I am going to an appointment later today to discuss my test results and begin B12 injections. The doctor's surgery is 3 minutes walk away but still the thought of having to go to 6 appointments in 2 weeks to get these injections is daunting. I rarely leave my home at all.
I am not sure it is possible for anyone who has not experienced this kind of fatigue to understand what it is like. It's not just 'feeling a bit tired'. It's an almost total lack of any energy reserve, physical or mental.
The usual attitude that tends to be put forward, that you should 'fight' an illness, does not work well for me. I have found it's better to stop fighting and work within my limitations.
Give up 'fighting' but don't give up!
However I don't think we should ever give up asking for what we need, whatever that is: doctor's appointments, tests, a diagnosis, changes in medication, practical help, psychological support. I have found that a stubborn persistence in this is better than seeing it as a 'fight', which just makes me feel more exhausted!
What I felt I needed most was a diagnosis, so I got a boost from knowing that I have a B12 deficiency. Before that I had a lot of symptoms that did not really add up to anything. B12 deficiency is something that can be treated, and even if it takes time it's good to know that things are moving, slowly, in the right direction.
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Permexpi
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Thank you for your post Permexpi . You are absolutely right -you cannot fight that sort of exhaustion that you are experiencing. It is nothing like normal tiredness / exhaustion. It is so difficult to explain it to to “ civilians” They cannot possibly understand .
it can only be understood if it is experienced. And you wouldn’t wish it on your worst enemy.
Great that you at least have a diagnosis.
Yes , it’s persistence that’s required- but that’s not easy when one feels so bad .
The nurse today, making my appointments for the next 5 doses of B12: "Would you be able to go to [different surgery over a mile away] for some of them?" Me: "Uh.. no."
I can't fight it, but there are days when I have no choice but to put one foot in front of the other and carry on anyway as best I can, because I have no choice - those are tough days! They are usually followed by a few sofa days to recover.
What I hate is telling my family that I'm too tired to go for a walk, and getting the reply 'a bit of fresh air will make you feel better.' Honestly, they have no idea!
I used to use words like "tired" and "fatigued". But it dawned on me, finally, that other people have life experience with being tired and fatigued, and they automatically plugged their life experience in when I was using those word to try to describe what I was experiencing. And it finally dawned on me that the best word to describe the way I felt was "sick", and I started explaining to people that they wouldn't call into work in the morning and say they wouldn't be at work because they were tired, because, first of all, they WOULD go to work when they were tired. But there's a level of being sick beyond which they would NOT go to work, because they were sick. I used to lie in bed sick, and try to describe to myself how I felt, and finally I recognized that I felt as though I was slowly fading toward a painless death, as though my life spark were fading away.
I have been injecting B12 daily for just over two years, and fortunately, though I sometimes feel sick enough that I wouldn't go to work (if I weren't retired), but no longer feel as though I am descending toward a painless death.
Do you have neurological symptoms? (If your fatigue is mental, I would probably class this as neurological.)
The reason I ask is you mentioned you are due to receive 6 injections. This is only the correct NHS treatment for a person who has a B12 deficiency without neurological symptoms. If you have neurological symptoms, the treatment is an injection every other day until no further improvement.
Thanks for that. I don't have the obviously neurological symptoms: tingling in hands/feet, weakness or nerve pain. For me its mostly just crushing fatigue. I see your point about mental fatigue but what I get is 'brain fog' rather than confusion. However there probably is a grey area when the progression of this deficiency goes from mild to more serious and it can be hard to see the changes in yourself as it is so insidious. I'm grateful to have had it caught at this stage. Also good to see NICE guidelines, that should, hopefully, lead to a bit more consistency in diagnosis and treatment.
>>It's an almost total lack of any energy reserve, physical or mental.
That is a very insightful way to express fatigue.
I have asked a few people the most fatigued they have ever been. They tell me the time they were most fatigued and have pride in their experience. I then tell them they were not fatigued and they get angry which makes sense. Thing is they all express how they slept and rested after being fatigued. That is not fatigue as I experienced it.
If what you are experiencing is not neurological what is it? My understanding is it is neurological. Although not likely to be diagnosed as such due to the misconception of most physicians as to what you are experiencing. They will tell you some fresh air will do you good.
The concept of wait until you experience peripheral nephropathy before stating every other day injections very well may be prolonging suffering.
I think if you stay in touch here you will find it very helpful. Not unlikely that will be hard for you and keeping everything straight not possible some time. I find it worth the effort.
Do you know if your Chronic Fatigue is completely linked to your B12 Deficiency, and therefore a major symptom of that, or , is there the possibility that you have Chronic Fatigue Syndrome / M.E as an illness in itself?
This is an important question to answer because the way you improve Fatigue is different if it is a symptom of another illness like B12D or caused by CFS/ M.E , the illness in itself.
No matter which you have they take being patient with yourself , and take time to control and recover from. Activity and Rest needs to be managed . Taking breaks and needing to cancel things isn't a failure but a step forward in being successful at managing these symptoms guilt free.
As you say Extreme Tiredness and Fatigue are two different things with very different symptoms too.
Extreme Tiredness is usually caused by over exertion , mentally or physically and can cause soreness , brain fog and sleepiness , lack of coordination but in its extreme rather than making you sleep more , or all of the time. it can cause you to find it difficult to sleep , promote headaches , dizziness , palpitations and insomnia .
It can cause you to become " wired" as it's often caused by the body being pushed beyond its physical and mental limits at its current health level , basically being put under Stress , which triggers the " fight or flight" and " rest and digest" responses of your nervous system to go out of balance. Tiredness requires rest, good sleep and activity pacing to get the balance back .
Extreme Tiredness can eventually trigger Fatigue, but Fatigue isn't always caused by Tiredness.
In fact, you can have Extreme Tiredness and Fatigue living in a battle of wills together in your body at once.
That is probably the worst nightmare scenario, when you are permanently Fatigued but also so tired because your body will not let you sleep.
Fatigue on the other hand , depending on its root causes, can get worse with inactivity .
Rather than causing sleepiness the Fatigue promotes sleeping and despite the sleep or rest , and sometimes , because of the lack of mobility (if this is in its extreme) the feelings of Fatigue and Tiredness get worse and worse .
Fatigue as part of a chronic health condition can cause muscle soreness and weakness, loss of muscle mass. chronic pain, poor circulation, Migraine , difficulty breathing and tremors on exertion, extreme pain or heaviness in the limbs in activity, poor thinking skills and unstable balance.
Fatigue breeds Fatigue if it is part of a chronic health condition.
The Fatigue can become medically classed as Chronic ( but that is different to CFS/ M.E) if it lasts for over 21 days per month in a patient with any illness.
These types of Fatigue can be improved by slowly and gradually building up activity within your comfort zone and having a good sleep routine .
But it does not feel easy to recover from Fatigue that has become chronic. The first efforts no matter how small can feel like walking through wet concrete and damp velvet curtains.
Little movements for a few minutes each hour is an important start to prevent the Chronic Fatigue sending you on a vicious circle and causing pain. But as your abilities grow you do feel more energy , the pain and heaviness in your limbs decreases and you do begin to get your abilities back , as long as you understand that your "New Normal" needs to be a well balanced Pace of Life.
Fatigue caused by CFS/ M.E is unique in itself.
Chronic Fatigue Syndrome / M.E is a chronic condition in itself and the rules are different. Unlike with chronic fatigue from another illness battling through the fatigue of CFS/M.E even in a very slow and balanced way isn't necessarily the solution . If you do activities or too much activity when CFS/M.E is flaring you don't increase your energy , in fact you can make the Fatigue worse.
It doesn't mean that you don't use paced exercise to try to help the condition especially when the signs of Fatigue are at their worst with CFS/M.E rest and minimal light stretching is required until a flare has passed.
You don't use gentle exercise in a flare of CFS/ M.E in the way you do to combat Chronic Fatigue caused by other illnesses because it makes it worse.
Instead you manage your activity until you feel periods of energy, and only then the next step is to follow activity which must be careful timed with plenty of rests in a similar way to reducing Fatigue in other illnesses . This is done to prevent triggering new flares and this system needs to be followed even when the CFS/M.E is in remission.
You will not necessarily trigger Chronic Fatigue if you have another illness that can cause Fatigue and do too much activity ; you cause tiredness or acute fatigue first .
You will trigger Fatigue if you do too much activity or the body is reacting to another health or stress issue with CFS/ M.E and sometimes too much activity can be what you were doing as part of a healthy well paced day.
That's why it is important to know which type of Fatigue you are suffering with before you proceed with an activity programme to get it under control. The pace of what you do to reduce Fatigue needs to fit the condition and requires it's own form of wider Self Care and treatment. Diagnosis of the type of Fatigue you have is key to it all.
Thanks! If being topped up with B12 does not have a significant impact on my fatigue I may have to consider other explanations for it. I am aware of ME/CFS and have found pacing the best strategy (after a long period on the push/crash cycle) for living with fatigue. I'm not sure if I would waste energy on pursuing a diagnosis of ME/CFS, given that there is no treatment or even much in the way of support from health services for it, but I will cross that bridge if/when I come to it!
I think it's worth knowing if you have chronic Fatigue from another illness, or , CFS/ M.E, and getting or ruling out the diagnosis because it does make a big difference in how you can help yourself.The available services and the help you can get from Physiotherapy and Pacing Courses involves different techniques and the goals and types of exercises set are very different even if they come for the same core of activities.
Drug and Supplements treatments and Sleep Management are more common as part of overall care for CFS/ M.E . These don't get offered easily to you unless you have a confirmed diagnosis.
Diet , exercise and pacing along with treating and getting better management of the illness which is the root cause of the Fatigue as a chronic symptom is more important in non CFS/M.E. But again , getting the right diagnosis and help for fatigue induced by that illness involves working with the GP too.
Much like dealing with any chronic illness , including P.A and B12 Deficiency there is treatment for CFS/M.E but there isn't a " cure".
Treating them all becomes much easier long term if we know which things we have so the best treatment can be used to target the symptoms. Knowledge is Power with chronic health conditions.
Even at the point you are at currently you can be referred for Pacing Courses via the Physiotherapy and Chronic Pain services and get Sleep Management advice .
In fact, it's worth getting yourself referred to those things as soon as possible because the waiting list to get on a programme can be 6-8 months.
So at least if other treatments and self care have only started to begin to help you , you know that professional support is on the way . Plus keep a diary of your symptoms, sleep, activity and fatigue from now as this is useful with the GP and at clinics because it helps them to assess what level of therapy to give you first.
An initial Chronic Fatigue Assessment is done via a consultation with a Pain and CFS Consultant, Physiotherapy and Psychologist and with other tests to rule out other health causes they make the diagnosis and this helps sets the path to which form of pacing and physical therapy they take you through, as well as how long that therapy may be required.
Just be aware even with B12 injections Fatigue does not pass quickly.
The injections won't be enough alone to trigger a rebound in energy that will get you back to well paced "New Normal".
It will still take time and a lot of patience to build your activity levels up and find your consistent daily level , as well as a certain amount of acceptance that you may not be able to do certain activities that you did under your"Old Normal" . This understanding alone needs a great deal of support to cope with , not just from family and friends but also by having a proactive relationship with various medical professionals.
Fatigue caused by another illness can require as much help to learn to manage in the short term as CFS/ M.E requires in the longer term.
I have had to manage and alter my management of chronic Fatigue caused by other illnesses , including more recently B12 and Folate Deficiency , over the last three decades , it is often debilitating; but I don't have CFS/ M.E.
My daughter, however, has some of the genetic conditions which cause my chronic Fatigue but she also has CFS/ M.E , she just turned 21.
I feel for her so much because I can see that it is even harder for her, the Fatigue can not be improved in the same slow way it can for me if at all when she has a full blown flare up.
I know the feeling of the Fatigue but the severity of it and often unbeatable challenges of it are so much harder for her and very different to my own.
She is luckily starting her first eight week CFS/ M.E specific pacing management course next week, but began the talking and dietitian therapy a few months ago.
I'm mourning the loss of our Hydrotherapy services in North Wales because that was the best exercise I found to help overcome many of the barriers and to build back muscle strength with less exertion, but at least I am still getting Physio led Manipulation therapy and gradually paced supervised land activity.
It is out there for use in the NHS , unfortunately, you just need to do quite a bit of research about local services and actively request your GP for the referrals to get it as the GP surgeries seldom know, or keep up to date with , what is available for you to us. As well as having to deal with the waiting lists.
I and I’m sure everyone on this group know exactly what you mean by fatigue, it’s dreadful. But now you are being treated you will improve. I think you are right to pace yourself, trying to do too much will not help. I hope you manage to get to all your appointments and begin to feel a lot better really soon. Take care 🥰
I understand the fatigue. I was sleeping 16 hours per day. I hope you are like me: as soon as I got the B12 I turned into an energizer bunny. Don't skip those appointments! I need injections every 2 weeks to maintain things. You might consider doing what a lot of us do and self-injecting so you don't have to go to the doctor so often. It give us more control as to the frequency of dosing. The UK switched to only every 2 months but I need every 2-3 weeks at the moment to keep my feet from getting tingly again.
When I was really ill, I would often sleep for about 14 or 15 hours. Well for some people, that would not be possible because they have to go to work. Work wasn't possible for me.
If I went supermarket shopping, it would cost. Air-hunger (gasping yawns), confusion, memory loss, dizziness : all draining from use of scant resources both physical and mental. Home, food thrown into cupboards, fridge and freezer, I was finally free to drop onto the sofa and sleep for about 3 hours.
So fighting /giving in ? No real choice.
What I did find was this: to get through tasks, even simple ones, when struggling with energy levels, required anger. I'm guessing adrenalin.
If I had to explain this to anyone (and as you can imagine, I quite often did ) I'd tell them about what I saw in the faces of runners in the London Marathon at about 3/4 of the way through. Not determination, more like downright teeth-gritting fury. With nowhere else to go but on and on and on and on..... and that certainly isn't "feeling a bit tired", is it ?
It literally is "running on empty". Nothing left.
When Nackapan talks about the activity for the day, I know exactly what this means. One thing: either going to the GP for a B12 injection or going up the road to the library to get on a computer to contact this forum - but never both, and nothing else that day. Standing still a problem: trying to prepare dinner made my legs shake, grating cheese made my arms ache.
Get as much sleep as you need, when you can, get rest otherwise where possible. I'm sure it helps with healing. Do not waste energy trying to explain how this feels to others- those who love you best will see it for themselves. Hard on them too.
It does get better, much better, but it can take a long time.
Get regular monitoring on folate, ferritin, vitamin D and thyroid, as these can all go a bit wrong too. Your serum B12 level ? Should not be retested after injections have started.
If your surgery want to know how you are doing, they'll have to ask you.
Hi Permexpi,I had my loading doses at the beginning of June, having spent most of April and May sleeping as much as possible. After injection 2 I felt things change.
In July I did a 4 mile flat walk in Norfolk. Slept the day after.
Today I climbed Gummers How in the Lake District. 1 mile walk, but a bit of a steep climb 100m up, out of breath, but my first hill climb since treatment started! It really felt like an achievement.
I have found I need to top up the NHS injections. I need them every 4-6 weeks.
You will get better and you will be able to do that walk.
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Well, at least I've tried.
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