Achey, poor circulation

[OneToughCanary]

So, I'm going along trying to get B12 and Folate going, and I'm having symptoms I'm trying to decipher. The latest is that I wake up quite achey, especially in my lower legs, and I seem to have poor circulation, almost feeling numb in some areas. Does that strike y'all as being from too much/too little B12, too much/too little Folate, wrong type (I've been using MethylB12 and MethylFolate, although I used HydroxyB12 this morning for a try), or is there something else that might explain poor circulation. The area around my ankles sometimes look a pale purplish through my fair skin. My hands aren't bluish, although my fingernails are rather white instead of pink. Any thoughts? (Currently doing just 500-100 mcg B12 and 100-200 mcg MFolate per day.) ...I *am* increasing my folate very gingerly. That seems to have made a nice difference in the skin spots I reported in a different thread, but this circulation thing is an issue -- seems like something that could get bad, maybe even dangerous, so I want to proceed with caution and advice. (OK; I should read -- I'm just now noticing some other threads that might be enlightening. Will still appreciate any specific thoughts anyone may want to share here.)
Thanks,
OTC

 

[sb4]

Are you supplementing other B's like thiamine? I suspect that when I started messing around with folate and b12 years ago it lead to a massive fall in health possibly from inducing a B1 deficiency.

 

[OneToughCanary]

No, I haven't been supplementing other Bs. Maybe I should try adding Thiamine, as it keeps getting mentioned. I will say I tried some methionine last night, and was much less achey this morning. The B12/Folate angle is helping me in major ways, so I think I'm on the right track...but getting in a groove with it all is really challenging as there are so many connections to keep in balance. Thanks for the input.
OTC

 

[Mary]

Are you supplementing other B's like thiamine? I suspect that when I started messing around with folate and b12 years ago it lead to a massive fall in health possibly from inducing a B1 deficiency.

I was thinking of the exact same thing, especially because of the achiness in the lower legs.

I recently went though something similar - it's a chain reaction. I increased my magnesium so I could sleep better and it did help, and that depleted my phosphorous so I had to increase that, and that caused my potassium to tank so I had to increase that, and was feeling better and then got fatigued and achey, especially lower legs - and I thought of thiamine. I'm already taking 300 mg benfotiamine and I added on more pill (150 mg) and today the achiness is gone and energy has returned. It's crazy!

So @OneToughCanary, your problem may very well be low thiamine. It's generally also a good idea to take a good B complex whenever you are supplementing with one of the Bs to try to keep everything in balance.

Also, are you on top of your potassium levels? It's very common for potassium to tank, often badly, when starting B12 and folate, because cells start dividing more rapidly etc. and this uses more potassium, inducing a functional deficiency.

I'd suggest also reading about refeeding syndrome, to which I think persons with ME/CFS are very prone. Generally refeeding syndrome is only supposed to affect people who are starving or anorexic or severely malnourished but I've experienced it many times and I think we're prone to it. Check this out: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/ and this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2654033/

The main nutrients which are affected are phosphate, thiamine, potassium and magnesium.

 

[OneToughCanary]

Will check it out -- thanks! I am being mindful of potassium. I am taking 99 mg/day...which I realize may be a pittance relative to the general wisdom here...but I'm nervous about taking too much, as I understand too much can be very dangerous as well, yes? Any wisdom on how to manage potassium levels without going off the deep end in either direction?

 

[Mary]

Will check it out -- thanks! I am being mindful of potassium. I am taking 99 mg/day...which I realize may be a pittance relative to the general wisdom here...but I'm nervous about taking too much, as I understand too much can be very dangerous as well, yes? Any wisdom on how to manage potassium levels without going off the deep end in either direction?

Hi @OneToughCanary - the RDA for potassium is around 4700 mg - that's the minimum - so the 99 mg you're taking is 1/47 of what we need, which is not very much at all and it is almost impossible to get too much potassium from food sources unless one's kidneys are bad. What I suggest people do when they think they might have low potassium is to get some low-sodium V8 - it's higher in potassium than regular V8 - and drink 2 or 3 glasses and see how you feel some hours later. If you start to feel better, then there's a good chance your potassium was low.

When I first started taking folate 8 years ago, it boosted my energy initially, and then 2 or 3 days later I developed severe fatigue, which I knew was due to low potassium because of reading about this complication. I started taking potassium and titrated up to 1000 mg in divided doses over 2 or 3 days - that's roughly 25% of the RDA and the severe fatigue finally went away. I learned I needed to keep taking potassium, which I've done ever since. I also drink low-sodium V8 several times a week. Interestingly I realized I had had symptoms of low potassium off and on before even starting the folate, but I never knew what it was - it was just some awful fatigue that would hit and I was helpless to do anything about it until I learned what it was. People with ME/CFS can have low intracellular potassium despite normal blood work - mine was always in the low-normal range on blood tests. See here.

So you very well may need more potassium. I like low-sodium V8 because it's low in calories. I don't think a few bananas would be enough, though they might help. If you start a supplement, just start low and go slow. e.g., when I first took it, I think I took 200 mg. 3 x a day in divided doses, and I worked up to 1000 mg over 2 or 3 days. So just don't take a large amount all at once, do it in divided doses if you're going to take it and work up gradually if needed. Some people on this board take much more than me. And just recently I had to increase my potassium which I did with no problem.

BTW, here's a tip - if you're replying to someone, it's good to either tag them by putting the "@" sign in front of their name like @OneToughCanary or @Mary, or hit the reply button to their post - either way they will get a notification that you are responding to them. If you're responding to a lengthy post, it's a good idea to just highlight the portion you are responding to and the reply button will pop up, it helps keep threads more manageable.

 

[OneToughCanary]

Hi @OneToughCanary - the RDA for potassium is around 4700 mg - that's the minimum - so the 99 mg you're taking is 1/47 of what we need, which is not very much at all and it is almost impossible to get too much potassium from food sources unless one's kidneys are bad.

OK; this is very interesting. I've known that the FDA limits potassium pills to 99 mg, and I'd thought that was because of the dangers of overdose at levels much higher than that. So I've scratched my head at the notion that the RDA is so much higher. So, I did a search. Wouldn't you know my answer came up in a post from this forum...the people on here are really amazing. For anyone else who has scratched their head, here's the link...

https://forums.phoenixrising.me/ind...mental-potassium-is-safe-and-what-form.17521/

From what I understand, the reason the FDA limits the pills is not because of getting too much but because of too much being concentrated in the digestive tract in one spot as it can eat away at the walls. ...so...does that mean that it if I'm going to take much more than 99 mg I should use a capsule form and not a tablet, so it'll disperse and not sit there in one place?

Thx for the tips on posting, too.
OTC

 

[Mary]

From what I understand, the reason the FDA limits the pills is not because of getting too much but because of too much being concentrated in the digestive tract in one spot as it can eat away at the walls. ...so...does that mean that it if I'm going to take much more than 99 mg I should use a capsule form and not a tablet, so it'll disperse and not sit there in one place?

that's interesting - I'd never heard of that before, that large potassium chloride pills can create an acid which can eat away at stomach walls - okay. I don't know if all potassium tablets have this potential issue or just potassium chloride.

There are several different forms of potassium. I first tried potassium citrate and it worked well in alleviating my symptoms of hypokalemia. However, after a short while it began to irritate my urinary tract, started to develop a UTI and I switched to potassium gluconate (capsules) and have had no problems with them. I take 200 - 300 mg at a time, 4 x a day.

So I'd probably just avoid potassium chloride tablets, because odds are you may need more than 99 mg at a time. I did read that taking large doses of potassium all at once could be problematic - whatever you end up taking (if anything), I'd divide the doses throughout the day.

 

[OneToughCanary]

@Mary ; good tip about potassium gluconate.

One other question about potassium. I have had symptoms before that I discerned were from low potassium -- heart palpitations/racing heart, and the classic cramping etc. But I'm not having those particular symptoms right now. Is it possible for low potassium to be the reason for other things like heavy legs, circulation problems, really low energy, etc., without the racey heart or cramping. I've not thought of potassium since I don't have those symptoms; since I've had them before I'd have thought they'd be my first sign.

Here's one possible clue. Sometimes lately I've had a salty taste in my mouth. I've had it before but never pinpointed the cause. Is that a sign of low potassium? If not, any clues?

OTC

 

[Mary]

@OneToughCanary - first, it's good that you're aware of some of the possible signs of low potassium. When my potassium tanked badly after starting methylfolate, my chief symptom was severe fatigue. I don't recall a racing heart or cramping, though now when my potassium gets low, I generally get spasms in my feet or lower legs. So all I can tell you is your current symptoms might be due to low potassium, or they might be due to something else - how's that for unequivocal answer? Seriously though, I just don't know. If I were you, I'd get some low-sodium V8 or other high potassium food/drink and ingest a lot of it and see if it helps. If it does, great, and if it doesn't, then you'll have to keep investigating.

Re your poor circulation - I googled circulation and vitamins and read that poor circulation and numbness can be caused by a B vitamin deficiency. I just barely grazed the surface. One mentioned B12, another thiamine, another just "B vitamin". Of course there can be other causes too. I'd suggest starting a good B complex immediately and see if it helps. My sister who used to be a vegetarian (but does not have ME/CFS) told me several years ago she had tingling and numbness on different parts of her body, it would move around. I told her to start B12 and within a week her symptoms disappeared, but you're already taking B12. Lack of other B vitamins could be contributing to your symptoms. I don't have a simple answer for you but again urge you to try a B complex. Jarrow B Right is a good one. Are you working with any sort of health practitioner who can help you with all this?

 

[OneToughCanary]

@OneToughCanary - I don't have a simple answer for you but again urge you to try a B complex. Jarrow B Right is a good one. Are you working with any sort of health practitioner who can help you with all this?

Thanks so much, Mary. Yes, I do have a practitioner -- a functional medicine MD who actually specializes in epigenetics/MTHFR, etc. (You'd think I'd be further along than I am, but I was so bad off and so sensitive, it's been a long journey. ...and things would seem to not be working, so I'd get off the bandwagon, when if I'd just understood some nuances I might have made more progress before now. I'm happy to finally be making some real progress now, though.) I really like my doc, but he only has so much time for me to pick his brain about things. This area seems to require such delicate balancing I end up doing a lot of research and guesswork myself in between consult appointments with him. Plus, I've seen info on this site that I've not heard from him -- like needing lots of potassium; he's not brought that up -- not as far as needing such a large amount relative to what I've been taking. (...which makes me scratch my head; he's really a good doc.)

...which reminds me of another question. Is potassium one of those things that you can be functionally low in but the deficiency not show up on bloodwork?
OTC

 

[Mary]

...which reminds me of another question. Is potassium one of those things that you can be functionally low in but the deficiency not show up on bloodwork?

Absolutely! See what I posted above (and repost here) for a link which explains why:

People with ME/CFS can have low intracellular potassium despite normal blood work - mine was always in the low-normal range on blood tests. See here.

And don't forget about thiamine - I keep thinking of the achiness in your lower legs and thiamine - http://www.stewartnutrition.co.uk/nutritional_emergencies/acute_thiamine_deficiency.html

Richvank was an extremely knowledgeable member who unfortunately died a few years ago. He posted a lot about methylation and raising glutathione levels, but he never mentioned potassium issues until they were brought to his attention, due to Freddd's posts. So I'm sure your doctor knows a lot, but we still have to do our own research.

 

[Critterina]

So, I'm going along trying to get B12 and Folate going, and I'm having symptoms I'm trying to decipher. The latest is that I wake up quite achey, especially in my lower legs, and I seem to have poor circulation, almost feeling numb in some areas. Does that strike y'all as being from too much/too little B12, too much/too little Folate, wrong type (I've been using MethylB12 and MethylFolate, although I used HydroxyB12 this morning for a try), or is there something else that might explain poor circulation. The area around my ankles sometimes look a pale purplish through my fair skin. My hands aren't bluish, although my fingernails are rather white instead of pink. Any thoughts? (Currently doing just 500-100 mcg B12 and 100-200 mcg MFolate per day.) ...I *am* increasing my folate very gingerly. That seems to have made a nice difference in the skin spots I reported in a different thread, but this circulation thing is an issue -- seems like something that could get bad, maybe even dangerous, so I want to proceed with caution and advice. (OK; I should read -- I'm just now noticing some other threads that might be enlightening. Will still appreciate any specific thoughts anyone may want to share here.)
Thanks,
OTC

My thoughts went immediately to niacin/niacinamide/nicotimamide-riboside. Not saying we are the same, but for me, I use a sublingual NADH or ENADA (maybe that's the brand?) 20 mg, and for me it's when the weather is cold that I get what I get. It's something to look into. Best wishes.

 

[OneToughCanary]

Absolutely! See what I posted above (and repost here) for a link which explains why:


And don't forget about thiamine - I keep thinking of the achiness in your lower legs and thiamine - http://www.stewartnutrition.co.uk/nutritional_emergencies/acute_thiamine_deficiency.html

Thank you, Mary. I really appreciate your helpfulness. ...and patience with questions about things you've already posted. I will dig in to those links. Meanwhile...

I've been having good progress as I've been tinkering, although I'm still not sure what's doing what. These are the things I've been juggling/tinkering with lately, followed by some questions...

Current status:
* slowly upping my Mfolate -- am now up to 200 mcg 2x/day
* slowly upping my B12 -- am at 500 mcg 2/xday (sometimes MethylB12, sometimes Hydroxy B12) -- doc says that even though I'm undermethylated my genetics give me a "narrow path" to walk and that I may get overmethylated easily if I'm not careful. So, sometimes if I feel I've been dealing with overmethylation symptoms I'll change to Hydroxy b12 with the Methylfolate. If I'm correct, not only does hydroxyB12 not contribute additional methyl, it also helps reprocess extra methyl back around the cycle. (?)
* occasional methionine at 250-500 mg -- still tinkering, but it seems to help a good deal
* B1 (Thiamine) -- introducing at 25 mg/day
* (have not really upped my potassium yet; plan to be looking into that...and needing to order a form I can take at greater amounts than 99 mg at a time per previous post)
* By the way, I'm currently also taking a round of Alinia to address possible parasites. I'd thought I'd had Lyme and/or parasites or some sort of infectious thing for a long time, many years, and had become desperate -- no hopeless -- thinking "the bug had won," as nothing had seemed to conquer the symptoms I identified with infection. Since starting in on B12 and related methylation supplements that game has changed. (!!!) Slowly I seem to have gained significant ground in that battle, but at this point seem to still need some sort of antimicrobial.

Here are my thoughts/questions:
* The need for a multi-B supplement resonates. I'd started one a while back on my doc's advisement, but was reacting to the niacin. I eliminated it by finding all the other Bs in individual supplements...but after starts and fits, going from one ditch to another, I ended up clearing the board and restarting with just some simple basics, adding in things one at a time, since one little wrong turn can tend to throw me for a loop. However, since getting a little more mileage under my belt with the B12 I no longer react poorly to niacin. In fact, @Critterina , it has come in handy at times when I've had overmethylation symptoms. I'm wondering if I'm to a point where I could handle a multi-B better...and if maybe I'm needing one. The one my doc had prescribed was B-Minus by Seeking Health (Ben Lynch). It contains 25 mg Thiamin, 20 mg riboflavin, 180 mg niacin, 20 mg B6, 500 mcg biotin, 150 mg pantothenic acid. Any thoughts about those amounts of things, given my status?

* Regarding the Niacin... @Critterina -- I'm particularly hesitant about introducing that much niacin on a regular basis. I've only been using it here and there when I've felt overmethylated and am concerned that using it regularly would drain my methylation status. ...but perhaps I've not understood that even though niacin is a "demethylator" it's actually needed in this cycle to keep things rotating around the cycle...yes? I.e., is it possible that someone who's desperately undermethylated may still need to be taking a good bit of niacin *at the same time* they take supplements to increase methylation, and not just as an antidote for when they get overmethylated? If so, are there any tips for how to balance niacin, a methyl-reducer, with the methyl-donor supplements so as to make it all work in a dance instead of in a contradictory fashion?

* @Critterina , you've mentioned niacin/niacinamide as if perhaps that's what I'm really needing, yes? ...then you mention that you take NADH or ENADA, and it seems you are saying those are types of niacin or are related to niacin. I'm not getting that connection; can you explain?

I have other questions, but I know this is getting long, so I'll leave it at this for now and go work on reading some of those links. (Is this *way* too long of a post? Please let me know if I'm being unwieldy.)

Appreciatively,
OTC

 

[OneToughCanary]

@Mary OK, Mary, I've just posted above and would love your input there, too, but I've just read the link you posted on Thiamin deficiency ( http://www.stewartnutrition.co.uk/nutritional_emergencies/acute_thiamine_deficiency.html ) and would like to mention some other things...

I'm thinking that, although I may very well be needing Thiamin for other reasons, it's probably not what's causing the achiness in my legs. Here's some food for thought regarding that...

* The achiness is most noticeable in the morning right when I get out of bed (even before I get out of bed but increasing when I get up and walk), not just after exercise as the article mentions.
* The achiness is not just in my legs but is often in my whole body. It's just that it's often most concentrated in my lower legs.
* It did improve significantly when I took the advice of @alicec and started increasing Mfolate...although I did start throwing in some methionine around the same time, too.
* I've been tinkering with Thiamin. Sometimes it seems to make me feel better, sometimes worse -- seems like perhaps the energy it contributes is sometimes a good thing and sometimes just serves to rev the engine on a stuck methylation cycle, like maybe a racey car stuck at a red light.
* With the upping of Mfolate and with taking methionine, the achiness has been much less of an issue...and the spots on my face reported in a different post have pretty much gone away, so I'm wondering if perhaps the main thing I need to do is to just keep upping my B12 and Mfolate. (?)

My main question here is -- what are the other best guesses for what causes achiness when you're dealing with methylation issues?

OTC

 

[Mary]

Hi @OneToughCanary - First, I'm not an expert on methylation by any means. So if increasing methylfolate helped with the achiness, that's great. That very well may be what you needed. And if methionine does the same thing, I'd keep going with what is working for you. And this may be all you need to do.

Re thiamine and aching - when my thiamine was low, I ached all over, but particularly in my calves. And I woke up achy - before I got out of bed and moved around. I'm not saying low thiamine is an issue for you, just that it might be but you do have to go slow with it and it is very powerful. when I first took it, I had to start with low doses. it initially boosted my energy but then caused my phosphorous to tank. And I figured out it was phosphorous tanking because I'd read about refeeding syndrome and then I drank a lot of kefir and the bad fatigue from low phosphorous dissipated.

You might try baking soda when you wake up so achy - it can help reduce acidity. I sometimes drink 1/2 tsp. baking soda in 8 ounces of water, but make sure it's on empty stomach because it will neutralize your stomach acid.

This is all I can think of, good luck!

eta: One more thing - I strongly again suggest you get some low-sodium V8 and drink say 3 glasses and see if you feel better after some hours. You don't have to start a supplement right away, but this could very well give you an indication whether or not you need a potassium supplement.

 

[OneToughCanary]

Hi @OneToughCanary -

Re thiamine and aching - when my thiamine was low, I ached all over, but particularly in my calves. And I woke up achy - before I got out of bed and moved around. I'm not saying low thiamine is an issue for you, just that it might be but you do have to go slow with it and it is very powerful. when I first took it, I had to start with low doses. it initially boosted my energy but then caused my phosphorous to tank. And I figured out it was phosphorous tanking because I'd read about refeeding syndrome and then I drank a lot of kefir and the bad fatigue from low phosphorous dissipated.

eta: One more thing - I strongly again suggest you get some low-sodium V8 and drink say 3 glasses and see if you feel better after some hours. You don't have to start a supplement right away, but this could very well give you an indication whether or not you need a potassium supplement.

Good thoughts. I will keep tracking on the B1/Thiamin. The refeeding thing makes sense, too. Also, I've just ordered an electrolyte powder with 1000 mg potassium citrate per serving. Non-GMO, no sugar, and I like that it's just electrolytes, nothing else to cloud the picture. It's this one on Amazon, for anyone else who may be looking...
https://www.amazon.com/gp/product/B07BVWRGBL/ref=ox_sc_act_title_1?smid=A3GA00O5ARZB8F&psc=1

Didn't see your recap about V8 until now, but that's still a good idea, too.

Thanks, everyone, for all the great input.
OTC