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anyone else get this?

sarahjaneR profile image
31 Replies

Hi, Do other people with PA still have occasional bad days even though the regular b12 injections are working okay?

Days when they have no energy at all or feel short of breath or just tired and want to slump on the couch all day?

I assumed the injections would stop these days. Is it the same for everyone?

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sarahjaneR profile image
sarahjaneR
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31 Replies
spacey1 profile image
spacey1

Yes. Today is that day, but I'm working and have loads to do. Caffeine calls ;)

Hope you feel better soon, sarahjaneR!

sarahjaneR profile image
sarahjaneR in reply to spacey1

thank you

mightydrunken profile image
mightydrunken

Do your bad days get worse and more common the further from your last injection ? If so you may need more frequent injections.

sarahjaneR profile image
sarahjaneR in reply to mightydrunken

No, seems to be random really. Out of the blue I just get these days when i'm very tired. Next day I'm fine usually.

mightydrunken profile image
mightydrunken in reply to sarahjaneR

That's good then, it means the random bad days are due to you being one of the most complex things in the Universe, with exquisite engineering down to the molecular level, just doing its own thing :)

sarahjaneR profile image
sarahjaneR in reply to mightydrunken

oh is that what it is :)

Jotk9 profile image
Jotk9

I'm facing short of breath now.. Today I had an injection.

sarahjaneR profile image
sarahjaneR in reply to Jotk9

Had mine a few weeks ago, perhaps just something we have to live with

Jotk9 profile image
Jotk9 in reply to sarahjaneR

Very weird awful feeling.

sarahjaneR profile image
sarahjaneR in reply to Jotk9

yes i know, it is

clivealive profile image
clivealiveForum Support

Hi sarahjaneR It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

sarahjaneR profile image
sarahjaneR in reply to clivealive

thank you. Is there any non medication way to get my folate level right if it needs it ?

clivealive profile image
clivealiveForum Support in reply to sarahjaneR

Yes as long as you don't have an absorption problem with your stomach eat plenty of leafy green vegetables, sprouts, broccoli, asparagus, spinach, peas, beans etc.

You will find folic acid fortified into many breakfast cereals too.

sarahjaneR profile image
sarahjaneR in reply to clivealive

oh i do have absorption problems. I'll have to chat to my nurse when the next injection is due. thanks

fbirder profile image
fbirder

Oh yes.

Before PA my energy levels would go from 1 to 10, as would my irritability. As long as energy was above 2 I felt good. As long as irritability was below 8 I angst too much of a monster.

Post-PA I feel knackered if I let energy drop below 5 and I get ratty if irritability gets below 6.

Over the years I've recognised the warning signs. So if energy is getting near 6 I take it easy. If irritability starts increasing at all then I act to reduce it.

Often the rising irritability is the first sign of me having forgotten a jab.

Winnie2009 profile image
Winnie2009

Yes I certainly do.feel suddenly like energy has been sucked from me, breathless , confusion.comes and goes daily sometimes from one hour to another.

sarahjaneR profile image
sarahjaneR in reply to Winnie2009

yes that's how i feel some days

Dee215 profile image
Dee215

Yes. I too thought I would be cured by the B12 injections but haven't been. :-(

sarahjaneR profile image
sarahjaneR in reply to Dee215

doctor told me with regular injections i would have no problems lol

Lucy12345 profile image
Lucy12345

If I don’t watch my diet , I notice it, like now , on holidays and have eaten way too much bread (which I had cut out completely) plus all the chips, dips etc. and not nearly enough vegetables . And when I overdo it when I’m feeling great then I will notice a slump the next day. Everything in moderation.

sarahjaneR profile image
sarahjaneR in reply to Lucy12345

i've done everything asked of me, diet, exercise etc but still have some pretty rough days. In fact i'm wondering if too much exercising is using up my b12

ACritical profile image
ACritical in reply to sarahjaneR

Yes that happens with me, too many visits to the gym in one week on top of my regular walks, then whoosh... there goes my energy, can hardly lift arms and my legs, feel very tired. 2 days after a top up I feel ok again. So yes everything in moderation, I see myself as a finely tuned instrument, it doesn’t take much to be out of tune.

Frodo profile image
Frodo

Yes.

Disappointing, isn't it? However, overall I'm so much better than pre-injection so I have to keep reminding myself of that.

There's always the slight concern that it's down to something else as well.

sarahjaneR profile image
sarahjaneR in reply to Frodo

yes true, i'm a lot better since i was diagnosed, i suppose we have to remember that

ACritical profile image
ACritical

Having the injections doesn’t mean an end to all ills , I am afraid . Everyone get these kind of days, can depend on various reasons , diet, sleep , weather, alcohol, viruses to name a few.

sarahjaneR profile image
sarahjaneR

Sorry if it's a dumb question, just double checked on the phone with my surgery nurse, i do have absorption problems. Does this mean that any vitamin or tablets taken for general health will not be of any use on the days i do feel run down?

KimberinUS profile image
KimberinUS in reply to sarahjaneR

What are they doing for your absorbtion issue? Is it strictly b12 issue due to no intrensic factor or is it over all absorbtion issue, as in low stomach acid/hypochloridia? If hypochloridia have you been tested for h pylori, which is a root cause of a b12 deficiency and can cause hypochloridia?

With low stomach acid/hypochloridia many nutrients will be reduced. You can try apple cidar vinegar, lime juice, and/or betaine hcl with pepsin.

sarahjaneR profile image
sarahjaneR in reply to KimberinUS

As far as I can understand it's a lack of intrinsic factor. My doctor hasn't really explained in detail what it means. just said I would need B12 injections for the rest of my life. The nurse I spoke to said it wouldn't help if i ate a barrow load of leafy green veg but hasn't really told me much more about it.

KimberinUS profile image
KimberinUS in reply to sarahjaneR

A barrel load of vegetables being absorbed would not give you a single mcg of b12 as b12 is only found in animal products. So, uhm...she doesnt have an understanding of b12 or she is saying you have an over all absorbtion issue. Get in there and ask for specifics about your absorbtion issue. It would be good if you could take someone with you for support so you dont get fobbed off with gibber gabber like that nurse gave you.

Malabsorbtion issues need addressing. Or things/ nutrient deficiencies will get worse with time.

I was being told to take b12 tablets, which did nothing for me. I started injections and felt better but not well. Found out after almost 4 frigging YEARS i had h pylori. It reduces the acid ph of your stomach which causes malabsorbtion of numerous nutrients when it gets out of control. I never had any stomach pain/heartburn. This is why doctors never tested for it and of course i had never heard of h pylori before joining this forum.

sarahjaneR profile image
sarahjaneR in reply to KimberinUS

It's like getting blood out of a stone asking my doctor for anything. He misdiagnosed my PA for ages saying it was stress because i was working too hard and he told me very little about PA other than it's easy treatable with regular injections. Nothing about lifestyle changes or diet. Just said the B12 jabs will put things right.

sarahjaneR profile image
sarahjaneR

thank you, will do that.

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