extreme pain

[Flowerspink]

hi, I ve finished all my b12 loading doses 2 weeks ago, I’m still in extreme pain the seems to be getting worse day by day, my skin on my arms hands fingers and feet burn so much I can’t even touch the skin. I have extremely painful pins and needles all over my body, I can’t sleep at all and every daily task is painful, I’m really not coping, being in constant pain for 5 weeks now is unbearable . Can anyone with similes expirence please give me advice on hope long it lasts and why it’s getting much worse . I thought after the loading doses I’d feel better but this is the complete opposite, I’m very down and not coping at all .

[wedgewood]

I’m really sorry to hear how bad you feel . I can only say that as a member of 9 years who looks at the forum messages on a daily basis , that it is not uncommon to feel worse when treatment starts . It is a sign that healing has begun . I hope that is a bit of comfort to you . Hope that you are also taking a modest 400 mcg folic acid tablet daily . As you feel so unwell you might be neglecting your diet . It’s important to get a good quantity of folate ( vitamin B9) It’s called folic acid in a tablet . It works together with B12 .

Do persist with your treatment and you will get over this very nasty blip. Please let us know about the progress of your recovery . We are all urging you on . Very best wishes .

[Flowerspink in reply to wedgewood]

thank you , just can’t see the end of the pain at the moment , I will try the folic acid.

[Litatamon in reply to Flowerspink]

Take magnesium during this healing period, if you are not already.

[Jillymo]

Sorry to hear you are feeling so down but many of us have been where you are now. Now you have had your loading dose has 3 monthly injections been prescribed ? If you are suffering with neurological symptoms you should receive injections more frequently. How aproachable is your Gp ?

Wedgewood has given good advice. Many of us on here know exactly what your going through and how unpleasant the symptoms can be. 🤗💐

[Flowerspink in reply to Jillymo]

hi yes I’m on 3 monthly now, I thought the pain would be getting better but the burning in my skin is so intense and painful, I just can’t see an end to it at the moment. My GP is very good, I will ask about daily injections, thanks

[wedgewood in reply to Flowerspink]

I doubt if you can get daily B12 injections . Every other day are possible, as that appears in guide lines for persistent neurological symptoms Failing that , self injection as most of us on this forum are forced to do .

[Jillymo in reply to Flowerspink]

If your Dr wont agree to every other day injections try asking for 2 monthly onstead of the 3 due to you ongoing symptoms. I found it hard to believe a how a vitamin deficiency could make me feel so ill.

It is early days of your healing so stick with it.

I have sent you a private messaged - click on chat at the top of the screen to read. You can show or send the link to your Practitioner.

[Peder1962]

You should consider self inject (SI) and order from webbshops in Germany. I SI three times/week - needed to not get my symptoms back. Pls notify that there is a very big difference between b12 ampulls - in their effect and how long they work. Best is hydroxocobalaminacetat - I use Pascoe 1500 depot…

[Sleepybunny]

Hi,

Many forum members report that their symptoms get worse before they start to improve when treatment starts. It happened to me...I had been left for years without treatment so was in a bad way. I thought of it as my nerves waking up after years of being starved of B12.

Have you got recent results for folate, ferritin (and other iron tests) and Vitamin D?

Forum members often report deficiencies in these as well as B12.

Has your GP checked your potassium levels? Some people can experience a drop in potassium when treatment starts.

It's quite common for forum members here to also have thyroid problems. Might be worth putting any thyroid results on Thyroid UK forum on HU along with an outline of your story.

Link below outlines recommended treatment for B12 deficiency in UK

If you have neuro symptoms, I would expect you to be on the pattern "For people with neurological involvement"

cks.nice.org.uk/topics/anae...

Other links that might be of interest

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

Testing for PA

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

How to write letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about being under treated for B12 deficiency with neuro symptoms.

It's vital ŧo get adequate treatment. Inadequate treatment increases the risk of permanent neurological damage. In severe cases, spinal cord can be affected.

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog about PA and B12 deficiency, mentions SACD

martynhooper.com/2010/09/21...

UK B12 documents

NHS article about B12 deficiency (simply written)

nhs.uk/conditions/vitamin-b...

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

BSH Cobalamin and Folate Guidelines (aimed at researchers and health professionals)

b-s-h.org.uk/guidelines/gui...

BNF Hydroxocobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2024.

nice.org.uk/guidance/indeve...

Local B12 deficiency guidelines

I urge UK forum members to find out what's in the local B12 deficiency guidelines used by their ICB (Integrated Care Board) in England or Health Board in Wales/Scotland as GPs are likely to refer to these.

If you can't find them after searching online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.

Some of these local b12 deficiency guidelines are not helpful. See blog post below.

b12deficiency.info/gloucest...

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

Some of the treatment info needs to be updated.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Misconceptions

Many UK forum members have met health professionals with a poor understanding of B12 deficiency.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Self Treatment

Some UK forum members turn to treating themselves if NHS treatment is not enough for them. Some get extra injections from private GPs or beauty salons (expensive), some try taking high dose oral B12 but this doesn't work for some people and some as a last resort turn to self injection.

I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.

[Flowerspink in reply to Sleepybunny]

hi, thanks for all the info, my doctor has been very good with checking everything, how long did your nerve pain last for after you started treatment?

[Sleepybunny in reply to Flowerspink]

For me it started to improve after a few weeks but very slowly. It took many months for it to totally disappear.

I think this was because I had been left for years without treatment.

I think it is a good idea to keep a daily symptoms diary. Maybe track up to ten symptoms and score their severity each day or weekly if daily is too much. It might be hard to see improvement if you compare day to day or week to week but easier to see improvement over time if you compare month to month or year to year.

A symptoms diary can be a useful source of evidence to show GP eg improvement or deterioration of symptoms. May be useful if there is ever a need for a formal complaint in future.

[MrJustatip]

Hello, I can't say for sure because I'd need to know more about your situation, but what I can do is tell you about us, my wife and I. I was diag. about a year ago and was placed on folate pills for 3 months a mistake because I also needed B12. So I really started treatment in Nov of 2022. That too was not good, starting treatment because I was given a shot once a week for 8 shots, this was not the correct amount for a loading dose.

Finally, about three weeks ago, I started getting a loading dose the right way and just maybe beginning to feel a bit better. I don't know what you do and do not know or how much you've researched, but Methylcobalamin is better than Cyanocobalamin and once someone begins treatment, it usually takes from 6 months to 1 year before they are back to whatever is considered healthy and it also depends on how severe they were. The books below mention that while healing you may not feel better and better.

I was more severe than my wife, but we both have been dealing with "the knife" as we call it (the piercing nerve pain that feels as though someone just stuck a knife in your hip) and it runs often down your legs to your feet. My wife seems to keep having to deal with the knife more, while mine has slowed down a bit, but I have more mental issues still. It causes me to forget and seems to make me lose all patience.

My best advice: read, study, investigate, research, and for goodness sake, realize doctors are NOT YOUR friend. They are in this for money. That's my opinion of course, but I feel the need to pass that on.

So I'll end this now, but here are the names of two books that will help. Could It Be B by Sally Pacholok and What You Need to Know About Pernicious Anemia and Vitamin B12 Deficiency by Martyn Hooper. And remember Superman had Kryptonite, we regular mortals have DOCTORS. Good luck and hope you feel better.

[tomdickharry]

That seems really extreme, Have doctors tested for other things as well?