Fibromyalgia grieving and opiate intolerance.

[Daffodil]

@PennyIA @Misfit Toy .....my mother is in INTENSE pain and has been for years due to 2 failed back surgeries, nerve damage etc. I think she has had like 13 surgeries in her life and is now 81. She takes 5 percocets a day and maximum Gabapentin dose just to keep her pain from making her cry. Epidural injections do not work for her and its a constant agony because the opiates give her side effects. TENS machine, physio. etc make her worse. No one here will perform another back surgery and she is not a candidate for marijuana cuz of family history of schizophrenia. No one knows what to do for her. Her GP wants to make her wear a pain patch and just keep increasing opioids.

Last Friday, her pain doctor suggested something called a Quell Machine. It took me 3 days of non-stop arguing, begging, and pleading to get her to buy it and try it (it has a 60-day money back thing). I basically was 99% sure it would not work cuz it didn't seem that different from a TENS machine.....but I forced her to try it anyway (almost nothing helps my mom and she is sure to make you know it.....all day LOL)

So this morning, I put it on her. Usually, after her morning opiate and tea, she is doubled over in pain and in bed for 90 min with heating pads, while the opiate takes effect. Then, she is a little better for about an hour.

Today, I notice she had tea, put the dishes away from the dishwasher, made rice, walked around rummaging through papers, and is now cooking. This does. not. happen.

I am still reluctant to say it works cuz its only been 2 hours, but.......it looks like maybe ......

When we turned it off for an hour (which you have to do), she said her pain got worse again.

And it supposedly works for all pain anywhere on the body. From the reviews I read, it seems to work best for things like fibro, arthritis pain etc.

My mom hates that the electrodes cost $30 a month USD, but it looks like if it makes her take even 2 opiates less per day, it might be worth it.

Anyway, sorry for the long-winded post, but maybe there is something to this new machine. Amazon has it.
xoxo

 

[panckage]

For those who can't get opiods prescribed kratom is always an option. It's still legal most places, fairly cheap too. It's a powder like tea so kind of a pain to deal with though

I have found taking an opiod every 2 days is too much but taking one every third day has been sustainable and very positive for me. 2 good days a week are definitely welcome and I don't have to worry about withdrawal or the other negatives

 

[perchance dreamer]

@perchance dreamer, do you know if the actual supplement called "GABA" is Gaba-A or Gaba-B (or both?) I have never tried it and am still debating b/c the whole thing confuses me! I wanted to try it for a different reason (not for pain control) but no idea if it would work or how it would be.

@Gingergrrl, I was referring to Baclofen, a prescription muscle relaxer. It works on Gaba-B. I have a prescription for 20 MG, but use a pill cutter in order to take 15 MG.

 

[panckage]

a Quell Machine...From the reviews I read, it seems to work best for things like fibro, arthritis pain etc.

This is really interesting. I wonder how it works with fibro though? Fibro pain (at least mine) is all over so not sure how it could target that. I also read that it stimulates the opiod system... which sounds like a problem for long term use. For me opiods as well as LDN have tolerance so I would fear this would have the same tolerance issues

 

[Daffodil]

This is really interesting. I wonder how it works with fibro though? Fibro pain (at least mine) is all over so not sure how it could target that. I also read that it stimulates the opiod system... which sounds like a problem for long term use. For me opiods as well as LDN have tolerance so I would fear this would have the same tolerance issues

hi panckage. i dont know if anyone understands how it works lol. it uses "IF" technology whatever that means...so its different from a TENS, apparently, they say you dont get resistant cuz its 60 min on and 60 min off. it pretty much just came on the market so who knows.

what i do know, is that if it works, it works on pain all over the body.

maybe read some amazon reviews and try it? you can always send it back. about 20% seem to dislike it or say it doesn't help

my mom now says she gets help while its on but not while its off. i think she is trying to take 1/2 less opiate today but not sure how it will go. she is also still using heating pad but less.

let's see what happens over the next 4 weeks.

xo

 

[Gingergrrl]

@Gingergrrl, I was referring to Baclofen, a prescription muscle relaxer. It works on Gaba-B. I have a prescription for 20 MG, but use a pill cutter in order to take 15 MG.

So it sounds like GABA itself can work on either the A or B receptors and comes in different forms? Like Baclofen works on the B receptors (which I assume are the ones that have more potential for addiction?) I have never taken Baclofen and am curious about trying pure GABA (not sure if it works on one or both types of receptors?) in an experiment b/c I have an antibody that blocks the conversion of glutamate to GABA. I already suspect it will not work but am trying to figure out which kind to try which seems so complex from different posts and feedback that I have gotten.

 

[zzz]

So it sounds like GABA itself can work on either the A or B

Yes; GABA works on all GABA receptors.

and comes in different forms?

No, there is just one form of GABA.

Like Baclofen works on the B receptors (which I assume are the ones that have more potential for addiction?)

Yes, baclofen works on the GABA-B receptors, but it's the GABA-A receptors (where benzodiazepines bind) that have the biggest problem with addiction. GABA-B can actually be used to ease withdrawal from an existing addiction. That being said, baclofen doses have to be reduced slowly, as dependence on the drug can occur, especially at higher doses.

I have never taken Baclofen

I have; it was one of Dr. Goldstein's favorite drugs. It's one of the better-tolerated GABAergic drugs, at least partially because it works only on the GABA-B receptor. (At least until recently, it has been the only drug that works solely on the GABA-B receptor.) Its effects on the GABA-B receptor are supposed to be identical to those of pure GABA.

and am curious about trying pure GABA (not sure if it works on one or both types of receptors?)

Both.

I already suspect it will not work but am trying to figure out which kind to try which seems so complex from different posts and feedback that I have gotten.

Of all the GABAergic drugs or GABA analogs that I know of, I would think that baclofen would give you the greatest chances of success with the least problems. (Baclofen is a GABA analog, which means that its structure is very similar to GABA's, and it works directly on the receptor.) Like essentially all drugs, there are side effects, but they are usually mild when they occur, and disappear promptly upon discontinuation of the drug. It's true that some people can't tolerate baclofen (depression is one of its occasional side effects), but reactions to this drug seem to be quite individualized.

To answer what might be an obvious question, if baclofen works just like GABA at the GABA-B receptor, then why does it have side effects that GABA doesn't? There are two possible reasons for this: First, since baclofen doesn't work at the GABA-A receptor, its total effect is going to be different from pure GABA. Second, baclofen may be active at other receptors, and side effects could come from that activity.

As you probably noticed, there are threads about baclofen on PR.

 

[GypsyGirl]

let's see what happens over the next 4 weeks.

xo

Hope it keeps helping your mother; keep us posted!

 

[DeGenesis]

What is opioid phobia? Never heard of it. You are fearful of opiates? I am not, but would love to be able to take them without side effects. Some I am okay with...but very few. Morphine is the devil for me.

Sorry for being so vague. I mean that society has a phobia of opioids. I'm not the first to use the term.

The trend I see is that the establishment feels that it is better for some people to be in pain to protect some people from addiction. That's what makes me angry.

I don't do the subject justice by a long shot. Feeling pretty weak.

 

[GypsyGirl]

As soon as you explained, it clicked. And I really really feel ya on that. Other people can be judgmental about opioid use. And so many see it as a moral issue (you're a bad person, not mentally/spiritually/emotionally strong enough if you "need" painkillers!).

I keep looking at everyone's pets. (I have a point, really.) The well loved pets receive better care (with appropriate painkillers if necessary) and a kinder death than most people. People have the means to help other people with pain, and mostly we judge and torture by withholding treatment. It makes me very angry, and very sad.

 

[IntelligentImpulse]

In terms of opiate use, quite different(poppy plant extract versis marijuana) but has anyone tried using medical marijuana to address or numb fibromyalgia pain?

Chemically, both of them are fundamentally different so intolerance to opiates might not necessarily mean the same thing for marijuana.

 

[perchance dreamer]

@Daffodil, is your mom still using the Quell device? Is she still finding it effective?