My daughter in her early 20 was ill with something? In the end with lots of tests they thought it was sjogrens .16 years later my son was admitted to a psychiatric hospital for a couple of months .On leaving, the psychiatrist told him his B 12 was very low and see his doctor, ,also family members needed to be checked as it often runs in families .Well it did we were all low ,and mine was the lowest ,For a few years I thought it was pernicious anaemia, had loads of different symptoms,found it best to write everything down and date them .It took several more years and a back end car crash that finally got a diagnosis fibro. learn now that my daughter, my granddaughter have symptoms.I have read a lot about it and take various vitamins and try to eat very well ,that have kept me going ,I really don’t want to go down the road of strong drugs yet Winter is obviously worst but I seem to keep going .
Fibromyalgia diagnosed after car acci... - Fibromyalgia Acti...
Fibromyalgia diagnosed after car accident
Hi May. I hope you are well.
I was incorrectly diagnosed with Pernicious Anaemia in my early 20's. I had Hydroxocobalamin injections every 12 weeks for seven years, before a Locum Doctor at my surgery correctly read my test results spanning those seven years. Whilst I had low B12, it wasn't because I couldn't absorb it, I just wasn't getting enough in my diet.
My Fibromyalgia first presented itself after a car accident too, and my Grandmother dying in the same month, when I was 23. My maternal Auntie has since had it suggested to her via her GP that it is highly likely that she has Fibromyalgia, after years and years and years of suffering with the symptoms and is just awaiting an "official" diagnosis from a Rheumatologist. She also has Rheumatoid Arthritis. Her daughter (32) and Granddaughter (13) also have all the symptoms.
It's brilliant that you have not yet had to go down the strong medication route. But remember that your quality of life matters and you don't deserve to be in pain ☺️ if you need them, they're an option.
Gemima ❤️
I'm interested to know what your doctor saw in the test results that made him rediagnose? Serum B12 shouldn't be retested once on injections and presumably you had had antibodies to get a diagnosis. What were you not eating, or did you have a temporary absorption condition? Considerable stress, in the widest sense, depletes vitamins and minerals - B12 especially. With autoimmunity in the family, you may also have PA but could have other AI affecting parietal cell function or an underlying gluten issue. Cheers
Hello. I was originally diagnosed after seeing a Prescribing Nurse regarding the skin on my face (Dermatitis, Blepharitis and Angular Chelitis), she noted that I was very pale (I'm just ghostly naturally, which I told her) and that my hands were blue so she ran some blood tests. I was called in to see my GP who told me I had Pernicious Anaemia and started the Hydroxocobalamin.
Several years later, after feeling unwell, I asked for my B12 to be checked as even with the injections every 12 weeks I was feeling so drained. More bloods were ran, I was told it was fine by another GP. Who then rang me back 10 minutes after the appointment and said I don't have PA. I possess the.. enzyme? That definitely isn't the word, I just can not think of it. But I possessed whatever the thing is that makes you absorb B12.
This was a time where I was really poorly with my IBD. I was barely eating because it caused so much pain and everything that entered my body, quickly made everything else leave. I couldn't have a sip of water without having to rush to the toilet (not for a number 1). I was going up to 20 times a day. I was very underweight too. This went on for a few years, so the mental toll it took on me was severe. I have since found I am lactose and gluten intolerant and I am currently in the process of figuring out what fruits and vegetables I can tolerate.
Thank you for your reply 😊
Gemima
I am afraid that your undiagnosing dotor was misinformed, as many sadly are. There are no blood tests which can definitively rule out either a B12D or PA, only tests which can rule them in. It is likely that your second doctor was speaking about intrinsic factor, having done a blood test for anti-intrinsic factor antibodies, but approximately 50% of PA sufferers do not show positive for this test. If you are positive, it is diagnostic and never needs to be repeated. And neither do serum B12 tests, as blood will show high irrespective of whether the B12 is getting into the cells, which he should have known. With PA you need regular injections for life. I suspect that your first doctor got a +ve IFab test. You should have had loading doses and then regular injections depending on symptoms - 12 weeks is often nothing like enough, hydroxo might possibly not have been the best form for you, but more likely you were low in cofactors - iron, B9 (folate - in the right form for you), magnesium, potassium, etc. Do you have copies of your records and do you have anything in writing to confirm that original diagnosis? If you can get them, please do. Intrinsic factor loss is not the only place where this lengthy process can go wrong and metabolism is strongly genetic. I'm the 5th of 6 known generations, but the only one told that I have fibro (although I also now have a small fibre neuropathy diagnosis and some say that should override the fibro - personally I think I have both). Are you taking B vitamins now? If not (and please don't start yet!) you could do your own testing for homocysteine and methylmalonic acid as well as the others (serum B12, active B12 (holotc), anti gastric parietal cell antibodies, IFab, serum gastrin, folate (B9), B6, magnesium) but having a copy of the original diagnosis would help hugely (for all of you!). The IBD may have damaged your ability to absorb, or could be caused by the lack of essential vits. IBD is commonly associated with low folate, which is also very complicated, as high serum folate may indicate low cellular folate and the form used can make a big difference. Please *do not* let anyone give you folic or folate or take it yourself - you need to sort the B12 and get the injections or supplements for that back in place first or you could make it all much worse. Gluten is a common trigger for autoimmunity as well as depleting nutrients and may be the thing that causes our genetic predispositions to express. I am certain it was with me - I am grain free and dairy free with considerable benefit. Cheers
Oh wow. That is a lot 😳
I do have copies of my records up to a point. I will go through them now. I have been deficient in literally all the things you have mentioned. The GP that undiagnosed me is retired and comes back and too to the surgery every now and again. And if I am honest, I have never taken to him as a person. He makes me feel defensive and at fault for my own conditions.
Thank you so much for taking the time to respond to me so thoroughly. You are an incredibly kind person. I am grateful. ❤️
I do hope it helps - the Pernicious Anaemia Society have a forum on here and are incredibly helpful. I am a life member! And none of this is your fault! We can do things to help ourselves, thank goodness x
That’s interesting. Could you tell me what PA and AI stands for please?
So sorry, PA is Pernicious Anaemia, the autoimmune form of B12 deficiency, and AI is autoimmune (there are a lot). Cheers
Thanks bookish. I think so much more research needs to go into genetic susceptibility to diseases generally. Picking up deficiencies early, especially in children could be a preventative to future illness.
I think nutrition and it’s effect on health barely gets a mention in doctors training, but needs to.
I agree, especially when we can do so much to offset. B12 hasn't been a part of the curriculum for 10 years and isn't included in regular blood tests, which would be a start.
How good to hear that a psychiatrist actually picked up low B12 in your son, so many times it is missed. B12 metabolism is complex and not yet fully understood - it does not have to be PA to be significant and is strongly genetic. Whilst of course you may have fibro, even several of you, I think it very likely that the underlying B12/folate issue is still there. Polymorphisms on something called COMT link the two. I have slow COMT, a long family history of PA and B12D and fibro since childhood (as well as restless legs and familial tremor). You may need to support the fibro and the B vits but with the appropriate forms. The back end car crash could have damaged thyroid function too, also strongly tied to B12 function - low thyroid can be caused by low B12 and low thyroid can cause low B12. Best wishes
Hello, could you explain polymorphism and what COMT is please?
I'll try! Illness can be related to genetic mutations, and that is not what we are talking about here. SNPs or single nucleotide polymorphisms are variants, which need a trigger or triggers to express so may never be of any concern. They are very common, may be beneficial or detrimental and conventionally many would say irrelevant to our health. But lots don't agree. A single SNP is unlikely to affect health even if triggered but combination of SNPs, especially if they all affect the same area of processes, well that might be different, and that has been my personal experience.
COMT is Catechol-O-methyltransferase, an enzyme which relates to processing of neurotransmitters (like adrenaline, dopamine) and some forms of oestrogen. It may make you more likely to have these a bit too high for longer than optimal, or a bit too low. Again, in conjunction with other hiccups that may be a problem. Some associate COMT variants with pain syndromes, mood issues, stress resilience, toxin processing..... psychologytoday.com/us/blog...
The good bit of course is that being epigentic you can help to modulate these effects and most can be lifestyle/diet/supplement managed to good effect.
Thank you for taking the trouble to give such a detailed explanation, good food for thought.
I’ve always thought that we can have genetic susceptibility that then requires a trigger to develop the disease process.
Also that our environment, as population has increased in a short time frame and our activities have lead to so much pollution, in the air, water, earth, food we eat and the buildings we inhabit.
As you point out, one thing in isolation is unlikely to be a problem but combinations could be. So it is with pollutants, although quantity of even one toxin can lead to drastic effects.
Epigenetics has the potential to uncover the links and influences between our biology, and our social and environmental world, which is complex. It does give hope that we may be able to have some strategies to reduce at least the effects of this horrible condition.
It’s great to have this informative and supportive network.
You are welcome, and I agree, these forums are amazing, with brilliant people and support. naturalendocrinesolutions.c...
Some interesting replies from members that’s what makes the forum so helpful sharing , yes I do read fibro can follow in families my daughter has it mild so far, yes Winter I find the hardest with cold damp weather and so Winter bugs flying around ☹️I seem too have had more than my fair share lately, it’s good you try and eat healthy and I too take a multi vitamin each day. x
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