Pernicious Anaemia Society

Pains everywhere!

I have been diagnosed with PA, had the loading doses and the pains went away for a bit, now with next injection not due for two weeks all the pains are back and more constant. Managed to persuade GP to give me the injection early and had this yesterday, although still in pain today hmm. I also have a pain in my lower back which have had some time when lifting heavy items and this was put down to sciatica, but since the PA has been diagnosed this lower back pain is ten times worse and now am wondering if this is connected to the PA instead.

My blood results for B12 before the loading dose level was about 145 and now its over a thousand so I don't understand why am in pain again, any suggestions anyone please?

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Hi Trace-67 It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having injected 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.

Testing serum B12 levels after injections is meaningless unless it comes back LOW.

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

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Apparently my folate level after last weeks blood test was 10.3 and doc said that's ok and should be 3.9-26.8?

B12 last week 1022 so up a bit from 145 and at least they agreed to ten weekly injections

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Can only say that I also get a lot of pain in lower back and shoulders ,also muscles and joints since being diagnosed with PA. Nobody seems to get to the bottom of the cause of the pain so I get by with a little help from physio and see a McTimmony chiropractor ,both seem to help and there is also improvement just after I SI for a few days.

Hope you get some relief soon

All best wishes

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Thanks Pitney I have an appointment to go to physio in Feb never been so not sure what they will do for back been considering going to a chiropractor. Just read about Turmeric helping pains with someone that had fibromyalgia so not sure if worth getting some of those to try as doc wasn't sure if my pains were fibro as well as PA!

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