Pain-management in ESRF?

[kristina]

I have been wondering:

Has anyone heard of pain-management without any pain-killers?

What I mean, is there anything offered now to treat pain without any tablets?
The reason why I ask is because in ESRF painkillers are not advantageous for the welfare
of our remaining kidney-function,
nor does it seem a good idea to take any pain-killers after a transplant either.

So, are there any alternative ideas to treat pain?

Thank you, Kristina.

[paris]

There are pain killers that aren't filtered through the kidneys.  Also, topical creams that help with pain.  What type of pains are you experiencing?

[glitter]

my husband was on a patch- not sure if that metabolizes through the kidneys though.

[Des]

I can manage some pains easily but there are times where nothing but a good dose of medication is the only thing that works.

Sometimes a warm bath, dark room and a footrub works for me.   

[kristina]

Thanks for your kind replies.

It also helps me to have a warm bath and/or a foot-rub for “ordinary” pain, but unfortunately not in this case.
I cannot take the risk to try out pain-patches/creams or pain-killers in tablet–form, because of my allergies, drug-intolerance and fragile kidney-function.
(I also suffer from photosensitivity concerning UV-rays penetrating my skin & acting systemically & causing flare-ups: a matter which has been medically known for over 70 years).
Medication in patches & creams may have a similar effect, acting systemically & therefore I could not take the risk to try them out.

I have recently developed the same pain I experienced when my kidneys first failed in 1971.
It starts that my whole body aches and my muscles feel weak & tired. At the same time I feel deeply exhausted and a sickly headache sets in. I cannot concentrate or read & I am too unwell to do anything. It is not connected to any activity because the day could start just like that. The pain over my body is very heavy & not piercing. My BP is normal & my instinct tells me to rest.

I have been wondering if there is a training available to oppress the feeling of pain?
I have been reading bragging stories of former spies who claim to be able to withstand torturous pain because of a special training.
What type of training do they have? Is it simply the developing of mental strength to overpower pain, and if so, how is it achieved -  or does it not exist at all?
I have never been reading medical evidence that such a training exists & I feel that if it would exist
it would surely have been transferred to medicine as part of pain-management?

[paris]

Like Glitter's husband, I also use a patch for pain.  The type I use does not effect the kidneys ----- or I wouldn't use it.    What you describe is more like the overall symptoms of kidney disease.  I have found nothing to help the total fatigue, overall body aches and muscle weakness.   Your instinct is right.   You need to rest when you feel like this.  Your body is telling you to rest.    I hope you have more good days than bad days.

[KICKSTART]

If you really want to go Holistic ..why not try looking into chinese medicine ?

[jeannea]

I took a course in self-hypnosis to help deal with my pain. It's surprisingly effective and won't hurt your kidneys. I paid $60 each time for 3 sessions of training and I was doing it pretty well.  It does take some practice but a good practitioner can teach you.

Jeanne

[Sunny]

Yoga and meditation techniques help me, but not all the time.
I have to take vicodin sometimes when the overall achy body feeling hits, which is a symptom of ESRD.
I hope you find something that works for you.

[okarol]

Chronic pain is a real challenge for kidney patients. Hopefully when you start dialysis some of this unwellness will decrease.

[kristina]

Thanks for the kind replies.
 
Like patches, I could not take the risk of trying Chinese medicine either & very little is known about side-effects. 
Because there has not been a structured analysis of the side-effects & the quantities of Chinese medicine related to the patient, diseases & proportion of medicine
to the weight of the individual, it would seem this type of treatment for pain could be hazardous and therefore,
for me, the gamble would be too dangerous & I could not take this risk.
 
I know I need to rest when in pain, I only would like to find a way to cope with it in a better way.

Strangely enough, this disabling pain & exhaustion is exactly the same I had after coming out of the coma and out of hospital after my kidneys failed first in 1971. I remember it well because I needed exemption for two exams because I was unable to get up on the day. I had to take the exams at a later day. That is why I remember it so well. But these days of pain & being unable to get up became less  the more my kidneys recovered to 40-45%. Hopefully I recover the same this time.

I have tried Yoga for the pain, but unfortunately it did not work for me & I did not feel “at home” with it.

I went to hypnosis twice & both times I was as bright as a button and they could not hypnotize me at all. They told me that there a few people where hypnosis does not work and I seem to be one of them.

Perhaps self-hypnosis might be a way forward, if I can learn it?
 
Thank you, Kristina.

[KICKSTART]

Sorry i should have said by chinese medicine , i meant acupunture, that way you are not putting anything INTO your body. Or what about a Tens machine ..again not putting anything into your body

[kristina]

I have been warned about acupuncture
because it is known to cause flare-ups in SLE/MCTD-patients.
I have also been warned about Tens-machines
because the long-term-effect of “interfering with nerves” has not been objectively assessed.

It does sound as though I am rejecting any suggestion put,
but I can assure you that my conclusions have been drawn from both experience
and advice/reports from SLE/MCTD specialists on the Internet,
added to which I have learnt a great deal from other Lupus-sufferers.

I am aware I am looking for a needle in a hay-stack but nevertheless I have to continue
to see whether there is anything which might help me to deal with the pain.

So, it is back to find constructive ways to use my mind & deal with the pain
whilst taking a rest & hoping to feel better soon.

Thanks again, Kristina.