Shoulder and upper back pain - discontinued vitamin b12

[godlovesatrier]

Is there a connection between vitamin b12 and muscular function? Or could there be but only in ME patients?

I recently ran out of b12 oils so I have had to stop taking it, that and b12 also has been fairly unreliable lately and I don't know why. I also have low white blood cells and as b12 seems to make me very tired, photosensitive and sleepy - I assume it could be whats causing my immune cells to look bad. (I take all the co factors, plenty of potassium, magnesium, and a good b complex. In the past I've taken all the mineral co-factors too and none of them are low on my HTMA test).

But I'm more interested to hear about muscular soreness and pain in the shoulders, upper back, shoulderblades and neck after coming off b12? As I've got terrible pains in this area since I stopped it and I've managed to pull or pinch the nerve in my upper back twice - from memory I believe these were the days I didn't take b12. So what's the connection?

As an aside, when I first started thorne b complex which incs methyl b12, I had terrible upper back and neck pain, which got so bad it was really quite painful for a few days until it disappeared and I had zero pain and zero issue in this area...literally nothing. That lasted several months, until I started to experiment taking b12 less frequently because of side effects. So I do think they are related, but I really don't understand what it all means.

So is there an anatomical connection? It feels more like muscular soreness and tenseness (more sore than stiff) - and less so nerve pain, as I don't get any numbness down my arms or into my fingers.

Thanks,

 

[Victronix]

I got terrible neck and shoulder pain when taking methylfolate initially. For some reason that was how it affected me. That would go away over time. B12 has never caused that for me.

Some people with B12 deficiencies cannot sleep without B12, and I notice it makes me sleepy at times, but not all the time. Broadly, though, if you have effects starting or coming off of B12, that generally means you need it. I've known people who aren't sick at all, have no deficiencies and notice absolutely nothing when taking it or stopping.

I take B12 Infusion sublinguals (used to be Enzymatic Therapies, now Nature's Way, unfortunately).

 

[godlovesatrier]

I think you're right, I must need small amounts at least. Although small amounts of the b12 oil doesn't seem to work nearly as well as a full dose.

I had a thought though, if b vitamins increase blood flow to the tissues especially those of the neck (for me anyway) and they are involved in healthy red blood cells (which are anything but in ME patients) - then it makes sense that put together they would ameliorate these symptoms I've got. Generally it takes a few days for the benefits to kick in.

Although the brain fog is a real pain, now I've been off it several days I've lost a lot of the benefits - as per back pain etc - but brain fog is infinitely better. Very annoying!

Thanks for the reply. I wish B12 did that to me for sleep....normally at least it keeps me awake, only recently has it started to make me sleepy.

 

[SWAlexander]

Is there a connection between vitamin b12 and muscular function? Or could there be but only in ME patients?

I recently ran out of b12 oils so I have had to stop taking it, that and b12 also has been fairly unreliable lately and I don't know why. I also have low white blood cells and as b12 seems to make me very tired, photosensitive and sleepy - I assume it could be whats causing my immune cells to look bad. (I take all the co factors, plenty of potassium, magnesium, and a good b complex. In the past I've taken all the mineral co-factors too and none of them are low on my HTMA test).

But I'm more interested to hear about muscular soreness and pain in the shoulders, upper back, shoulderblades and neck after coming off b12? As I've got terrible pains in this area since I stopped it and I've managed to pull or pinch the nerve in my upper back twice - from memory I believe these were the days I didn't take b12. So what's the connection?

As an aside, when I first started thorne b complex which incs methyl b12, I had terrible upper back and neck pain, which got so bad it was really quite painful for a few days until it disappeared and I had zero pain and zero issue in this area...literally nothing. That lasted several months, until I started to experiment taking b12 less frequently because of side effects. So I do think they are related, but I really don't understand what it all means.

So is there an anatomical connection? It feels more like muscular soreness and tenseness (more sore than stiff) - and less so nerve pain, as I don't get any numbness down my arms or into my fingers.

Thanks,

I have had high B12 and shoulder pain for a man years. Lifting or working with the arms out (peeling potatoes, washing dishes, etc.) became a painful task and I was very tired. For a long time, I ignored the pain and then it began grinding. Now the scapula muscle pups out from under the shoulder blade on both sides. The official diagnosis is Snapping scapula syndrome. How is your vitamin D level?

 

[godlovesatrier]

Vitamin D is healthy. I've been taking 8000 IU for awhile. I got it retested last week. Just waiting for my doctor to release the blood tests to me.

 

[junkcrap50]

This is interesting. I too have muscle aches and neck and trap pain mostly. It started when I took b12 and methylfolate but hasn't gone away even with discontinuing methylation supplements. I have been thinking of restarting B12 (hydroxy) at very low doses to see if it would help my pain.

 

[SWAlexander]

Vitamin D is healthy. I've been taking 8000 IU for awhile. I got it retested last week. Just waiting for my doctor to release the blood tests to me.

The reason I aks about vit. D, I would like to know if oral vit D helps?
I´m taking 2x a week 20 000 I. E. since May 2021. The latest blood test showed the very same low numbers.

 

[godlovesatrier]

Hi Alex,

The bizarre thing is on the Joshua Leisk protocol I take things that are proven to increase white blood cells like reishi extract. Yet they are still low. Although when I used to stimulate my immune system I used to get sick. I'm sure with ME patients there's a direct correlation between stimulants or immune stimulation and getting sicker. I now wonder if that's because our body's stop producing white blood cells like they are supposed to. Even if this is only for a brief moment. Would require a study to know for sure.

So vitamin D at that dose may cause an imbalance in calcium or magnesium as you need those for the vitamin D to bind properly. To be honest I'd take 8000 and just see how you get on at that dose.

Interesting @junkcrap50 I do wonder if the b12 has weakened my nerves? Maybe through new growth or healing which means they are easier to pull so I've now damaged them? As for the muscles they are incredibly sore between my shoulder blades. So I wonder if the b12 has weakened something :/ I'll start taking it again when the new bottle arrives.

Also tho I was wondering. If my neck and spinal issues have disappeared. This could be the first signs of it returning. The inflamation starts in the back and upper back and then migrates to the neck. It could even be a virus which is living in these locations. Surpressed by b12 and the other b vitamin's and then let loose on cessation.

Could be so many things I guess

 

[SWAlexander]

Hi Alex,

The bizarre thing is on the Joshua Leisk protocol I take things that are proven to increase white blood cells like reishi extract. Yet they are still low. Although when I used to stimulate my immune system I used to get sick. I'm sure with ME patients there's a direct correlation between stimulants or immune stimulation and getting sicker. I now wonder if that's because our body's stop producing white blood cells like they are supposed to. Even if this is only for a brief moment. Would require a study to know for sure.

So vitamin D at that dose may cause an imbalance in calcium or magnesium as you need those for the vitamin D to bind properly. To be honest I'd take 8000 and just see how you get on at that dose.

Interesting @junkcrap50 I do wonder if the b12 has weakened my nerves? Maybe through new growth or healing which means they are easier to pull so I've now damaged them? As for the muscles they are incredibly sore between my shoulder blades. So I wonder if the b12 has weakened something :/ I'll start taking it again when the new bottle arrives.

Also tho I was wondering. If my neck and spinal issues have disappeared. This could be the first signs of it returning. The inflamation starts in the back and upper back and then migrates to the neck. It could even be a virus which is living in these locations. Surpressed by b12 and the other b vitamin's and then let loose on cessation.

Could be so many things I guess

"I do wonder if the b12 has weakened my nerves?"
You are asking this very good question I have tried to find an answer for myself. Anytime my B 12 is in the upper range 650 - 780 (fluctuating) my muscle pain is high. Especially neck and shoulder (I have also Snapping Scapula) are very sensitive to physical stress, meaning no lifting or working much with arms.
BTW my low vita D is genetically conditioned. V-D pills don´t work for me.
Now, I´m going a totally different route. Since I always felt very good, had very little pain for months when I was for about 3 weeks at the Mediterranean ocean, much sun (meaning lots of vit D), and saltwater (iodine), I now try 2x a week sun-studio and see if my vit D goes up.

 

[junkcrap50]

Interesting @junkcrap50 I do wonder if the b12 has weakened my nerves? Maybe through new growth or healing which means they are easier to pull so I've now damaged them? As for the muscles they are incredibly sore between my shoulder blades. So I wonder if the b12 has weakened something :/ I'll start taking it again when the new bottle arrives.

I don't know if supplemented B12 can weaken or damage one's nerves. I've never heard of that, nor does it make sense to me. But a deficiency of B12 certainly can. Perhaps you have a chronic deficiency due to malabsorption, celiacs, taking metformin, excess folate, or something like that and the B12 helps just keep symptoms away. There are many causes of B12 deficiency. B12 blood tests may say you don't have a deficiency but tests can be so quirky sometimes that who knows.

 

[godlovesatrier]

Agreed. High serum b12 doesn't necessarily mean that everything's ok.

Most of the back pain has gone today and I could only apply a small amount of b12 anyway as my pump is running out.

But I think your right I obviously just need my b12 for the time being to keep the inflamation in my spine and neck at bay. It seems to now be sequestered in my upper back and shoulder.

I was reading that someone said if you do go into remission with ME your more likely to suddenly see problems that were covered up by a blanket of symptoms previously. So maybe I just have an issue in that area.

When I did Perrin technique they tell you all sorts of things which are wrong with your spine etc. I assumed it was simply marketing technique to get enhanced sales. But the lady who did it didn't come across that way.

Also I'm not sure if inflamation response is a legitimate technique or one that Dr Perrin created himself. Suffice to say my inflamation response to stimulus (hand rubbed against back) was very poor. So maybe there's just a real lack of blood flow in this area and the b vitamin's enhance this ameliorating it.

 

[Steve_Sr]

While I hate to dredge up an old thread... the coincidence is really uncanny!

I have been experiencing similar recent issues with upper back and shoulder pain. It almost feels like muscle cramps. Normally one might think that this would be due to dehydration or electrolyte issues. However, I am well hydrated and use plenty of "low sodium" salt that has plenty of potassium in it.

In concurrence with the back issues I have also noticed what appears to be delayed stomach emptying and slowed GI motility issues. This almost sounds like some of the dysautonomia issues attributed to thiamine deficiency as found by Dr. Lonsdale.

This all happened while trying to find the root cause of some B multi-vitamin side effects which mostly manifested as muscle pain (lactic acid buildup) upon use/exertion. Stopping the B multi by my FM doc has stopped these symptoms but now replaced them with the back and digestion issues.

So, in my case, this appears to be related to B vitamin issues with the stopping of the B multi. However, I am still taking:

B9 - 1000mcg DFE as Quatrafolic
B12 - 750mcg as Methylcobalamin, hydroxycobalamin, adenosylcobalamin,
TTFD (100mg) Thiamine - which has appeared to stop working.

This leaves quite a few "holes" in my B vitamin supplementation. I suspect that some of the missing ones may be required to make the 3 that I am taking work properly.

So I think that the next step is to try adding back some of the missing "Bs" with a product like this:

B-minus from seeking health.com
https://www.seekinghealth.com/products/b-minus-100-capsules

Anyone else have any observations or comments?

 

[junkcrap50]

While I hate to dredge up an old thread... the coincidence is really uncanny!

I have been experiencing similar recent issues with upper back and shoulder pain. It almost feels like muscle cramps. Normally one might think that this would be due to dehydration or electrolyte issues. However, I am well hydrated and use plenty of "low sodium" salt that has plenty of potassium in it.

In concurrence with the back issues I have also noticed what appears to be delayed stomach emptying and slowed GI motility issues. This almost sounds like some of the dysautonomia issues attributed to thiamine deficiency as found by Dr. Lonsdale.

This all happened while trying to find the root cause of some B multi-vitamin side effects which mostly manifested as muscle pain (lactic acid buildup) upon use/exertion. Stopping the B multi by my FM doc has stopped these symptoms but now replaced them with the back and digestion issues.

So, in my case, this appears to be related to B vitamin issues with the stopping of the B multi. However, I am still taking:

B9 - 1000mcg DFE as Quatrafolic
B12 - 750mcg as Methylcobalamin, hydroxycobalamin, adenosylcobalamin,
TTFD (100mg) Thiamine - which has appeared to stop working.

This leaves quite a few "holes" in my B vitamin supplementation. I suspect that some of the missing ones may be required to make the 3 that I am taking work properly.

So I think that the next step is to try adding back some of the missing "Bs" with a product like this:

B-minus from seeking health.com
https://www.seekinghealth.com/products/b-minus-100-capsules

Anyone else have any observations or comments?

I've had similar symptoms. I've had had full body lactic acid muscle burning and overall muscle pain triggered 6 years ago by methylation supplements (Fredd protocol) using methylfolate, methylB12, adenosylB12, and acetyl-l-carnitine. I have been unable to cure myself from it so far. There are a lot of possible side effects from taking methylation supplements, and most disappear over time upon stopping methylation supplements.

I would suggest that you stop, if you can (or drastically reduce), the B12 and/or methylfolate, so that you do not have continual pushing of the methylation cycle, which can deplete minerals and vitamins. Methyhlation can induce many types of deficiencies. Then try to find what you are deficient in. Perhaps stopping the folate and B12s might have your problems fade away over time.

 

[Steve_Sr]

I've had similar symptoms. I've had had full body lactic acid muscle burning and overall muscle pain triggered 6 years ago by methylation supplements (Fredd protocol) using methylfolate, methylB12, adenosylB12, and acetyl-l-carnitine. I have been unable to cure myself from it so far. There are a lot of possible side effects from taking methylation supplements, and most disappear over time upon stopping methylation supplements.

I would suggest that you stop, if you can (or drastically reduce), the B12 and/or methylfolate, so that you do not have continual pushing of the methylation cycle, which can deplete minerals and vitamins. Methyhlation can induce many types of deficiencies. Then try to find what you are deficient in. Perhaps stopping the folate and B12s might have your problems fade away over time.

My FM doc started me on a methylation supplement for a period before starting the problematic B-multi. With only the methylation supplement I didn't notice any change for better or worse. It was only after adding the B multi after a while that I noticed negative effects.

So there appears to be some wasting of co-factors involved. While all this was going on I found Dr. Lonsdale's work on thiamine deficiency and decided to see if this was a missing piece of the puzzle. I started taking 100 mg of TTFD thiamine along with magnesium aspartate. For a while I noticed some significant improvements in my OI symptoms along with EOE (which may also be OI related). While this was going on I was still taking the B multi 3 days a week. Now that I have run out of the B multi the added thiamine doesn't seem to be doing anything any more so I am likely missing co-factors that were part of the B multi.

The interesting thing about this experiment is that the B multi had 100mg of the HCL form of thiamine which, if it was being properly absorbed and put to use, should have "fixed" any deficiency. The fact that it didn't and the TTFD form did makes me think that I may have a genetic issue with thiamine transport.

 

[SWAlexander]

The fact that it didn't and the TTFD form did makes me think that I may have a genetic issue with thiamine transport.

It is a possibility, but it could be also a temporary beriberi. I had the same symptoms when my B12 was to high. If you have a genetic test, check the markers, mention here: "Analysis of thiamine transporter genes in sporadic beriberi" https://pubmed.ncbi.nlm.nih.gov/24607307/

 

[Steve_Sr]

It is a possibility, but it could be also a temporary beriberi. I had the same symptoms when my B12 was to high. If you have a genetic test, check the markers, mention here: "Analysis of thiamine transporter genes in sporadic beriberi" https://pubmed.ncbi.nlm.nih.gov/24607307/

I have done the 23 & Me (V5) genetic testing and got the Strategene report but I can't find that it checked any of the thiamine transporters. Does anyone know if this data is actually available in the 23 & Me V5 data and if so how do I find it?

 

[SWAlexander]

I have done the 23 & Me (V5) genetic testing and got the Strategene report but I can't find that it checked any of the thiamine transporters. Does anyone know if this data is actually available in the 23 & Me V5 data and if so how do I find it?

Under your profile (right uper corner) is a link click on "raw data".
When window open enter (red arrow) the DNA code you are looking for. Hope it helps.

 

[Steve_Sr]

Alright, I found the raw data but there are dozens of SLC19A2 and SLC19A3 genes listed. How does this correspond to wild type vs. variant?

 

[junkcrap50]

My FM doc started me on a methylation supplement for a period before starting the problematic B-multi. With only the methylation supplement I didn't notice any change for better or worse. It was only after adding the B multi after a while that I noticed negative effects.

It is very common to not see any changes with methylation supplements until a needed cofactor or something else is needed. And then BAM, methylation starts spinning right up. Common in the Fredd threads and happened to me. Nothing with high dose b12, a12, mfolat, carnitine fumerate. Then I switched to acetyl-l-carnitine and BAM huge methylation boost & consequently side effects. So, I believe that it will still be methylation related and you depleted some sort of cofactor - there are many. Check out Fredd's posts about cofactors, but potassium is a common one depleted with methylation.

You may also want to get your homocysteine levels checked and research homocystein & muscle pain. The latest theory, very tenuous I admit, I have about my muscle pain is that it is endothelial damange/microclot related. I've basically ruled out any micronutrient deficiency with trialing nearly every supplement and many tests. But I think my methylation supplements spun the cycle really fast and produced a ton of homocysteine, which then caused endothelial damage, increase inflammation, and cause pain. Endothelial damage can increase cogauation and more microclots, blocking capillaries, and causing micro-hypoxemia in muscles.

A doctor told me once, that the upper back, neck, shoulder (coat hanger area) has very low vascular density of the muscles. Which is why a lot of muscle pain and exhaustion occurs there. I don't know if it's true, and sort of doubt it, but just fyi.

So there appears to be some wasting of co-factors involved. While all this was going on I found Dr. Lonsdale's work on thiamine deficiency and decided to see if this was a missing piece of the puzzle. I started taking 100 mg of TTFD thiamine along with magnesium aspartate. For a while I noticed some significant improvements in my OI symptoms along with EOE (which may also be OI related). While this was going on I was still taking the B multi 3 days a week. Now that I have run out of the B multi the added thiamine doesn't seem to be doing anything any more so I am likely missing co-factors that were part of the B multi.

Thiamine is an important cofactor and can be very helpful if given in high doses. TTFD vs HCl has a big absorption difference. So the TTFD is going to be more effective.

 

[Steve_Sr]

It is very common to not see any changes with methylation supplements until a needed cofactor or something else is needed. And then BAM, methylation starts spinning right up. Common in the Fredd threads and happened to me. Nothing with high dose b12, a12, mfolat, carnitine fumerate. Then I switched to acetyl-l-carnitine and BAM huge methylation boost & consequently side effects. So, I believe that it will still be methylation related and you depleted some sort of cofactor - there are many. Check out Fredd's posts about cofactors, but potassium is a common one depleted with methylation.

With the MTHFR mutation and other symptoms my FM doc put me on the methylation supplements.
I think that I am going to stop the methylation stuff until I can see how the new B-minus supplement affects things.

Also initially tried acetyl-l-carnitine with no noticeable change so FM doc took that off the plate.

You may also want to get your homocysteine levels checked and research homocystein & muscle pain. The latest theory, very tenuous I admit, I have about my muscle pain is that it is endothelial damange/microclot related. I've basically ruled out any micronutrient deficiency with trialing nearly every supplement and many tests. But I think my methylation supplements spun the cycle really fast and produced a ton of homocysteine, which then caused endothelial damage, increase inflammation, and cause pain. Endothelial damage can increase cogauation and more microclots, blocking capillaries, and causing micro-hypoxemia in muscles.

Initial homocystine was not terribly bad at 12.5 initially but my FM doc wanted to see it lower and hence added the problematic B supplement. This actually brought it down to 8.0 at the expense of the side effects.