Pernicious anemia, muscle spasms and aching bones

[dunc01977]

I was diagnosed with pernicious anemia in 2004 and have been having b12 injections since then. Amongst the appalling symptoms I suffer such as low stomach acid and diahorra is the annoying muscle spasms and ticks coupled with aching bones from time to time and a feeling of a permanent flu bug. Does anyone else with PA get this or could it be caused by something else?

[SunnyWorld]

Yes I get muscle spasms sometimes, electric shocks, flu symptoms but since I was treated for H Pylori the toilet problems cleared up. Have you ever been tested for that? it's quite common

[dunc01977 in reply to SunnyWorld]

How do they test for it?

[SunnyWorld in reply to dunc01977]

They test with a pop sample or breath test. Worth doing though

[Hidden in reply to SunnyWorld]

I have had PA for 18 months and I SI. I have terrible pains which feel like tight muscles and the pain tends to move all over my back. It hurts just under my clavicle and in my neck shoulders and arms too. Sometimes it’s better than others. I have had CT and MRI and ultrasound to rule out structural issues. I have also tried various diets, probiotics, which I still take. I have tried Fish Oil capsules, turmeric and magnesium and my Vit D is in the mud to high range. I take gentle iron. None of these things have worked. Neither have daily injections of B12. I’m thinking this might be TMS (look it up) and that’s my next line of inquiry. If you find out anything let me know. I know others on here have similar issues so I will share what I find works. Good luck.

[deniseinmilden in reply to Hidden]

What are your potassium and magnesium levels like?

I suggest you Google these to find out what the symptoms of deficiency and excess are and what dietary sources you might like.

For more information please see my reply in this post and some of my other recent replies by going to my profile by double clicking on my name and looking under the heading "replies".

[Hidden in reply to deniseinmilden]

He Denise. They are both in the high normal range and I used to check them quarterly so I know they are not causative for my issues just as more B12 does not help. In fact I was in a low carb diet and used to eat loads of nuts and I mean loads, one of the food sources of potassium and it went over ranger. Fine now. I’m working with the TMS theory for now and will see how I go. Of course I will check back in and let folks know how I got on.

[deniseinmilden in reply to Hidden]

Thank you - that will be really interesting. I have heard of it (maybe on the radio?) and thought it sounded like it had good potential.

I'm sorry it's not something simple - I should have known that you'd have been on top of the case (I don't always remember who everyone is when I reply, sorry). Once you replied just now the penny dropped!

Thank goodness for nuts - they are keeping me going OK at the moment.

Good luck with your TMS.

[Hidden in reply to deniseinmilden]

Thanks Denise and no problems at all; I know everyone here just wants to help. I feel like I have tried everything else (as far as I can think anyway) and you know how it is, you just want to keep going until it’s sorted. A few people have the same issue but not many from what I can see so just not sure!! Thanks for thinking about us all.

[deniseinmilden in reply to Hidden]

Thank you for being understanding.

I expect you have tried methylfolate and/or folinic acid in place of regular folic acid? And varying your cobalamins? They are two things that I hear reports of people having increased success with sometimes.

As I said, I expect you've already tried them. I'm not sceptical and I wish you every success with the TMS but don't despair if it isn't the whole answer - possibly there are yet more options out there for you.

Looking forward to hearing how you get on.

[Hidden in reply to deniseinmilden]

Thanks!! I do take methyl folate but not tried anything other than hydroxo.... mmm

[deniseinmilden in reply to Hidden]

It's the gold standard go-to but you never know.

If you get on well with methylfolate then it is unlikely that you will get any further benefits from methylcobalamin but others say that they get additional benefits from taking adenosylcobalamin as well as their hydroxocobalamin injections.

Who knows!!

[EllieMayNot]

I have most of the same symptoms. Just started injections, hoping for improvement but time will tell.

[deniseinmilden]

If you are getting muscle spasms, especially if you have diarrhoea, then you are very likely to be short of magnesium and probably potassium too.

It is worth getting tested for it but be aware that levels fluctuate quite rapidly so it is good to get tested when you are getting the problems (easier said than done).

I suggest that you Google these to see the effects of deficiency and excess and what dietary sources you might like.

It is much better and safer to get nutrients from your food and drink but if you can't get enough this way then...

Magnesium supplements are available as sulphate (readily available as Epsom Salts in Supermarkets and Pharmacies), chloride and oxide. They'll all do the job and can be taken internally but be aware that Epsom Salts are sold as a constipation remedy so for you it might be best to either add them to a bath or make them into a solution with water that you can spray or sponge onto your skin as magnesium is water soluble and can be absorbed through your skin.

BetterYou do magnesium chloride footsoak flakes (available in health food stores and online) and these dissolve very readily, are the most easily absorbed through your skin and are the most "bio available" to your body. (When I was desperately short of magnesium I used to eat them too but I do NOT recommend this). They also do a lotion which is good.

While sold as foot soak, the skin on your your feet is less good at absorbing things than the skin on your body, especially your groin region and under your arms. (As these are usually more protected, your body hasn't evolved to make them less permeable).

It is possible to get extra potassium if you need it from LoSalt instead of your normal table salt. Be aware that too much is as bad as not enough though.