Norma, I can't relate to the pain you have because my PKD didn't cause pain except when I had infections. but I still want to reach out to you because I hate that you are suffering unnecessarily.
there are other ways to treat pain, acupuncture for one, but I don't know if that would work on your pain.
I hope you find relief and soon. there is no reason you should have to suffer.
know that we love you and wish we could help.

Oh that sounds so awful. I don't understand why they are letting you suffer this way. THey should know that PKD can be a very painful disease. So they think you just want to get high or something? Confront them with that.

No doubt you have considered seeing another Doctor - Perhaps you need someone to advocate on your behalf. A family member who knows that you are in pain that might be able to accompany you and let them know that the pain is destroying your quality of life.

PLease don't give up. You deserve to be cared for better than this!

Hello,
I used to have really severe back pain when I was younger. It was when they were investigating the back pain that the PKD was discovered and the renal stones which I also have.
I was told that I had a degree of scoliosis of the spine. They never really gave me an explanation for the terrible pain. I could hardly sleep at nights because of it and could scarcely walk or stand. It was dreadful.
I am pleased and thankful to say that it did eventually ease. I still have pain if I have to stand for long and cannot really bend over much without feeling ill and in pain.
I sincerely hope and pray that yours settles down too. I know how totally wearing and frustrating it can be.
Remembering you in prayer,
Patricia.

Norma,
You have my utmost sympathy. But this seems like a new pain (you've never described it as "stomach pain" before) and is definitely a change in your pain pattern. While you've had to rest up for events before, you've never had to sit on the sidelines in agony, unable to enjoy you son's incredible accomplishments.

Please go to your doctor (GP) and ask for a complete checkup. Refuse to allow anyone to just assume the pain is due to your PKD or your stenosis. Remember, we're a system of system and something unrelated to either may be causig this severe stomach pain.

And if it gets worse or your doctors refuse to order any tests (you probably need some imaging studies to see what's happening inside, along with all the blood work, etc.), go to the emergency room doubled over in pain and explain this is a new, severe pain, IN ADDITION to the pain from your PKD and stenosis. The one thing you cannot afford to do is to sit idly by and rely on doctors to come to you or just to take some more and stronger pain medication if you can get it and call it a day. There is something new causing this pain that needs to be identified and treated.

I wish there was more I could do. Just please get checked soon to ensure whatever is causing this new pain is not something serious.

Very gentle hugs,
Ruth

Oh I've screwed this first letter all up, as usual. I'am in such pain that I can't even think straight, let along to write a letter to you guys on DS.

First of all I have no pain in my stomach (huge belly) Well, thats not exactly true either as sometimes, I get terrible grabing pain, but it goes away and I've had it for years and just basically live with it. I've told my kidney doc and he tells me they are muscle spasms. The pain is the pain from spinal stenosis that I have. I've done everything to take care of it, but now with this huge stomach, it's making it so much worse. Huge stomachs and back pain don't mix very well and there's not a thing I can do about it. I am skin and bones with this huge belly hanging over me and I can't take it anymore! Grrrrr I've been to orthopedic specialists and the answer is always the same, physical therapy, ten's, heat, stretching, basic exercise, injections into the spine with no good results and finally to have surgery which that can't or won't guarantee me will even work. I've been holding my own for a good many years with this crap, most people end up invalids, using walkers and all sorts of things that only make it worse. I've tried my best and now with this big stomach, I am totally powerless and I don't like it one bit!! I've even gone for acupuncture and it didn't do a thing, nothing. They told me it wouldn't but I said do it anyway, I am desperate. Didn't work....:( I need something stronger than Ultraset for this pain, probably I need morphine or something along those lines, jk, don't worry, but I do need something stronger than ultraset, good grief!!! The only way I can get anything stronger in NY state is to go to a pain clinic and be monitored like a junky, but hey I don't care, I"ll do anything for some pain relief. Then my GP told me she didn't want me to go to a pain clinic, just take more ultraset she stated! I've tried it and it doesn't help me one bit, not even a tiny bit. At this point, the only relief I can get is to lay back in a recliner chair, thats it....

Sorry Ruth for getting you so confused but I guess pain makes me do and say crazy things. I don't know what to do now, but maybe I need to go back to the orthopedic guy and beg him for help, but I don't think he's going to do anything either because thats why I stopped going to him to begin with, there was nothing left to do. I've managed to keep fit by going to the gym, but now I can't even do that anymore with these huge kidneys hanging over my body, I go, don't get me wrong, but it is hardly worth it anymore....

thanks guys and again I'am sorry for getting you so confused.

lots of love,
Norma..

Hi, Norma!

Sorry about your pain.

Did you get a good explanation about why your GP doesn't want you to go to a pain clinic?

Does she understand how you are living?

You might have to "dramatize" things a bit.

My prayers are with you!

Peace and Blessings!
CoachRIchie

Oh Norma, I am so sorry to hear you are not feeling well. It is so frustrating to think that you are not being taken seriously or they don't believe you. Time for a new Dr. that will listen to you! Someone is out there that will listent to you and help you. I will be praying for comfort for you. Do any of your friends that you are close to or relatives have Drs that they trust? I agree with Pukeko, maybe if you could have someone speak on your behalf that would help get the point accross. Hang in there. We love you!

Hugs and prayers,
Kelly

Norma,
I don't see any reason why you shouldn't go to a pain clinic and I doubt pain clinics are the only place in the state of New York where you can get more than Ultraset or Lortab; most every doctor can prescribe any drug, it's just a matter of willingness to do so. You are obviously in pain, from multiple sources. If your GP won't refer you to a pain management specialist (and about the only option for pain treatment at this point is medicaion), how about your nephrologist or your orthopedist? There is absolutely no reason you should have to suffer in constant pain because your GP thinks Ultraset is sufficient (which it obviously isn't).

Perhaps it's also time for a new GP, someone who has YOUR best interest at heart and not someone who is going to leave you suffering. For starters, your primary care doctor should be an internist instead of a family practitioner (I don't what specialty your GP is now). Your primary care doctor needs to be someone who will truly coordinate your care, keeping track of what your nephrologist and orthopedist both recommend as well as manage your regular preventive screenings, help manage your pain (or completely manage it if possible and in coordination with your nephrologist, just to ensure the medications are safe for your kidneys).

At your next visit, put your chair in FRONT of the door after the doctor sits down in his or her chair and refuse to move until you have a referral to a pain clinic and a prescription for some stronger pain medication in your hand. Make your doctor climb over you to get out of the room if necessary, but be adament about your need for pain relief. As Rich said, no stoicism is allowed; dramaticize a bit if you need to. No makeup, no dressing up, no looking good because you're going out even if that's what you've done for 67 years. You're in pain so you need to look the part; it really does make a world of difference.

Stand up for yourself and don't take any more nonsense from these doctors. And if the pain is too severe, have someone take you to the ER (don't drive yourself; ER personnel really question pain levels when patients can drive themselves...I speak from personal experience).

I shall waive my new magic wand over the computer and send you wishes that you find some doctors who treat you well and your pain level decrease.

With lots of love and very gentle hugs,
Ruth

Bless your heart Ruth and I will take all that you said to heart. Not into consideration but truly to heart. I'am done being told that I have to suffer, I've done everything that I was told to do and it got me no where! I live in Binghamton, NY where the sun don't shine and the doc's are bearly human. I figure that if they are working here that they don't have a chance of getting a better job, so that tells me a lot. My best bet is to go to Syracuse or Buffalo where Jen lives. this is truly the armpit of medical care in NY! We've traveled the states and lived from LA to NC to VA and finally back home where we were born. I truly appreciate all that you have said to me, I just read your letter to Jim and he said, "Yeah for Ruth!!" You can imagine what he's going through with me being in the pain that I am. Isn't a pretty picture. Thank you again and again for all the help and advise you have given me, I truly appreciate it all. You are a wealth of knowledge and advise, I am going to do what you have advised and I have no fears of doing it either. LOL, isn't it funny that you know me so well to know that I always dress up, makeup and all to go anywhere, especially to the doc's. Make lite of my pain, just as you said. I'll wear an old pair of cut off blue jeans and no make up at all, we'll see what that gets me. Acutally thats what I would like to wear as I'am in such pain, dressing up is the last thing on the face of this earth that I want to do, so I'll take all your adivse to heart and do it. Thanks again soooo much.

Lots of love and appreciation, My hope and prayers are always with you too, for a transplant for kidneys and liver. I think of you often..
Norma...

Oh Norma I am so terribly sorry about what you are going through. As usual, Ruth has geven very good, thorough advcie. I really fail to see how anyone would deny a 67 year old woman with no history of drug abuse a chance at pain meds.

Please let us know how this situation evolves. No wonder people end up self medicating with too many over the counter pills or alcohol or non-prescribed marijuana.

You don't deserve to live like this.

Wishing you all the best.

and by the way...congrats on the opening of your son's hotel. What an accomplishment! You must me one proud mom.

Norma,

Before I was diagnosed with PKD, I was being treated for bursting ovarian cysts by my OB/GYN. He was more than happy to give me a prescription for vicodin, which I have been using as needed for pain ever since. As long as you are SURE, like Ruth said, that you don't need to find out if there is something else seriously wrong, then if you could get a pain killer prescription from a different specialist (like your OB/GYN), it doesn't matter which doc it comes from.

Just a thought-- Is there a chance that you could get a painkiller from a different doc who would be more willing to prescribe it for you?

Unfortunately the doctors know there is not much to be done :(

I don't understand why they won't give you pain meds though...that seems ridiculous if you want them and actually have a legit reason.

I vote scream.

As loud and as frequently as you want to.

It's all I can do when it gets too bad.

You're right. You don't deserve this.

And I hope you find relief soon.

*hugs*

Norma,

I have no advice but did want to tell you how sorry I am that you are suffering so much and my thoughts and prayers go out to you.

Nicki