Diagnosed years ago PA . Does any one else aching muscles and fatigued all the time ?

Hi ,

Wondering if anyone else feels fatigued all the time ?. I was diagnosed with PA in 30's and now 50 , prior to PA diagnoses I was diagnosed ME . It took a few years to be diagnosed with PA and kept giving me tablets . Fearful, that its not ME at all and I have long term damage to nervous system . I was never given course top up injections on diagnoses. I having aching muscles from the moment I get up to go to bed , feel fatigued daily worse due my injection. Very ill month before my 3 month injection fogginess , blurred vision, stomach and bowel problems ,visual, auditory.What is difficult is know one understands how I feel ache and tires all day . This knock on effect on my work .

I do not feel depressed I feel tired and aching 24 /7.

11 Replies

  • Welcome, there is lot more recognition of b12 since you were originally diagnosed. Have you seen your gp recently to discuss your present symptoms? That is probably your first port of call.

    Take a look at the website attached to this forum and see just exactly which symptoms are relevant to you and perhaps take a ticked list in to your gp.

    But the ones you have listed are classic ones for many of us here. The majority of us would also say that 3 monthly or even 2 monthly injections are insufficient too!

  • Thanks Lisahelen ,

    I have not seen the GP recently . I think I have given up asking and ended up accepting feeling ill on daily bases, as there was never any solutions of help I will look at the website attached to the forum .

  • No-one should just have to accept feeling ill!

    But your gp, if he/she is doing their job properly, should be trying to find out why you have it in the first place.(unfortunately many dont get this) Then giving you the appropriate treatment.

    If you dont get the right answers from your gp you could always consider using other methods of taking b12 onboard. There are other options open to you and many unfortunately do have to resort to this.

  • Are you UK based?

    Do you have neurological symptoms? See links below. for lists of neuro symptoms connected with B12 deficiency.


    See Symptoms Checklist


    "Very ill month before my 3 month injection fogginess"

    In the UK, patients with B12 deficiency with neurological symptoms should receive maintenance doses every 2 months according to the BNF (British National Formulary)

    Chapter 9 section 1.2

    They should also receive extended loading doses when they first start B12 treatment.

    All UK GPs should have access to BNF.

    BCSH Cobalamin and Folate Guidelines

    Info on treatment is also in "BCSH Cobalamin and Folate Guidelines". This document came out in 2014. I was told NHS should be following its recommendations. I found page 29, a diagnosis and treatment flowchart useful.

    I read the whole document then gave a copy to my GPs. Some GPs may not have read the BCSH Cobalamin document and may be following local NHS B12 deficiency management guidelines that have not been updated since the BCSH Cobalamin and Folate Guidelines came out.

    Following link contains similar info to BNF in Management section.


    Other UK documents



    Interesting summary points

    PAS (Pernicious Anaemia Society)

    Are you a member of the PAS (Pernicious Anaemia Society)? It has members from around the world.Lifetime membership costs about £20. The PAS can sometimes intervene on behalf of members. They are helpful and sympathetic.


    01656 769 717

    Office open from 8am till 2pm every day exccept Sundays. If you leave a message they will usually get back to you within a few days.

    Useful B12 websites




    Martyn Hooper is the chair of the PAS and has written several books about B12 deficiency and PA.

    Useful Books

    What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency

    by Martyn Hooper

    Could it be B12?: An Epidemic of Misdiagnoses

    by Sally Pacholok and JJ. Stuart

    I am not a medic, just a patient who has struggled to get a diagnosis.

  • "prior to PA diagnoses I was diagnosed ME"

    There are quite a few on this forum who have been diagnosed with ME/CFS/Fibro at some point in their history.

    I read that PA/B12 deficiency can be misdiagnosed as ME.




  • Hi sleepy bunny,

    I suspect this is the case that many of us fellow suffers ME have been misdiagnosed . If this is the case we battling fatigue and pain thinking there is no solution to our chronic fatigue other than pacing our lives . Actually , we may not be receiving the right treatment for our PA . We may be suffering unnecessarily ?

  • I think this is true, I'm sure this is what happened to me. So many wasted years.

  • Hi bele,

    You are certainly not alone and if enough of us "fellow sufferers" jump up and down and wave our arms about (whew! that's exhausted me just thinking about it) maybe we can get our doctors treating P.A. properly.

    Please do not "give up" heed the advice of those on this forum more medically qualified and present your case to your GP in forceful terms.

    There is life after P.A, I've had it for 45 years and I'm still "clivealive" at coming up to 75.

    I wish you well for the future.

  • On another group I'm part of, the consensus of opinion is that the one size fits all approach in UK to injections of either 2 monthly or 3 monthly after loading doses is insufficient for many people. Some people have had success in getting agreement from their doctors for more frequent injections and many self inject at home and manage frequency themselves.

    I'm in Spain and my doctor agreed to weekly injections for at least 6 months before reviewing the frequency. The norm here is monthly although cyanocobalamin is washed out of the body quicker than the hydroxo used in uk.

  • Do you have autoimmune PA? I am like you...symptoms got worse in my 50s. I was diagnosed with autoimmune megaplastic chronic gastritis. Positive for IF antibodies. I take lots of vit and minerals and iron everyday. Hope you find an answer. Im doing much better now since I know whats wrong. Diet was my poison and also my cure!

  • I also have PA. I come from Australia and luckily for us if you find an understanding doctor who will teach you how to self inject, you are allowed to purchase B 12 from any chemist and self inject when-ever you feel you need it. I normally only last three weeks before i start to flame-out.

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