Polycystic Kidney Disease (PKD) Support Group

im prescribed tramadol, 2 every6 hrs.they very strong and make you feel drunk, which i really dislike.(when eyes closed room spins), but good on the pain. xxxx

Thank lynnebuddy,
been pain free would be nice but I dont this being commatosed taking care of 3 kids would be good, i sill have to wipe their butts and feed and bath em. I like my norco just need more and a breakthrough med, maybe vicaprofen, heard of that anyone on it? Thanks for thw tip though, mayne in 18 or so years when they all leave i can try it and close my eyes and have the room spin! Weee LOL

Hi Chasity, my name is Norma and I'am an old broad from way back, lol. but it's true. Anyway, I see that your only 28 and thats a lot of pain meds that your taking for your age. Doc's today don't want to give anyone much of anything because of the fear factor and addiction. Is there anything else you could do to help yourself with the pain, like warm baths, if you can get in a tub that is, heating pad, anything so you don't have to take 2 pills right out of bed?? Doctor's don't seem to have much pity on people in pain, especially people with pkd, they don't belive that their pain is as bad is it really is. I doubt your going to get him to change your meds or to give you more. All we hear about in the news is one movie star after another being addicted to pain meds. I guess we can't blame them but in the same breath, we need some relief. It would be good if you could start all over again, with other types of pain relief. I don't know how big your stomach is at this point or what kind of pain your in to warrant you taking so many pain pills in one day. Pain is pain, we deal with it the best we can. What I'am advising you to do at this point in your life, is to try a warm bath, try using a heating pad, try sitting back in a recliner chair, try anything to help the pain other than using narcotics. They aren't the answer to anything other than how to be "constipated" for the rest of your life, LOL, it's true, right? Whats causing the pain? Does your kidney doc know? Maybe there's something he can do to help you. Don't give up, until you get an answer from him. There is literally nothing to be gained from taking narcotics for pain! You need someone to help you figure out what the pain is from and how better to deal with it. I'am not being critical, I'am just being sensible, your taking narcotics for lord knows how long, is going to gain you nothing and you have everything to lose from it. Get mad girl!! go after your doctor and make him tell you why you are in such pain! Keep us all posted, we really care!!

Lots of love,
Norma..

Nothing works for my pain....the vicoden and the percocets I used to take would just help me sleep at first then I got used to them.

I told my docs I didn't want anything else.

The risk of dependency on those drugs is high and since they didn't work anyway I just opted to not take them.

It's been over a year I've spent in pain and I just deal with it....I don't even know how.

I guess you just get used to something once it happens for awhile.

The best thing for me to do especially when it gets bad is to just distract as best as possible. I call friends sometimes or just find someone to blab to.

*hugs* It sucks a lot...I know...and I hope you find something that works for your pain.

To all,
First the issue of addiction. If you take pain medication because you're in pain, you will not get addicted. Your body may become physcially dependent over time and you may need to taper off the medication, but you will not be addicted and suddenly feel the need to rush out and rob little old ladies to keep up your habit. Take your medication only as prescribed and you should be fine. Addiction happens when you take too much, long after the actual pain is gone, and abuse the medication to get high, not to alleviate pain. I am on heavy duty pain medication, but I have never been "high" on any of them; all they do is manage my pain (BTW, they never take all the pain away; they just make it managable).

PKD can hurt. Despite what many nephrologists think, the kidneys are incredibly ennervated (have their own sympathetic nervous system) and can sense pain. As the cysts form the kidney capsule expands and this can cause pain. In addition, the enlarged kidneys can press on surrounding organs, fascia and muscle, causing additional pain. The size of the kidneys doesn't actually matter when it comes to pain. Some studies have shown that smaller kidneys with uniform sized cysts can be more painful than large kidneys with varied sized cysts. But any kidney can hurt. And many kidneys don't hurt at all. It's a very individual experience, but no one should be denegrated or denied care because they don't fit the perceived norm. If pain and PKD weren't an issue, there wouldn't be time dedicated to it each and every year at the annual PKD convention. For more information on what recommendations come out of the convention, check out the website at www.pkdcure.org and click on the convention; the latest presentations form last year should be posted there. If not, I'll try to find a copy of a pain and PKD presentation from Dr. Steinman at Harvard, one of the leading PKD clinical nephrologist in nation and send it to whomever request it (please message me for copies; I have it in some safe location).

I am a chronic pain patient. It's taken me years to get to this point (I'm 48). At first I had vague aches and pains and just put those down to my kidneys growing. I brushed them off and just kept on going. A periodic heating pad, some rest, and some stretching was sufficient, and when things were really bad, a short bout of pain medication (usually Percocet) did the trick (I happen to be pretty immune to most pain and sedating medications).

It's only been in the past 4 years that all hell has broken lose. Prior to that I had intermittent prescriptions for Percocet, but I rarely used them (I was active duty Air Force and didn't want to test positive on the urinalysis program even for a prescription medication; not to mention I will not take pain medication and drive, so if I took some I was stuck at work or stuck at home...not exactly a productive way to spend my time). So for the most part I toughed it out. I did and still do a lot of stretching before I got up, have a body pillow so I can change positions at night and not sleep solely on my back (and thus get that heavy feeling in my back from the kidneys), and I am careful to avoid knocking into things with my sides and back (not always successful).

For some reason when I retired, my kidneys and very cystic liver decided they had been quiet long enough and now it was their turn to get some attention (I guess I should be glad they waited till then). That's when I started getting some cysts sclerosed and taking Percoset a bit more regularly (still undermedicating because I like being part of my life and not trapped in the house, medicated to the gills). I still love my heating pads, but it took more than just heat to ease the pain (about an 8 at this point, and I have a high tolerance for pain).

I finally ended up, most unwillingly, on OxyContin after much cajoling my both my nephrologist and my husband, both of whom hated to see me in such pain. What helped was that my husband goes to every doctor's appointment with me since I've retired (I will not drive when medicated), so he's a relatively unbiased observer who will honsestly tell my neph that I undermedicate, hate to take any pills at all, etc. I have an excellent relationship with my neph and since he's known me for years, he can see how I've changed over the years (not for the better) and at times I can walk into his office and he can simply read the pain on my face.

My advice: Try absolutely everything you can that doesn't involve medication first and then try all the non-narcotics (tramadol has a good reputation for pain relief; I simply wasn't able to use it due to a conflict with another medication I take). Keep a pain diary, noting the day, your pain level and exact location throughout the day, everything you do or take to make the pain get better (and the things you do that make the pain worse...honesty is the key). Make a list of all the medications you've tried, non-prescription and prescription, when you've tried them, if/when they were effective and if they still work (if Norco still works, how long does it work for (in hours) and how much relief does it give. When it comes time for your appointment, bring a spouse or loved one with you, someone who will not be all melodramatic, but will calmly and rationally be able to explain how they've seen the increasing pain affect you over the past X months. Be realistic about what level of relief you expect; it is NOT realistic to expect no pain whatsoever. PKD is not a disease where you can pop a pill and have no pain; at a minimum you will have discomfort from the enlarged organs and that alone can be perceived as pain. So decide ahead of time what is a realistic pain level that you can live with. Do NOT go in asking for a specific pain medication; that is a key trigger for drug seeking behavior and you are not seeking drugs; you want pain relief and that needs to be your mantra. You are asking for an effective pain management regimen; you do not care what the medication is as long as it does the job (and isn't an NSAID like vicoprofen).

I wish you all well.
Ruth

Hello All,
Bank for my normal bs time for mom, I to like pkdlin am home bound due to he fact I REFUSE to take pain medication and drive my 2 youngest kids not in school anywhere unless im not taking my meds ,just in case. Anywho this is in response to Norma, I am greatful for your thoughts and concerns, but I HAVE TRIED EVERYTHING! As a last resort I have had to try narcotics, the dr sent me to a pain clinic in which they offered OXY, no thank you, no offense pkdlin, but i could no way care for a 4 mth old, 2 yr old and 5 yr old, w ADHD/ODD like that. I asked for something easier and safer. You see I was doing great on the Motrin 800, then my neph explained that is no allowed! You can take pills that will kill your liver but not Motrin, never heard of a thing, sh still take the Motrin sometimes, it wks the best! But Have 70+ cysts in my left kidney which kills me! Even doing basic tasks, ie bathing my kids, driving, wow thats a killer, sitting @ the computer, lifting! I have some very large ones right under my ribs that rub and its pinful and quite frankly annoying, One day, it was so unbearable, even after pain meds, I think I was dilusional I seriously thought about cutting my side and getting it out! Thats NUTS! Not that I would but I hate it! So its my only choice now, but after being on NORCO for 5 years i have built up a tolerance to it, I think im like you pkdlin, I have a high pain tolerence, and the meds just DONT WORK PERIOD!! another story I had my daughter and I had an epidural the dr said he had to give me enough med to tranqulize a horse and I was loopy but comfortable and fine! Its weird and annoying. The pills by no means take the pain away 100% but it takes the edge off and I am able to run and roll around w my kids, bath em, that is the worst thing bending over the tub, ick em up, do all my chores and be a good wife and mom, im young but old fashion, my opinion is men w and woman do the kids and cooking and chores and laundry while they r @ wk. Its alot, we have 6 in r family, my kids, oey me and my 17yr sister part time! It a full time job and a part time one. I guess I agree w pkdlin, I also served my country and I am not an abuser, I need it to be who I am and who im supposed to be. I appreciate you help and thoughts. I will try a heating pad and hot bath if I ever get 10 minutes to myself other than @ 10pm - 5am while they r asleep. Thanks pkdlin!