Have been using this site for a number of years and posted several times Finally a diagnosis of the reason why I have low B12 ,as do both my adult kids .Always thought this was related to pernicious anaemia ,but following a car accident last year I now know that was incorrect
Fibromyalgia was the cause of the low b12 and the accident excallated the symptoms and finally we all had a diagnosis.My kids like me have occasionally had various symptoms,bad knees brain fog etc
Following months of pain and stiffness have just found that Magnesium is helping with the pain etc
Still take a daily b12 sublingual and folic acid etc Have come back to post on this site cos wonder if any body else may be in the same situation and this may help others cos this has taken 7 years to get here ,good luck
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may61
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Fibromyalgia is diagnosed by exclusion, like MS, through a gradual process of ruling out other causes. Many of the symptoms overlap with B12 deficiency. But fibromyalgia does not, in and of itself, explain why a B12 deficiency has occurred.
Other causes of B12 deficiency listed in the following reply by wedgewood
Going through your old posts I see you have B12 deficiency with neurological symptoms since at least 6 years back? I think if you did have fibromyalgia it would be very difficult to distinguish that from the neurological damage associated with B12 deficiency. I can run through the fibromyalgia symptoms list and I have almost all of the symptoms too, but I know the cause, untreated B12 deficiency that had progressed to neurological damage. I'd be intrigued to know how your doctor diagnosed fibromyalgia despite the symptom overlap with B12 deficiency.
Was diagnosed by full bloods and tests for all the other things it might have been B12 I believe is a symptom of fibromyalgia and when I look at my past notes you can see that is what it is .It follows a back end car crash and whiplash ,concussion .
I spent several years thinking it was pernicious anaemia but I now know for certain it is fibromyalgia.It defo comes from my mother and I would say I have passed it to my two kids
Even the lady at the brain injury service says it definitely is fibromyalgia agrees with my doctor
I found this resource from the Royal College of Physicians to have some useful information on the process involved in making a Fibromyalgia diagnosis : rcplondon.ac.uk/guidelines-....
I think it would be very difficult (I would say almost impossible) to exclude symptoms of severe B12 deficiency when testing for fibromyalgia. Fibromyalgia cannot be diagnosed by a blood test and there are no unique symptoms of fibromyalgia that one might not expect to find at least to some degree in a patient who has/had a severe B12 deficiency with neurological damage.
A diagnosis of exclusion would require ruling out the neurological damage from B12 deficiency as a possible cause. I do not see how this could be done in your case so I dont understand how a fibromyalgia diagnosis could be made.
A fibromyalgia diagnosis has no additional explanatory power - it does not explain why the B12 deficiency occured. The causes of fibromyalgia are also unknown. As mentioned by others below, many B12 patients are given a fibromyalgia diagnosis, which amounts to a kind of 'get out of jail free' card for the doctor - the patient gets a "diagnosis" and the work is done, when actually the real illness has not yet been found.
Some studies report that fibromyalgia patients respond well to B12 injections, suggesting that at least some fibromyalgia patients are misdiagnosed and are actually B12 deficient. Given the wide variations in accepted "normal" ranges for B12 this probably isnt too surprising - there are several folks here who were B12 deficient but whose blood levels never reached the low thresholds set. My B12 never got below 210 on inadequate supplementation although I had/have severe neurological pain/symptoms.
You may indeed have fibromyalgia but such a diagnosis would be almost impossible in someone with damage from a severe B12 deficiency. And the diagnosis explains nothing in relation to the B12 deficiency.
I think damage from a severe b12 deficiency would give the ideal symptoms for a Fibro diagnosis. So I'm not sure why you think it would be impossible?
From what I've been reading over the past few weeks. I believe NICE uses clever people to create pathways, based purely on economic grounds. It's running like a business, this own brand product is dirt cheap, we'll put it on the bottom shelf. And this shiny expensive product on the top shelf. We make little profit on the own brand but loads on the shiny one. Except the NHS isn't making money on the expensive drugs. It's losing money, but the decision makers in the NHS and the orther corrupt partnerships, are getting kick backs, so allow it.
They control what blood tests are routine given and not given. Massage the ranges and ensure most people just fall outside range. It happens with thyroid patients aswell. Their genuine illness is reclassified as depression or FM and the drugs given are more expensive. Patient can also be regarded as 'mental' and so legitimately, gaslighted.
If you regard fibromyalgia as merely a collection of symptoms rather than a true diagnosis of a real underlying medical condition, then B12 deficiency presents with a collection of symptoms which many doctors would identify as fibromyalgia.
However, most of the resources I've read seem to accept fibromyalgia as a real disease and not merely a collection of symptoms which could potentially be caused by some other underlying condition.
However, its strange they accept it as a real medical condition, yet no idea of its cause, apart from a lot of speculation: amygdlya overdrive, vagnus nerve and others.
I wonder if 'they' have even considered something simple like B12? I guess not, because 'they' who do the research, or fund it have nothing to gain. Far better to create conditions and drugs that 'help' (who it helps is another matter). Similar thing happend with depression. Suddenly everyone had it and were given anti depressants. When you have these vaguely defined conditions, anything goes.
With respect, May61, I don't think FM is hereditary, but PA most definitely is. May I ask what led you to believe you had PA for years? Maybe some tests? The reason I ask is because, PA can be passed down and if so, it is important that anyone you think is suffering from FM symptoms, could very well have PA.
Often in standard CBC blood tests, they don't run B12, MMA, IFAB or Homocysteine. And doctors are not very educated on B12D or PA so often it goes misdiagnosed for decades.
Those test will back up any PA symptoms. B12 is not always a clear sign as those other things I mentioned can mask a deficiency. Also, one does not need to be anemic to have PA. I am not and I have a conclusive positive IFAB for PA.
I think it is really important if you think others family members are suffering like you are, to have those particular test run. Think about uncles, aunts, grandparents, cousins too.
Also, PA starts in the gut so if any of you are experiencing unexplained gut problems or supposed IBS, it could be something else. If anyone suffers from Crones disease,
Someone gave me this link when I first came here. It has extensive symptoms
I was diagnosed with fibromyalgia but have no fibro symptoms providing I get enough b12 so in my case I'm pretty sure B12 deficiency caused the fibro type symptoms.
B12 deficiency can be misdiagnosed as many other conditions.
If you have time, might be worth tracking down the local B12 deficiency guidelines for your ICB (Integrated Care Board) or Health Board and comparing them with BSH/BNF and NICE CKS links.
Read blog post below if you want to know why I urge UK people on the forum to track down their local B12 deficiency guidelines.
I just wanted to say, your posts are excellent - highly informative and thorough. I am super appreciate of this group and the assistance and support this has given me in such a short period of time. After only 13 days of prescribed B12 SI loading treatment, I feel like a new person already. Next step - collate information and write to my GP, with supporting letter already provide by private consultant - found through this formum and the PA society. The links in this post alone provide me with what I need to properly advocate for myself (and others) within the NHS framework... and others. Priceless. Thank you. 💗
I have fibromyalgia, it is a good word to describe our symptoms. However it is not a cause. They don't know the cause. So to say FM causes B12 deficiency is wrong.
B12 deficiency is a definitive diagnosis and a cause of symptoms that are uncannily similar to FM.
The medical community like FM, its a way to rid of us, or give lots of medications. I've never liked the FM label becuase its the same as saying you've got a 'headache' when you say your head hurts. It doesn't give any clue why you have a headache and it doesn't offer any answers. B12 deficiency is something concrete, and can be treated, simply, cheaply and easily.
I wholeheartedly agree with all the comments here that fibromyalgia doesn’t cause B12 deficiency. I was given that “catch-all” diagnosis 20 years ago. (Which I didn’t accept back then or now.) After 2 decades of medical tests, and tons of research and therapies I feel confident in saying that fibromyalgia is a convergence of multiple medical problems that need to be eliminated before fibromyalgia is accepted as a diagnosis. I do not mean to offend, truly I don’t, but I consider fibromyalgia to be an offensive, dismissive diagnosis. Likely your B12 deficiency contributed to the symptoms of this syndrome but that is what I think fibromyalgia is… a very painful and disabling syndrome caused by undiagnosed underlying problems.
Fibromyalgia is, at best, a diagnosis of exclusion, as Technoid said. I do think that having multiple medical problems that overlap can lead to B12 deficiency if the deficiency is not addressed. Again, I do not mean to offend. I had a car accident that nearly completely disabled me for 2 years but it was whip-lash and resulting spinal problems that caused the chronic pain. I feel for you. Just getting that diagnosis is illustrative of how miserable you are.
B12 is a common supplement for increasing energy. It's available in several forms, including injections, tablets, and sublingual (under the tongue) forms.
A few (but limited) studies suggest that low B12 levels may be involved in fibromyalgia and chronic fatigue syndrome. If so, it's possible that they are, at least in part, responsible for the low energy levels typical of both conditions.
Research on B12 supplements for these illness has just begun, but what little we have is promising. A 2015 study of B12 injections showed a positive response, especially in those who were also taking daily folic acid supplements.2
Many healthcare providers disagree with this and consider B12 injections archaic and unsupported by scientific evidence.3 Some healthcare providers and researchers, however, say anecdotal evidence supports B12 supplements for achieving and maintaining higher B12 levels in people with these conditions.
Both myself and daughter have been diagnosed with FM and I were diagnosed with M.E in my younger years. It sounds as if your now getting the correct treatment and care.
I hope you soon make progress and start to enjoy like once more .
Are you getting B12 injections from your NHS doctors?
If your B12 injections were stopped, do you know why they were stopped?
B12 deficiency can lead to permanent neurological damage if treatment is not adequate, including damage to spinal cord.
I'm concerned about whether you and your family members are getting enough B12.
Some forum members manage their PA/B12 deficiency with high dose oral supplements but many on here, including myself, report that oral supplements are ineffective.
I was diagnosed with FM, also tested for MS, everything under the sun was diagnosed incorrectly, until finally taking anastrozol after radiation, my symptoms blew up and i finally got the correct diagnosis of PA. FM is often diagnosed before PA. One of my doctors called it a BullS diagnosis. He also said doctors fall back on it when they don't have any other answers for your overall pain and symptoms. That was probably 15 years before i was correctly diagnosed with PA. PA symptoms mimic a lot of other things, or they mimic PA actually, because in my mind, PA is the mother of all symptoms. It encompasses so many symptoms. I have to say, I would take the word of the amazing people in this forum over any doctor I've ever had in terms of knowing if it's PA or not. Or anything about b12d. Doctors are clueless about PA and a good doctor would admit that.
Have you had any of these tests? They can't go by b12 serum levels alone. Also, you don't have to be anemic to have b12d.
MMA -if this is high you have PA
IFAB -intrinsic factor antibody. If this is positive, you have PA
Homosistene -if this is high you probably have PA and it can mask b12d
I saw a doctor at hospital, I asked for these tests, and he said the system wouldn't allow them. So I only got serum b12.
I firmly believe they do tests which deliberately won't be conclusive for many people. Who are wrongly sent on their way with ''it's all in your head''.
At the time of FM diagnosis I don't know. I've only had 4 b12 tests in my life.
I had low B12 after Metformin, I think 100-200. The shite dr said all ok.
Years later found b12 for sale in Asda so took that religiously. Another dr scared me and said my level was dangerously high. So I stopped and my levels just dropped.
Roll forward 2020/1 and my level was 300 ish. Then jumped to 400 ish after eating meat/fish.
I think my levels are sub optimal, and taking other vitamins gives a false picture. I have all the symptoms for sure. Worst is how my brain feels, stupid and slow.
Well, Metformin is supposed to be a problem. As well as Omeprozol. So you have diabetes? 100-200 is definitely deficient. And your not a vegetarian? Were your B12 levels high because you had injections? Injections will make your B12 high but it is not dangerous. You can not OD on B12. It went up after eating fish and meat? For a prolonged time? I do not know this, but I assume it would take a while for meat and fish to bring up B12 levels permanently. But PA sufferers can't absorb B12 due to lack of intrinsic factor. So taking B12 and getting a high reading is a little confusing. If you are supplementing with other things like folic acid, that might cloud the B12 readings. Someone told me once, to try not to have any B12 in your system when you go to take blood tests.
If you can afford your own private lab tests (if docs won't approve these tests) I would do it right once and for all. If it was me, and I am just suggesting and if someone disagrees they can help me out. But I would not take any supplements for maybe a week. and then get the 5 most important tests. These will give you your answer. If you can only get a few tests, I think the IFAB is pretty important. Someone else might know better. Anyway that is my limited knowledge.
If your blood serum b12 increases when you take tablets, does that rule out PA? If yes then I don't have it.
I was vegetarian all my life, until last year. It took 6-10 months for my level to increase after starting to eat meat/fish. I was also randomly taking b12 tablets 500mcg.
My folate levels have been low, which is weird as I eat ALOT of dark green veg and veg in general.
I have diabetes now. But was originally given Metformin for PCOS so I've probably always had insulin resistance.
Will get the following: MMA, IFAB, Homocysteine done.
Well, I hope someone chimes in because you have a complicated case. I was a vegetarian for 20 years. But I also had PA but didn't know it. You have an autoimmune disease in diabetes and you took Metformin. So I see two possibilities:
You went a long time as a vegetarian and developed neurological effects from lack of B12. A vegetarian can absorb B12 normally. You have to take B12 as a vegetarian and other supplements. A member named Technoid would be able to help you with that. But as a vegetarian, you depleted your b12. Your liver store B12. Lets say your mother was a vegetarian as well and she never took B12, if you were breast fed, you would never get the B12 you needed to develop etc. Also there would be none to be stored in your liver. If you ate meat at some point or took B12 you stored it in the liver. If you don't take B12 regularly, your body with use the liver reserves. It takes 5 - 10 years to deplete that. It can take another 10 years to feel the slow and sneaky symptoms of B12d. So decades can go by before you realize this. By then, you can develop irreversible symptoms. Taking b12 or getting injections will replenish things but some things may never get back 100%. It is a very slow process to regenerate your body and reverse what it can.
The other possible issue, is that Metformin and/or your autoimmune issues could have damaged your ability to make Intrinsic Factor. Which if that is the case, you could have PA. I don't know how long you took it or how long it takes for that kind of stuff to damage IF production, but that is a possibility. So I would do those tests just to be sure. The reason docs may be fighting you, is because they like to consider B12d by diet to be self induced and they don't take into consideration that you may have other complications like Metformin and diabetes to complicate it, or it could run in your family. You need to show them information about Metformin and diabetes and the effects it has on B12 production to prove your case of needing those tests. or you can pay out of pocket for them yourself.
I was a vegetarian for 20 years for several reasons, but one reason, was I had major gut issues. I had a lot of surgeries on my abdomen, and was given a lot of meds for hormones etc. so I also had a complicated case. My vegetarianism did not cause my PA but it certainly made things worse in the long run. I totally understand being a vegetarian, so if you want to continue that, you have to learn how the body works and how to keep things level. The human body is designed to regulate itself on its own, but when we take away the most important element it needs to build red blood cells, DNA, and keep our nervous system healthy, it can not do its job. So you have to regulate your body your self. It is an extremely complicated balance. I did not know any of this when I was a vegetarian and I did not do myself any favors. But I thought I was. Technoid is very knowledgeable in this area. Hope this helps.
I had to look up PCOS. So, you had ovarian issues? I had endometriosis and I was given Lupron injections to put me into menopause when I was 23. That is what I think killed my IF. Lets face it, you are not supposed to go into menopause overnight at 23 years old. But I also just found out two days ago, that my grandmother that died of stomach cancer, had b12 injections. Making me believe PA runs in my family because my cousin also has stomach cancer. I was going to get PA one way or another. I am a very determined person LOLOL. So, if they gave you a bunch of stuff for your hormonal problems, that is just another check mark on the list of things that could affect your chemical balance. I would get the tests to be sure once and for all. If you don't have PA, then that is fantastic and you should either eat B12 in your diet or take appropriate supplements. If you don't have PA, it will just take some time for your symptoms to reverse as much as they are going to. One doesn't know how much will reverse or how long it will take. Everyone is different.
I also had endometriosis and the same dr was an absolute b'tard about it.
When I was given Metformin, I did not have diabetes. I was on it for about 1 year. I got the signs of deficiency very quickly. Most of which I didn't know about at the time.
Generations of my family on both sides have been vegetarian. My mother took supplements before I was born as did I. We were acutely aware of B12. The issue was this one b'tard dr. Pardon my language. I feel I must use such language to warn people. Not all but some drs are that. And as non medical patients there is a huge imbalance of power. My symptoms were so sudden that I didn't know what hit me. Another feature of deficiency is an inability to fight back. You can think something, but not speak it, or be assertive. The punch isn't there.
Like you I recently found out my maternal grandma had b12 shots, my mother has had all the classic symptoms for years. For years she told her cardiologist of breathlessness etc. and they glaze over. She is pumped full of medication now with multiple health conditions. When younger she was told to take b12 for life. But she didn't.
What I still don't know, sorry if you already answered, is if you can have PA if your blood b12 increases after tablets?
I will take b12 for life, regardless of PA or not. It makes a difference to my symptoms and that's all anyone of us want.
Forgot my point.. brain fog... Being vegetarian and having supplements was fine. The problem is pharmaceuticals. They are made evil imho, to do long term damage, for which you need more meds. To keep their gravy train going.
For other conditions, including FM I have refused drugs until recently. I took Semaglutide for diabetes. It's called the new wonderdrug, because it helps you lose weight. Everyone said try it, so I did. I took it for 10 days then stopped. Half my hair fell out, skin went dry, angular chelatis, no motivation, no energy, etc.. In 10 days. So many symptoms so rapidly. My uncle, a nuclear engineer, very bright and active, took it for 18 months and became a shadow of himself. Couldn't talk, looked terrible he was a mess. You cannot easily correlate so many symptoms with this one little drug. But I'm older, wiser and far more aware of medicines, that I made the connection. Semaglutide like Metformin depleted my B12.
That's how I came to this site and others, and resurrected my B12 journey. I started injecting a few weeks ago and noticed an effect albeit subtle.
Well, this is all very interesting. I noticed the effects of Lupron injections instantly too. also had them for a year. I started having bladder problems and pain beyond belief and abdominal issues that sent me down rabbit holes to nowhere. And well, 4 surgeries later here I am. Yup doctors used me as a guinea pig and I do not trust them. I did not take any meds for over 15 years due to severe unexplained reactions. Except now I suddenly have to take blood pressure meds and I do take tramadol for pain with acetaminophen. I can't take this kind of pain any more. 38 years of it and I can't do it anymore. I find it interesting that your grandmother got injections. Is/was (sorry) she a vegetarian. What I am suspecting is that family history kind of leads to PA but it has been clouded by everyone being vegetarians. So that has been the easy excuse. But it could very well be you do have hereditary PA or medically induced. Are you all vegetarian for medical reasons? I suggest you get the tests to find out for sure. There is no way to guess because your history is complicated. Only the tests will say for sure and if you do test positive, I would suggest getting anyone that is showing symptoms tested too.
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