not taking care of all of the pain. I fear moriphine is getting nearer. For those who have no pain, be thankful. My mother never was a pill taker. She had a high threshold to pain. This is beating her down!
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Old 04-27-2009, 04:40 PM #11 (permalink)
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I am another one who sure feel's discomfort... Like that one Zaphoon. I have a lot of Discomfort( ok PAIN)... the spasicity and stiffness, and loss of muscle, joint aching, all add to a real yucky day.. Sorry did not mean to complain, but boy does this crap make me feel bad...
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Old 04-28-2009, 07:01 PM #12 (permalink)
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Default pain in ALS

My Mom had a similar situation with pain and discomfort. I think her loss of muscle really put a lot of pressure on her bones. Of course, the nerve die off caused her pain too via cramping. We knew that mom was going lose an ability when her cramping started in a particular limb etc.

She couldn't move around on her own to get comfortable. We used massage to help her a bit. We put small pillows under her hips to relieve tail bone pressure and got her a comfortable motorized chair that elevated her and was movable where she could adjust and try to get comfy. Medicare and supplement paid for it - get it as soon as you can. Unfortunately, unless a sleeping aid was used she would be up every hour at night asking for an adjustment. She just couldn't find relief and she didn't like sleeping aids or anit-depressants all that much. She was mouth breathing and had dry mouth at night. We devised a dropper bottle for her that allowed her to get moist without sitting up to swallow. We also used a anti-snoring spray for her just before bedtime so she would not get so dry.

It will be hard for you - prepare yourself. At they end, my Mom passed on April 6th, she was not wanting to eat too much, she tried the Bi-pap without success and she was getting weaker. On her last night, I noted that her respiration was weak, her breathing was choppy with neck straining movements and sucking from a straw was pretty much gone. Her good hand was gone and she was totally paralyzed. Her heart rate was up and when she asked for water etc. we saw that she could only drink from a small shallow basin but with a choppy motion. Things were happening rather fast and her mood was fuzzy. She didn't have any discoloration like you might think when you don't get enough air but she was fading. I keep thinking to myself that she was too subdued and relaxed. She didn't want to prolong her situation, she had a DNR and other directives, but it never got that far and she died at home in her sleep.

I know it will be hard on you but you must find a way to help the best you can. They have no one else and they worry so much about asking for help. Massage really helped Mom and the touching of human hands is a great comfort I think. Small pillows and foam seemed to be good as well as stretching to help with altering position etc. I used to just think about what I would need if I was paralyzed and this helped me find ways to help Mom. Transfering is hard but a few simple techniques makes it easier. Have her sit on a towel if you need to move her. roll up the end and use like a handle to ease her into a more comfy position in the chair or bed. This is a good alternative to trying to adjust them by pulling them up under the arms. it hurts less.

Dignity is diminished just by having only a few ALS symptoms so we always tried to include Mom is everything. She needed to have distractions and she needed to feel worthy. She hated being dependant on others so we tried our best to help her before she asked. There are so many tricks and techniques to help ALS patients without letting them think they are an inconvenience. Mom always worried about that and we reassured her that she was not. We often reminded her that she a wonderful mother and if we could help her just a little it not even close to what she sacrificed for us when she raised us.

Here is one trick we used. Mom had a hard time swallowing so we made sure her food was tasty and the right type. We tried to sneak in calories where we could and when we found out that it was easier for her to swallow Jello or pudding after chewing and swallowing a mouthful of food (this helps to clear the throat, reduce choking and other sensations) we made sure that at every meal we had jello or pudding available for her in between bites. So, when we fed her we did get a few extra calories in. We also used Whey-to-Go in her juices and smoothies. It is tasty and is "good" calories. Slippery food is best. Nothing dry. Pack on the Hollandaise on steamed and mashed veggies. We said "screw worrying about cholesterol" since we really needed mom to maintain weight.

Do research and if you Google key phrases about end of life signs it may help. If you have the strength do it yourself, if not get some help to make her life a bit easier and maintain your sanity/health too. After their struggle is over, you will need to take some time to get healthier yourself as you will be very tired mentally and physically.

My heart goes out to you. I wish you, your mom, and your family the best and the strength to help your family cope.
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Old 04-30-2009, 03:43 PM #13 (permalink)
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YES......ALS CAN BE PAINFUL....Mom's pain is getting worse by the day! She occassionally yelps in pain. This is gearing up to be the worst part of her experience.
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Old 05-01-2009, 04:16 PM #14 (permalink)
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Yes, I am another one to experience pain...seems to move around my body...My legs and hips were bad, now it feels like someone has ripped through my upper arm muscles, extremely painfull. I was just in hospital with an air mattress[, which did help a lot.

/INDENT]
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Old 05-01-2009, 06:11 PM #15 (permalink)
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most of the time no , only when I fall over
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