I didn't think it could get worse

[Popcorn12345]

Do you think I'm doing something wrong or it's reversing out?At night I used to be able to lay on my front so I could sleep as the burning in my buttocks would only be when I sat down or put pressure on them.

Now I can not sleep because at night my whole butt and backs of thighs just burn even when I'm on my front.

I hear burning at night is common for neuropathic pain.

But what can I do?

It's like someone has thrown scalding hot rags on me.

Do we think it's actually reversing out and this is a good thing?

Or do we think my condition is just getting worse?

Or do you think I'm getting something wrong g with my injections.

Please help

[JesusMercy60]

good morning Papcorn12345,

I'm sorry for the pain your having, it is so hard to get through all the reversing out symptoms and wondering if were doing something wrong. I keep going through that same question like every other day or so. I'm on the first day of the 4th month for eod inj. and I'm getting more nerve pain in my back. I really feel like this is them waking up and healing. I know it will take a while and it moves around. is it worse for you at night? I also notice that at night when I'm gettin ready to get in the shower that's when my nerves start shooting off in my lower back like I'm activating it more. then I have to lay down afterwards.

[Popcorn12345 in reply to JesusMercy60]

I have problems all the time but it goes x100 when I go to bed. Which used to be the only time I got relief!

[JesusMercy60 in reply to Popcorn12345]

well yes that was with me too I would at least go lay down during the day too and it would get way better. I truly think this is the reversing out and beginning of the healing. I also had this several years ago when I did not know what was wrong with me and I was working still and my back would be on fire. it was the worse so yes it's the nerves going back to healing now. I hope and pray for you that it will not be very long. how long have you been deficient you think.

[Popcorn12345 in reply to JesusMercy60]

I don't really know. The burning started in March this year. But I've had other problems for years

[JesusMercy60 in reply to Popcorn12345]

then maybe it was the begining of your deficiency when all the problems started. that's how I'm knowing when my deficiency started as far as I can tell. their were so many different symptoms that I kept explaining to the Dr.s here and I live in a small town in the US I also went out of town to specialist for everything and they couldn't find what it was. now I know its b12D and PA so that answers all my questions. and my stomach is all messed up as well. I'm still learning from everyone on this PAS and answers to all my prayers too. I'm still wondering if I'm taking all the correct cofactors and if the whole plan is working but I have come a long way from what the big crash was like. but I'm just like you in the days keep changing and the symptoms getting different or worse in some ways. I may be just to dang impatient I think.

what kind of multi are you taking.

[Sailinglady]

If you're really finding the symptoms untenable, and you're not already on neuropathic pain relief (e.g. amitriptyline, duloxetine, pregabalin or gabapentin) then i would discuss with your gp. Don't stop your injections, but have some pain relief to cover this period. Otherwise, there is some evidence that menthol containing creams can help with peripheral neuropathy (e.g. cooling gels which you can buy from a pharmacy) so that might help (but, like most things to do with b12, there's no evidence to support their use in b12 deficiency or the early stages of treatment when symptoms can worsen).Basically, if symptoms are really bad, seen some help, don't just try and suffer through it. 6 months down the line you can always try without them again and then (hopefully) everything will have settled down.

Please discuss all of this with your gp, don't take my word for it.

[Popcorn12345 in reply to Sailinglady]

I have tried a few meds for my pain and none of them have worked. The doctor has now said they have no idea what to do. But to be fair they don't even believe me pain can be from deficiency

[Sailinglady]

As everyone says, there is a great deal of ignorance around b12 deficiency. If you've had decent trials of all 4 medicines i listed, then you need referral to a specialist pain clinic next. In the meantime, try a topical menthol gel (e.g. Deepfreeze), the trial I've seen (used for peripheral neuropathy from chemotherapy) used it twice daily regularly. The effects built over time. The only thing it is likely to harm is your pocket, so the risks are minimal if you can afford to buy it.

[Popcorn12345 in reply to Sailinglady]

Thank you. I can't really find anyone else who has the pain in the buttocks like me

[Sailinglady]

I think everyone presents with their own individual symptoms. There is a lot of overlap, but not always. I get burning pain in the soles of my feet after an injection (they used to just tingle or be numb), but it doesn't really bother me. I suspect you'll never know for sure, but it is certainly possible it's b12 related.

There is something about reframing the pain to reduce the anxiety associated with the pain. You might find this website helpful (it's a generic pain management support website, not specifically b12 related, and might lend itself more to musculoskeletal pain, but many of it's messages and tools will be relevant to you also): my.livewellwithpain.co.uk. (I'm a pharmacist who partly specialises in chronic pain management, as well as having a fairly problematic b12 deficiency myself).

[HugoMinney]

Well done for starting. The thing about proper neuropathic pain (ie caused by a problem in the nerves not with the area affected) is that it shouldn't make a difference when you treat the area. In other words, if you used to get a burning sensation when you put pressure on your buttocks, then it was something to do with the area and not so much with the nerves serving the area. If you now get the same pain whether you put pressure on or not, then it could be that the area is beginning to feel and repair (your buttocks were designed not to feel pain when you sit on them!) and it could be that a whole lot more nerves are carrying signals from the area, however it's worth considering, that not everything is B12 deficiency.

Either way, reversing out syndrome shouldn't last more than a week if you are taking plenty of B12 and should normally be less than 24 hours. Since your buttocks are a muscular area, consider muscle-building foods like proteins to help with the repair process.

Good luck and I'm sorry you are in pain.

[Popcorn12345]

I've had 5 mris and no one can find a reason for the pain. Apparently my pancreas looks abnormal but as of yet don't know what this means.

I don't understand what I'm supposed to do at this point

[B12phd]

Low back pain at night is often due to low iron as well. Be sure and ask your doctor for a complete iron status work up, especially a ferritin level.

[Popcorn12345 in reply to B12phd]

It's not at night it's when I walk

[Wheat]

I am so sorry you are having such a terrible time. I have had burning feet and and it's almost impossible to sleep as it's always worse at nights. It settled down after B12 treatments. But everyone is different.

Now it's autoimmune HypoThyroid causing complete feet and lower leg burning. I suppose this doesn't apply.

One forum member has found that B6 supplements stop his burning pain. Worth a try.

Best wishes, x

[Popcorn12345]

My pain has become so unbearable due to muscle and nerve pain I can no longer function in the world. I thought things would get better eith injections. I thought you could get b6 toxicity

[PapiteseHappiness]

The burning is not a common symptom except in the case of MS. It’s painful and hard to manage. See a neurologist and get that checked out. It’s important.