Did anyone else feel some heightened symtpoms, and feel really down while 'reversing out?'

[Suffering_sunny]

Did anyone else feel some heightened symtpoms, and feel really down while 'reversing out?' I am feeling certain symtpoms heighten. Especially GI, joints all clicking and popping and such muscle aches and pains, internal vibrations, and very low mood.

I know that this is a known phenomena, and that after having severe neuro symptoms for months - It will take months to improve things.

I wondered, specifically, about depression? I am feeling low, because this is hard.

Did anyone else feel down in recovery, and did anything help you to cope?

I used to take SSRIs (for many years), I am tempted to go back on them, but I'd love to manage to persevere if I can. Though I am definitely considering mental health medication to just help me get through this next few months.

[Jillymo]

Sorry to hear your still struggling with low mood, how often are you having injections ? Maybe you need them more frequently. Many myself included went through the worse before better truma. 🤗

[Suffering_sunny in reply to Jillymo]

EOD si, still in the inject every other day until I feel better phase.

But I was having serious neuro symptoms for months prior to this, and likely even further back with milder neuro symptoms.

I'm only on 2 weeks and 4 days, so far, so treatment is very new for me.

[Jillymo in reply to Suffering_sunny]

That is the same regime I did until the neuropathy got so bad then I started injecting daily. It is very early days for you 2 weeks 4 days is too soon to see a great improvement. My neuro symptoms were persistent but with constant injections going in they are now bearable - but it takes time and there is no quick fix.

I wish I knew what to suggest to lift your mood.

[Jillymo in reply to Suffering_sunny]

It doesn't help when everyone else is out and about and we are in feeling like crap. I am trying to distract myself by cooking meatballs - I donrt even like meatballs and would much rather an easter egg. 🍫

[Myoldcat]

The B12 specialist I saw estimated that a good recovery would take one month's worth of injections (at whatever frequency you need) for every year you've been deficient. So think back to when your symptoms first became noticable, and I also feel you could add on a bit for the 2-5 years of depleting your liver stores... I came up with 7/8 years, so in my head I'm allowing a year for things to stabilise.

And remember recovery is not on a straightforward, linear path. Extra stress or a bug can set you back and require extra jabs. But also remember that we as humans aren't always good at spotting small improvements! Especially with B12 brain fog and negative thinking.

I keep a diary of my worst symptoms and on a current bad day can look back and see a lot has actually improved - physically and mentally - in just over 3 months.

But this is a horrible phase of recovery, and very lonely; no-one in the GPs surgery had a clue what I meant when I explained I felt I was going to die after loading dose no. 5. They told me no-one else ever felt like that and maybe I should stop... 🙈 so I think the isolation and lack of knowledge/support from the medical profession doesn't help. Thank heavens for this group, I've learned everythingI know about B12/PA from here!

[Technoid in reply to Myoldcat]

"no-one in the GPs surgery had a clue what I meant when I explained I felt I was going to die after loading dose no. 5. "

This sucks because anyone with good experience of treating severe B12 deficiencies will know about early treatment decline. It's a dangerous ignorance too because this might cause them to stop or reduce treatment when it is needed most.

I'm hopeful that further research like that done by the B12 Institute will in time help confirm useful strategies to mitigate some of the symptoms of early treatment decline.

[Myoldcat in reply to Technoid]

Absolutely! If I hadn't already found this forum I WOULD have stopped as I felt so awful. In fact, I delayed dose 6 for a week (it was Christmas anyway) and all my symptoms came back, so it turned out to be a useful exercise and led to me requesting ongoing twice weekly injections while further tests were done. Still on that regime. So clearly other patients at the surgery put up with feeling awful through loading and on 3 monthly jabs without complaining! Or their responses aren't logged and taken seriously. Or they discover they can self inject and don't tell the GP...

[Suffering_sunny in reply to Myoldcat]

I can relate, I feel so down.

I am also getting heightened symtpoms as new to treatment and have had neurological symptoms for quite a long time prior to help. My main heightened at first was burning and tingling, now it has moved to muscle rigidity, and internal vibrations...

Did you face heightening of symtpoms or new symptoms while reversing out?

[Myoldcat]

I had both...new physical symptoms of stabbing pains in shins and severe gastric discomfort, and heightened mental symptoms of anxiety/irritability/low moods. Also incredibly exhausted, having to take daytime naps. Beginning to see more consistent improvements now at 3 and a half months 🤞. This healing demands lots of rest, trust, and extreme patience! And trying to accept that some or maybe most of those negative thoughts and feelings are part of the B12 deficiency/recovery journey. Hard without medication but brave to do it without. Do whatever you have in the past to lift your mood, and hopefully in a short while you will be coming through the worst of it xx

[Suffering_sunny in reply to Myoldcat]

Wow, that's tough going. I am glad to hear that you are now seeing some improvement 💛

It's a very hard road.

A neighbour asked what I was unwell with (which was quite intrusive), I replied that it appears to be a b12 issue, she said "oh well, that's an easy fix, just injections" 🤦‍♀️

Hard not to feel so lonely when your insides are vibrating and you feel like death, and most folk just do not understand the agony of deficiency and the hard road to recovery.

Very grateful for your reply and to have this group to talk to about how this feels.

I am going to ask Dr about potentially going back on a low dose SSRI, if I can't manage to cope, as right now I am teary every day and feel super unwell, I'm sure he will get back to me tomorrow.

For tonight, I will have bath, and try to watch something mindless on TV.

Thanks for sharing your experiences xx

[JesusMercy60 in reply to Suffering_sunny]

well hello All,

I had a lifted day all day after reading all your posts, yes suffering is so hard when everyone else around is busy doing things and carrying on, but please have patients, it will get better. I'm on my sixth month and I can go outside now without having a panic attack , those panic attacks killed me inside on my torso with painful spasms. even talking on the phone to my kids or people checking in on me, I had to be laying down in bed to talk or the painful jabs would almost knock me over. I could not even put socks on my feet or move them from the pillow for a while. Now I have to maintain any stress or it hits me again the spams but way less of intensity. I can play with the grandkids now and drive the car and go in the store now. If I over do anything for more than a couple of hours I have to lay down but you are all correct in that as time goes on and we look back things have gotten so much better. I was in such a lifted mood today knowing I'm not alone in the journey. thank you all for your stories they are helping me. also I started to drink coconut water for the potassium I read that when loading up on b12 and other vitamins the cells pull in all the potassium it needs to make new cells and leave you depleted on potassium so when I go anywhere I take it with me and if I get panic I drink some and my body calms down insantley. I hope this helps Love Rosina