This may seem a pointless question but it’s been on my mind a lot the last week
Pre diagnosis I had pins and needles, tingling, etc as well as bouts of extreme fatigue, brain fog and continuous headaches.
Now after one month of injecting every other day, many symptoms are improving if not gone altogether but I still have brain fog although it’s getting better but the physical fatigue while not as bad as it was is now continual. But my mind is working overtime and I cannot get to sleep (I am typing this at 5.30 am having not yet slept!)
Question is this … is the constant physical fatigue real or just my body’s reaction to the relief of knowing that I need to rest more or am I just being lazy? I feel such a fraud!
Thank you in advance for any insights.
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Wwwdot
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Very little B12 experience here. But ...body beyond-tired, but brain fogged and ( some how ) mind racing? Am there, and have the Tee Shirt. It's a real thing, and you are not a fraud. Don't do that to yourself health warrior!
My Dad said that having some brains, which might get anxiety driven, and over focused on getting a problem sorted...can be absolutely knackering. I know I over focus, and that draining 3.30 am research sessions can happen all too easily, if I don't have a word with myself.
As Nackapan says, it sounds like you are responding really well. 😁. Good thing!
It could be that you need to really get into a good sleep pattern, a bit more exercise or fresh air. And also, doing stuff that diverts your mind? Music, reading, drawing, audiobooks etc. All work for me. I have been so worried about nerve damage, but I have taken on the idea of building in " time out" look-after-me times. To take a break from the worry and concerns I have.
The other thing that occurs to me is the recovery / repair effects? As you body tries to fix itself, that can make you very tired.
But things are looking up from your body's response so far.. be kind to yourself.
Bless you. It’s so counter intuitive to many illnesses- it’s more like the homeopathic treatments where it gets worse before it gets better. Thank you for taking the time to support me.
Don"t know if its a coincidence or not but I have just recently been told that my Vit D levels were low and after taking a Vit D pill every day for the last month or so my sleep has improved noticeably, perhaps it might be worth your while getting your levels checked and /or giving it a try . All best wishes 😀
Hi you are right my Vit D levels are low and I am on high dose oral Vit D about 7 weeks into a 12 week course. I think it’s the timing of my B12 injection - I need to do them in the evening as I am very tired after for about 10 hours then I get a “Nackpan ping” that keeps me awake all night. I hung out yesterday until 6.30 on and had a good nights sleep so here’s hoping.
Fresh air - yes I need to get out more - just wish it would stop being so windy and rainy and cold as I seem to get cold so quickly even when I wrap up to look like a very fat bear!
Hi Wwwdot, I think you need to start taking a high strength, multi vitamins with minerals you can buy these supplements from most good chemist. I was experiencing brain fog before and other symptoms such as tingling pins n needles in feet that's due to poor circulation. I started taking high strength multi vitamins 💪🏾 and that was 19 years ago and I feel so much better 😊 so please try it and see. Also eating fruits in the morning first thing and vegetables with meals is a great idea and of course drink fluids especially water 💦 but not exclusively I like to try different smoothies 😉 good luck✨🌻✨
I have no medical evidence that this works, but sometimes when my brain seems to get stuck in overdrive I take fish oil capsules for a few days and it seems to calm it down. It might just be coincidence or a placebo but it couldn't hurt to try.
Maybe obvious but lack of sleep can be a big contributer to fatigue too. But fatigue is one of the PA symptoms that seems to last the longest for many.
obvious but true. I had a good night last night and today I managed to do what I planned (a sensible PA aware plan😇). No doubt that lack of sleep compounds things but I may have sussed that it’s the time of day I have my injection that’s the issue. 8pm seems best at the moment rather than in the morning.
Thank you so much for responding your support is very much appreciated.
Yes ,its all very real. The fatigue and sleep issues seem a contradiction but it does happen. I started taking melatonin and I sleep much better now. My fatigue has disappeared with the B12 injections along with a lot of other PA symptoms. It was slow progress until one day I realized I wasn't exhausted anymore.
Would you mind sharing how long the recovery was MoL? And your meds / bit regime. I am trawling for good advice and ways that worked...tho it's different for us all. Thank you.
I think I am one of the fortunate ones. This past summer I was so tired I couldn't hold my arms up, very weird "buzzing" in my body, balance was off too.I fell and broke both ankles in 2021. Tests showed megaloblastic anemia. I was prescribed 1000ml cyanocobalamin SI every 14 days. Dr didn't give me the loading doses. Most of my issues disappear after a day or two with each injection. The buzzing and tinitiss/vertigo slowly start to return just as I am ready for the next shot. My B12 injection is due today and I can feel the slight buzz in my feet,ringing ears but no vertigo. I have only had 7 injections so my anemia must not be as serious as others. Or my body just responds better than some to the B12. But the one thing that's gone is the extreme fatigue. It was so gradual , I am not sure how long it took but it was quick. If I had to go off the injections, I am pretty sure the fatigue would return. I know the other symptoms would. Maybe in time all the issues from PA will heal away for good.
I use a multi-vitamin patch daily. I take digestive enzymes when I eat and L.Plantarum probiotic each night along with the melatonin 10mg. I have issues with sodium so If my blood pressure is up I take Nattokinaise to naturally lower it. I try to use natural things and supplements to keep my health in check. The B12 is my only prescription.
I am really grateful to you MoL for your rapid response. it seems you had the painful consequences of a very sudden onset. Ouch! I am glad you are having an equally fast recovery, and it's now under control. You have shared lots of useful and helpful info in your reply as well. Very good of you, again thank you. 🌻I have had the continuous high pitched tinnitus in right ear for some time now, But my symptom set included hot and tingling hands n feet, muscle aches and cramps for ages. Now it seems I have nerve damage in my feet. My GP said the tinnitus was not a related symptoms. Gave me antibiotics for the tinnitus. Oh God. More bloods tests due next week!
Isn't the tinnitus maddening! I'm glad my vertigo is under control though, dizzy nausea is worse than the ringing. Its often difficult to know which ailments are PA related and many times Drs think we are crazy. I am blessed that my nurse just does what I ask because of the 20 year PA old diagnosis and blood tests.He started me at 1 shot a month and upped it to two when I asked him to. I usually don't mind the blood tests but I lost my insurance so it's all out of my pocket from here on. I hope your tests go well next week. You're welcome to my info Treesong. I feel we are all in the together. The folks in this forum have helped me so much. I am truly thankful and consider you all like family.🥰
I have never had tinnitus before, but now I understand why some people dont like silence … because it’s deafening!
I dislike high pitched noises which makes the tinnitus all the worse. But it’s better than having all the other symptoms.
My consultant said it’s because your ears cells are healing - I cling on to that and I know I sound mad but I talk to my ears when it’s driving me nuts thanking them for waking up but wishing they could do it quietly!
you’ve reminded me that my son was on melatonin for a while and within a few weeks his sleep pattern was restored. Was the melatonin on prescription? Thank you.
Not a prescription. I have tried two brands and both worked equally well for us. Bestvite Melatonin 10 mg is the brand we are using now. We get it on Amazon.com. Most pharmacies and grocery stores carry one brand or another.
what a wonderful realisation - it describes how gradual it is - like each little nibble of a chocolate bar until the realisation you’ve eaten it all! I will hold that realisation image as my dream!
Thank you for taking the time to share your experience.
hey wwwdot I must know, are you doing better now? Has your fatigue and brain fog improved? I’m struggling so much with it right now. I’m still months away from major improvement and I worry my fatigue will not be completely reversed. It’s made it hard to function.
I am going in the right direction and I have been experimenting and keeping notes. I went from EOD to ED to see if I could get rid of that in between “tired/recovery” day. It seemed to work and my energy and fatigue levels were more even. Yesterday morning I felt good so didn’t SI. Yesterday pm I felt exhausted and unable to engage in conversation without getting snappy and irritable. Had a good nights sleep but still tired and exhausted today.
What this tells me is that ED is better for me at the moment. My next experiment is to take a leaf out of Wizards treatment regime and see if half doses through the day helps or even a half dose a day.
I certainly notice a big difference between EOD and ED in terms of fatigue.
Hope this is clear ! Let us know how you get on please Big hug 🤗
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