Question on painkillers

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nebrhahe53

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Joined
Jun 13, 2014
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1,017
Reason
PALS
Diagnosis
06/2014
Country
US
State
Tx
City
Austin
i am at the point where this disease that according to most medical journals is painless is causing me intense pain in my neck shoulders and hands. I do ROM exercises but they don't stop the pain. Can I take opioids, knowing that they slow down breathing, safely? My fvc is about 63 now.
 
You haven't begun to treat pain like that w/o heat pulses and massage. Those would be my next moves. And supporting your shoulders, arms and hands everywhere you go, bed, wheelchair, recliner, with a foam like latex all the way up through the elbow 24x7.

Because the pain is musculoskeletal in your case, normally it's advised to try NSAIDs first, like naproxen, before jumping into opiates. If that fails, because some of it may be neuropathic, a low-dose gabapentin trial is worthwhile, too, depending on what else you're on. Some people try an SNRI, but I seem to remember you're already on an antidepressant. If the NSAID and AED both fail (and there are multiple entries in each class), opiates at the right doses/intervals shouldn't interfere w/ breathing short-term if your BiPAP is adjusted optimally.
 
Thanks Laurie, unfortunately NSAIDs are out in my case. Last time I took two Motrin I wound up in the hospital with stomach bleeding. I thought I had seen a thread on here where gabapentin was thought to be neurotoxicity?
 
At high doses, gabapentin treats epilepsy and as with any neurological agent, higher doses carry side effect risks and withdrawal can be difficult because of the risk of seizures. It is generic, and was succeeded as a brand by Lyrica, its cousin, which is advertised heavily. Gabapentin has more years of data behind it and is cheaper, so I wouldn't start w/ Lyrica.

At low doses for neuropathic pain (I am talking about starting at 100mg; people w/ epilepsy can take 3000), risks are few (so long as you check for possible drug interactions as with any drug) and you can discontinue any time if it doesn't work. Not sure which thread you mean, so I can't comment beyond that. Gabapentin was at one time tested against ALS itself, as to whether it could slow progression. It did not.

Back to massage -- Larry had massage for years, and it really helped him. We also rested ComfortBags (grain-filled heating pads) against the sore spots, sometimes underneath. Obviously we didn't heat them to the max.
 
At my last clinic visit I was asked if I was in any pain and told them yes around 7 out of 10 constantly they seemed shocked. Then went on to explain that the ALS does not cause the pain but the muscle blah blah blah blah blah blah blah blah blah................ I have not found anything that really helps but I will not take any meds either. My wife has tried massage and baths with epsom salt that comfort me but don't really help. The best thing is the cold ocean but that can only happen occasionally. So my next go to is wine :)! I know it is not good for your liver blah blah blah blah blah blah blah blah blah................ But Who Cares I am dying!

Sorry I went off a little, and for your pain.
 
for right now i just deal with my hand pain and my cal massages my hands which helps. when things get worse i am considering medical marijuana
legal or not. i would eat it in brownies and be like bill clinton and not inhale it. from what i read it can help appetite, sleep,mucus,depression,pain and a whole lot more, maybe worth a look in to. 1love chally
 
Pete and all,

Larry couldn't do wine because of his other conditions/meds. But for those who can, whom it helps, go for it, if you're in comfort mode. The same goes for anything else, legal or not.

Pete, I'm sorry for your pain, and Neil's, and everyone else's. In a weird way, there are more things to try, so don't give up on the first thing. It's a hard enough life and death without the tightness of that, to be sure.
 
But for those who can, whom it helps, go for it, if you're in comfort mode. The same goes for anything else, legal or not.

Thank you! :cool:
 
A lot of people find the MM gives great relief.

I agree that there are things that you should try such as getting an OT involved to look at support and positioning to help relieve the pressure or stress on these painful muscles and joints.

I will say however that something like morphine or oxynorm given in very low frequent doses could make a huge difference.

Chris went into the palliative care unit for a pain management regime. They settled in giving him tiny doses of oxynorm every 4 hours and the change in him within two days was amazing. The lines in his face lessened, he had more freedom of movement (but no increase in the range) in his shoulders and he became steadier on his feet. He also felt so much better in himself!

Sadly, as soon as he came home he simply refused the medications again and was back to where he started, but that was FTD and another matter entirely.

Honestly he was on 1mg of oxynorm, with 3mg to go to sleep at night. Tiny dose that was not going to affect his breathing.
 
My Dr gave me hydrocodone. Said that if I didnt take too much it would not bee too likely to do breathing harm.
I wish I could get MM here, but in Texas, while you can carry concealed firearms, they dont seem to care too much about sick people. If you are caught with any amount for any reason its automatic 6 mo in jail. Of course they wouldnt really want me-they'd have to take care of me. Be amusing to see them wheel me into a cell.
 
yea the meds,feds and pharm have it all wrapped up. screw sick people! ha ha chally
 
I also use hydrocodone and swear by it.

Yes, it would be amusing to see them try to deal with people on PWCs and scooters... the problem is the $2,000 fine, which is probably what the sentence would be.
 
Steve is taking 500 mg aleve 2x a day. That is controlling his pain. The tramadol they initially tried did nothing for him. Moist heat helps the most.
 
Here's what I've tried.
What worked/is working: red wine, pot, Hydrocodone, Baclofen - and to keep sharp, Adderall.
Worked for a time: testosterone shots, lidocaine ointment.
Didn't like/didn't work: Tramadol, Oxycodone, various clinical trials
 
I have significant pain associated with ALS. What works for me is Lyrica and Percocet.
- Charlene
 
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