“Hemodialysis Fatigue Syndrome”

[Charlie B53]

A link to this article was posted in one of the Facebook pages.

Hemodialysis Fatigue: Just “Simple” Fatigue or a Syndrome on Its Own Right?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3429077/

I am only half way through it but so far it is spot on!

I am hoping to find a course of treatment spelled out before the end of it so I can send a link to each of my Dr's.

Knowing that it has or is being addressed finally is half the battle.  Figuring out what to do about it may be a whole different can of worms.

I had suggested Cocaine but my Dr frowned at that idea.  She won't even prescribe diet pills.

[kristina]

Many thanks Charlie for this most interesting article, it is very much appreciated.
I find some of the explanations quite encouraging and enlightening, especially the following:

" Other factors that contribute to the excessive fatigue area lack of restorative sleep (Sakkas et al., 2008b), excess pre-dialysis weight (Sklar et al., 1999), poor nutritional status (Jhamb et al., 2011), restless legs syndrome (Giannaki et al., 2011), and the overall mental status of the patients (Jhamb et al., 2011). Evidently, of all of these factors can contribute to a self-exacerbating process, a vicious circle, of fatigue due to inactivity and further inactivity due to fatigue ..."

The above observation is quite true, like, for example, sleep sometimes does not come easy when on dialysis and it certainly helps a lot to keep "spot on" with our weight and if there are issues with nutritional food intake and no proper kidney-friendly diet, life can surely become very complicated in a downward spiral with hardly any exercise "thrown in"... and it becomes easy to imagine, that these factors can contribute to a vicious circle, i.e. fatigue due to inactivity and inactivity due to fatigue...
The conclusion seems to be that the more we truly "stick" to our kidney friendly diet and liquid restrictions, the better our chances are to survive our dialysis-treatments as well as is possible...
Many thanks again Charlie, for this very re-assuring article...
Best wishes from Kristina.

[LorinnPKD]

I'm so glad this is being addressed!

One of my biggest concerns starting dialysis was the constant mental fog.  I asked everyone at my clinic how to address it and every last clinician there told me no patient had ever brought it up to them.

And I'm like, really? I forget entire characters when I'm watching a TV show, so when they pop back up again in the story I have to rewind so I remember them.  I'll read the same two pages over and over.  I'll forget where I'm driving to WHILE I'm driving.  Surely this is in no way normal, and no one's ever mentioned it?  The general consensus was that patients were more likely more concerned with the larger physical issues that this was the least of their worries, which is probably fair.

The fatigue is hard, and it compounds when you're taking medication that also causes fatigue.  My nephrology NP says the solution is to move.  Even if you feel like waking death, get up and take the dog for a walk.  It's been helping, but it's really hard to do when the bed is so inviting!  My dog's pretty happy tho.

[Charlie B53]

What I find most disturbing about the article is that it is merely pointing out that there IS a problem which we, the Dialysis Patients, have known for years.

The article offers NO insight as to possible treatment of this condition.

We need a number of treatment approaches such as diet/supplements necessary to slightly increase metabolic function.  Possibly a chemical boost, non-caffinated as that causes my heart to skip beats, but something that may help increase energy.  While many do have some minor symptoms of depression I venture most are not sufficient for a clinical diagnosis of depression. A very light dosage of a light anti-depressant may not be such a 'bad' idea as well.

Same with a light muscle relaxant and a non-opiod pain medication.

If the combination of these four meds in very small doses, small enough that any one would not have any perceivable effect on it's own, but the combination together could make a measurable difference in our functioning.

This needs serious study.

[kristina]

What I find most disturbing about the article is that it is merely pointing out that there IS a problem which we, the Dialysis Patients, have known for years.

The article offers NO insight as to possible treatment of this condition.

We need a number of treatment approaches such as diet/supplements necessary to slightly increase metabolic function.  Possibly a chemical boost, non-caffinated as that causes my heart to skip beats, but something that may help increase energy.  While many do have some minor symptoms of depression I venture most are not sufficient for a clinical diagnosis of depression. A very light dosage of a light anti-depressant may not be such a 'bad' idea as well.

Same with a light muscle relaxant and a non-opiod pain medication.

If the combination of these four meds in very small doses, small enough that any one would not have any perceivable effect on it's own, but the combination together could make a measurable difference in our functioning.

This needs serious study.

Hello Charlie, I won't even take painkillers etc., in order to keep my little remaining kidney-function going for as long as is possible ... and ... I have been wondering whether the reason for "no medication to treat this fatique" might be due to the fact that the more medication is taken in ESRF, the more likelihood for the remaining kidney-function to give-up altogether much too early?

[Charlie B53]

We are still learning that mankind quite possibly has been on this rock for hundreds of thousands of years.

It is written, 'ALL Things exist for the benefit of Mankind."

We are so stupid that we have forgotten what Plants are to be used for what purposes.

I truly believe it is that simple. For every affliction there is a natural plant that should be used, included in our diet, either eaten, made into tea, smoked, whatever, to manage that affliction.

[Paul]

For every affliction there is a natural plant that should be used, included in our diet, either eaten, made into tea, smoked, whatever, to manage that affliction.

Yeah, but that is not necessarily an improvement. You could for example take willow for pain instead of aspirin, a lot of people do. But willow contains natural aspirin, so you gain nothing. Or you could soak rye and use the matured damp grains for pain. That works really well because it develops ergot fungus, another natural pain killer. It is also natural LSD, almost identical to the manufactured version (I believe chemical LSD was created from studying ergot fungus), however one difference is that ergot fungus will kill you a lot quicker than LSD.

Then there are all the fun pain killers we get from poppy seeds and coca plants (morphine, heroin, cocaine).

And don't forget plants like hemlock, nightshade, etc., they will stop your pain, and any other symptom - permanently.

[Charlie B53]

It ALL come back to that "Moderation" thing.

Those that may kill you, may not, in moderation.

Learning what can be 'Used', not 'Abused', and knkowing the difference is essential.

I still whole heartedly Believe we are that stupid that we have forgotten.

Once upon a time Parents, Grandparents, spent great time teaching younger ones literally "Word for Word".   Whole Books, Volumes and Volumes of essential information ws handed down throughout the generations.

Somewhere along the line we, as a planetary race, became lazy, not taking the time to pass all this knowledge on.

This has been many many generations ago.

Current Society will not admit, they rather rely in educational systems to do they job that 'Family' once did.

Sad.