great pain?

[hopeful warrior]

Hello, all. My hubs is dealing with so much pain right now. It wakes him up in the night and makes his days so miserable. Our MDA doc acts like it isn't ALS related but doesn't really want to investigate.

It's been almost 5 years since diagnosed. Some of you will remember me from previous active days on the forum. I hope this isn't repetitive, but he has asked me to see if this is, in fact, normal.

Thank you!

 

[jillg]

So does my Dad- I'm watching closly for any suggestions you may get.

 

[joelc]

What I have found is that when muscles atrophy they are not present to hold things together so there is pain. I take morphine to combat the pain. It really helps. The only problem with morphine is it affects breathing, I am on a vent so that is not an issue for me.

 

[Judith]

I have a burning ache and numbness in my upper thigh when sleeping on my side (both sides). It goes away shortly after I turn to the other side. There is a constant turning about every 1-2 hours. I have been trying to sleep on my back, but it is very uncomfortable for me.
My hospice nurse suggested I take a small amount of morphine or methadone. I have no breathing issues.
I would like feedback from anyone who has had this type of pain and what drugs you use.
Is anyone familiar with methadone for pain?

Joel, what type of pain do you use morphine for?

Judy

 

[joelc]

I have pain all over, shoulders, neck, elbows, legs, ankles, back, stomach, etc. etc. Morphine really helps, thankfully.

 

[Phil M]

I have bad neck pain, and I am just about immune to my oxycodone, but really don't want to take anything stronger. If I do, I will just get used to it too, and before I know it I will be immune to all of it! Might be a problem if I have to have any surgery. They only give a normal dose, and don't believe me if I say it still hurts. Thats the problem I had when I got pegged. I had to sneak in some of my own meds on top of what they gave me. They ignored me when I told them that I had a good resistance for pain meds.

 

[amber and bruce]

My husband complains of hurting all over too, he has been given Oxycontin and Soma to help. So far it seems to do the trick but he has had to progressively build up using stronger and stronger narcotics. And, as stated previously, then the doctors and nurses don't believe them when you tell them he has a high tolerance and it becomes an issue in the hospital setting and I too have had to allow him to supplement on top of medications being given in the hospital setting to ease his pain. He does have a primary doctor that listens to him and gives him these meds; he said he would do what he needed to until his final days.

 

[irismarie]

can you be more specific about the pain- where and when? I hurt but cannot say I am in great pain. IF it is in specific places there may be specific causes and therefore relief
So sorry
Poor Greg has had more than his fair share

 

[hopeful warrior]

Thank you all for your posts and input.

Greg's pain is in his shoulders, elbows, knees, ankles and neck. He has had terrific problems with swelling and retaining water. The Dr. previously thought the pain was from the swelling. However, the swelling is not a problem now and the pain still is. I am getting up in the night to help him now. I know the joints set off an arthritis bell, but Dr. says it is not.

My darling will begin hospice this week. I do believe they will have much more freedom with pain management so perhaps we will get it under control. He is on a resperator and breathing is an issue for him. He has decided not to get an invasive vent. Perhaps he will change his mind if the pain becomes more managable.

Again, many thanks. Peace to you all.
Jacque

 

[irismarie]

SO in fact it is JOINT pain apart from teh neck and we all know that is cos our heads are too heavy. I get joint pain in all these places in bed. My ankles cos my feet turn inward and are getting out of a proper position. I think it is cos we are constantly trying to move in ways we can no longer do, the joints just are not in the right alignment. Hope somebody comes up with something. He is starting hospice same time as me. Let us hope they help him over this.
Love to everybody

 

[LizT]

My PALS has pain issues with his shoulder and his hip. my best advise is to make sure his body is always in alignment (going along with what irismarie is saying). While in bed, you could use braces on is feet and then fold a regular bed pillow in half and place that between his feet to help keep them in position. Make sure his hips are straight after transferring him. Same with the shoulders and head. Otherwise, maybe just moving him slightly one way or the other can help aleviate some of the pain.
Also, if ROM is being done, dont push through the pain. Only take it as far as the pain will allow. You can do more damage pushing too far.
i hope this helps some. good luck

 

[Al]

As the muscle dies and shrinks the cushioning effect of them is gone. The tendons and ligaments now take the strain alone. When you lay on your side you could be stretching them in directions they weren't used to. My shoulder used to grind together. It felt like my arm was grinding into the shoulder socket. I don't sleep much on that side much anymore so don't have the pain. That's my theory anyway.

AL.

 

[Judith]

Thanks Al,
Change is never ending with this disease.

 

[abbas child]

I agree totally, Iris and Liz, with the alignment issue. For now! we've figured out ways to keep me in alignment while I'm in bed. I stay on my back. If my hips are slightly "off", the strain is awful. Iris, along with the "heavy head" causing neck pain, for me it's another alignment issue there, too. It's hard to sit with head "up" and aligned with the body. The neck wants to drop forward, and with a head hanging off the neck, there's rebellion.

Al. I don't see how anyone with wasted muscles can stand sleeping on their side. My shoulders are fine in bed (on my back) but are in pain while in my chair. Blah, blah, blah. I'm just repeating what you've already said while whining. Big Smile. Nice that you all "get it". We need muscle. Love you all.

 

[irismarie]

Whining is nice, whining is fun,
SOmething to do in rain or in sun.
If no-one is looking and we want attention
Let's all have a whine and bugger convention!

We all should be brave, we all should keep happy,
but honestly life is sometimes too crappy.
If the carers are slacking or taking a rest
Get whining and whip them back to their best.

Whining is normal, whining is straight,
It's direct from the heart , not really bait
For sympathy, tears or thoughts of "the end"
So whine your heart out and join in the trend