What the hell

[Popcorn12345]

The burning pain has got so bad I can't cope! I don't know what to do! Is this normal? Should this happen? What can I do for the pain?

[Nackapan]

It sounds like early days .Do painkillers help?

It's a roller coaster

[Popcorn12345 in reply to Nackapan]

No painkillers don't help at all. This was the symptom driving me to the brink to begin with. Now it's even worse i don't know how I will cope

[Nackapan in reply to Popcorn12345]

Get another prescription to dull nerve pain if not coping. Short term.

[Popcorn12345 in reply to Nackapan]

None of the ones I've tried hsve helped. Crazy

[Narwhal10]

Okay Popcorn,

So, you’ve a burning pain. Where ? Arms ? Legs ? Stomach ? Chest ? Out of 10, how bad is it ? What are you wearing ? Can you tolerate getting dressed and wearing clothes ?

So, the pain is not so intense that you can write 29 words, with perfect punctuation, no spelling mistakes and the sentences are grammatically correct. I find that very peculiar, don’t you Dr Strangelove ?

Normally, people cannot splutter or utter a single word because they are too busy swearing, screaming or rolling around the floor. So Popcorn, you really are quite an anomaly.

So, my lovely, just take a deep breath in, focus on a spot on the wall. Just fix that gaze, slowly breathe out. Still stare at the on a spot on the wall, let your eyes relax, take a deep breath in, allow yourself to go a bit cross eyed. Just relax, breath out. You are becoming more relaxed, your arms and legs feel very heavy, your eyes so tired, your breathing lovely, slow and gentle and you feel so comfortable, so tired, you feel blissfully at ease. Your head is gently resting on a soft pillow, you feel very relaxed and tranquil.

Your forehead is relaxed, your temples are soft and smooth, your nose and cheeks are relaxed. Your jaw is loose and slowly relaxed and you feel so at ease with the world. You feel as light as a feather. Your body is healing and deeply relaxed. All your worries just float past you like green leaves on a gentle stream. The water is clear, crystal clear with a shimmer of the dawning sun. The gentle breeze brushes against your face and relaxes you even more. This time you go twice as deep, twice as further, you are completely safe and carefree. Just slowly let go and sleep.

When you awaken, if you still are not managing your pain, then ring your Out of Hours GP.

[Cb1963]

Have you had a B12 injection?Or waiting to see a specialist, there's a few questions and a bit more detail regarding your symptoms, there's always help available, and don't think I don't understand I know all about pain, I'm trying to be sympathetic and without a bit more information people will struggle to give you any sort of advice, you'll find people on here very knowledgeable; and at the weekend especially myself, we will try and help you.

[B12life]

tell us your back story. What was your b12 before 1st injection.

How often are you injecting and how much?

You may be in recovery if you are in the early stages of treatment. What happens is b12 is responsible for cell generation and all those dead cells are now coming alive if you are doing frequent injections. If this is the case, keep up the injections, the more you do them the sooner you will recover. This healing stage where so many nerve cells come alive all at once is painful but a necessary and ephemeral part of the process. Took a month for me. The pain was so bad I would have to pace.

[Popcorn12345]

My active b12 was 48 Folate 7

Vitamin D 24

Iron 90

I hadterrible back pain which spread to burning in the buttocks every time I sat down and a terrible ache. It stops me sitting and lying down but walking hurts my back.

Dr Klien told me I was deficient from there rwaults but GP said I was fine. I've had 5 injections so far. The burning pain which was already unbearable has become even worse. I can't ask my GP for any more help. They say they don't know what's wrong with me and any med I have tried to manage the pain has not worked.

I've seen

Rheumotologist

Spinal surgeon

Neoruo surgeon

Pain specialist

Pain clinic

Oesteopath

Chiropractor

Acupuncturist

Physical therapist

Massage therapist

Gynocologist.

Gastroenterology

I've had 4 MRIs. All were fine and showed nothing wrong on my lumbar spine, pelvis, upper back and hip.

I'm waiting for a CT scan of my pancreas to come back because of a stool sample showing low pancreatic elatase.

I had endoscopy was told all good.

Had colonoscopy. Waiting for biopsy results but they said no chrons or colitis.

Had an ultrasound and pelvic exam with a leading gyno who said he couldn't explain my symptoms and the only thing he could find was a tight pelvic floor but still didn't think that would explain my symptoms.

I've done exercises for the piriformis in case it was that. It has not worked.

My concern is my pain is not b12 related because no one complains about burning and aching in the buttocks and I can not find it in any of literature either.

I also get POTs like symptoms

Low blood pressure

Eye floaters

Anxiety but that is mainly because I csnt get this pain under control.

Had a lot of weight loss although I am eating correctly.

So that's my story

[Pixielula in reply to Popcorn12345]

Hi popcorn can I ask a few questions

Is the pain worse at night? Is it worse when lying or sitting

Can you touch your skin and the skin doesn’t hurt but it feels like your bones are on fire?

[Popcorn12345 in reply to Pixielula]

It's bad no matter what time of day. They burn as soon as any pressure is applied. So sitting and lying on my back is excruciating. It feels like the nerves are on fire and the muscles ache.

[Treesong2023]

Popcorn, I feel for you. I really do. Many in here have endured something similar.. during a bout of VERY high health anxiety, i managed to drive my blood pressure to 190 and dash to A&E, family upset, kids crying...etc... Your recent posts all seem to indicate a very high anxiety state.

I have had ALL diagnostics you have had and more. I know the "NOT knowing" the cause of my intensely burning hands and feet, the fingers that went into a claw at night, the back spasms and leg / thigh pains, the tinnitus, the deep endless fatigue, all caused my anxiety and panic to skyrocket. I cant help feeling you are in a similar state as i was and ( directly) you are feeling your symptoms all the more - You are, i believe... hyperaware of your pain feelings. I have been like that too. Honest.

As Nackapan suggests, it sounds like you are only in the early stages of B12 def / PA symptoms following a prolonged B12 Def. The B12 Def / PA people - who cant walk, cant stand up, think properly, cant think to type, who collapse, or suffer blindness are at the really serious end. Thats not where you are Popcorn.

I am sure you know, Fight or Flight is a natural response to fear. But we are not meant to be in that state for weeks and months...only YOU can bring it under control. Your extensive diagnostics all indicate that your life is not in threat..issues like cancer...and other serious life threatening conditions would have shown up.

We in here, know you have something..your drastically low B12 serum alone tells us that. We know how you are feeling.. the B12 repair process can cause "backing out" pains/discomfort ...as our nerves repair they fire more pain signals, and persistenly signal.! It can feel instense.. Lots of us have had it. My only help at the time was to keep as active as possible, i walked three hours a day, i took a bath morning and the night...and I worked REALLY hard to calm myself - Given i knew my life wasnt at threat. You are under proven treatement with a very good Doc. Stay strong, persist and endure, hold you worry down, we are all with you.

[Technoid]

It seems like its about 16 days since you started self-injecting so, in my experience, this is around the peak of nerve pain (the first month) as the nerves begin to recover. If the pain was unaffected by the B12 I would be inclined to think it might be something else but you mentioned it got a lot worse following injections - a very good sign (if you can believe it), that its likely B12 deficiency related damage.

It always good to keep an open mind that other conditions could be going on at the same time but if you had a severe untreated deficiency for some time, and the attendant neurological damage, its very much to be expected that there could be this period of early treatment decline where symptoms get a lot worse.

In the time period you're describing I had excruciating nerve pain which limited use of my hands. It peaked a couple of weeks in and then improved gradually, ultimately resolving completely. This pain was worse during early treatment than at any time during the deficiency, matching what you describe.

Not an expert on pain meds but gabapentin is sometimes mentioned.

[SlothMode]

Hiya Popcorn,

I have been self injecting for just over three months. I have suffered terrible spine pain n at times it has been worse than my Fibro! However I have focused my mind on the positive things on my B12 recovery. I can now walk a few more steps without heaving heavily and can stand a bit longer. My energy levels are improving slowly and I can concentrate for more than five minutes now. I am so grateful for all these changes. I think u need to focus more on the small improvements n tell yourself no pain, no gain. Remember your damaged nerves are slowly trying to repair themselves n it is a big job for them to complete. U may feel worse before u get better. I find heat pads n a soft blanket help me through the pain. I wish u every success on your long road to recovery 😊🤗

[Budsa]

Have a look at trying a topical cream which can either distract from or block the burning pain. There are a number of creams specifically for neuropathy pain that are available from Amazon and elsewhere. They usually contain either capsaicin (an analgesic) or lidocaine (an anaesthetic). Stronger versions of these creams are available from your GP. There are also creams based on natural ingredients, such as hemp, peppermint and tumeric.

[Crackenthorpe]

My BURNING pain is caused by oxalate dumping.

[Technoid in reply to Crackenthorpe]

Oxalate dumping is probably not real.

thekidneydietitian.org/what...