How to deal with exhaustion - Pernicious Anaemi...

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How to deal with exhaustion

Curlywoo profile image
19 Replies

Morning. I'm a 47 year old woman diagnosed with PA and B12 deficiency about 7 years ago. Following loading shots I have injections every 3 months but haven't had one from the GP since March 2018 when the nurse refused to give me an injection when I told her I'd been self injecting. I changed surgeries following moving house and continued self injecting into my stomach and had my first injection from a nurse at my new GP practice a week ago. All I think about from the minute I wake up to the minute I go to bed is getting back in bed and sleeping. I have never felt so exhausted in all my life. My brain fog is really bad and I've recently started a new job and am struggling to concentrate. Do most folk here inject into their stomachs? I don't know if I've been doing it wrong and that's why I'm feeling so tired so wondered how you all cope with the fatigue and exhaustion and if you do anything else to help with this. Thanks.

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Curlywoo profile image
Curlywoo
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19 Replies
clivealive profile image
clivealiveForum Support

Hi Curlywoo can I ask how often were you self injecting and what frequency is your new surgery offering?

Have you had your Folate, iron and Vitamin D levels tested?

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 47 years.

I wish you well.

Curlywoo profile image
Curlywoo in reply toclivealive

Hi and thank you for replying to my post. Sorry for late response but I’ve only just remembered I put the question on the site. I don’t think my folate has been checked for a few years but I was told that I had to take vit D supplements last year which my partner has just reminded me about. I’ve just taken the plunge and done two injections into my thigh. I think I’ve probably self injected weekly into my stomach for the last year but have been feeling increasingly fatigued and sleeping all the time. I don’t know how much folate I should take so I’ll have a look through the forum for advice, thanks again for taking the time to reply to my post.

clivealive profile image
clivealiveForum Support in reply toCurlywoo

Folate works together with Iron and B12 to make red blood cells

You can buy folic acid 400mcg tablets cheaply over the counter at any pharmacy of supermarket and it can also be found in many breakfast cereals and of course in leafy green vegetables.

Personally I have taken one tablet every day for more years than I can remember.

I wish you well

Curlywoo profile image
Curlywoo in reply toclivealive

Thank you. I looked at comments on the forum about folic acid and will go to supermarket to buy some as I read it is water soluble just like b12 so I am happy now to begin taking it daily. Cheers, thank you for your time.

wedgewood profile image
wedgewood

Sorry you feel so bad at the moment . I personally use I.M. method to inject into the outer middle 1/3 of my thigh . But I hear that sub-cut is also fine . I think you need to give yourself a loading dose at the very least and then as often as needed to keep the symptoms at bay .And also make sure that you are getting enough folate/folic acid , which acts together with B12.

Also do take a modest multivitamin and mineral tablet , because as you have PA , you will have low /no stomach acid hypochlorhydria/ Achlorhydria , which leads to poor absorption of vitamins and minerals.

Very best wishes .m

Curlywoo profile image
Curlywoo in reply towedgewood

Hi, thank you for your advice and apologies for only replying to you now. Yes I think I need to take vitamins as well as folic acid so will get myself organised. I’ve just done two injections until my thigh for the first time and am hoping this starts making me feel better soon as I’m sick of feeling exhausted all the time. My get up and go feels like it has gone! Thanks again for replying to my post.

wedgewood profile image
wedgewood in reply toCurlywoo

Well done for biting the bullet and starting to self-inject . Do stick at it , and don’t get discouraged . You will recover gradually .Don't be impatient . You will have taken sometime to have reached the low that you are at now , so recovery will be gradual . Best wishes and congratulations . 👍🍀

Curlywoo profile image
Curlywoo in reply towedgewood

Thank you very much. I felt it more uncomfortable injecting into thigh than stomach but hoping it gets into my system quicker that way. My main concern was what would happen if I hit a vein but thankfully that didn’t happen. It’s so debilitating dealing with the exhaustion and brain fog so I really hope I start to feel brighter by continuing intra muscle injections and taking folic acid too. Thanks again for your best wishes and for taking the time to give me your advice,

wedgewood profile image
wedgewood in reply toCurlywoo

In three years of self-injecting once a week ( about 150 times ) , I have never hit a vein ! 👍

Curlywoo profile image
Curlywoo in reply towedgewood

I’m feeling much better after self injecting daily into my thigh. I even managed to tidy up yesterday which is a big deal for me as I have had no energy at all. Onwards and upwards!

wedgewood profile image
wedgewood in reply toCurlywoo

I’m so pleased to hear that from you . Its great news , and you’ve only just started ! That augers well ! Keep it up ! Don’t allow any ‘blips’ to discourage you . We are with you all the way .

Curlywoo profile image
Curlywoo in reply towedgewood

Thank you so much! I can’t believe this but I went for a walk around Snowdonia yesterday and walked over 17 miles! I absolutely cannot believe I was able to do it. It was really hard but there is no way I’d have been able to do this in the last year, I am injecting into my thigh daily now. Hoping the brain fog starts to lift as I still have that and am still struggling in work but I feel like I’m starting to get my life back.

wedgewood profile image
wedgewood in reply toCurlywoo

That’s really great news Curlywoo ! Persevere !

Lyntwo profile image
Lyntwo

My personal experience is that I must self inject about every three days. I almost collapsed in June 2018, was diagnosed with PA, given loading doses, vast improvement in mental acuity, gradual improvement in stamina, reduction of neuropathy. Alas, my sense of smell probably will not recover.

At the same time, iron supplements and vitamin d.

However, my health provider's protocol in the USA, is one injection per month, which I found is not enough, my body needing an injection every 21 days to just be able to function, but much greater need for maintaining balance, stamina, abatement of neuropathy symptoms thus my choice of supplemental self injection of B12 .

Good Luck.

Curlywoo profile image
Curlywoo in reply toLyntwo

Thank you for replying and sorry for being late responding. I think I’ll do twice weekly injections following my first injection into my thigh. Did you find the iron helped? I have found iron tablets hard to tolerate in the past. Thanks again for replying.

in reply toCurlywoo

I use spatone with apple sachets. I take 3 per day. Very easily absorbed and no tummy issues.

Curlywoo profile image
Curlywoo in reply to

Thanks for that. I’ve just looked online and see I can purchase the spatone at boots. Glad to read no stomach issues with them so my job for today is to go to boots and purchase that and folic acid and vit d. Cheers, thanks for sharing.

Great! Give the a try and see what happens. I take 3 a day and have my iron checked ever three months so I know it is working. Hope it helps for you!

Curlywoo profile image
Curlywoo

Thanks a lot. I started with multi vit, folic acid and vit d on Thursday. I also bought the spatone but haven’t started taking that yet. I’m feeling like I’ve got more energy so think daily injections are starting to help.

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