Fibro or B12 deficiency??

[Blueoxo]

Hi All

I just wanted to share this link which feature Dr Chandy talking about B12 deficiency. I am in both the fibromyalgia group and the one for pernicious anemia. I have been struggling lately with extreme fatigue, pins and needs, numbness in my arms, pain etc, worse then normal. I figured a Fibro flare. However this recording by DR Chandy was quite enlightening and got me thinking whether all of my symptoms could relate to B12 deficiency and to whether I have Fibro at all. So with this in mind I decided to go to a private clinic to have an addition B12 injection. Normally I have one every 8 weeks at my Gp clinic, but the last couple of times I haven’t felt any better. It is only 2 weeks after my last jab and I had the additional injection a few days ago. Well, I have to say I have to my surprise been feeling better. This could be a coincidence of course and time will tell but I have to say I am hopeful. I am going to have an extra b12 in between my GP one each time and see what happens. I just wanted to share this with you all. Very interesting watching. I have added the link below but not the best with technology but fingers crossed it works

healthunlocked.com/pasoc/po...

[moo196]

I have both.My b12 injectiond are every 4 weeks

[Blueoxo in reply to moo196]

I don’t think I would be able to convince my GO to give them 4 weekly, it wasn’t easy to get them changed to 8 weekly 🤷‍♀️

[Vonnie-72]

I have both too and can definitely tell the difference if I don’t self inject b12 and really struggle if I don’t keep on top of my injections. I’ve currently ran out the last few months and am definitely feeling a lot more pain and discomfort without them, and my migraines get more frequent and painful without them. I’m due mine at the doctors the 13th and it can’t come quick enough!

[Ladybird100]

You have exact as me B12 from my doctor every 3 months and after one week I'm back to tiredness and pains.pains.Tried B12 tablets and the one dose one but nothing.nothing.You never get the results after a blood test so left worrying.worrying. was told if you don't heahear your fine.fine.A new first Yr doctor mentioned my record showed I had had borderline diabetes yet I was not informed.

[Blueoxo in reply to Ladybird100]

Wow, that’s ridiculous when with diet changes you can reverse the chance of developing diabetes

[bookish]

I am in both groups too. There are so many who will have a B vitamin issue alongside other conditions it is fundamental to get diet, absorption, nutrient levels optimal for health. Deficiency symptoms are so diverse it is easy to miss or blame something else.

[AllthatGlitters]

Hello I have been thinking about taking the Vit B12 supplements as I have fibro and CFS. Are oral Vit b12 tablets the same as the injections? x

[Blueoxo in reply to AllthatGlitters]

I have injections because I have pernicious anemia, this means I can’t absorb B12 through my stomach/orally. I tried B12 patches but no where near as effective as having an injection. After my last jab the pain, fatigue and pins and needles stopped the next day. After watching the video of Dr Chandy, it just got me wondering if all my symptoms are down to not having injections regular enough. Also, Dr Chandy was treating people who were above the cut off for a diagnosis of B12 deficiency and this helped them. Makes you wonder if there are lots of people who would benefit from injections who on paper have the right level of B12

[bookish in reply to AllthatGlitters]

Hi, no injections and oral are not the same. If you were not eating enough B12 containing foods, for example if you were vegan, but young and otherwise healthy then oral supplements should be ok to prevent a deficiency. Generally people only get picked up once deficiency has shown as significant symptoms and then really you need injections to get those symptoms reversed as fast as possible. There are many reasons for people not being able to absorb enough from food, some can still absorb from oral or sublingual, sprays or patches, but others have to have injections. Some find that they are ok on oral for a while and then it no longer works well enough (even at high dose) and they have to move to injections. The intrinsic factor that you need to absorb B12 can still be present in small amounts even with pernicious anaemia but will be reducing, hence we are not all the same and may not remain the same. But you should not supplement without testing at least for serum B12 and serum folate - if you have low of either you really need to pin down why and if you just take supplements you skew the results and significantly mess up your chances of a diagnosis which may need proper intervention. So please don't just start with no tests. B12 in the blood does not mean that you have B12 getting to your cells, the process is complicated and there are many places where things can go wrong. It is already far too often missed. If you are borderline low, further testing should be done.

[Loobielu]

A really interesting article this, thanks for sharing. I wonder why there is such a resistance to giving these injections if they are relatively cheap 🤔. Probably an NHS funding/lack of staff thing. Also, the cynical side of me thinks a lot of money is made from having people on medication so don't cure them! I also wonder if they could eradicate the common cold but don't, as treating it is more profitable. Sorry, I just get more cynical the older I get and the more years I suffer! 😏. I'm very tempted to look into getting B12 injections privately though, as I'm a vegetarian so probably naturally low on B12 because of this 🤔🙄 x

[bookish in reply to Loobielu]

Please have a B12 test first to see if you are low, how low and whether you should be getting your treatment through your doctor. Just because you are vegetarian does not prevent you from also having a B12 metabolism issue or autoimmune condition (PA). If you supplement you will skew the results.

[Loobielu in reply to bookish]

Hey, yes you're right, very sensible idea 👍 thank you 🙏x

[Blueoxo]

A lot of beauty clinics offer them, the lady that did mine also offers other beauty treatments. She operates from a room in a hairdressers/nail bar. She was trained to do the injections by a nurse led aesthetic's training centre nearby. She was told to offer them 4 weekly as your body will pee out anything it didn’t need and it would be a waist to offer them more frequently. Definitely worth considering to see if you feel better. I would imagine there would be a cost implication for surgeries to offer more regular injections although NICE are looking into how people with B12 deficiency might be able to self inject and manage treatment on their own and n the future.

[Loobielu in reply to Blueoxo]

Thank you, this is very useful. I'm going to look into this to see if I can get them once a month privately 👍 x

[bookish in reply to Blueoxo]

That is an odd misunderstanding of B12 in the body - after an injection it may be as little as 6 hours before you have used or excreted the B12, in some closer to 24 hours. This is why the standard loading dose treatment and continuing schedule for those with neurological symptoms should be for every other day injections, until improvement stops happening. (Which doesn't mean that some don't self-inject far more often than that and get better results or that some doctors don't put you straight from 6 loading doses to one every 3 months!). It would only be a waste if the person getting the injections was not deficient! I hope she does not refuse people who go desperately needing additional injections to resolve symptoms when their GPs are refusing to do more frequently than every 3 months.

[Blueoxo in reply to bookish]

No she would give them more regular, if that is what you wanted. I pretty much said the same things to her that you have just outlined, it’s just what she was told by the nurse delivering the training. I guess they look at it different as an asthetic treatment than you would if was to treat someone who is deficient.

[bookish in reply to Blueoxo]

That's good! Cheers