I take percacet which takes the edge off for me but does not totally eliminate the pain. It just enables me to be able to function at a somewhat normal level. I find a heating pad helps a lot while it is actually on my back but doesn't seem to give any long term relief.

I know other people have had some success with lyrica, (which is an anti-depressant). It is also used for fibramyalia, I guess it works on the nerve pain.

I did try tramadol as well and it did not work for me. Apparently it is not a drug that works for everyone. However one doctor did tell me that tramacet would be better than tramodol as a short acting pain relief would be better than slow release.

My neph also has me get my pain killers from my family doctor. I'm not sure as to why this is. Maybe specialists just don't have time to keep track of usage and don't want to be bothered with triplecet prescription paperwork. I'm sure it's time consuming.

Judging by your picture you look to be fairly young. Doctors are very hesitant to prescribe narcotics to someone who is going to be taking them for a very long time. I started taking painkillers about two years ago at the age of forty and it was not easy to get my doctor to prescribe at that time because of my age.

Drug tolerance is a big problem for someone who is going to be on painkillers for many years. And eventually is a person is not careful the medications stops working for them at all. So really doctors prefer to hold off as long as possible.

I have just begun taking tramadol and it works for my flank pain. but my pain is pretty minimal.

For sleeping (which is when I have the hardest time) my doctor prescribed restoril, which was originally used as an anti-depressant but made people tired! It is great for me. It is a very strong muscle relaxant. I do NOT use it every night, although recently i have begun to use it a few times a week. I have been using it off and on for about 3 years and I have not needed to up the dose (meaning I haven't really developed a tolerance to it). I might be lucky because I find I am very sensitive to drugs in general...usually need smaller doses of painkillers than most people.

My nephro is in control of all my meds...I haven't even been to see a GP in years because I have to go to the nephro so often (once a month currently). I do see a gyne every now and again though.

I hope you can find some relief soon!

I don't generally take pain meds, but recently ended up in hospital with unbearable pain. My GP didn't know what to do with me so packed me off to hospital. They gave me oramorph, intravenous paracetamol and codeine phosphate. My GP is now happy to prescribe codiene phosphate for me as and when I need it; it is available in various doses and does help. I've only resorted to it once since, but it's good to know it's there. Tramadol doesn't work for me, either. I have to be in severe pain before I will use it, because it turns me into a zombie, but as you say, sometimes you just need to sleep, so I took it just at night.

Hope you find something that helps.

Chewitt

can you any advise about having my cysts drained?

hi Karen,

You might want to post a new thread with your question as the title because it might help you get more answers.

I don't know much about cyst draining but I do know that when I talked to my doctor about doing it he said that they can grow back within weeks, so unless there is one that is causing a specific problem, he doesn' recommend it.

I hope others can give you better advice.

All the best.

Thanks to everyone for the support and advise on pain management. I am drinking alot more water now & cut the pop....also thinking about trying some natural pain remedies first....Everyone have a great weekend. Im getting ready for a cattle, sheep , & goat sale this weekend..... :)

Haven't posted for quite a while, but wanted to offer my support and empathy for constant pain and draining cysts. I have had my kidney operated on four times to drain cysts and I got about six months of pain relief each time. The surgery was quite painful to recover from and I lost quite a bit of blood from a bleed out the first time. Nevertheless, it was worth it obviously for me to try it three more times. I took Lortab twice a day about every other day, but that is not any real way to live. I am so sorry for the pain and discomfort that goes with this disease.
So I chose to have my right kidney removed last November against the doctors suggestion. It was risky as both nephrologists weighing in on the decision were sure I would be on dialysis. I went ahead anyway and I have had six months of great health. Sooooo glad I did it. I did lose some function. I am about 18-15% function but don't have pain and feel much better and the surgery was so much easier to recover from. Try to stay positive in your thinking. Our mindset weighs in very heavy on our overall health. Best of thoughts and prayers to all of you.

My nephrologist is my everything doctor; he serves as both my nephrologist and internist. I started on Percocet right away, one tablet every 4 hours as needed for pain. In the past I'd been on other pain medications for other problems that were relatively ineffective except for causing severe nausea. I would take one Percocet every once in awhile (very rarely as my job required me to drive on a flightline, as well as be alert and awake). As time went on, my pain (predominanly from my overly cystic liver got worse and the Percocet became more constant, then because OxyContin with Percocet for breakthrough pain. After a bout of a migraine and breakthrough pain at the same time, both mediciations requiring acetaminophen, my breakthrough pain medication was switched to oxycodone (aka roxycodone, without the acetaminophen; I could add acetaminophen as needed). Then, after a few ER visits/hospitalizations for pain management, my doctor added hydromorphone (dilaudid) to my breakthrough pain medication (for severe breakthrough pain). Fortunately this combination has kept me out of the ER/hospital ever since.

As far as cyst drainage goes, it is not recommended as the cysts can refill within hours or days. Instead cyst sclerosing, with the use of lidocaine and absolute alcohol is much more effective (and I emphasize the lidocaine because it makes the procedure virtually painful). This procedure is done by an interventional radiologist and can be done as an outpatient, targeting only 1 or two cysts at a time (ideally large, 5 cm+ cysts in the kidney or liver, preferably ones where you can use your finger to pinpoint where the pain is). I've had this sclerosing procedure done 5-6 times, both kidney and liver cysts, and it's been extremely effective, with none of the cysts refilling or recurring. Granted, new cysts end up forming eventually, but in the interim, the pain relief is palpable (and I was able to taper off the OxyContin for a full year at one point).

Heat is wonderful. I use an XL heat wrap that I can wrap around my side and back. I use a heating pad as well as the Thermacare heat wraps at times.

Sleep is a challenge. I take Trazadone and Remeron for sleep (they help some). I haven't figured out how to sleep without pain, even when I take my pain medication just before bed. I did okay for a few months, but am back in a rotten pain/lack of sleep cycle. If only I could sleep....

Please be very careful with Tramadol if you take any type of antidepressant; it can cause seritonin syndrome which is no fun (my husband, reading over my shoulder, echoes that; he was the one who had to drive me everywhere and try to help convince the doctors that yes, they had given me too much medication and no, this was not a 3-week long anxiety attack).

When it comes to pain, you have to be your own best advocate. Be very descriptive and consistent in describing your pain. Keep a pain diary, listing your level of pain, type of pain, location, what you do to make it better, what makes it worse. If sleep is also an issue, include a sleep diary along with your pain diary (when you go to bed, fall asleep, how often you wake up and why, when you get up, etc.). When you talk with your doctor, discuss exactly what your goals are. Do NOT ask for a specific medication; that can unfortunately label you as a drug seeker. Instead tell your doctor you need better pain management as the tramadol and acetaminophen (assuming you're also trying that) is not working as well as assistance with sleep. Be prepared to tell your doctor you are already following all the proper sleep hygeine principles (google sleep hygeine to be sure you know what those are and if you're not following them, try them; they can make a difference in the quantity and quality of your sleep).

As for the runaround about who prescribed what, I have no idea why doctors do this. Passing the buck is ludicrous. PKD hurts. It's a well known fact. PKD is a kidney disease so common sense would dictate your nephrologist would be the prescriber for all things affecting the kidneys. The only reason I can think for why the nephrologist don't want to is they probably don't see you frequently (e.g. every month or two) and thus are hesitant to prescribe the stronger narcotics which the DEA would prefer are only prescribed to patients for whom doctors have a long-standing and frequent, on-going relationsip (some states require patients to see their doctor every month to get a prescription filled; it can be ridiculous at times). If you're not nearing renal failure, chances are your nephrologist would not recognize you or be able to identify your name if someone asked them, thus the reluctance to prescribe the schedule II narcotics (Percocet, etc.). I'm simply speculating here as many PCMs don't know their patients either!

I posted a few links to support Pain and PKD for Cableman, here are those links again if your doctor gives you any problems about how PKD can't possibly hurt:

Developements in the Management of ADPKD:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2504069/

PKD, Autosomal Dominant (genetics):
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=pkd-ad

Pain Management and PKD presentation from 2009 PKD convention:
http://www.pkdcure.org/tabid/1384/Default.aspx

Be consistent, be responsible (especially when it comes to using, storing and not overusing your medications) and let your doctor know that tramadol is utterly ineffective (it often is). Bring your pain/sleep journal and use that as your supporting evidence. Also bring a copy of your latest CT scan or MRI scan (the actual scan on disk as well as report). Seeing is believing when it comes to PKD and many doctors have never seen what PKD looks like inside a human being and don't truly understand the pain concept and how we manage to fit so much cystic organs into so little space. For many, one look and they're converts.

Good luck!
Ruth

PS Even the OxyContin and my breakthrough pain medication doesn't eliminate my pain; my average pain level is between a 4 and 6 (not to mention the narcotic-induced headaches they cause, a frustrating side effect I experience). My dosing has remained the same for a number of years. If you do end up on narcotics, be sure to ask about a bowel regimen; you don't want to end up constipated, which can be worse than the initial pain.

Ruth...thank you. You are a store of knowledge and and an inspiration to me. I am not a praying person but I will pray for pain relief for you. I cannot imagine living with the pain you describe and I wish there was a way I could take it away.

All the best...

I have percocet for bad days, tramadol taken with 500mg tylenol for not so bad days and morphine for horrible days. Luckily, I haven't had to take the morphine since the fall, but the percocet I take several times a week. It takes the edge off, but only for about an hour or so.