P. ANEMIA QUESTION

[jenr50]

I have been diagnosed with pernicious anemia, my legs and joints are stiff and painful, I have had my 6 loading dose injections and now had my first 3 monthly injections. Is this stiff painful feeling usual with this condition ? I have just bought b12 oral spray and hoping it helps

[Shhilo]

Hi,

I have B12 defiecncy but they've never told me it was, Pernicious Anaemia. But I've read you are if your B12 deficient. I do have all the pains you describe but I'm not sure which illness I have is causing what. But I do know I feel worse after an injection but not for long.

I know that's not a lot of help but I don't think your alone in this. But it's quite interesting for me to hear your symptoms.

Do you have any other Illnesses?

[jenr50 in reply to Shhilo]

Hi Shhilo

I have COPD, graves disease and hiatal hernia.

[Shhilo]

Do your legs swell at all, ankle knee or calve?

[jenr50 in reply to Shhilo]

Hi

No I have no swelling at all, I have fatigue, very sore legs (muscle tightness) and sore joints, difficulty walking. I had b12 injection 6 days ago and legs eased off a bit, but today it's back with a vengeance. I also have major problems with restless leg syndrome.

[Shhilo in reply to jenr50]

Oh my daughter has restless leg syndrome, drivers her crazy! I do, but just once every now and again, not like you both have it.

[Shhilo in reply to jenr50]

I hope once you get into a routine of the B12 injections it will get better.

Best of Luck to you!

🌞🌻🌼🧚‍♀️

[jenr50 in reply to Shhilo]

Thanks Shhilo, I'm getting some great info here, so here's hoping x

[Ritchie1268 in reply to jenr50]

Hi jenr50

I was diagnosed last year with PA & amongst other things, the worst for me was constant aching legs & also restless legs.

After I started to self inject regular both of these eased.

I eased off the injections to once per week as I felt better but, it came back.

The pins & needles & tingling burning feet I can put up with, but the aching legs I hate.

I bought some Magnesium spray after reading on here it would help & it does. But I'm also self injecting every other day again now which seems to help even more.

Hope you get sorted.

[jenr50 in reply to Ritchie1268]

Hi Ritchie, thanks for your reply, I have began taking magnesium supplements and have just bought B12 oral spray, I am also looking at the amount of sugar I am eating (far too much) and will be trying to rectify my diet. I will be going back to my GP next week for another blood test to check b12 levels, and hopefully he will recommend I get my injections sooner than three monthly.

So much for life beginning at 40, I'm 50 now and been in pain for a decade Ha Ha !!

[Ritchie1268 in reply to jenr50]

You sound exactly like me!

I turned 51 last month & I've suffered with degenerative disc desease in 5 of my discs in my back for 15 years now from a very manual job I did for years.

I now think I've had a B12 deffinciey for years without knowing as my back is agony & put the aching legs down to nerve damage from the DDD.

My Dr tried me on 3 different types of antidepressants around 4-5yrs ago & I refused to keep taking them as I kept saying it's something else.

It wasn't until last year he gave me a full blood test & came back with B12 at 124, low Folate & PA.

After my loading doses I felt no difference but, after my first 3 monthly injection I felt the best I felt for many years, but for 2 days only, then the same after the second 3 monthly. Hence why I now self inject myself.

I tried the oral spray & magnesium tablets. Both did nothing & I hated taking the Magnesium tablets as it's like trying to swallow a torpedo 😁.

The Magnesium spray did seem to help though, even though it's quite oily. Someone on here said to try it as the tablets only get a small percentage into your system?

I learned very early on from here, that once you start B12 injections, testing your levels after again pointless as that's exactly what my Dr did, even 20 minutes after having my 3rd 3 monthly, so it's gonna come back high! A lot of Dr's do this, yet if they read the guidelines they would know it's pointless!

If your Dr fails to give you the regular injections that your body is telling you that you need, there are loads of posts on here about where to get supplies etc & if it wasn't for the amazing people on here, I'd still be suffering way way more than I am now.

Good luck!

[Hidden in reply to jenr50]

Check your folate level as low folate can cause restless legs. I have the pains you describe in my upper back, between my shoulders at the ends of my shoulders and in my neck. With me it is nerve pain and that is very much PA; never had anything like it before. I SI and have just started every day injections to see if I can improve it. I have been prescribed amitriptyline and take 59mg for the pain but don’t want to be on that long term. I wish you well.

[jenr50 in reply to Hidden]

Thanks for the tip Martin, will ask doc to check it x

[Hidden in reply to jenr50]

Good oh, I hope they do that for you. Hope things get better for you. Loads of fabulous and sensible people on here. They have kept me sane through this ‘weird’ disease!

[jenr50 in reply to Hidden]

Yes, it came as a bit of a shock to me as well, I appear to have been given my fair share of "conditions and diseases" this past decade, but hey ho, what can we do except keep going

[Hidden in reply to jenr50]

Yeah like you I’m young at 53 and feel ill after being fit for years. You are right to consider your diet too. I’m doing that and it does help. Good luck with it all 😀

[jenr50 in reply to Hidden]

Thanks Martin, you too, keep well and thank you so much for chatting xx