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Old 04-02-2021, 04:00 AM #1
Atticus Atticus is offline
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Hey SoulfulYin,

I've read this thread this morning and and am hugely impressed by how thoughtful and caring you are.

My background is also alcohol induced peripheral neuropathy. My PN too peaked after I had stopped drinking, maybe 2 months afterwards, but things slowly began to get better. I don't understand this mechanism, but wonder if the liver in detoxifying releases neurotoxins into the blood.

Here are some thoughts

Your mum seems to lack motivation. This is understandable. Are you familiar with the neuromodulator/transmitter dopamine? Dopamine release in the brain is triggered when you engage in activities you find pleasurable. It's a kind of reward system. Alcohol causes an addictive imbalance of dopamine release through drinking. It overloads the system and reduces dopamine receptor sensitivity. Alcohol itself becomes the reward. At the peak of my drinking I used to wake up and drink supermarket whisky.

When you stop drinking the lack of dopamine can lead to a sense of hopelessness and and emptyness. This combined with the additional time for reflection that sobriety inevitably allows can lead to reduced motivation and the fear that things will get worse, not better.

I wonder if overnight TV has replaced alcohol for your mum.

I know it sounds odd, but peripheral neuropathy and the pain associated can be a great motivator. The desire to get better and to see progress can be its own reward. I know it did for me. And improvement, believe me, reduction in symptoms is an absolute joy.

The Glymphatic System

The Glymphatic System is like the peripheral lymphatic system and clears waste products from the brain and CNS. Waste products accumulate in the brain extracellular space. Clearance is primarily achieved through sleep. When my symptoms peaked about a year ago during 1st lockdown I found I would sleep for hours and hours. I just wonder if overnight TV is the worst thing your mum could do. Other ways to boost glymphatic clearance is exercise and forward motion. I appreciate this is difficult but can you get your mum to walk outside and increase her walks over time? Don't underestimate the healing properties of sunlight and fresh air.

Brain detox, liver detox foods/beverages

Coffee but only in the mornings.

Decaffeinated green tea. This is packed with anti oxidants. I say decaff because this is the go to drink and sleep is very important. Available from supermarkets.

Hibiscus tea. Not cheap but loaded with anti oxidants

Pomegranate juice. Pure organic. Again not cheap, but this is a fantastic all round drink and a great prebiotic. When I stopped drinking I craved carbs. This drink is very sweet. But only have a small glass a day.

Walnuts other nuts

Sardines, tinned is ok. Omega 3 is anti inflammatory. Consider a fish oil supplement but one that is guaranteed mercury/metal free.

Flaxseed and Chia seed. You need to grind these and introduce in small doses given your mother's gastric bypass. Again loaded with omega 3.

The ORAC unit (Oxygen Radical Absorbance Capacity) shows that berries are up there with the highest anti oxidant function, and blueberries are the king of berries.

An oat porridge with added milled seeds and nuts and berries would be a great way to start the day.

I would also consider taking an Alpha Lipoic acid supplement, but again its not cheap.

Best wishes,

Atty.
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Old 04-03-2021, 12:48 AM #2
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Hi SoulfulYin,
Thanks for letting me know that you do have some outside support there. I had hoped you didn't think I was a bit odd for asking if you were an adult.

I was just concerned that you may have been very young especially as you appear to have so much on your plate right now. I hope your Mum starts to feel brighter soon.

Others have suggested getting her moving more. That's something that's kept me going when nothing else could. If I stopped I never would have wanted to start up again. Keep on moving.

I don't know how cold it is where you are or if it's icy or something, but if you have a patio or a small garden, or even if you have a community garden, you could grow some herbs and vegetables in pots.

Anyway, thanks for letting me know you have some support or at least family to phone in case you need them.
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Old 04-03-2021, 05:16 AM #3
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Quote:
Originally Posted by Atticus View Post
Hey SoulfulYin,

I've read this thread this morning and and am hugely impressed by how thoughtful and caring you are.

My background is also alcohol induced peripheral neuropathy. My PN too peaked after I had stopped drinking, maybe 2 months afterwards, but things slowly began to get better. I don't understand this mechanism, but wonder if the liver in detoxifying releases neurotoxins into the blood.

Here are some thoughts

Your mum seems to lack motivation. This is understandable. Are you familiar with the neuromodulator/transmitter dopamine? Dopamine release in the brain is triggered when you engage in activities you find pleasurable. It's a kind of reward system. Alcohol causes an addictive imbalance of dopamine release through drinking. It overloads the system and reduces dopamine receptor sensitivity. Alcohol itself becomes the reward. At the peak of my drinking I used to wake up and drink supermarket whisky.

When you stop drinking the lack of dopamine can lead to a sense of hopelessness and and emptyness. This combined with the additional time for reflection that sobriety inevitably allows can lead to reduced motivation and the fear that things will get worse, not better.

I wonder if overnight TV has replaced alcohol for your mum.

I know it sounds odd, but peripheral neuropathy and the pain associated can be a great motivator. The desire to get better and to see progress can be its own reward. I know it did for me. And improvement, believe me, reduction in symptoms is an absolute joy.

The Glymphatic System

The Glymphatic System is like the peripheral lymphatic system and clears waste products from the brain and CNS. Waste products accumulate in the brain extracellular space. Clearance is primarily achieved through sleep. When my symptoms peaked about a year ago during 1st lockdown I found I would sleep for hours and hours. I just wonder if overnight TV is the worst thing your mum could do. Other ways to boost glymphatic clearance is exercise and forward motion. I appreciate this is difficult but can you get your mum to walk outside and increase her walks over time? Don't underestimate the healing properties of sunlight and fresh air.

Brain detox, liver detox foods/beverages

Coffee but only in the mornings.

Decaffeinated green tea. This is packed with anti oxidants. I say decaff because this is the go to drink and sleep is very important. Available from supermarkets.

Hibiscus tea. Not cheap but loaded with anti oxidants

Pomegranate juice. Pure organic. Again not cheap, but this is a fantastic all round drink and a great prebiotic. When I stopped drinking I craved carbs. This drink is very sweet. But only have a small glass a day.

Walnuts other nuts

Sardines, tinned is ok. Omega 3 is anti inflammatory. Consider a fish oil supplement but one that is guaranteed mercury/metal free.

Flaxseed and Chia seed. You need to grind these and introduce in small doses given your mother's gastric bypass. Again loaded with omega 3.

The ORAC unit (Oxygen Radical Absorbance Capacity) shows that berries are up there with the highest anti oxidant function, and blueberries are the king of berries.

An oat porridge with added milled seeds and nuts and berries would be a great way to start the day.

I would also consider taking an Alpha Lipoic acid supplement, but again its not cheap.

Best wishes,

Atty.
I appreciate the compliment-- I'm only trying to do my best for my mom, who's done her best for me ever since she had me.

It's funny you mention overnight TV, though. It's kind of all she's been doing when not doing anything else, which is to say, practically 80% of the time. If she's not in the kitchen getting something to drink or in the bathroom, she's in her room and on the bed 9 times out of 10. She does on occasion walk a few laps from the front of the house to the hallway, but it's not very often. I try to get her to at least do this more, and her PT tells her to as well. Even now, when she can manage to get up and down the stairs on her own, she doesn't walk very often.

We don't have a patio, we live in an apartment. We do have a little glass door that leads to a little 'burrow' kinda patio outside, if that makes sense? But there's very little room to walk around in, and it's dirty as all get out. But once she's confident enough, I'll try to talk her into walking outside. Or at least with the shades pulled so we can get some sunshine in the living room. Honestly I think she's excited about the idea of going outside again, now that the snow's all melted and it's getting warm out. The issue is, I think she'd be embarrassed about being seen with her walker. I can't blame her one bit, I'd have to keep my eyes glued to the ground if I went outside.

I don't remember if I mentioned this in a previous post, but my mom responds absolutely terribly to pain/discomfort. When her symptoms get bad, she's in tears over it and the absolute last thing she'd want to do is even get out of bed. It's actually been a few days since she even had a 'bad' day, though, now that I think about it. Just tonight it got bad for her when the gabapentin had about worn off fully (just before her next pill, actually), and that was when I noticed that. I try to tell her these kinds of things in hopes that she can see the positive side of this disease, if that's the correct term for PN, and she does tell me that it helps, but I worry sometimes she just says it so I'll be happy. Either way, I absolutely will try to get her to move around more and maybe even go outside and even just sit on a chair for a bit.

Personally? Even I would like to do that. Just go and enjoy the air and the sun. The situation never really called for me to say this, but I'm an absolute shut-in-- have been since I was done with school. Only time I ever went out was when my mom forced me to go to dinner or lunch w/ relatives or when I visited a friends house, but those moments were few and far in between. I suppose this situation combined with lockdown have changed my perspective on this hermit lifestyle I currently lead. I definitely see the appeal in going out a lot more clearly now, whether it be for a walk or to eat at an iHop with friends/family. Too bad we still have to wait for lockdown to really have get-togethers like that again. At least we have Zoom!

Sweets seem to have replaced alcohol for her too, but when I found out how high her glucose levels were and came to her with the idea of cutting back on it, she didn't really like that. But this was when her PN was a lot worse. She was quick to handle it, though. Accepted buying sugar free popsicles instead of the usual kind we get, we bought apples and orange juice and diet sprite too. Probably not the best way to really cut out sugar, but I at least hope it's a step in the right direction. It seemed to be to at least some degree, though. As mentioned above, she hasn't really had a 'bad day' until tonight since we cut back. I at least want to keep this up until we can get her glucose levels down and out of prediabetic range. I wouldn't wanna cut out sugar either, but I've been trying to both in solidarity with her struggle and because it'd be good for me too anyway.

She has coffee nearly every morning, but she used to put a lot of sugar in it. She started only putting a pinch of it in there since yesterday, but she felt good enough to take care of something really important today that she'd been putting off for 2 days now. She has tea of the green variety (I think? Don't know much about tea other than I don't like the taste!) sometimes too, but I don't think it's the kind you speak of. Will talk to her about this!

I was just thinking of flaxseed, too! I couldn't remember the name, but I mentioned it to her earlier-- I used to HATE when she put it on my waffles some mornings before middle school, but to this day I absolutely cannot deny its effectiveness. I swore it was magic back then, how it seemed to perk me right up after I ate. Now that I have the name again, I'm definitely bringing this back up to her.

I've seen some articles about alpha lipoic acid, and I brought it up with her some weeks ago too before we even heard the name of what mum had. We're very short on money, so we probably won't be able to get it anytime soon, but I'll bring it up with her. I should make a list...

We bought a magnesium supplement (it's supposed to arrive sometime today, even), and I was thinking of trying to get her some Omega-3 supplements too, but if she can get this all through food we'll try that way too. I just wasn't certain before, due to her gastric bypass. I don't know if she likes sardines, is tuna okay? She LOOOVES tuna, and tilapia. Tilapia, I can understand, but I don't know how she can even stand the smell of tuna.

This information is absolutely invaluable to me, I hope you're aware. I'm more grateful for it than I can even put into words, but I really appreciate the help.

Quote:
Originally Posted by Lara View Post
Hi SoulfulYin,
Thanks for letting me know that you do have some outside support there. I had hoped you didn't think I was a bit odd for asking if you were an adult.

I was just concerned that you may have been very young especially as you appear to have so much on your plate right now. I hope your Mum starts to feel brighter soon.

Others have suggested getting her moving more. That's something that's kept me going when nothing else could. If I stopped I never would have wanted to start up again. Keep on moving.

I don't know how cold it is where you are or if it's icy or something, but if you have a patio or a small garden, or even if you have a community garden, you could grow some herbs and vegetables in pots.

Anyway, thanks for letting me know you have some support or at least family to phone in case you need them.
Yeah, as much as my mom might feel like it, my grandma and uncles do really care about us. They do what they can.

And no, I absolutely didn't see you as odd, or anything of the sort! I figured someone would ask the question, I never mentioned that I worked (which I don't) and that's typically what self-sustainable adolescents do.

I appreciate the concern and the words, and it does get pretty daunting for me sometimes, especially when you consider I'm not someone qualified for this kind of work and all that, but...well, at this point I don't think I'd want anyone else to do the job of taking care of my mom until she's able-bodied again, or close enough. I think I owe my mom at least that much, given all she's done for me.

I definitely will strive to get her moving more. She's been walking about 7.5-10 minutes whenever I can get her to, but I try my hardest to find a middle ground. I don't want her to be in any more pain than is necessary, even if both mine and mom's version of necessary would be none at all.

It used to be cold back when this all first started, but the snow and ice have all melted and it's beginning to get warmer now.

Thank YOU for your concern and your help. It means a lot more than I can put into words, truly. I'll keep you all updated on our situation as things happen. Things have been going relatively better each day, I've found. Won't be long before mom's got her legs about her again. I honestly don't know where I'd be if I hadn't found this place.
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Old 04-09-2021, 11:32 PM #4
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Default Quick update on our situation

Mom's left leg got pretty swollen today. This was some hours after the call from one of mom's doctor's nurses that her lab results were normal, or so my mom said. It was after my grandma brought some deep fried chicken and spaghetti. Mom had maybe 1 piece, or most of it.

Then, maybe no longer than an hour later, her left leg bloated. She drank some water and took a short little walk, it went down a little. We didn't want to give her too much water, since she's technically still on a fluid restriction, which we didn't think she needed anymore since her results are normal. But we have not gone over her limit. Maybe no more than a single ounce more, at worst. But it's still swollen, maybe 2-3 hours max since it bloated. I'm thinking maybe it's related to her blood sugar. I'm no doctor, though, so I don't know. We called my aunt, and my grandma. Aunt doesn't know, but she does deal w/ edema too and sometimes her legs bloat. Idk if it's only one sometimes. Grandma doesn't think it could be due to just 1 piece of fried chicken. But at the same time she says not to worry. Now, as her son you might be able to tell why that's a little hard to do.

About the clinic calls. They don't respond past 8/8:30. Idk if it's just for Fridays or what. But our only option, really, is to just go to the ER and see what's going on. Mom's experiencing literally no pain, no chest pain, no short breath, absolutely nothing out of the ordinary. But her memory issues persist still, and I think maybe they got a little worse tonight since this happened, maybe sometime before. But Grandma says not to worry, Mom wants me not to worry, I think we should go to the ER, but it's hard. I can't drive, and neither can she on account of both her neuropathy and her memory problems, and now this. Ambulance rides are expensive, and already we're dealing w/ money issues. Doctor is going to call tomorrow. I just, really really hope we can afford to wait.

So many variables. So many nebulous possibilities. I can't take this. I'm really sorry to vent like this, and on an issue most likely not even related to her neuropathy (which idk if it's against the rules or anything, I'm sorry if it is though). Some medications also apparently can cause swelling. Amlodipine, and Gabapentin both can. One of her medications also react to potassium too, apparently. Idk if fried chicken has it, but apparently potassium is related to sodium, or something like that. Maybe it's another form of it. She's been on both for a while now. Idk if it'd get this bad, though. Or how long it'd take to go back down. I mean it did a little bit after some water and walking. Maybe it's just her blood sugar. She is prediabetic, technically. 116 glucose levels, Idk if I mentioned that before. But maybe that's what happens when you're dealing w/ neuropathy then just eat fried chicken.

I just checked the swollenness again just now. It's noticeably less swollen. Which is a relief. But still...if anyone has any ideas, I would appreciate them significantly. We're not out of the woods just yet, I think.
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Old 04-10-2021, 12:33 AM #5
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It's difficult to really know what to suggest I'm sorry and you're right in that it could be related to her blood sugar (or her blood pressure if that's high?).

If you have any Epsom Salts, try having her soak her foot in a bath or bucket of warm water and the salts.

I would be worried if she's been lying down for a very long time (days)and not getting up and moving around. How much is she actually moving around all day and what is stopping her from walking more, is it pain or something else?
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Old 04-10-2021, 12:54 AM #6
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Possibly...

If you're not used to eating food like that then the amount of salt in the food may have caused her leg to swell. I imagine such food would be an overload of salt.

edited to add: Get your mum to lie down and use a couple of pillows or cushions so that she can raise her leg higher than her heart. See if that helps.
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Old 04-10-2021, 01:44 AM #7
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Hey SoulfulYin,

I think Lara is right here and its the high salt content of fried chicken that has caused the problem and it's your mum's physical inactivity that has made her vulnerable to this. To avoid a further episode consider the following.

So get her moving or even simple leg elevation for a few minutes at a time may help.

Avoid salt.

Avoid processed foods that are high in salt.

Avoid processed/refined carbs, they encourage sodium/water retention.

Drink water. I appreciate she has restrictions

I think from memory you have a magnesium supplement, that's good to take

Potassium rich foods such as avocado and sweet potatoes and green leafy vegetables and tomatoes and bananas help reduce sodium levels.

Does she take B6 in a B multivit? That helps too, but not too much.

Dandelion tea is a natural diuretic.

Hope this helps.

Take care SoulfulYin.
I hope your mum appreciates all that you do for her.

Atty
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Old 04-10-2021, 01:03 AM #8
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Quote:
Originally Posted by Lara View Post
It's difficult to really know what to suggest I'm sorry and you're right in that it could be related to her blood sugar (or her blood pressure if that's high?).

If you have any Epsom Salts, try having her soak her foot in a bath or bucket of warm water and the salts.

I would be worried if she's been lying down for a very long time (days)and not getting up and moving around. How much is she actually moving around all day and what is stopping her from walking more, is it pain or something else?
She tries to be more active. She does. But it's probably not enough. She used to practice walking up the stairs, but we haven't done that in a few days. She does walk every now and then, but most of the time it's just to go to the bathroom or make things in the kitchen. I've been slacking on getting her to walk, so the blame there is on me. I've just been so demotivated recently, but I can't let things like this happen again, not to my mom. She is obese, probably morbidly so. Or close. And the glucose levels of the results, when we got them, were at least 2 weeks old-- and it'd been almost 2 more weeks or so since we even heard about that. She might have type 2 diabetes by now, or be a lot closer-- we didn't really start trying our hardest to eat healthy until maybe very late march/early april. I think one of our friends, the same one that recommended tropicana juice to help keep her blood sugar in check (one of her friends has diabetes and they drink that, the friend says), sent a box w/ some salts that help with that I think. Lavender-scented, I know that much for sure, but I also know they do something else for her body. We haven't used them yet, though.

Her swelling is definitely going down. Slowly, but it is. I checked again, about maybe 45 minutes later or so. It doesn't feel much better than before, but it does. It's probably because she's technically still on a fluid restriction and she can't have more water, which probably made the swelling go down faster earlier on. That and the little walk she did. Doc is calling tomorrow so we can discuss that very fluid restriction, though. We'll tell her everything that happened tonight.

We checked her blood pressure, too, with the little wrist thing we got. Apparently it's lower than it used to be, when we did the test. Mom's blood pressure is normally pretty high. It was 139/79 I think, or around that range. It might just be the food she ate. She had a little more water to take her pills, got up one last time (it was for a bathroom trip but still, a walk is a walk), and since then the swelling has continued to lessen. It's still noticeable, but its better than when it first started-- and when it went down the first time, maybe 1-2 hours ago. She hasn't been taking the magnesium yet, pills are too big but I'm also worried she doesn't need it, even if everything points to her needing it. I'm not a doctor, I can't just give her something that could end up making things worse. We WILL bring this up with her doctor tomorrow, though. I'm gonna collect as much info as I possibly can to relay to doc tomorrow. Her vit levels, if she needs magnesium/fish oil/any other vits, what her blood sugar is, all that.

Regardless, she didn't start eating super healthy until recently, and then we regressed some today. Veggie and gluten free or not, pizza is still pizza. And that fried chicken piece definitely didn't make matters better. There was no pain or shortness of breath with the swollen leg, we made sure of that. As best we could, at least. Her blood pressure is better than it usually is, too. Other than what she ate today, there doesn't seem to be other possibilities now that I've calmed down and thought about it a little more. Not that I...y'know, am a doctor and know what it is or how to accurately find out, but still. Either way, we're calling doc tomorrow, and getting what we need.

Last edited by SoulfulYin; 04-10-2021 at 04:02 AM.
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Old 04-10-2021, 01:11 AM #9
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You're doing just fine. Don't ever blame yourself for any of this.
Hopefully your mum can get moving around more. It's so important.

Get some epsom salts if you can when you shop next. Handy to have them on hand. They're very inexpensive and I find them so helpful. Just have to make sure that you don't use too much ... follow directions.

As I said get her to raise her leg higher than her heart for a while now. I'm hoping it's all good in the morning.

You take care there, hey? You've got a lot on your plate and you're such a great support for your mum.
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