Wednesday, March 07, 2007

Pain

I'm learning something. There are lots of different kinds of pain.

I know that sounds silly. Of course, everybody knows that. There's the pain of scraping your knee, the pain of a paper cut, the pain of a broken bone. Those are all pretty specific, and most of us can relate to those kinds of pain. What is interesting is that we all have some kind of pain memory, too. I'm not talking about phantom pain, or anything like that. I'm talking about when you break a finger in the 5th grade, and then break your thumb in the 9th grade, and you recognize the pain. It feels the same. You KNOW your thumb is broken, even when your mother and your brother-in-law think you just being hysterical, and refuse to take you to the hospital until 2 days later when your thumb is the size of a baseball and the color of a plum and you can't sleep because it hurts so much.

And of course, you never remind your mother of this, because that's just not the kind of daughter you are.

But with PKD, I am getting acquainted with all kinds of different pain. Also, I have the advantage of knowing where EVERY SINGLE ORGAN in my abdomen is, compliments of 3 very thorough abdominal ultrasounds in less than a year. It's kind of weird to know, hey, that's my kidneys that are hurting because a cyst is swelling, or I've had too much caffeine and they are aggravated, etc, etc. I read a site one time where the author said eating certain foods "quieted her cysts". At the time, I had no idea what the lady was talking about. Now I do.

And I can tell my doctor, "Yes, the kidneys are impinging on my vertebral column, which causes pain in my ilium and my sacrum, but it's not muscle pain. It's bone pain."

And she nods, believing me. Maybe not all her patients are so obsessed with their anatomy books?

I am also learning about pain tolerance. Daily, I now have pain that 1 month ago left me flat in bed. Now, it's just my companion. I don't take anything for it, really, only because it's not debilitating or excrutiating, and Tylenol, the only real pain medicine PKD patients are allowed to take on their own, probably won't do much.

So this is what PKD has taught me--a lot about pain. I can only wonder what is coming next.

10 comments:

Lisa M. said...

I often wonder if Ethan is in pain. I am sure he is and can't articulate where it is.

I do understand what you mean by pain memory. Burns, I think are especially painful for me.

I hate that pain is your constant companion. I wish things were different for you.

I love your humor about knowing your insides. Most of us don't, that is for sure.

I like finding new posts here.

Thank you for sharing, with us.

Heather O. said...

Lisa-

Thanks for reading. I never know who is on, and what interest they have in PKD, but it's nice to know you're here :)

ronald2 said...

hi heather im ronald 30yrs old im a filipino and currently working in saudi arabia,i was diagnosed w/ ADPKD last 2005,i got it from my mother she died last 2007 of ESRD,,I was wondering if u can give me some advice on how to manage my lower back pain coz it is coming very often lately,you can send an email to ronien0428_08@yahoo.com..thanks

Anonymous said...

hi there,i have polycystic kidney disease.had another ultrasound today,which showed it has spread to my pancreas noe.i already have multiple cysts in my liver and both kidneys.reading youre article helped me,as now i know im not the only one suffering with pain from having the disease. i get really sore sides around my kidneys and shooting/stabbing pains in my liver. i would love to hear of any other methods you use for the pain. thanks,hollie x

x-hollie-xx said...

i was also wandering if you are on facebook? if so add me holz540@msn.com xxhollie

karen said...

I have pkd and pld and lupus.can you tell anything will help my severe pain.i take azina long acting morphine thats 20 mg.on 2 percs a day i take them all 3 every day.am on a med for preventing kidney stones.was just put on a bp med but can't take cause of side effects.and few other pkd friends are on it and they can take it.i don't drink coffe and 1 soda a day which is not a lot of caffiene.i try heat.and still have fair funtion in the 2nd stage.besides the side and back pain i am getting all over pain more than i normally get.i take methotrexate for lupus and sjorgens.just so tired of pain.i had a scan 3 months ago.showed multiple cysts all over my kidneys and liver.please help with any advise...my email is tifftjsmom@gmail.com karen

Rachel Velazquez said...

Hi there,

I am diagnosed of PKD last February 2012. I've got it because of the generic effect that comes from my father.

It comes very alarming to me when there is week that I suffer too much. I really feel the pain effect of it.

I consult my doctor regarding to that matter. And he gives me the best advice and I take an action immediately because I don't want to suffer again.

I ate the healthy veggies such as carrots, broccoli and corn daily. Giving my body the proper diet and Exercises. And I limit my self in salt and fats, also the intake of caffeine, alcohol, and sodium intake, especially after exercise.

I am very thankful now that after I take action, there is no more pain now.

Best regards,
Rachel
chiropractor seattle

Anonymous said...

Hi All I also have PKD and then pain has just started and it Hurts :(
wondering if there is any pain re-leaf someone could recommend
I was Diagnosed with Pkd in 2012
just got handed a peace of paper from the Diag. place and saw my Doc. but my Reg. Doc was on Vacation so saw the nurse and told me ah, you have pkd... and said I should take it easy and left? err ok what do I do now? that was in 2012 since then I have moved, lowered my soda intake by 3/4, lightened up on my red meat intake, cut out my Alc. intake, started to drink lemon cut up and put it in my Bottled water.

I am looking for a group or something feel like I am alone on this one...

https://www.facebook.com/djez.2
hit me up or PM me is the best way don't be bashful :)
thanks Dj~Ez

Anonymous said...

Hi All I also have PKD and then pain has just started and it Hurts :(
wondering if there is any pain re-leaf someone could recommend
I was Diagnosed with Pkd in 2012
just got handed a peace of paper from the Diag. place and saw my Doc. but my Reg. Doc was on Vacation so saw the nurse and told me ah, you have pkd... and said I should take it easy and left? err ok what do I do now? that was in 2012 since then I have moved, lowered my soda intake by 3/4, lightened up on my red meat intake, cut out my Alc. intake, started to drink lemon cut up and put it in my Bottled water.

I am looking for a group or something feel like I am alone on this one...

https://www.facebook.com/djez.2
hit me up or PM me is the best way don't be bashful :)
thanks Dj~Ez

JustMe said...

anyone looking to understand PKD and 'diet', this is my 'bible'. I've known about my PKD since I was 15 and I am now 40. My father taught me the basics (I lose him in 1997)- low salt, no red meat, easy chicken as well, animal protein is the hardest on kidneys. No sodas, 3 Liters of waters and yes I keep my glass of wine (and take no pain meds). I do yearly lab work and have seen my kidney function (GFR) go from pretty great for past 15 years to a bit less great in the past 5 years. But I am still in Stage 3 of 5. We think (my doctor at John Hopkins) that mabye in about 5 more years my GFR may drop into stage 2 when the 'real issues begin' However, I have done 20 yrs of research and asking questions so I feel I am 'as prepared as one can be' for the so called 'inevitable'. A great website is http://www.pkdiet.com/pages/diet/dietpkd.htm
and also my friend and hero VALEN who has already gone through transplant in her 20's and blogs about her experiences on www.pkdwillnotbeatme.com....INSPIRATIONAL FOR EVERYONE INCLUDING ME. Remain ALKALINE (lemon in water is great first thing in the morning) Studies show COFFEE is a great offender (which I love) but have been on 1 cup a day only for 7 years now. Diet MATTERS. Remain positive, read, research, ask quesions!