Any advice on pain medication?

[Mojoloco]

My PALS was diagnosed with limb onset als in early 2013. Since last fall she has only been able to lay on her back without moving. Because of this she now has pain in her joints and is in hospice care. First we tried morphine but that didn't cut the pain. Now we are bumping up her methadone to 10 mg 3 times daily. She knows that this summer is her last chance to get out and enjoy life. Has anyone else been in this situation who could help us with advice on pain management?

 

[lgelb]

I think heat, massage and gradual gentle stretching/ROM (working up) is going to do more for that kind of pain than drugs. My husband could not turn or roll for years but it was still productive to do those things, to reduce the pain.

Also, I don't know what kind of bed/mattress/overlay she has, but if there are any refinements to be made, even in how her limbs are cushioned, that might help as well.

Does she still transfer to a wheelchair? The more she stays in bed w/o transferring, the harder it is going to be to get out.

 

[MaxEidswick]

>I think heat, massage and gradual gentle stretching/ROM (working up) is going to do more for that kind of pain than drugs.

Ditto that!

 

[Mojoloco]

She gets phys. therapy and massage therapy once a week. I have been giving ROM for a couple of years. Her overlay and pillows are as good as we can possible. Her shoulders have no muscle tone to hold them in socket so they hurt. She has back pain that limits her time in the PWC. Her nurses and I are unable to help the pain with physical measures. It is past that point. Realistically this is her last summer to get out and we will continue to try pain control with opiates. If anyone has similar experiences I would like to hear what has helped them.
Thank you. mojo

 

[GilWest]

Neurontnin, Dilaudid, Meloxicam are some of the meds that mom has used besides morphine. Hospice is usually very good at comfort care and is willing to try things that GPs are not used to doing.

 

[Mojoloco]

Thanks for responding. Her hospice nurse two days ago increased methadone to 30 mg. per day. She has slept all day today and has trouble putting together words so I will see about cutting back. She doesn't have the willpower to get out in spite of the pain. It is easier for her to stay in her bed, but I know that that's not the best answer.

 

[DreamsEnd]

I'm so sorry for her pain and sorry I don't have any suggestions beyond what's already been offered.

Sherry

 

[lgelb]

Larry wasn't into it, but there is a sling for subluxated shoulders. It is the GivMohr sling. It might help her in the wheelchair. His shoulders were the first to go (flail arm subtype) but he was able to deal using extensive add-on foam/pillow layers in both chair and bed such that his shoulder was essentially reconstituted whenever he sat or lay down.

I'm sure your PT showed you, but there is also one massage in particular for the shoulders (which of course you would never do ROM on), where you gently push the joint back toward the spine.

 

[Mojoloco]

Thanks for the help. It's been a couple of bad days

 

[MaxEidswick]

>It's been a couple of bad days

:-( ... then good ones should be coming ....