Don't know if it's nerve healing , but after B12 ,if I was low , I get like weird itchy, physical anxiety type annoying feeling on muscles for a while which eventually turns into heavenly relaxed very pleasant feeling. Been wondering if it's not nerve healing is it just energy restoring when cobalamin turns into adenosylcobalamin which is important in crebs cycle. As my biggest symptom is not turning food into energy,doesn't matter what I eat and how I eat get no energy and I describe the muscular fatigue like emptiness in muscles, not weakness the way I would not have strength. I have strength but lacking stamina. But when B12 is good it feeds the system and I get energy from food as it should be. Good days I hike, xcountry and bike without PEM, food after exercise restore the energy.
Anyone else?
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Justiina
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I can’t say I have the same symptoms as you, however, I would say that before diagnosis and when I was receiving inadequate injections I felt generally exhausted and my muscles had no energy to do exercise.
Now that I’m on the right frequency of injections for me I don’t suffer from that same exhaustion and generally my muscles respond well to exercise.
Maybe you need more frequent or regular injections so that you feel on an even keel rather than being up and down?
I agree, I need injections more regular basis to keep feeling good. I have made the mistake trying to cope with less.
How would you describe the muscular feeling you had?
I seem to have a lot of difficulties to explain it to doctors as they think it means I can't do things. And I try to explain it's not the problem, it is more like lactic acid type build up and less tolerance to lactic acid. Like I can effortlessly sit down to the floor and get up without using hands, but my muscles just get stiff and tired if I'd were to do it 10 times. I have had that symptom for over 20 years until I started injections and BOOM I am able to tolerate exercise.
Same with tiredness/fatigue/feeling drunk ,they think it mean sleepiness. There is no way I can explain it so they would understand it without asking am I sleeping enough when I have just explained I have good sleeping routine but I sleep better on B12.
One of the problems might be that the doctor(s) you have spoken to don’t exercise and therefore don’t empathise or understand your problem. They think you’re fine if you can live a normalish life and to them that may not include exercise at the level you feel you should be able to do.
Having said that, unless you’re very young (say under 35) you might be expecting too much when you hope to get off the floor without using your hands 10 times in a row!
I don’t think I’ve ever thought as carefully as you as to how my muscles and exhaustion feel but maybe an example would be the time I cycled 8 miles to meet a friend and we were due to go on a long distance bike ride, something I’ve done very many times over the years. I felt so exhausted by the time I met him that I had to turn round and go home and spent the rest of the day in bed. Nowadays with adequate injections I’m back to longer distance cycling (or will be once the ice/rain/wind settles down).
True! Doctors I have met do not get the idea of exercise!
I am 41 and getting up from floor without using hands is a basic exercise. But that troubles doctors that I get up even just once effortlessly, they think since I can do that I am not sick. But yet again that's because they can't ,they are that generation who do not do balance training. I have, I grew up in country side, skiing, climbing, hiking etc. My muscular memory is excellent.
So I am always considered healthy because I can walk to doctors office.
Well I have made a decision to start self-injection when my prescription for shots run out. I can't afford to get as ill as I have been just to point out how ill I get so they would investigate it.
Before my injection I feel like my muscles are weak and like I’m treading water but not really going any where so my energy is soon gone.
Check your folate checked if it’s low it may be contributing to how your feeling. I’ve found taking them everyday it’s made a difference and I can cope till my next injection
As a precaution, have your iron/ferritin levels checked. I often have problems similar to restless leg, but not quite. But I do get kinks, jerks, and general weak feeling in my legs quite often. Recently found my iron levels were extremely low and am having ferritin infusions as my Hematologist told me iron supplements would not be as effective.
Yeah my ferritin was dropping and fortunately I caught it just in the time, so supplementing worked. I should have noticed the symptoms way before but I blamed B12 not working as well it was.
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