I have my 5th shot due today. I dont feel much difference but because I'm not working (just started 4 weeks off sick) I do feel marginally more capable of day to day activities. I'm also not as angry as I was last week.....☺️
But the tiredness is endless. I can have so much sleep and night and wake up and feel ok, do a task and feel like I want to put my head down right there and then.
I had 3 naps the other day.
I dont think my hubby was impressed.
How long during or after treatment did the tiredness go?.
I've coped with the pins and needles and numbness for so long, I can cope with that but not the fatigue.
Also,
I asked the nurse to give me a health check-weight, blood pressure etc. I think this will help with the gp if the shots dont work and I need to ask for an intrinsic factor test or more frequent shots.
(My b12 level was 169)
Sorry, I just needed to share.
I hope everyone has a great day.
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Peppermints
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I may not be a good reference point because it took several years of daily jabs before I wasn't constantly exhausted. My relatives bounced back after several weeks. I guess it depends how severely b12d you are. Sleep is very good though, that will help with the healing so sleep as much as you can.
😊😴I've always been able to sleep which is good. And at least i have an answer as to why I wake up tired for as long as I have.My GP had the nerve to say it was "tired all the time" syndrome.
I'll never forget that. It made me feel a fake. I dont go back to that gp now.
He couldn't even bother to diagnose you with CFS? 😬 Sorry only half joking. I've had similar GPs. One that saw that my labs were distorted but decided instead to give me Prozac because "there are just too many things we would have to test for". ??!! It's nice to finally have an answer, isn't it!
Thanks! It's ok, I mainly blocked it all out - luckily I wasn't creating too many short term memories back then 😜 I do remember frequently coming on the forums - read as much as I could, even if I couldn't retain it. That's the main thing that kept me going.
You will get there eventually. Don't be too hard on yourself in the meantime. 🤗
I'll try not to be too hard....😞These forums have helped me so much! I can't begin to explain.
The fog hasnt cleared yet mind. I wake up every morning and have to think what day is it, what am I doing today. I have to leave myself notes and I still even forget things...😵
well i was 190 and felt the same. I hate to say it took 6 months of daily injections to get energy. I mean I got it very slowly. I tried spacing the injections out and all the symptoms would come back. You must be patient! Hang in there, things will get better. I have so much more energy now, but it took time. The best thing you can do is just focus on getting better and not much else. i dropped almost everything. And yes, i only took one week off. It was horrible but now so much better. This forum is a life saver. I too was reaching out for any glimmer of hope when I was in the beginning stages. I would do what ever it takes to get daily injections. Now that I am trying to be more active, i have had to go back to daily injections even 1.5 years into it.
Still suffer badly with brain fog and tiredness after 22 months of daily injections. You won’t want to hear this, but your looking at at least two years for small nerve fibres to repair. I am convinced we may never be 100%. But with modern life the way it is, healing is significantly impacted.
When I started looking at my results and tried to stand up for my health, I was angry and felt neglected by the gps but I have to understand they have ten minutes for each patient. They dont have time to give us a biology lesson on our results. BUT, they SHOULD listen to is when we go back with knowledgable comprehensive data or information that would help us rather than hinder us.I had to say to all the gps and specialists I've seen, I dont want to be lll, I dont want something wrong with me, what I want is a diagnosis so I can help myself.
It's so hard to know where some of the issues start and finish and so many symptoms cross over from one deficiency to another....this is the hardest thing to explain to my husband. He is a chemist, notbinto biology. He thinks nowbive nearly finished my loading doses and my script for vitamin D, I should be fixed....he keeps saying, how long before the shots make you less grumpy....😵😵😵💉
🤦♀️
It's a long road ahead I suppose but at least I have more knowledge than when I started a few weeks ago from on here👍🏻
Everyone seems to heal differently, I can't remember how quickly I responded now but it did steadily improve and I'd say within 6 months I was feeling much more capable, my jabs don't last long enough to keep me full of energy until the next one so unless I self inject I'd say 5 out of 8 weeks are good now then the 3 weeks until my next jab the tiredness, clumsiness, itchy skin and brain fog etc creep back in.
I would definitely check your folate and iron levels too I always find the tiredness lingers more if they are low. Good luck and hope you start to feel a difference soon.
As you can see, some of us got worse before better. Some of us took quite a while to get there. Those who recovered quickly and can cope with an injection every 3 months to effectively maintain health are far less likely to be using this forum, I'd guess.
There can be other problems too, which are worth checking for. How are your folate, ferritin and vitamin D levels ? How is your thyroid ? Get a supportive GP to test these levels too.
While my B12 was just below range and my folate and ferritin were low within range, all three were treated, as by then my hair was falling out and my gums were bleeding. Also I was found to have osteoporosis of the spine, quite by chance I had an automatic Dexascan. Lucky. So my vitamin D is on prescription now.
Like some of the others who have replied, inmy case it was a slow road to recovery and for me it was not always linear, so I think it’s best to expect it to take time.
On the plus side it’s great you are seeing improvement so soon, I felt even worse during my loading doses. The most important thing is to get the treatment you need (it takes a while to figure out how often you need injections) and to look after yourself as you heal - keep up the naps! It’s great that you have found this forum too, it saved my sanity when no one else understood.
I’m so sorry to hear, you are on the road to recovery and it will take time. It’s not a broken arm or leg. We have received a full body attack, every single cell. I feel recovery depends on age, length of deficiency, severity of deficiency (symptoms) and if you have other illnesses or deficiencies.
For many of us, trying to describe fatigue to a healthy person, you may as well try and educate them on the quantum field theory in curved spacetime !! Exactly.
Now you’re husband is a chemist you say. He may understand ATP and NADPH. For yourself, there’s the 12 spoons theory. Sorry, the image won’t load
Have low expectations of yourself, where you can save energy do (I don’t brush my hair, housework- bare minimum).
The important thing is if you do too much, your body will retaliate. So, accepting for the meantime you need the rest. Always take your mind to a beautiful, idyllic place when snoozing. Although, Ryan Gosling is my Mr McDreamy. 😁
Peppermints thanks for the update and we're all rooting for you!
I wish I could make the healing progress faster for you!!
In the meantime maybe one of the kindest things you can try to do for yourself is, as you feel able, focus on beginning to more fully let yourself acknowledge that the tiredness is part of a real physical illness you've been fighting against most likely for many years now. I know the fatigue can be almost traumatic.
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