Progress thread for ne

[Ne/Neva Eva]

The truth hurts. I just regret that it was hidden. I didn't mean it to be. I just couldn't write about it in the middle of it. I couldn't do anything.

I'm sorry it makes you sad. I guess it is sad. This disease is definitely a heartbreaker, for all involved. And by all accounts, I've got it bad.


BUT...

[dundrinkn]

I am not sad to know that truth. I am happy to know you are coming out of it. We all go through shit times. It's hearing about them and knowing that someone else made it out that's important. Thank you so much for sharing so honestly.

My legs hurts like a mother fucker. (Gave up giving up swearing.) Is it possible this is alcoholic neuropathy? WTF?? I have to look up that stuff and see. No time to go down that rabbit hole today though. Just seems that the further away I get from my last drink, the more my legs are hurting. I am at 800mg gaba. I will up it. My script is for 900, but since I get 3 months at a time though mail order pharmacy, I have a butt load saved up. Plus my p doc will prescribe higher if need be.

As for Otter's messages to (person who shall not be named), it may be best to ignore (person who shall not be named), but I am really enjoying the shit storm. Just saying'.

[Seagirl1]

The truth hurts. I just regret that it was hidden. I didn't mean it to be. I just couldn't write about it in the middle of it. I couldn't do anything.

I'm sorry it makes you sad. I guess it is sad. This disease is definitely a heartbreaker, for all involved. And by all accounts, I've got it bad.


BUT...

Any Is chance of talking to Ed now ? Is he online or whatever?

[StuckinLA]

Dun I don't know if we have the same leg thing or not, but for me the skin sensitivity and pain was intolerable, and one of the (several complicated) reasons I ended up stopping bac. I hate to think it might be neuropathy, and I'm not entirely free from it, but these days it's hardly noticeable.

This isn't a very coherent response. I guess what I'm Saint is that you struck a chord with me when you said it gets worse the further you get from your past drink. This is not at all a reason to drink, but it does almost seem like drinking fixes the problem. Not the way drinking 'fixes' other problems, but the leg pain actually goes away.

And I wonder what complex horror of brain and nerve pathways is involved in all this, and why the hell we have to deal with it. Hope the Gaba helps.

[Seagirl1]

I am sad that u still have a way to wipe out posts that you do not like. that's what I was saying. Just stop it. It is so not authentic . I so want to like u Karen but when u just wipe out things, I just cant deal with it. Night.

[Ne/Neva Eva]

I know you didn't ask, but I'm going to give my thoughts anyway, Stuck. It sounds exactly like neuropathy. If it's treated early, it might get better and it definitely won't get worse. I'm pretty sure the first line treatment is abstinence with vitamins/supplements and that the medication for neuropathy is gabapentin/Neurontin. (Get it? Neurontin-Neuro-Brain/Nerves...) If it's NOT treated, it gets worse and then you get to a place where it will never get better and it results in permanent pain and tingling in the affected body parts. This is NIH website describing alcoholic neuropathy:

https://www.nlm.nih.gov/medlineplus/ency/article/000714.htm

Seagirl, I don't think I have deleted anything in a very long time? And the reason I used to delete things is because there was a troll, worse in some ways than Spirit because he targeted me and quoted me out of context ALL THE TIME. It was not just frustrating, it made me look like a really bad person. It was worse than deleting stuff. Colin was one of them, and he was the one who constantly harassed me about deleting my posts.

I reserve the right for all of us to delete things when we need to or want to, even if it's just because it makes us uncomfortable. Sometimes I'm just too self-conscious to write things on here. Sometimes something I say is completely inappropriate, or hurtful when I don't mean to be.

No offense, but I don't know why you think you should have unfettered access to my every thought and word. Granted, I should self-censor better, but sometimes I don't. And I know plenty of other people, including me, who have deleted information that was personal, or allowed them to be identified. At one point I put my home address on here and invited people to GoogleEarth it and see exactly where I lived! What a knucklehead. I can still be a knucklehead, you know. It happens. And sometimes, it's nobody's business but my own. If that makes you dislike me, it'll bum me out, but there's not much I can do about it.

But your point is taken, and I'll try to think more about my posts before I officially post them.

EDIT TO ADD: You've got to admit, I try to be brutally honest, legitimate and open about my life and my thoughts. I don't see a lot of other people sharing as much as I do, and I know good and well there are risks to sharing. Especially since I'm going into a medical profession. I'm sure you can understand that. Just the fact that you know my name and use it here is very unusual. Right?

Also, I try to put why I edited something. You can see it down at the bottom.

EDIT TO ADD: Stuck, it even says that finding a way to sleep without covers touching the legs...I remember you specifically mentioning that and that your jeans really bothered your skin.

[dundrinkn]

OK. Had to do it. Read a bunch on alcoholic neuropathy. I think mine is from the baclofen. When I have lowered the dosage to around 60 or 70 mg. and haven't been drinking, the pain decreases but never quite goes away. I think the alcohol does dull the pain when I am titrating up. Then when I go AF, it is freakin' unbearable. I mean, screaming when I bend my knees with pain that is really... you get the point. I think I am going to stay at 100mg of Bac and continue to up the gabaP and see if I can get it to subside that way. I am off alcohol completely for a while. It's a good thing I'm so flipping vain because I won't have a beer until I lose 20 pounds. No more ice cream either. For some reason I'm ok with it all. But I am to the point where I have to buy new clothes or lose weight. Since losing weight means I have to completely go AF, it's a win win.

Stuck, I don't know if the baclofen causes permanent nerve damage or not. I have never come completely off the Bac since the pain started so can't say. And I could be fooling myself and this could be caused from alcohol. I didn't think I drank enough for this to be the case. I could drink 8 to 10 beers a day easy. And I have gotten to the point where I was drinking 12 or more a day, but never for long periods of time. That's a lot of calories, but I drink piss water beer, so it's not a ton of alcohol. But then again, maybe I'm fooling myself. You could always try GabaP for the nerve pain and see if it helps with alcohol craving. The stuff is dirt cheap, really. Just a thought.

[StuckinLA]

No ice cream??? You monster!

I got it real bad above 150mg/day and it basically went away when I stopped bac. When I tried to go back on bac my legs hurt immediately at 30. No, I don't think bac causes anything, but I do think it probably exacerbates some kind of nerve thing.

[Ne/Neva Eva]

I missed a couple of posts yesterday and only responded to a couple of them.

Dun, thanks for your words of support. I really appreciate it. By the way, I just bought new clothes. In sizes I never thought I'd see in my own closet. I've got to get the beast off my back before I take on nutrition. (I don't use diets, since they don't work, so I just call it nutrition...) However, I'm not even going to pretend to quit smoking until I get the weight off. No way am I going to do anything that may add more pounds. ugh.

You guys are making me think that baclofen is the cause of the problem, which I didn't really understand before. If it is possibly causing neuropathy...hmmm. I have had two friends with permanent neuropathy and, well, it's bad. I hope the gabapentin addresses it.

Is yours the same as Stuck's, Dun? If I recall, yours was tingling and a burning sensation in your legs, Stuck? What is it about your knees, Dun? I'm asking for personal reasons to try to understand more, and because I think this is important information to pass on. Sorry I didn't really understand it before. Nursing school helps. It's why I went in the first place...To understand more about our bodies and about baclofen.

Seagirl, Ed and I talk about all of this relatively frequently. He has had a couple of days off since our first talk, and on both of those days we had other heavy discussions.

I have to admit, I'm getting more than a little tired of being blasted. And of taking all the blame. He has a right to be angry, but he's not yet in a place to think rationally and that is very fucking annoying. In so many ways we balance each other out, but it can be exhausting living with a pessimist. He only remembers the bad things. He can't imagine that the future will be good. It's up to me to help him with that, a responsibility I accept. He helps me when I start wandering off into Pollyanna-world where everything is lovely and I get out of touch with reality in the opposite way that he does.

But damn. I really need him to get a grip or I'm going to lose my temper.

Still, we're communicating. That's what's important. If I need to lose my temper to get him to start seeing some light, then so be it. I'm not one for forbearance and patience. It's a character flaw. :-/

[Ne/Neva Eva]

At this point, I'm kinda with you, Dun. It's kinda fun.

I was going to put in the popcorn-eating emoji here, (one of Lo0p's favorites) but apparently you have to be a subscriber. :-/

[terryk]

OK. Had to do it. Read a bunch on alcoholic neuropathy. I think mine is from the baclofen. When I have lowered the dosage to around 60 or 70 mg. and haven't been drinking, the pain decreases but never quite goes away. I think the alcohol does dull the pain when I am titrating up. Then when I go AF, it is freakin' unbearable. I mean, screaming when I bend my knees with pain that is really... you get the point. I think I am going to stay at 100mg of Bac and continue to up the gabaP and see if I can get it to subside that way. I am off alcohol completely for a while. It's a good thing I'm so flipping vain because I won't have a beer until I lose 20 pounds. No more ice cream either. For some reason I'm ok with it all. But I am to the point where I have to buy new clothes or lose weight. Since losing weight means I have to completely go AF, it's a win win.

Stuck, I don't know if the baclofen causes permanent nerve damage or not. I have never come completely off the Bac since the pain started so can't say. And I could be fooling myself and this could be caused from alcohol. I didn't think I drank enough for this to be the case. I could drink 8 to 10 beers a day easy. And I have gotten to the point where I was drinking 12 or more a day, but never for long periods of time. That's a lot of calories, but I drink piss water beer, so it's not a ton of alcohol. But then again, maybe I'm fooling myself. You could always try GabaP for the nerve pain and see if it helps with alcohol craving. The stuff is dirt cheap, really. Just a thought.

There's a difference between neuropathy - which is more or less permanent damage to nerves (leading to loss of sensation and motor function), and neuralgia - which is pain localized along the distribution of nerves. It is *extremely* unlikely that baclofen is causing neuropathy - I've searched and searched the literature ever since Stuck mentioned his trouble with leg pain and baclofen years ago, and I can't find a single mention of it. And if it's not alcoholic neuropathy, it's possible that the pain is something like sciatic neuralgia related to baclofen's action at the spinal cord, where "over-relaxed" spinal muscles might cause the vertebrae to impinge on sacral or lumbar nerve roots.

From Wikipedia: "sciatic neuritis, sciatic neuralgia, or lumbar radiculopathy, is when pain is felt going down the leg from the back.[1] This pain may go down the back, outside, or front of the leg. Typically, symptoms are only on one side of the body. Certain causes, however, may result in pain on both sides."

Ironically, baclofen has been used for some time *to treat* peripheral neuropathy and other types of neurAlgia, but it's possible that higher doses could have a paradoxical effect. Lastly, Gabapentin and the more powerful Pregablin are first line treatments for neuropathic pain, so you are on the right track there. I hope you figure out a way to make it better. -tk

[Ne/Neva Eva]

Interesting stuff. Thanks, Tk. I have sciatica, the nerve pain that is a result of a compressed nerve somewhere in my lower spine. The pain is more of an ache and runs down the back of one leg or the other. I wish baclofen helped with that, but it definitely does not.

I'm really very curious as to the symptoms you guys are experiencing. I think I might harass you until you share them.

Also, pregabalin sounds like a great medication for people like us. Check out the wiki page. It's also available at River. I'm going to talk to my pdoc about it, actually, since it looks like a good alternative to benzos without all the benzo related risks.

[Ne/Neva Eva]

I am really bothered by this for some reason. Seagirl, can you explain exactly what you meant and why.

I am sad that u still have a way to wipe out posts that you do not like. that's what I was saying. Just stop it. It is so not authentic . I so want to like u Karen but when u just wipe out things, I just cant deal with it. Night.

There is an irony in that post...I have never mentioned this before because I didn't really want anyone to know. When MWO moved to the new site, all the old deleted posts were restored. This means that all the hours and days I spent deleting this thread of any information I was uncomfortable with has been restored. My thread, and other posts, too, are completely intact. I wonder if the post with my home address is back, too. I bet it is. :-/

I got nothing to say this morning. I think I'm going to go work on the new forum. I didn't do anything productive yesterday.

I drank 15 beers yesterday. FIFTEEN. Not really sure what that was all about. Actually, I have an inkling but I don't feel like going into the mind-drama inside my head. Ed was gone all day and into the night...
I just sat and read and wrote and drank and smoked.

What's even stranger is that I'm not in my bed, or the bathroom, wishing for a quick death due to hangover. Which is great, because I have a ton of stuff I need to do today. I do, however, feel fat as an elephant. I know it's in my head, but ugh.

Disappointing, though, you know? Though, to be clear, I feel no shame about it. It just is. I didn't even try to limit my intake. I just needed the release. Gonna have to find better ways to do that, aren't I?

Peace out.

[dundrinkn]

Hey hey Ne. Good morning MWOers. I so get where you're coming from on that 15 beer, not limiting intake just needing the release. I did that a lot the last month I was drinking, sort of having it in my mind that I'd take a few months AF to get myself set back to 0. The road to enlightenment is littered with empties...that's my moto.

I didn't realize how much I was drinking until recently, when I stopped! I have had some pretty serious withdrawal symptoms. Still am, really. In the past I have weaned more using the baclofen rather than just drink and drink and drink right up to the cliff. Then stop. That shit is physically hard on a body, yo.

Ne, the knee thing isn't pain in the knees. It's more the extreme bending of the legs which creates this burning (not even the right word) pain through the entire legs. Just legs. I did read somewhere in a list of side effects that neuropathy is a rare SE of baclofen. When I look back at my threads I never stay up high more than a few months, because of this SE. So I don't know if it gets better. I am trying to stay at 100 bac and am now at 900 gaba. No reduction in pain. I had a reduction when I was around 80 bac and 500 or 600 gaba. I know for a fact that 80 bac doesn't cut it if I drink. So there is that...

I need to get over to Lis's thread and post to those folks over yonder. Haven't been good about keeping up on posting lately. But oh, I have to say, I have been enjoying the show. I don't have the popcorn emoji either, but that would be good for all this.

[StuckinLA]

Yeah that sounds very similar to what I've got going on, Dun.

Well so I drank right through the weekend. All that work I said I was going to focus on? I focused on avoiding it. Things always tend toward this direction - not eating, not getting out of bed. Just smoking and drinking and watching tv. I kind of disgust myself sometimes.

Though I did go through 2 bottles of whiskey over the last few days, it's been mostly beer. And not even really feeling like drinking it - I'd open one then it would sit on the nightstand and I wasn't even feeling drunk, just lazy and completely unmotivated.

The good news is that because of that, I didn't just step off the cliff from a full-on binge and so I'm not feeling withdrawal-y today. A little under the weather, and tired as hell 'cause I barely slept last night. But ready to be back on track again, hopefully, this week. We'll see.

I pick up the girl from the airport this evening. And all the things I didn't do are looming. And the job market - God, I really don't know what I want to do with my life. This is sort of a real existential crisis I'm in at the moment. Happy with the girl and with my relationship, just unhappy with my career (or lack thereof).

Have a good one out there today.