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anderkling

Distinguished member
Joined
Dec 1, 2014
Messages
273
Reason
PALS
Diagnosis
01/2015
Country
CA
State
B.C.
City
Surrey
I am experiencing significant pain in my leg, where ALS symptoms started. My leg throbs and aches, and it's worse when the fasciculations are particularly active. My GP prescribed tramadol/tramacet but I can only take up to 6 a day. I take two at a time, but the relief lasts for only a couple of hours. Any suggestions of other pain meds that PALS have been prescribed for pain?
 
I use tramadol as well. They gave me Dilaudid at first but that just left me a drooling lump on the couch.
Vincent
 
I'm on baclofin at night. During the day the only thing that helps is a heater, which is weird because I describe my pain as my legs being on fire. They are so much worse when it's cold or I over did it.
 
I have nerve damage in my spinal cord and have a pain pump that has dilaudid. I also take oxycodone and baclofin orally for pain and the fasciculations.
 
I'm on baclofin at night. During the day the only thing that helps is a heater, which is weird because I describe my pain as my legs being on fire. They are so much worse when it's cold or I over did it.

My husband is also on Bacelofen and takes it three times a day. According to the Hospice Dr. the pain is due to the constant twitching of his muscles and the Bacelofen allows the muscles to rest because it somewhat helps subside the twitching. He also uses a heater on a consistent bases, not to mention two of soft plush blankets which are enough to help warm him but not too heavy as the weight of the heavy blankest hurts his body.
 
Tramadol does nothing for my husband. He is taking aleve.
 
I use hydrocondone T325 it helps a lot
Patrick
 
For neuropathic pain, some people find relief with low doses of AEDs like gabapentin (generic equivalent to Neurontin, the cousin predecessor to Lyrica, which under patent protection, is the one you see on TV). For those on baclofen and experiencing side effects, tizanidine may be better tolerated.
 
Thank you everyone for your suggestions. My doctor yesterday prescribed Lyrica to be taken before bedtime. It made me very sleepy in the morning, but maybe I'll get used to it over time. He said it doesn't interfere with any other meds or painkillers, so I can take tramadol as well. Pain certainly affects the ability to enjoy things, go out, have visitors, etc.
 
I take Lyrica as well and if I take to large a dose I get really sleepy. Your body should acclimate to Lyrica. If you need to, you made to want to try a smaller dose.

Doug
 
I can't take Lyrica or any of that class of medications. I'm the one that gets the weird side effects. So I take 75 mg of amitriptyline and 8 mg of tizanidine at night. The amitriptyline has the side effect of drying out my mouth which means I don't wake up to Wet pillow. It also has some and a depressive functions, and knocks me out for a full eight or nine hours. After seven years I don't get a lot of spasms, but I preferred the tizanidine. One thing you should know about tizanidine is it has a major caffeine Inter-reaction. The caffeine makes the entire dose available at once and if you have low blood pressure it will knock you on your can. Good luck.
Hollister
 
Apart from people like Hollister who can't tolerate AEDs, there is some rationale for trying them first over TCAs like amitriptyline for neuropathic pain, since even low doses of the latter are associated increasingly (latest JAMA characterizes as "strongest evidence yet") with onset of dementia in studies. True, AEDs like gabapentin and Lyrica won't dry you out as TCAs do, but there are other options for that.
 
About Lyrica, one its reported side effects is muscle twitching, which is the last thing one needs. Maybe it's helping a bit, but the fasciculations are driving me crazy! I don't know if this is just because of ALS, or if Lyrica is contributing to it.
 
You could try reducing the dose/moving the timing. Or another AED; each is a little different. One advantage of gabapentin is it comes in a lot of small dosages.
 
For immediate relief from fasciculations I always use cocoanut oil on the affected area.
 
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