pain with als

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Ontario caregiver

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We were told their would be no pain with ALS, but my husband has alot of pain from 4 in the afternoon till he settles aroun midnight. He puts his feet up and then his back is in severe pain.

Has anyone went on liquid morphine as explained to us it will get into his system faster so he will get relief faster. His concern is giving in to ALS, he feels it will make him tired and doped up more, so if you are it how did you find it.

On the sadder side the ones that have seen the later stages of ALS, is pain part of it, I know he has a lot of anxiety so sleep is hard for him, he also uses a bi-pap but breathe though his mouth alot and you can hear a rattle of plem or excess fluids in his thoat, because of this he needs a drink of water though a straw quite often disrupting all my night sleep, does anyone have this problem, and how do you deal with it. I always wanted to set up a rabbit water bottle some how so he could reach his own water when needed, but so far I do'nt think this is possible as it would leek all over him, but this invention has created alot of laughter with anyone I have discussed this with.

Will watch for answers, Thank's in advance
 

dana

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Hi caregiver,
My dad has liquid morphine that he takes when his breathing is very rapid, due to anxiety, or if he is in pain. (My dad has a trach/vent) The morphine does relax him and take the pain away, but leaves him very doped up and pretty sleepy. I hate seeing him when he is on the morphine because he is so dopey and looks like he is so sick. We have a perscription for the morphine from his doctor. Dad actually tries at all costs to avoid taking the morphine because he does not like the way it makes him feel, but if he is not able to get his breathing stabilized and/or control his anxiety after doing something that takes a lot out of him, the doctors have told us to give him the morphine. Dad takes the morphine through his feeding tube I think, either that or through a port that he has in his chest.(I'm pretty sure that it is through the feeding tube though) Dad does not seem to really ever be in pain. The only thing that is uncomfortable to him is a strap that he has to wear around his neck to keep his trach in place. Hope this info helps.
Dana
 

Al

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Hi Ontario. Liquid morphine is certainly going to be metabolized faster that pill form. The morphine will certainly make you dopey as they say. Not much you can do about it but have they tried giving him Ativan for the anxiety. It doesn't work as fast as morphine and is not as strong so it might not work but it is worth a try. Is your dad on a drug such as Amytriptilene? A lot of ALS patients use it for drying up secretions. Does his Bipap have a humidifier on it? Possibly you have the humidity setting too high and this is putting excess moisture into his system. I breathe a lot through my mouth with my Bipap and have a lidded hospital type cup with a rigid straw that I can shove under the chin part of my mask for a drink. This helps a lot with the dry's and I don't have to remove the mask for a drink.
Also a lot of the pain can be from the muscles stiffening up. Sometimes the more you do the worse you get. But if you don't move it you lose it. So the big question is how do you know what is best. Trial and error. I could tell you to do something and you might have cramps like the dickens. It might work for me. You have to keep testing yourself to see what works. Hope this helps.
Al.
 
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Ontario caregiver

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als

Thanks for all the replys, My husband is probably about 80% no muscle movement, his hand are almost gone but at present he can manover his wheelchair around the house but is quite weak ands soon will have to be moved manually in his electric wheelchair, so he needs all care all the time, still has his speach so that is good ( except in those moments haha).
Al, he tryed amytripilene last summer because he kepted me up but he had dry mouth so bad that he kept me up even more, he may have to try this again if his fluide in the throat get worse.
You are so right ALS is different to all people, and alot of things are trial and error.
I think this is one of THE scariest diseases because everyone gets it different. As the caregiver somethimes the fear of tomorrow is worse then the ALS patient, but we talk alot about today and tomorrow so we help each other out when we are having a bad day.

I am so upset about the hours CCSA is alotting for ALS survivors, or any disease again it come down to our Government. I am allowed 15 hours a week, how does that truly help the caregiver to stay working, I did find out today that when you need 24/7 care they increase it to approx 53 hours a week, but that again is no help if it is all day all night care. Again my husbands wish is to stay home to the end, the Government loves that because if you went to the hospital for care the cost would overwhelming, so my beef is why not compensate the caregivers, or give suffient hours for the care at home.

I feel much better now, but how can we fight this for quality care for the end.

I do not have alot of time to commuicate but I sure did today.

Anyway good luck to all, and it is SPRING and almost all our snow is melted so bring on the summer
 

hope

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caregiver,

I understand what you are saying about the fear of tomorrow. This disease is horrible. It is truly sad also that not only does the patient and family have to deal with the disease but making sure there is help available. There is not one moment in the day where I am not afraid. You want your loved one to be comfortable at all times and the stress and worry on top of the disease makes it so much harder. I want to take care of my husband always.

Sandy.
 

melokc71

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Als Pain

Hi Ontario caregiver, My dad is 66 years old and has had ALS for many years. I'm sad to say he is declining rapidly. Luckly he has hospice. It really helps my mom. They give him baths and check on him daily. His pain and anxiety is horrible. They have changed his medicines around so much. He started with oxycodone 20mg every 12 hours with Lortab 10 mg every 4 hours as needed for break through pain and Ativan 1mg every 2 hours for anxiety. Gosh with that much medicine you'd think he'd be comfortable, no. BUT, before they increased his pain meds, the hospice nurse visited him and thoroughly asked him "do you want to be comfortable or in pain?" my dad replied, "comfortable." She then asked, "do you know what is happening?", he sad "yes, I'm dying." The doctor then increased his oxycodone to 30mg every 12 hours and up'd his Lortab 10mg to 2 every 4 hours as needed for break through pain. Hospice said let's give this a try and see what happens. Well that didnt really help. Well now we're at the point where they have D/C'd the oxycodone and lortab, and now he is on morphine. He sleeps alot but atleast he is comfortable. His birthday is on monday and he'll be 67. We are gonna have him a great birthday on sunday. Peace be with you, Melisa
 

ptich

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May I ask - where most of this pain comes from ? Is it joint pain ?
 

melokc71

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joint pain

unfortunately, it's probably joint pain, but it could be chronic pain. It's hard to say. My dad hurts all over. This horrible disease effects many people different ways.
 

CindyM

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I read on another thread that a patient had pain from pressure points where her muscles no longer cushioned her bones. Has your Dad lost a lot of weight? Cindy
 

melokc71

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weight loss

Yes, my dad has lost alot of weight. He was never really a large man. Now that his legs have totally atrophied, he looks pretty thin. But with all the pain meds, he is losing even more weight because he doesnt want to eat. My mom is lucky to get something soft like pudding, soup, (he cant eat solid food) down him. If he takes his pain meds on an empty stomach, it makes him nauseated.
 

Al

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Hi there. Has your dad given any thought to a feeding tube or has he refused it?
AL
 

melokc71

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feeding tube

My dad has been living with ALS for so long that he's tired. He doesnt want a feeding tube, and he has signed a DNR. Melisa
 

Al

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I'm sorry to hear that Melisa. It's a difficult decision to make as a patient and is sometimes harder on the family to watch the deterioration. It is a very tiring and depressing disease. While I don't think I would do the same as your dad I respect his decision. I can say that I know how he feels but even though we have similarities, I really don't know what he is feeling. If there is anything we can do or any advice you need just ask.
AL.
 

melokc71

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The only thing I ask is to pray for my dad. Peace be with you, Mel
 

wyALSpt

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Hi,
I take liquid Morphine, and it works great. I a have alot of pain and yes I do have ALS. I hope it works for you
Wy
 
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