Pain Meds

[KimT]

Just curious how many PALS take pain meds, when did you start them, and what type of pain?

I still have mobility in all four limbs. I've had cramps in my left leg and foot for over a year...no bid deal. Now I'm getting horrible pain in my trunk area, particularly my back all the time. I tried massage, physical therapy. I think it's a combination of spasms and spasticity. This week it spread to my left hand. It sort of feels like a mild cramp.

A combination of Valium, Tylenol, and Oxy helps. Prior to February I was fine with just a little magnesium and gentle stretching for my left leg. My left leg now aches and throbs. It feels like the nerves are irritated all down the leg and it tingles. At first I thought it was fasciculations but I can touch the top of my leg and feel the nerve run down to my foot.

I feel like I still have decent strength but my core is weak.

I'm going to Mayo pain management on Monday. I don't go to Clinic at Mayo because of insurance and a disagreement about my pulmonary function (long story.).

 

[lgelb]

Kim, they may touch on this at Mayo, but rather than stay on opiates for the long haul, might try addressing spasticity/cramps more directly, e.g. with tizanidine or baclofen, clonazepam (same class as Valium but more often used for this indication), mustard, pickle juice, know I'm leaving some out...also, I know you're taking Mg so want to make sure your electrolytes stay balanced -- maybe have them drawn if haven't recently.

 

[bigmark1954]

Kim....you don't want to use opiates long term period. It would make this journey more euphoric, but the side effects and addiction will catch up with you in the long run.

This is a national epidemic, and I have watched many people fall to opiate addiction. Even my "holier than tho" brother-in-law had an addiction requiring re-hab. He is the most perfect person I have ever known, if you don't believe me.........just ask him.

I only use pain killers for acute pain, but am very cautious about using them. It would make things a lot easier in the short term.........but I don't wanna go out like that.

Rant over.............

 

[gooseberry]

Kim, Steve had severe hand, leg, and core cramping/spasticity. He used 500 mg aleve 2x a day when necessary. He didnt use any of the antispasticity drugs.

 

[patoyeah]

there are medical publications stating Ibuprofen may have some benefit for als, i use Ibuprofen when needed, hoping to accomplish multiple targets. the cramping for me was intense, now the cramping is gone, and so are the muscles.

Hugs not Drugs, Baby, yeah, Baby, yeah.

this is your brain on drugs,

pat

 

[Nuts]

Kim, please let us know what they say at the Mayo pain clinic. It sounds like you have nerve issues in addition to cramps; steroid injections have helped my hubby and slowed his use of oxy way down (yeah).

Becky

 

[pittsburghgal]

Hi Kim,

Opiates (Oxy) are not indicated for chronic pain. They do not successfully control the pain and, as Mark said, they have a very high risk of addiction. I have been praying for you and I really hope the pain clinic at Mayo can find the answer.

My husband takes Aleve twice a day, mostly for back pain and Baclofen three times a day for spasticity.

Sharon

 

[KimT]

A small dose of Oxy (1/4th of a 15 mg tablet) helps immensely. If I can hold out until 2 or 3 in the afternoon, the rest of my day is so much better. At our local meeting, the general consensus was pain patches, weed, and pain meds made their lives so much better.

Baclofen doesn't work as good as Valium for me. The side effects of it are horrible. I've tried just about every other suggestion, including mustard. I have to watch out what I take because of severe acid reflux. The Valium and Oxy can be done under my tongue. Sometimes a Neurontin at night helps the tingling and nerve pain; sometimes not.

I'll let everyone know what Mayo says.

 

[affected]

Absolutely agree, tiny doses of something like oxy will address pain really well and not affect clarity of mind, and can improve functionality.

People often confuse the correct palliative use of opiates with bombing someone out in an acute situation.

Addiction is not really an issue either. Opiates used at the correct dose and for a medical issue do not cause addictions like people think of addictions which are caused by taking higher than needed doses, or taking opiates without a medical reason.
Our palliative care here had brilliantly written information on the use of opiates/opioids.

 

[ShiftKicker]

I wanted to weigh in on the idea of addiction to opiates that was expressed here. I'm not sure addiction should be such a fear for someone facing a life affecting illness that involves major daily pain. Comfort, under a doctor's care, is most important. Kim, going to a pain clinic, and being a member of a chronic pain group is really really good. It sounds like you are following the right path. I hope you get some answers and new ideas from the Mayo when you go.

My pain is caused by sore muscles from spasticity and cramping. Tizanidine has been the most effective for this for me. While not eliminating it completely, it has helped. It also helped me realize a large part of my fatigue was actually from muscle pain, as I am less fatigued when I have a pain free night. I'm not sure if you've tried Tizanidine, but I found it more effective than Baclofen for cramps AND spasticity. My concern is that your massage therapist has contributed to peripheral nerve damage due to not being more careful of your trunk weakness.

Fiona

 

[affected]

I find that when people say addiction, they actually mean unable to function unless bombed out of their brains.

Correct use of opiates/opioids keeps the person thinking quite clearly.
Obviously if pain reaches a very high level then higher doses of opiates may be needed and affect thinking.

But our Kim described a terrible pain level, but it is being controlled by tiny frequent doses. That is always the key - tiny and frequent, never waiting for pain to return or build.

Most people only experience opiates/opioids in a crisis situation (accidental injury, childbirth, something sudden, acute and high pain levels), or recreational use (heroin), and this greatly gets in the way of understanding how they are used palliatively.

 

[KimT]

I can't take Tizanidine because it aggravates heart arrhythmia. I'm not at all afraid of addiction. I've been taking Valium for over 20 years and never had to increase the dose. I understand the risk regarding respiratory depression but am willing to take that risk.

 

[affected]

Kim your doses don't depress respiration at all

I was more addressing addiction in response to concerns others seemed to have to using opiates/opioids.

You didn't quite get the response to your actual question about what regime others are using, sorry if we all took the thread awry

 

[KimT]

Kim your doses don't depress respiration at all

I was more addressing addiction in response to concerns others seemed to have to using opiates/opioids.

You didn't quite get the response to your actual question about what regime others are using, sorry if we all took the thread awry

Tillie, I'm sorry. I knew what you posted. I was responding to another thread where respiratory depression was mentioned.

I was waiting to hear what others were taking. Lately, I've read a lot on PubMed about ALS and pain. After talking to people in my local chapter and wondering how and why they were so positive, it was because they figured out ways to combat their pain. The pain was depressing them more than the paralysis and loss of voice.

 

[affected]

Pain is really something awful to deal with, and truly should be well addressed, I so agree!