What are the Signs and Symptoms ?
It is important to realise that the symptoms of Pernicious Anaemia varies from patient to patient.
One of the old, less specific symptoms was shortage of breath that could be an indicator of a great many diseases. Over the years ‘The Sighs’ has replaced the less specific ‘Shortage of Breath’ as being more descriptive of our members’ experience. Similarly ‘The Strange Tiredness’ is much more suggestive of Pernicious Anaemia than the older ‘Tiredness and Lethargy’.
Patients will experience all, some, or a few of the symptoms but to various degrees of severity and the levels of vitamin B12 seem to bear no relation to the severity of the symptoms either. We don’t know why this is but it is probably due to the individual’s physiology.
Common Mental Symptoms
As well as physical symptoms sufferers of PA also experience changes to their mental ability.
These cognitive symptoms are often more difficult to explain and deal with than the physical symptoms. It seems to be the case that these mental challenges are often not recognised or acknowledged by some medical professionals. As with the physical symptoms, the degree and effect of these symptoms will vary between different patients.
1. ‘The Fogs’
This is by far the most common complaint by sufferers of PA. Patients find it difficult to define exactly what they experience when on a ‘foggy’, but there is a general feeling of lack of focus and a lack of clarity in everything they experience. It’s as if the patient is experiencing being in a thick fog, with all of the senses failing to respond as quickly as they usually do.
The degree to which this occurs is directly proportional to whether the patient is experiencing a good or bad day. On a bad day it is possible that the patient will forget the names of even their closest relatives, be unable to recall even the most common proper nouns, repeatedly ask the same question, forget a conversation from even the shortest time before, make mistakes in their work — even the most fundamental mistakes and feel ‘not with it’. The patient will often seek peace and tranquillity in order to give full concentration to the task he or she is dealing with. The most common way in which the patient can explain what it feels like to be in a fog can be summarised by the following statements:
- “I just want the world to go away”.
- “I just want to be left alone”.
- “I don’t want to be forced into conversation”.
Patients also state that leisure activities such as reading, watching television or going to the cinema can be enjoyed during a ’fog’, but the next day the chapter of the book that was read, or the outcome of a television programme and the plot of a film will be forgotten. The chapter of the book would have to be re-read and the television programme or film would have to be seen again.
‘Fogs’ can last a few hours, a day, or a few days. Patients are aware that they are experiencing a ‘fog’ but are unable to do anything about it. It’s simply a case of ‘riding it out’ Most patients wake up either the next day or in a few days’ time and experience a clarity and focus to their thinking which had been absent during the fog.
2. Irritability, Impatience and Mood Swings
This is another very common condition amongst sufferers of Pernicious Anaemia and is probably has the greatest impact on personal relationships. It was only through the PA Society’s Forum that this characteristic has been clearly identified as being a major consequence of Pernicious Anaemia.
These periods of irritability or impatience or sudden mood swings can manifest themselves at different times and over different periods of time. Some patients are aware that they become irritable and lack patience on a daily basis, most usually in the afternoon of a working day when tiredness and problems with concentration results in a change in attitude and mood. The demands of work, or family or friends often lead to the patient struggling with tiredness and lack of concentration and frustration manifests itself in bad humour.
Other patients go through a period of calm before experiencing a few ‘bad days’ when the energy needed to meet all kinds of demands is non-existent and exasperation and exhaustion leads to frustration with all aspects of the patients’ life. This can lead to irrational and uncalled for outbursts.
It is important to realise that it is not all patients who display such behaviour, and often the patient is able to somehow develop a coping strategy that allows him or her to manage the frustrations being experienced. For others who are unable to cope with the pressure, the outbursts of irrational reactions to situations and demands can lead to work-place issues as well as problems with his or her domestic life. Having understanding work colleagues and an understanding family who are able to refrain from making any demands on the patient is obviously the best way in which to deal with this issue. This would take the pressure off the patient and lessen the feelings of frustration that culminate in outbursts.
Many patients are able to manage this problem by simply not dealing with any demands that are being made of them.
3. Loss of Libido
This is hardly surprising if the patient is feeling exhausted continually.
Common Physical Symptoms
1. Tiredness, Lethargy, Exhaustion, Fatigue, Weariness – (The Strange Tiredness)
None of the above words adequately or accurately explains the feeling that is experienced by the majority of patients with Pernicious Anaemia. The physical tiredness is also often accompanied with mental fatigue and apathy. The most common description recognised by members is that of “The Strange Tiredness” which is understood by most sufferers as being an adequate description of the experience. Sometimes the Strange Tiredness lasts for hours, sometimes days and often it’s the case that it never really fully goes away. It is also usual for the Strange Tiredness to be worse on some days than on others and it can be debilitating for the long-term sufferer. Patients and their families and friends often have to make lifestyle adjustments to be able to manage this experience. Many patients retire to their beds in an effort to manage their condition and the saying “at least ten, usually twelve and sometimes more” is sometimes used by sufferers to describe how many hours sleep they need. Feeling tired or exhausted can be a very positive experience as anyone who has played sport can tell you. But this Strange Tiredness is not a pleasant experience. It is an insidious, creeping, overpowering feeling that seems to sap any strength that the patient might have. It doesn’t often leave the sufferer being unable to do normal and everyday tasks but rather makes such tasks (however trivial) a real trial. Sufferers often cope with everyday work and domestic tasks, but most struggle to do so.
2. Waking-up Tired
This is very common amongst sufferers. Despite sleeping heavily for over the usual 8 hours the patient is still tired on waking-up. A great many patients report needing at least 10 hours sleep with 12 hours being the norm.
3. Shortage of Breath
This is one of the most misunderstood of all the symptoms. There are some sufferers who begin to breathe heavily when performing any physical activity such as walking up stairs, general household cleaning, lifting and brisk walking, but only very rarely is there any gasping for air. However, it is the need to take deep breaths when not performing any activity that causes the most concern. Sufferers often refer to this need to take in ‘lumps’ of air as ‘The Sighs.’ Often it may seem that the patient is struggling to breath, but he or she will simply be trying to satisfy the need to take in a deep breath. This can often be accompanied by the need to yawn, sometimes almost continually. One of the strangest aspects of The Sighs is that they don’t occur every day. Patients often talk of good & bad days. On good days the patient might not feel the need to ‘sigh’. On bad days he or she might need to ‘sigh’ for most of the day or for just a short period.
4. Swollen Tongue
This is often quoted as being one of the most common symptoms of P.A. However, only a small percentage of sufferers of Pernicious Anaemia experienced a swollen, smooth and ‘beefy’ red tongue. Perhaps the figure is as low as 10%. Those who do have a swollen tongue often complain that their tongue bleeds and becomes tender.
5. Feeling Bloated or Full
This is often accompanied by a physical swelling of the stomach. The patient will feel ‘full’.
Pale Yellow-Tinged Skin
Again, this is not as common as previously thought and is related to abnormal liver function.
6. Brittle, Easily Damaged Nails
The nails on both hands and feet become brittle and split or break very easily. Many patients never have to trim or cut their nails as they break off whenever they become anything other than short.
7. Pins & Needles
This can be the first sign of damage to the peripheral nerves. The pins & needles can be experienced anywhere on the body but it mainly affects the tips of fingers and feet. Many patients report that these pins & needles disappear completely after they receive their prescribed treatment. Rather strangely in some cases the pins and needles disappear within hours of the first injection of Hydroxocobalamin being administered.
Less Common Mental Symptoms
These symptoms have been reported by members of the Pernicious Anaemia Society and are infrequent but not unheard of.
It is important that, if you believe you have any of the following symptoms, you make your doctor aware of your experiences.
1. Depression
This can take many forms and it is beyond the scope of this page to describe this in any detail. Unlike the changes in emotions and the irritability as described above, depression, in all its manifestations, tends to last much longer than the symptoms previously described. The mental symptoms described here are acute—sometimes lasting just a few hours, maybe days—and patients soon learn that it is only a matter of time before he or she will return to a more normal state of mind.
However, if the common mental symptoms described previously seem to be long-term then it could be that you are experiencing a form of depression and you should seek medical help. There are a wide range of medicines and other treatments which can help you to deal with your condition and your doctor will be able to help you in a variety of ways.
2. Inability to Cope At Work
Living with PA and working or developing a career is often difficult and many sufferers struggle. However, if you are struggling to cope at work and you risk putting the safety of others if you experience a bad day it would be in the interest of everyone to discuss this matter with your immediate supervisor. In rare circumstances, the inability to cope with the demands of a career has meant that patients have had to make the difficult decision and change careers or even give up working completely. Like so many other aspects of PA, the impact of the condition on the individual will vary considerably from patient to patient.
3. Pica
This is often experienced but not often talked about. Pica occurs when the patient craves something unusual to eat. Surprisingly popular among sufferers of PA is the craving for ice. Other less common but still documented have a craving for eating earth, leaves and garden weeds. Another craving experienced by a few members is for decorator’s filler—such as Polyfilla. Nobody really understands why these cravings happen but it is thought that it is associated with an instinctive response for the need for Iron which is associated with soil. This doesn’t explain why ice continues to head the table for unusual cravings.
Less Common Physical Symptoms
These physical symptoms have also been reported by our members, and are the result of nerve damage caused by lack of vitamin B12.
1. Unusual Gait
This occurs when the central nervous system has been damaged. The central nerves are located in the spinal cord. The degree to which the nerves will have been damaged will determine how awkwardly the patient walks. When both peripheral (feeling of numbness in hands and feed) and central nerves have been damaged the diagnosis is Sub-Acute Combined Degeneration of the Cord Secondary to Pernicious Anaemia.
2. Unsteadiness
This is linked to the above and again, the severity of the symptom will depend on how much damage has been done to the central nervous system. Typically the patient will have problems with the following:
- Showering : the patient will not be able to stand up unaided with his or her eyes closed.
- Dressing : especially when trying to put on underwear or hosiery when standing up.
- Walking : because of damage to the balance functions in the brain, the sufferer will compensate for that damage by looking at the ground, or a wall in close proximity. The ground or wall provides a reference point for the brain to balance the patient. There are other instances where this need for a reference point becomes a problem. The most notable of these is related to dark rooms or walking during the night.
- Vertigo : linked to the above, the inability of the patient to focus on some reference point in close proximity means that the patient feel extremely vulnerable when faced with voids caused by height.
3. Burning feet/legs
This occurs mainly in middle-age and is usually worst at night. It is directly linked to B12 deficiency and usually disappears once treatment is started. It is known to doctors as Grierson-Gopalan syndrome.