pain with als

[Ontario caregiver]

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]

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]

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.

[Ontario caregiver]

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]

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]

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]

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

[melokc71]

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]

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]

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]

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

[melokc71]

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]

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]

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

[wyALSpt]

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

[shreejc]

Hi everybody,
I'm new to this forum...don't know whether I am posting my query at the right place...

My Mom who's been diagnosed in 2003, has now difficulty in even sitting on a chair for long durations...she experiences severe back pain...
She is also almost immobile...hardly able to stand up...I was going through the methods to alleviate pain...isn't there any other way than painkillers, knowing how bad they are for health...I don't want my Mom to be dependent on sedatives/painkillers unless it is absolutely required...
Can anyone help me out?

[liz]

Hi Shreejc -

It might be easier for us to make suggestions if you give us a few details about your mother's situation. If she currently connected with an ALS Center? Does she have access to physical therapy? Is she at home or in a facility?

I imagine this is very trying for both of you. I hope you can find some of the answers you're looking for here.

Liz

[shreejc]

Hi Liz,

My Mom is not connected to any ALS Centre simply becoz we don't have one at the small town where our home is. She is at home, with my father primarily taking care of her...since I am mostly at work.

She does her physical therapy, or rather there is a therapist who comes n excercises her limbs...

-JC

[MtPockets]

Someone told me that some of the pain I feel in the morning is due to the build up of Lactic Acid in the muscles, because I do not move at all in my sleep. I wake up on the same side, back or whatever I go to sleep on so there is no muscle movement during the night. No relief for the pressure points.

I don't know if this is true or not, but I do know the pain in the low back is greatest first thing in the morning and begins to ease off a little as I get out of bed and into my wheelchair.

Since it usually takes about 30 minutes or more for any of my pain meds to start to kick in, I feel the repositioning of the muscles and changing of the pressure points of the weight of my body must have something to do with the whole thing. :confused:

God Bless
Capt AL

[vantec]

I too, have bad pain in my back when I wake up, and I don't move all night from the position that I went to bed in. If I sit in a chair during the day, in about 1/2 hour, my back pain gets worse. The only relief I get is standing up, but I can only stand for about 5 minutes, and I have to sit down again. I sure wish my doctor would give me some pain medication.

Conrad

[Al]

Before I got my power chair I took the gel seat off the manual chair and used it for sitting in the chairs in the house. Just put it on top of the regular cushion and being higher makes it easier to get up as well.
AL.

[patricia1]

Hi guys I am having shoulder pain at night right in the joint it hurts alot but after i get up it goes away. I go for PT and they move my arms and that is very painful I dont think he is helping me. He tells me I have to move my arms in bed but they are so weak I hardly move them. Its a vicious circle I guess. Pat

[MtPockets]

Another great idea from AL. Thanks AL.
God Bless
Capt. AL;-)

[vantec]

Hi Al,

I was using a soft cushion on my chair, but my buttocks still hurt. Yesterday I took a Tempurpedic pillow, and put that on my chair. It helped the pain a lot, but I think I'm going to need a gel seat, to get total relief. I don't know what to do about my back pain, but thanks for the gel seat idea.

Conrad

[liz]

Does anybody apply heat for their back pain or discomfort? I do this for the aches in my hands, arms, and back and it helps a lot. Never consulted a doctor about it though.

Liz

[patricia1]

I go for PT and they put heat on my shoulders and it helps so does ice Pat

[CindyM]

Back when I could excercise I used to get into the hot tub after a workout. I kept going to the gym until the Physical therapist advised me to stop, and by that time the warm water was the thing that helped the most. Makes me wonder if we shouldn't get one, since it seemed to help so much! Cindy

[Al]

I use a small heating pad sometimes. Hot tubs are great but hard to breathe in if you sit up to your neck and have breathing issues. AL.

[CindyM]

Ah! I knew there was a reason nobody mentions them much on this forum. Well, I can quit saving for that expense! Cindy

[ltr]

For some odd reason, whenever I have sat in a hot tub, I am weaker afterward. I also seem to get some nausea. So, I'm one of the very few on earth who hate them! Leslie

[Frizzel]

I also use heat wherever I can. I am a 'hot water bottle' momma. I use them on my low back, feet, legs, shoulder, hand. I also use a homedic massager on my legs. They are almost ALWAYS cold as ice. COuld it be the lack of circulation?
Dr. Al, I also interchange my cushion from my manual chair onto chairs in the house that I have to sit in.
My legs are beginning to atrophy and a new symptom is the 'popping' under the skin especially on my weakest leg. The spasms are getting less and the popping is getting more.
Another new symptom is some foods go down in slow motion. Bread especially gets stuck on the way down my throat. I almost choked on some bread this evening.
My toes are fanning out and my legs are also starting to swell by the evening, especially if I work at the computer too long. I work from home so at least I can move around if I need to.
I too love to come here because it's the only place I know when I say, I have spasms, having difficulty with stamina or dang those muscle cramps, you know what I'm talking about.
Captain! How did your 2:00 appointment with your legs swelling go?

[Frizzel]

Grandpa Al...I know you're not a doctor AND I also have learned many things that I wouldn't have known having come to this site. Thanks to everyone! We'll cheer each other on across the finish line___________

[Al]

Frizzel. Of course you know I'm NOT a doctor I HAVE a good bedside manner. LOL
AL.

[CindyM]

Hey Frizzel. If you can find a way to keep your feet proped up while on the computer it may help with the swelling. Hugs, Cindy

[Frizzel]

I love this forum of people!

No way to put my legs up although....I have started sitting in a recliner with them up a couple times a day.

By the way, I DON'T HAVE A HOT TUB! Who has money for a hot tub!@#!% I sit in a HOT bath TUB of H2O, water?, NOT K9P....H2O! It's mainly for my atrophied, dead weight, limbs that are screaming at me to warm up.

Any one else not do well when they're cold? If there's one thing that stiffens me right up, it's my legs getting cold.

[Al]

There is a couple of other things that stiffen me up but cold is the worst. A cool breeze on a mild day is almost as bad as being out in winter. Hands cramp up bad too. Hard to get gloves or mitts on but a neighbors friend knitted me mitts with no thumbs and they are good to get on with a bit of help.
AL.

[CindyM]

Hey Frizzel. I keep a plasic milk crate (very high tech and VERY attractive but I don't care,) under my desk at work to put up my feet. Cindy

[MtPockets]

Well my doc surprised me by saying NEVER get in your hot tub again? She said the heat causes more blood to pool in my legs increasing the swelling. Go figure. She also put me on diuretics, pressure stockings, and told me to try to keep legs elevated above my heart???
Now how do you do that? Hang upside down from the ceiling? My legs don't move as it is, much less get them as high as my heart. But, then again maybe she thinks my heart is in my backside, ha ha. :-D

I also learned that every time your legs swell they do damage to the small blood vessels that is permanent. So each time I let my legs swell they will get worse. So I have to be real careful to try to watch out for that.

She also did a new emg and ncs which shows the ALS has spread to my upper torso, affecting c2, c3, c4, c5. A little faster than I had expected since I was dx only in May 11, 2006.

God Bless
Capt AL

[John1]

Cold is the #1 trigger for my stiffness/spasticity. My solution this year was to spend 3 months of the winter in Arizona. It worked well. Now that I've arrived home and the thermometer is barely on the plus side of freezing, the stiff legs are back.

[Frizzel]

Cold is the #1 trigger for me as well John. I also try to elevate my legs above my heart. Maybe you've got such a BIG heart Captain you have to hang from the ceiling just to get the ciruculation past it. Take care of yourself.