Ok so I am hopefully going to be starting injecting every other day soon (possibly end of this week), but can’t just yet and I don’t know how to cope. I ain’t sleeping, I am peeing loads and have terrible bladder pain. Dr Klein says this does happen to some people. But I have also started seeing things and having intrusive worrying thoughts. Probably a mixture of severe sleep deprivation and low b12, I keep getting worried that this time the bladder pain won’t go away. I couldn’t live like this….
I just feel so miserable and tired like I am stretched to thin and like I am a burden…. Especially to my lovely partner. They deserve better than this. Emotionally I am all over the show. I normally do not cry for years at a time but at the moment tears come all the time. Any encouragement is welcome but please no lecture as I am doing all I can to get the treatment I need.
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Gobbozoid
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I'm sure your not a burden nobody asks to be unwell. So many of us have felt as you do before treatment so hang in there. Hopefully with injections things will improve.
My tears no longer flow so let yours fall dont hold your pain inside your not alone in your suffering.
Sending a very gentle hug. It is an extremely difficult time for you and many have us been there. It is perfectly normal that our emotions are all over the place, we are exhausted and it feels like our body and brain has been kidnapped by aliens. It does all this weird stuff.
A gentle sentence to your partner of, It will get better. On a personal note, I would cry at the slightest thing, cute puppies on TV playing with toilet rolls. With regards to painful and frequent urination, it should settle down with treatment.
I just had my needles delivered today. So it’s possible I could start self treatment tonight. I am really scared I will do something wrong. I know it’s to make me better but sticking such a large needle into myself seems scary. It’s all made all the scarier because my GP isn’t onboard with any of this.
I am on amoxicillin at the moment as I also have a compromised immune system. Due to another medication. Is it safe to inject the B12 whilst on these meds as I am desperate to start? I read that long term antibiotics strip your body of all the B vitamins. So didn’t want it to interact.
I wish there was local meet up groups for sufferers as it feels terribly lonely. I can’t get over the fact I have another life long condition that’s just bad luck. I am always the sick family member and it seems terribly unfair.
Gobbozoid, lots of our GPs are not on-board. Mine does not even know that I have 11 tattoos.
It is understandable because you have never done this before. Can you remember the first time you were allowed to make toast ? Or used the oven ? They are pretty hazardous.
The best approach is a step by step one. Slowly but surely. Think of it as ‘following a recipe’. So, it you wish, gather your equipment and put in order of use. Put your magic ingredient next to it. Then use your equipment to get the magic ingredient in it. Then take a couple of minutes break.
Then you may wash your hands and take a good sniff of the aroma of the soap. Then do the next stage.
There are thousands of us who have chronic illnesses and compared to other family members, we are different and we do have limitations. With it, comes an inner strength that they have absolutely idea about. We do connect with our own, we reach out, we listen, we understand, we comfort, we support and we protect.
I was on antibiotics 10 days ago and my kit still got used but then that is my choice.
As far as I know B12 is bacteria metabolite, though I don’t know which bacteria. So, yes, when antibiotics kill those bacteria there is nothing in the gut to produce B12.
Regarding needle size. I used small needle and it worked fine. Can you order small needles?
Do you have anyone who can guide and reassure you during first and second injections?
And your bladder symptoms looks like cystitis to me. Have you been checked for it?
The main issue with antibiotics is the carpet-bombing of the gut flora - it won't necessarily deprive you of B vitamins but the disrupted gut microbiome can take some time to recover fully. The only B12 producing bacteria in the human gut are in the colon (large intestine), near the end of the digestive tract. This is past the point where B12 is absorbed so this B12 production is no use to us - its why you need to get B12 from food or supplements. So, no, the antibiotics effect on bacteria would not affect the ability to absorb B12.
Even if you done have a local support group, you are welcome to join in on any support zoom meeting. Look at the prenicious anemia society page, for support groups
We all know how scary the first injection is. U worry about where to inject, how fiddly it is to change needles over n how much it's going to hurt. Well once u get the courage to inject it all sort of falls into place. As u inject tell yourself this is what my body needs. The needle doesn't hurt as much as those b12 injections the nurse used to do. As with everything the first time goes a bit shaky but with experience u soon become an expert lol! My partner injects me n we only started May 1st so we are quite new to this but my b12 recovery has been remarkable 😊🤗
You may have a shortage of B12 leading to your fatigue and some other symptoms, but the bladder problems might be something else. I hope you can get a complete work up from your doctor for the bladder problems. mayoclinic.org/symptoms/fre...
I totally understand the whole piling up of the chronic illnesses, I seemed to be adding a new one every month for about 6 months and it really got me down but now, with eod injections I actually feel good.
Tears, yes, I’m a typical 50 plus bloke, no emotion, bottle everything up, hairy arsed ex forces yet I found myself sobbing uncontrollably in a service station car park for absolutely no reason one day on the way to a wedding. It’s normal to be abnormal but there is light at the end of the tunnel and at least you are now in the tunnel !!!
It is torture to feel so horrible. I’ve been there and I understand what this daunting situation feels like. It’s amazing how we forget what it’s like to just feel normal after years of gradual decline. B12 deficiency is sneaky and eventually we find ourselves accepting this new way of life until we get so sick that it’s impossible to ignore any longer.
It was scary for everyone on this forum to self inject the first time. To be honest, I still have to get up my nerve each time before plunging that needle into my thigh and I dread it, but what choice do I have? I know I never want to feel the way I did when I was so sick and weekly injections allow me to feel normal.
I wish you the best on your path to recovery. Though the battle may seem impossible to face head on right now, you will get stronger and more clear-headed with adequate treatment. It’s likely you wil feel worse before you feel better, but stay the course. The reward is worth it and you can do it!
I didn't know anything about B12. I didn't even know there was one. Then I found out that all my health problems were due to a B12 deficiency.
I didn't know that there was going to be more, after the six loading injections, until on the fifth one, I asked the question. What ?? Every three months ? Forever ?
At this point, I started looking up "B12 deficiency", read some books, read some research papers, just so I knew what I was dealing with. I also joined the Pernicious Anaemia Society and this forum. My line manager helped me with this.
It has been difficult, getting control of my health again. I was lucky: I had a supportive GP, an employer who allowed me the time I needed, and a family looking out for me. Still, I felt like the me I knew was disappearing.
Later on, without the care and guidance I got from friends here on the forum, I would never have improved - because I needed their help to order sharps, B12, etc. and then to know what to do/ what not to do when injecting. Then the courage to do it. I was anxious, confused - but knew this was my only option if I wanted to return to my job. Plus anxiety and confusion are both common B12 deficiency symptoms - they will diminish, given time.
Have you had any B12 injections before ? Administered by a nurse at your GP surgery or other medical professional ?
Yes I had two lots of 6 through my gp but massive gaps between both batches. My partner just injected me last night, we were both super nervous. I feel less anxious today. Whether that’s the b12 already or just the fact I feel I have made a massive step I don’t know.
Still wish the frequency was less although my bladder feels a bit less painful already over night.
I guess I am a worrier but I even worry what if this doesn’t work or stops working what would happen to me……
Only natural/sensible to be nervous. Yes, a massive step. Well done. My GP suggested that I ask the nurses to go through the process with me - they recoiled in horror at the request !
That was okay. I watched plenty of videos. Finally picked on one: a man wearing sensible pants - [can't go wrong there !] - because I liked his suggestion of using the syringe wrapper around the neck of the B12 ampule to protect your fingers when snapping the top off. Love a bit of repurposing !
Make sure, if you keep ampules in the fridge, that you warm them up just before use. Liquid becomes less thick, also less of a temperature shock.
Make sure, if you use antiseptic wipes first on your leg, that you allow the area to dry before injecting - less stingy. A droplet on the tip of the needle can also sting so flick syringe first.
Relax muscles, then relax them a bit more - less difficult.
Push the syringe plunger in sloowly - less achey.
You can prevent stings, aches but not always blood : sometimes an unexpected small trickle when you (or partner)withdraw needle. Don't panic ! You just nicked a small blood vessel. Stay within centre third at outer side of thigh and nothing much there to hit other than muscle.
Expect gradual improvements -and don't overdo things when they arrive.
I was so rubbish at all this when I first started injecting and though I haven't forgotten that, it's all just a part of my routine now. Keeps me normal(ish).
After multiple negative tests for bladder and kidney infections, a couple of B12 jabs sorted out the excruciating pain! It occasionally comes back when I need to inject, but that's easily fixed.
Have a look at a few online videos to find an injection technique you feel comfortable with. Set aside plenty of time, to allow for dithering the first few times.
I shook like a leaf the 1st time, but when I finally jabbed I was really surprised that it not only didn't hurt, I felt nothing at all. Don't use fridge cold B12, that can sting a bit sometimes. Now I don't think twice, if I feel symptoms I do a quick jab!
Be kind to yourself and be brave, you won't look back. One day you'll realise that you're not crying anymore!
Lucky you, my partner insists on leaving the room while I do it !
You don't have to keep it in the fridge, just below 25c (I think, but better check the box.) I keep it in the fridge for convenience as much as anything, then I know it's safe when that heatwave hits. 😂
Really glad to hear that you've got started, it's all going to get better from here.
Don't be too quick to stop loading doses (I was) and expect symptoms of things that you didn't even know were things while your body heals.
The guys on here are always happy to help, there are no silly questions and ranting is allowed if you want to get things off your chest! We're all in the same boat.
Your symptoms can get worse before getting better.
The thought is that it's your nerves waking up, so all the problems the B12d caused need to be reversed out. Some issues you may have had & forgotten about could come back briefly. It can be a bit disconcerting.
It can affect so many different things that you might have ignored (who knew it was B12d when my ear started to tick, or my eye wouldn't stop twitching, or my feet cramped!) They got a bit worse with treatment then pretty much resolved. If I try & space out jabs some things come back, so obviously not fixed, but definitely under control while I keep jabbing.
It can make you question if you're doing the right thing. You are. I've been lucky and haven't had anything that made me question carrying on with treatment.
There are a fair few posts on here about 'reversing out.' If you question if the treament is doing anything for you have a read. It'll help
Thank you. I must say I feel nowhere near normal but even after 1 jab my thoughts and thought process feels more organised. Still massively tired, and bladders still uncomfortable. My legs feel heavy too. But it’s early days.
Hopefully. Although the bladder ones the most disruptive as I can’t sleep, or go anywhere when it’s bad like this. So hope it gets back to normal asap as my other half would like us to go somewhere.
If you go to the pinned posts there's info about how to inject IM. Dr K could show you in person but having a handy printout of the correct technique is a good reference in the early days.
I really feel for you, the whole B12 thing is such an up and down journey and the isolation is sometimes beyond awful. But now - unlike many others - you have the tools to heal at your disposal, and you will slowly but surely start to feel the improvement. That first solo jab is the worst, after that each one is better and you'll soon be doing them pretty automatically. I never love the preparation, but the jab itself will be virtually painless if Dr K advised subcutaneous injections.
The sneaky thing about B12 deficiency is that it affects your brain and the way you think. At 66, before starting injections 6 months ago I was so exhausted and demotivated that I was absolutely convinced I'd be off to Dignitas within the next 5 years if things carried on the way they were on such a downhill path... still get the odd flash of that, but now I can say it's the old B12D, not the real me!
I'm sure your antibiotics aren't helping ( I felt dreadful the last time I took them, before my diagnosis) and I don't think I've seen any reason why you shouldn't start injecting while taking them. After all, you wouldn't stop eating B12 rich foods. So wishing you well, this is the darkest hour before your brighter dawn xx
Just to echo the sentiments of others; you are not a burden and I am sure your partner is just concerned about you. I could see it in my husband's eyes when I totally lost my words mid-sentence for the tenth time in an hour. I would just cry for no apparent reason at my desk at work, I felt like my "normal" self was slipping away and I never felt rested. It does get better.
I started injecting in mid-April and the improvement so far is incredible. As others say, you will be nervous the first time you inject. Your hands may be shaky. But it really does not hurt, just a mild twinge/discomfort. I line everything up, clean my hands (then use sanitiser) and begin the process in a methodical way. It quickly becomes a small part of your routine, like brushing your teeth.
Try to believe us that things will get better and hang on in there 💗 We've all got your back!
I am still on every other day at the moment, but the Cambridge doctor advised 1-2 months at this and then to start dropping down if I was seeing no more improvement. Over this past week I can say I've felt almost "normal" in terms of energy levels and cognitive function so for me, I'll keep on for another 3 weeks or so at this rate and then perhaps reduce down to every 3 days, then 4, then once a week etc. I will listen to my body.
My issue is gut malabsorption but it's different for everyone. I also had the feeling of needing to wee all the time, much worse at night (sometimes would have to get out of bed 5 times before I could sleep) and that was one of the first symptoms to go once I started injecting. So, hopefully it will be for you too and you can feel comfortable going out. It actually became that I was eager for the next injection because I started seeing improvements and was so desperate to get my life back! Keep us all posted 😘
I am glad I am not alone in these symptoms. My gps kept telling me it was an infection and I had antibiotics after antibiotics which I just recently found out strips B12 from your system too. So effectively they made me worse. They then suspected I had bladder cancer so I had months of worry about that. Then they put a camera in me, yep right up the urethra which was horrendous. And it was all B12 related. All my gp did for me was increase my suffering and anxiety over a three year period. And when B12 helped, they then refused to continue treatment. Dr Klein saw my blood results I sent him and emailed me saying it pernicious anaemia. So like you I am going to be doing this for life.
GPs are really making the situation worse for most people on here. You'll see the same story of misdiagnoses, refusal to investigate, ignorance of test results and symptoms coming through on the daily posts. I am battling my surgery about it all and just now I've had to ask them to remove the B12 test from my July bloods (Dr K only asked for ferritin, vitamin D and folate). If they knew what they were doing, they would know that B12 shouldn't be re-tested. You will always find support on here as we are all going through the same battles of feeling patronised and not listened to!
Try to see it as the beginning of your recovery. It is hard at the start because you just want to feel better and feel like it will never happen. In April I couldn't bend to tie my shoelaces without needing to catch my breath afterwards. Mid-May I started the couch to 5k app and I'm now running/fast walking over 3km in 30 mins. For me, that's an incredible improvement. Once you get into injecting, it really will just be a 5 minute part of your day. The benefits far outweigh the slight discomfort.
I will be doing my second injection today. I wonder what can be done to educate gps? I also wonder about taking legal action as they have mistreated me, misdiagnosed me and gaslit me non stop. Does Dr Klein write to them to inform them how wrong they were?
You've got this 👍 Dr K didn't do that for me, but there are resources on the PAS website to help when you visit your GP. I think it totally depends if you have a decent GP or not. Some just will not listen. I quoted a lot of research in my complaint to my surgery and they gaslighted me too, portrayed me as relying on "internet research" to back up my argument over their proposed oral B12 treatment like I was a hypochondriac or something. It really boils my blood...which is probably 80% B12 now hahaha!
Thing is I don’t think they should get away with it. If I am honest I was so low and down for so long I could picture others doing themselves harm. They are meant to be healers. I know Dr K asked for my gps address etc so just presumed it was to send them a letter?!
I am wondering how long it took for people to mental except they are ill and will have to do this for life. I already have to inject with an epipen for arthritis regularly and now this… it’s hard to come to terms with.
I absolutely agree!! I am taking my complaint higher (for what good that will do). My husband is telling me I should get my local MP involved...they may actually listen with the election coming up and wanting to look good, but I have zero faith in democracy these days either. It really is disgusting to be treated this way and then told "we don't need to improve our knowledge of B12 deficiency, we did nothing wrong" blah, blah, blah. It just takes lot of out you to be fighting and I have to write my complaints over days and weeks because I get so mad and I know stress is no good for me!
The way I've coped is just to try and be kind to myself. Allow myself chill time without feeling guilty, but that took time and I'm still not great at doing nothing. I'm 40 and had a very active social life. It's changed, for now at least, in that I only stay out a few hours then head home. So I'm not totally missing out but also not wrecking myself. I do believe that once you start to see the improvements you'll see through injecting, that the lifelong issue will fade away. You won't need to inject so regularly for life, surely? I'm sure Dr K gives similar advice to everyone. Just try to focus on the fact that things WILL get better.
It's not going to be a speedy process - in my case, Dr K estimated a month of jabs every 2/3 days for every year I'd been deficient. So given our B12 stores last between 5 and 10 years and it may take that long to notice symptoms, I'm thinking in terms of a year to get reasonably stable before tapering down. But improving all the time during that year! I think its a case of keeping an open mind and listening to your body. And I can't stress enough how positive it is for me to have the control and flexibility that self injecting brings.
What a huge amount of supportive and helpful advice you’ve received Gobozoid so many of us have been where
you are so just you hang on in there. Thanks to this group I’ve been self injecting for many years and know when I need to top up, it was never enough on the 3 monthly regime. There is no regime, for me it’s a totally random requirement.
It was very humbling to read your post imagining how you struggled before you got it together enough to outline your difficulties here. I won’t be alone in thinking you have helped many readers by your questions and the understanding and practical answers received. Three cheers for Pas members. 😉
Sound as though you have a bladder infection that needs attention from a GP.
The prospect of self injection is scary - fact - especially if you have no experience of injecting. I suggest you practice handling syringes etc. by injecting water into an orange. You can reuse all the gear - just methodically go thru the routine till its second nature.
No the bladder issues b12 related. Both times I had b12 before it stopped within a week. It’s an unfortunate symptom and dr Klein even sent me info. Basically the bladder has lots of nerves to tell you when it’s full, so when the nerves go wrong due to no b12 you feel like peeing non stop.
I injected yesterday and my peeing is a bit better today already. Fingers crossed when I inject tomorrow it improves again.
WTG Gobbozoid u did it! U are now on that road to recovery 😊 I’m happy u listened to us n hope u notice great changes too 🙏 U might develop a few reversing out symptoms as I have but hold on to that feeling of getting better n u will be fine 😊🤗
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desperate for help - 6 months in and no better... 
Help please awaiting diagnosis and feeling awful
Desperate!
Feeling very ill out of nowhere 
Newly diagnosed with PA. Need encouragement!
