Hi All
Belated HNY and CNY. 🐇
Had family over for a long weekend and spent a day prepping, cooked a meal, went for a walk, lots and lots of talking over a period of three days. Thought I had paced myself well and carried on as per … but
today my arms ache, thumb joints ache, teeth ache, headache, throat lumpy, tinnitus really loud and feel cold.
Did I just over do it even though I had a good time? I still injected EOD. Guess the feeling good and back to normal is still fragile?
Sounds like you did very well.Alot going on.
I find even 4 years on I don't get ordinary tiredness..
But crippling fatigue giving the symptoms you describe and more .
Even pacing doesn't always pay off if you simply do alot.
that’s kind of you to say. It’s a funny feeling to have so many symptoms again as I just expected more fatigue than normal. Can anyone explain why it is the case that instead of extreme tiredness so many symptoms return?
Thank you in advance for any replies.
It's also a positive sign of how quickly you managed to function again. Early days .
I really get frustrated too.
An okayish day has a price.
Doesn't seem fair at times.
Sounds self pitying but it isn't.
So difficult to pace when you are enjoying a few hours abd people around you forget your new limitations.
Then you do.
No rhyme or reason at times .
B12 is the powerhouse vitamin for your nervous system. And in recent days in the UK and Europe, the temperature has dropped.
Plus, the stress of constantly talking, worrying about cooking, and being outside walking is alot for your nerves to handle when they have been so bereft of 'juice' to keep them in shape.
If I recall, it is still quite early in your recovery. I think you need about a year before your body has enough B12 juice to withstand the rigours of stress, exertion, being outside in winter, and probably having less sleep and rest than usual.
Basically, it could be that your body has 'pulled' B12 from other random places. But it also sounds like your immune system is low (throat issues, feeling cold). And B12 serves a good gut balance, which is where 70% of your immune system is said to reside.
Continued injections, good sleep, and more time is needed before you build up more strength in your nervous system, I would say. B12 deficiency is the ultimate proof of how complex the body is and how little anyone really understands about it.
thanks so much for this reply Pickle500 because you’ve answered my question too. Was becoming discouraged by slow symptom improvements - I’ve been injecting myself with B12 only since May last year and since September I now inject every second day
In retrospect however I realise that I do have more energy and while my sleep is still very patchy (2 to 3 visits to toilet in the night) I’m able to easily walk fast for over an hour now whereas a few years ago this would have exhausted me.
I am glad you had a lovely weekend. But sad that you have been left feeling so fatigued..
I can guess that you were very excited. Also, with all the house and cooking preps etc, you may have made you have been doing double shift working for the whole time you had family there.
Lots of fun, talking,walking, entertaining etc..😄👌😁. Having guests over is exhausting normally isn't it? It sounds like you all had a great time, doings lots of thing. You are going good on lots of levels there Weedot.
Knowing nothing about much, I would only suggest as you are in your recovery, it seems to me that you might well tire out given sustained high demand and that "front of family performance" you have with guests?
Perhaps there is some learning there for you? So, at times like those you might need to build in a time out to nap and pace yourself? Or maybe even up your B12 dosage temporarily to reflect the extra socialising demand? Just some thoughts. But it's great you were able to raise your game and have a good time? 🌻
Brilliant last sentence Pickle 500.
As I struggle occasionally with trying to explain to friends and family what’s been going on these last 2 years, I marvel at how complex it all is and how great it is to have these conversations on this forum. And how much we learn! At least we don’t take moments of joy and socialising for granted. Ever. Glad you managed so well Wwwdot and had a triumphant time while it lasted.
Well done, its lovely you were able to do all that and still be on your feet, there are occasions when I have a friend for lunch and we chat for a couple of hours that at the end after clearing up I go to bed for a few hours just to be able to get myself functioning again the next day. Everyone is different and I think its fair to say we each learn how to pace ourselves and do what we can on any given day, it is frustrating not to be able to just get on with things as we used to but I find pushing to hard means I pay the price later so I try and even things out just to stay on top of jobs. Glad you had a good time its good you enjoyed yourself and hope you feel on a more even keel again soon
Best wishes and I hope you have a good day today😀
hi, I think you did extremely well!
Maybe next time delegate instead of trying to do so much yourself? I’ve learned the hard way and end up beyond tired, feeling absolutely shattered for days with many symptoms returning and have had to come to terms with accepting and asking for help from visitors.
At least you did it, you will recover and it sounds like you had a lovely time 😊
The D word - you are so right! It’s tough I have had to delegate so much - looking after the livestock, the gardening, my work, the family meals… I can understand better now why redundancy and retirement affects people so much. I hadn’t realised how much I defined myself by what I did rather than who I actually am! Wise words and thank you - you are right!
wow you are all so so amazing. The headache got so bad and the tingling and aches in my arms so uncomfortable I decided to do another injection at midnight even though I wasn’t due one until this evening. What a difference it made - within a couple of hours the headache receded and my aches and tingling stopped and I managed to fall asleep.
This morning no headache and tinnitus at usual level instead of a roar!
Lots to learn from this as you say … I don’t think I could have physically done less (although perhaps having to deal with a leak in the roof in the spare room was a bit much 😂 - I am a water sign and I seem to attract water issues) as I did a stew, frozen peas and frozen mash to minimise work and then a takeaway for second evening.
Could I have talked less - fortunately the main topic of conversation was landrover sun various states of diagnosis and repair (and we think B12 is complex!!! 😂) so I was able to just be there without too much effort.
The walk WAS a challenge and whilst everyone else came back warm and invigorated I came back very cold and shell shocked is how I would describe it!
But it was mentally a great achievement and lots of learning from it. You are all so kind and wonderful - you are my silver linings! Thank you
imagine what you would have been like if you didn’t have the shots? It’s true, we start feeling good and think it’s over then exertion shows us our hand. Keep up the eod! I have these set backs too. With a little rest I get through them. Not sure how long you have been doing eod, but after 1.5 years I started adding more exercise and little by little, set back Follower by rest then set back, I was able to get farther than I ever imagined.
During those set backs I didn’t exercise for a week until my body told me I was good, then eased back into the exercise.
Funny thing is people will huddle you when they see you do all you do, but they don’t see you when you are down after the exertion. I could care less what people think. But I do think about dialog to have with people. Something that is quick but gives them an idea of it’s like batteries, they work until drained… and when drained, it takes a very long deep charge.
Hi B12life
Great insight and comforting to know that I had a normal response to overdoing it.
I am relatively new to all this - DX in October last year and after horrendous reversing symptoms to had two doses a week over five weeks, I then began EOD early December.
I love the analogy to batteries as family are all engineers so understand the problems of completely discharging batteries - so with vitamin D deficiency too - clearly I also need a solar panel!
I have done some walking today to feed my sheep and just kept it light duties!
Thank you so much for sharing it is very helpful to a newbie!
That was a lot of fun and for 3 days. That is awesome you made it through 3 days of fun!!! Yay! Unfortunately, I feel we pay for it for sure. Your symptoms are what happens when I overdo it. I usually inject extra B12 when I do that. Twice in one day.
Yesterday, I went for a photo drive to a place I have been putting off. I dragged myself to get going but once on the road, I had a great time. But today, my hands and legs are quite sore, and I am a bit wiped out. But not too bad. I could never go for 3 days with all that talking. I spoke on the phone for 2 hours a few night ago and I crashed even more than I did after my drive. the talking really makes me brain tired. I think talking and noise are my worst daily irritants.
Hi EllaNore
Yes I really pushed myself because I hadn't seen my brother for so long and only once since we lost our sibling which is why my mum now lives with me. So it was important that is was business as usual as far as possible as much for me as for us all.
My head has really suffered my teeth are aching and ears ringing and a dreadful headache and only now you have said I realise I am sensitive to noise. I have rested up today - had B12 today as I felt I needed it and I was so cold despite the heating being on!z
I think in future I will take a leaf out of your diary of experience and inject more frequently when having a good (albeit physically and mentally) demanding time.
Thank you again for sharing your experience.
That is really nice that you all got together. Losing a family member is very hard. But it also brings people together to remember good times.
Yes I am freezing. Granted it is winter, but I am not usually cold like this. I have blankets piled on and heating pad and an electric heater. It is my feet the most. But yes cold is a bugger.
Extra B12 and rest should help you soon. 🌷Take care.
Wwwdot,
I am sorry you are having symptoms. Thank you for sharing, It was very helpful.
I read this post and something resonated but I could not put my finger on it. I think I have it sorted. Social interaction causes my symptoms to worsen for a while. I can walk 8 miles and it does not cause my symptoms to return. 30 min walking with friends and then a very nice lunch and symptoms return. That is all I know so far.
I look forward to spending time with those I love. I enjoy it while it is happening and it feels normal to me at the time. Maybe a little more tired than normal.
I am guessing what happens is being with those I love causes my neurological system to heal and the symptoms are signs of healing.
It is so acute I left New Hampshire and am spending 6 months in Scotland. When I planned the trip I was not aware of the social interaction dynamic, I just felt I needed to get away. I am not in contact with my friends in NH by design and they are aware of that. There is a big party planned for when I get back.
Note; DX 2 years ago. Self treating with sublingual supplements. Self DX B6 deficiency. Started with B6 injections and 4 hours later the pain greatly diminished.
Hi Wizard
Scotland is in my blood and I am so pleased you are recuperating up there. You are right I find talking very challenging and listening to others but as that has formed a large part of my work for so many years, I can go into autopilot ... BUT my batteries drain afterwards to a dribble and almost stop! Although, I do feel energised and buoyed up afterwards it is short lived!
I have a rare day on my own tomorrow as family members are aware from home on business and I am begging them not to keep calling me every hour to check up on me! I am really looking forward to having a day when I don't have to talk or answer the zillions of frustrating questions such as "Where is ...?", "How do you ....?" "Have you seen ...?" The added bonus is I will have a whole day without having to listen to the talk about the joys and tribulations of Land Rovers!
Please say a warm hello to Scotland for me!
Wwwdot
I hope your day on your own went well and was free of Land Rover joys and tribulations. 😃
I am going to Loch Lomond tomorrow with friends. I am approaching it differently. I am still excited and looking forward to it. I see the social interaction and being in beauty as positive and healing in a way that other experiences are not. I am seeing that my neurological system needs energy to heal so I am not using energy to experience or accomplish other things.
Journey on,
Wizard.
What a lovely post and a lovely mindset. The mind is super powerful so I know this will be a positive and rewarding experience. Journey safe my friend 🪄
I got ready to head out to Loch Lomond. Checked in with one of the friends I was spending the day with and had a very fun chat. After the chat was over I could feel the fatigue coming on. More important I could feel how I 'went past' the fatigue to keep going.
I still went past the fatigue but not as intensely. I and my friends had a meaningful day. I was a bit off but not distressingly so.
In this moment it seems symptoms 'follow' fatigue and fatigue should be my focus. Not preventing or coping with fatigue rather experiencing it and that will lead to a way to heal my neurologic system.
Understanding when the pain etc is present healing will not happen.
Sounds like a learning journey too in a beautiful setting 🌳🌲. Insightful, I hope I understand what you are saying.
I think 🤔 you’re saying (please correct me if I am wrong) is that it feels like mental fatigue and hence mental B12 needs can be at the expense of physical needs?
When the physical symptoms occur because B12 been requisitioned by the brain, pain occurs which elsewhere which suggests no healing.
I recognise this scenario of pushing through the mental fatigue of socialising.
I resorted to an extra B12 injection. Based on my journal, 3 days of socialising has taken 6 days to recover plus an extra jab needed.
Say hello to the wee haggis🐏🐑 on the hills for me!
I would not say you are wrong rather my expression was not correct.
I was both B12 and B6 deficient. I know the deficiency did not happen recently. It just got so severe that even current applied medicine could detect it. They only detected the B12 as it was < 150 or below measurable limits. The B6 deficiency I diagnosed myself by symptoms I experienced (Peripheral nephropathy that did not respond to B12 as it typically does.) and not the symptoms the medical personal incorrectly assumed I had.
My supplement intake and form of intake is fixed for the next 4 months due to availability. I am going with that is a good thing as there is no reason to contemplate that end of it for 4 months.
I think and feel that if I followed the pace, eat well, sleep etc that I would continue to improve but not heal as much as is possible. Right now I think what is best is to focus on fatigue
Fatigue in not being tired for me. If I am tired and I follow the pace, sleep well etc advice then the tired responds and I am not tired anymore. Fatigue is not how tired you get while in medical school!
This is they way I see it. Say I ran 20 miles when 40 years old I would be tired and exhausted when done. An hour after I finished I would be able to drive home and eat and rest and in a few days recover. My fatigue does not work that way. I am 67 now although this is not all an age thing.
In a real way what happened it I adjusted and learned how to mitigate the fatigue until it became so severe I could not. I had been to doctors since age 8 complaining of symptoms. One hematologist said I had three weeks to live but not a month.
So how do I heal from fatigue? Right now I am being aware I am fatigued and not going past it when that is possible. I then sleep no matter what time of day it is. I do not wake up refreshed and ready to go. In fact I feel a bit off for a few hours and sometimes a day. Repeat and over time I improve across the board.
Key is knowing when I start to go past a fatigue. When I know I am fatigued that window of opportunity has closed and I have to start over. I am getting better at it.
One 'trick' I use is to experience something I have not done before. Right now I am doing small jigsaw puzzles. 100 psc or 250 large psc. As I never did them before it is easier to know when I should sleep and don't go past the fatigue.
I can sometime use reading but not dependably as I am so used to pushing through.
My fatigue is always present sometimes I can go past it for a while. Pretty much I can sometimes move it around and that is as good as it gets. Not acceptable.
It is also key that when I successfully go past a fatigue which I now see as undesirable that I do not morphn morph into trying to catch up before I cannot go past the fatigue.
There is not much about the human body that is not affected by the neurological system. I have just decided to go with my instinct, having already done what is medically known to be effective by a very few clinicians.
It is much about unlearning. What I was told and what I came up with on my own.
Feel free to ask any questions as it is helpful for mef me to write it all out. I have designed a method for evaluation which I can write out if you think that would be helpful.
Hey Wwwdot,
I hope this finds you well.
I have some Land rover lore for you that you might want to share with the engineers.
If you go to Ecuador you can go to huge vintage Land rover bone yards they are common. You can get any part you want unless it rots, wire harnesses, anything rubber etc. For those parts you have to have a friend buy them and bring them to you in their luggage. You will owe them the cost of the part and a bottle of whiskey.
Here is the fun part. IF you scratch and expose under the paint every vintage Land rover in Ecuador was yellow because they used to be taxis.
I can sense a holiday to Ecuador coming on (virtual surfing). 🏄♂️Since going away for a few days a further landrover has appeared on the drive a red one ! 🚘 to join the orange and green one … it’s like having a bag of Skittkes on the drive! Oh well boys and their toys! 😂
To be clear you can get parts for a Land Rover in Ecuador. Unlikely you could get them out of the country.
My evaluation of why I experienced what could be seen as a regression is it was the result of my neurological system healing caused by my using my neurological system in a way I have not in a while. Specifically moving abroad and longer social interaction.
When I arrived here in December I walked 10,000 steps a day. As my neurological system healed my steps declined as my body needed that energy to heal.
It was distressing and I did beat myself up over it. I will gradually work up to walking more and am using the measure of 10,000 steps a day to protect from over doing it. Knowing I want to try swimming in the local pool and staying away from pushing towards that as best I can.
I am aware in this moment when I am in pain and fatigued from reversing out I will tend to have an emotional experience of questioning what I did wrong and what I am missing in my supplement regiment. I will also pine for a licensed expert to help me and that there is no licensed expert to help only those that believe they do.
On June 07 I will be attending my oldest daughter's the day wedding! 10 days after I make 6 connections in my travel back to the US. I will have that stress, the stress of all that is involved in moving back and I want to make 15 marbles out of glass as wedding day gifts for those in the wedding. So I have a major test to determine how I did and how I am doing.
Thank you this has been helpful for me.
Next steps on my GP journey - advice please!
New here and need help with next steps
What's the next step.
Thought I was getting better but seem to be going backwards at the moment. 
