Answer re-written (23.3.10)
Dear Shaymon
I re-read my 1st answer and, though I haven’t changed anything of substance, I found lots of spelling errors and didnt like some of the phrasing I used and so have replaced it with, I think, a better written version … so here goes …
I first thought to make a rather glib response to your initial post … “that if I had as much in my day as you have in yours, I think I would be feeling tired too!” … but, although you do have much on your plate - not only all your day-to-day activities but battling with CKD as well - a glib reply like that would be superficial, unhelpful and disrespectful.
Your problem is far more than just that … you know it and I know it.
While it is important to recognise that your list of daily activities will not be making your CKD any easier, CKD has a profound effect on the body and produces exactly the symptoms and the feelings you describe and struggle with.
The ‘abiding symptom’ of chronic kidney disease … it is almost universal … is tiredness … and the worst thing is that outwardly, you probably look just fine!
To others, even to your family and closest friends, it must seem like there is little wrong with you. It can be very difficult for family and friends to fully understand just how flat and exhausted you really do feel inside and yet how relatively well and normal you outwardly appear.
Though I have never experienced renal failure, I do now have some sense of how my CKD patients must feel … how they wake in the morning, feeling okay and thinking “today seems like it might be a better day” … but then, by the middle of the morning, how they feel ready to ‘pack it in’ and take to bed, exhausted and desperately in need of rest. I understand the rage they must feel at feeling so flat and 'stuffed’ on the inside yet, how from the outside and to others, they appear no different at all.
The medical description for this is ‘lassitude’ or ‘easy fatigueability’ … a little like John Keats ode: “… and a drowsy numbness pains my sense …”
To know that the day must go on, that there is 'stuff to do’, but that you will literally have to force yourself to complete a seemingly endless number of tasks with little or no energy to do so, must be so frustrating.
It is an awful feeling and one that only you can fully understand. Then, at the end of the day, when thoughts of intimacy may arise, there remains little or no energy (or inclination) left for that either.
This can be so very difficult to explain to others and sometimes, most of all, difficult to discuss with a partner. Then comes the thought of having to go out, socialising or mixing with friends … doing the things that partners or families usually do together … can seem almost impossible.
You have not told me about the cause or the treatment of your CKD or its severity. These factors can be important. Some kidney diseases, for an example some types of nephritis like ANCA-positive vasculitis, can super-add a profound weakness on top of the underlying effects of CKD itself. Diabetic nephropathy may be complicated by an autonomic neuropathy and postural hypotension (when the blood pressure falls after standing erect) and this may add to or magnify the lassitude of CKD. Some medication can significantly affect the way you feel, particularly some blood pressure pills. Knowing more about this would help determine if factors over and above the CKD itself are contributing.
Sleep can be disturbed in CKD. If you are overweight – and sometimes even if you are not – obstructive sleep apnoea can occur. This is a condition where oxygen levels fall during sleep – this is often but not always associated with snoring – and it is much more common CKD patients when compared to its rate in the general community – regardless of the presence or absence of obesity.
Sleep disturbance from night-time cramps is a very common problem in CKD with many (if not most) patients with advancing CKD complaining of nocturnal cramp. These can further deplete the quantity or quality of sleep and add to the causes of day-time exhaustion.
But, it is likely that the CKD itself is mainly to blame.
Why so …?
Mostly, the answer lies with the progressive anaemia that occurs with progressive CKD. Though you have not told me your eGFR, broadly, the lower the eGFR, the more significant will be the anaemia. Though this rule of thumb is not always true, generally as kidney function fails, so to does EPO production by the kidneys. Though EPO can be produced by other parts of the body – particularly the liver and spleen – in usual circumstances, the amount of EPO produced by these organs is minimal. The kidneys are where EPO is at! Though production can increase a little at these ‘other’ sites, as renal EPO production falls, a loss of eGFR means a loss of EPO.
In addition, for a number of reasons, the bone marrow (the ‘factory’ where our red blood cells are made) becomes progressively more resistant to EPO as the eGFR falls. Thus there is a ‘double whammy’ … a falling production of renal EPO and an increasing resistance of the marrow to any EPO that is still being produced.
But, like those late-night ads on television tell us “… but wait, there’s more!”
As kidney function falls, there is a progressive rise in ‘hepcidin’, a substance only discovered in ~2001, but which we now understand to be the major controlling mechanisms for iron absorption and for iron uptake and release by cells throughout the body. This includes the cells that line our gut and which absorb iron from our food. The reasons why hepcidin activity changes in CKD are complex but, suffice to say, that the combination of CKD and rising hepcidin levels leads to a reduction in iron absorption from the gut in patients with CKD.
In turn, iron is essential to red blood cell formation and, as iron absorption is reduced, subtle but significant iron deficiency results … and, of course, iron replacement by ‘pills’ won’t work very well as any iron delivered to the gut – whether by food or by a pill – won’t be absorbed. This is why iron is most commonly given intravenously in CKD patients. The iron deficit diminishes the availability for iron to be incorporated into red blood cells as they are made in the marrow – haemoglobin is, as its name suggests, an iron-based pigment) is yet another problem.
Once on dialysis (not yet your current problem), some vitamins (particularly those that are water-soluble) can be depleted too. This applies chiefly to theB and C group vitamins which, being water-soluble, are therefore ‘carried off’ across the dialysis membrane during dialysis. Of particular importance are folic acid, pyridoxine and the other vitamin of the B group and vitamin C. These commonly need to be supplemented in dialysis patients. This is not a current issue for you yet but may be something to remember if and when you start dialysis.
In addition, subtle changes can occur in neuromuscular function in CKD. These include changes in magnesium, sodium and potassium ‘flux’ and availability, especially at the nerve ending where the neurone (the nerve cell that makes the muscle work) interacts with the muscle cell (that contracts under the ‘instruction’ of the nerve cell). Changes in the balance and bio-availability of these ions can have a significant effect on muscular function and strength.
The most likely cause, however, of the tiredness you are noticing is the slowly developing anaemia of CKD - certainly the most common cause of lassitude and weakness in most CKD patients. The solution to the anaemia of CKD is usually the addition of erythropoetin (EPO). Though EPO is clearly not the panacea (or cure-all) for all CKD symptoms, it is often results in major symptomatic benefit. But … if your government is like ours, there will be a set of qualifying ‘requirements’ that a patient must fulfill and a physician must attest to before EPO can be prescribed and administered.
In defense of both government and doctor, these limitations are appropriate. Not only is EPO very expensive (the government concern), but EPO is not the answer to all CKD symptoms (the medical concern). However, in Australia at least, if the Hb is <10, a patient qualifies for free EPO – or does so at a higher Hb there are significant and agreed other factors, such as symptomatic ischaemic heart disease.
Your doctor will be able to advise you about your Hb, about any ‘local’ rules that may apply to EPO administration and availability and whether EPO is appropriate in your case – that is, of course, if you are not already on it.
However, there are two caveats.
(1) there is always that uncomfortable ‘gap’ when the Hb falls through the 11s and 10s (where the symptoms of anaemia and tiredness begin to become significant) and yet the EPO-qualifying ‘magic Hb’ of l<10 has not yet been reached. This is a ‘no man’s land’ where symptoms are emerging from CKD-related anaemia but the Hb has not yet reached a low-enough level for EPO to be prescribed under prescription limitations.
(2) not all symptomatic tiredness is anaemia-related. Thus not all patients will get symptom relief, even if EPO is given and the Hb rises and the anaemia is ‘fixed’.
Most importantly, you must discuss this with your doctor. He/she will be able to tell you whether or not any of these factors apply to you, as an individual.
Next, you must discuss how you feel – and the reasons why you feel as you do (see all this discussion) – with your family. They need to understand that your tiredness is not due to a lack of interest, a lack of effort or a lack of ’ wishing it to be otherwise’.
This also applies, possibly or even probably, to your libido in moments of quiet intimacy. A lack of libido can sometimes be misinterpreted by a partner as a lack of interest or a lack of loving. In males particularly, the inability of a man with CKD to attain or sustain a quality erection (this is common in CKD alone but is often made worse or nearly impossible by certain medications - like BP pills) can be misinterpreted as disinterest or as ‘you don’t love me like you used to’.
Problems like these can become hugely stressful, often in unspoken, un-discussed ways, and can subtly eat away at an otherwise strong and previously robust relationship. Usually, nothing could be further from the truth but sometimes small things sow seed in the wrong ground. You should openly discuss this (if it applies to you) with your wife - particularly if you have noticed any change in your libido. She must understand that the suppression in libido is caused by failing kidney function and not by a change in heart. If this is (or becomes) a problem for you, discuss it openly, both as a couple and with your doctor.
From your geography, Hertfordshire, I note that you live near a dear friend of mine, Roger Greenwood, who is at the Lister in Stevenage. He is one of the great CKD experts in England. If you happen to be referred to Stevenage, give him my very best. He would certainly look after you well.
I’m not sure whether I have been helpful but, the most important thing to remember is that the tiredness you are feel is ubiquitous. All patients with CKD feel it. All complain about it and all wish for a solution – both patient and physician alike. Although EPO has made a huge difference – especially when CKD-anaemia is a major contributor – lassitude and easy fatigue remain problems for all patients with CKD and the correction of anaemia, though useful, may not always solve it completely. Attention to some of the other issues I have mentioned may also help.
Most important of all remains a true understanding of all this from your nearest and dearest. This is the core essential that will enable you, as an individual, to best handle and manage this distressing side-effect of CKD as effectively as possible.
In your case, I think you should seriously consider how you might ‘re-pack’ and rationalise your day-to-day workload. You do seem to have a lot ‘happening’. Sometimes a third party (like a counselor) can see ways to change your life-patterns that you may not see … it can be a ‘can’t see the wood for the trees’ situation. At least discuss this around the family dinner table. ‘Change your day pattern’ is easy for me to say but not so easy for you to do – particularly as you have a young family – and while I would urge you to try to seek your own ways through, third party help maybe worth consideration.
I have not dealt with all the factors: these are too numerable to manage to cover here. However, I hope I have given you some insights into why you might be feeling as you do. Remember, you are not alone. Other patients may confirm similar experiences to you. Saying this wont help, but it will serve to give you and yours some reassurance that your tiredness IS your disease speaking. It IS common. It IS what others feel too. And, it IS manageable and reducible - if not completely eradicable.
Good luck - and my thoughts go with you …
John Agar
http://www.nocturnaldialysis.org