Hi there, I also have PKD. I have had chronic pain from my grossly enlarged kidneys for over a decade now. I have been on dialysis for a year & a half. It took me years to accept my body's limitations. It is a process.

Now I just try to limit myself physically as much as I'm able to. I find the less I do the better I feel. I walk slower, try not to bend at the waist, avoid lifting heavy objects. I do live on my own now. I still keep my place clean but I do it in small amounts.

As far as hobbies go I started getting into crafts since they are less physically demanding. I read often but found the last year before dialysis started my concentration was poor. So I switched to easier reads. Lately I have been reading more intense books once again.

Daily Strength has been a great support to me. I have made some good friends here. I also find the journaling helpful. You might try talking to your doctor about something for your pain. I am on pretty strong pain meds myself. I wouldn't be able to function at all without them. Take care Kelley

I have been having a really hard time accepting all of my medical issues and physical limitations. One day I'm as health as a horse (so I though) and the next day I'm sicker than you can imagine. I am having some really bad mobility issues this week. Both of my legs are now aching constantly from overdoing it. I can't sit still and keep on doing work I should not do and today my legs just don't even want to carry my weight. I have to go to the store today and I don't know if I'm going to make it. All I can do is try. Fighting this is all good, but sometimes you just have to listen to your body and slow down. I actually find joy in nothing anymore, not even food. I have been consumed with death and doom for over 2 weeks now. It is a full blow low-grade panic attack that is burning a hole in the pit of my stomach. I feel like I'm doomed no matter what I do. You are so young to be in this much pain. That has got to be rough. I didn't become sick until I hit 35. I hope you can find some sort of hoppy that doesn't cause any increase in your pain. It is good to keep the mind occupied. I can't seem to do this myself, but some of you guys do well with this. Hugs!

J

I'm sorry for all of the misspelled words and the weird sounding post. I am just bat crap crazy these days. I hope you're feeling better. Hugs.

Your very young and have a lot on your plate. Its really tough being the person who can't just join in with everyone else and go have fun. It can be a solitary existence, when you can't be out with people. I've dealt with Chronic Pain in various ways/shape/forms since I was 17...that was a long time ago, i'm now 47. Finding ways to maximize what you can do, so that you get the most quality and enjoyment out of life is important. If you're having trouble doing that on your own, consider seeing a Therapist and learn some coping skills and ways to deal with the frustration and irritability that's going to be there. Sometimes others can help us find ways to do that when we can't find the path ourselves.

Take Stock and Inventory into your life as it is, with the limitations your illnesses create and try to match what you can do to what your able to do . I enjoy volunteer work, I have to pick volunteer work that I can do on the phone or from a computer, due to mobility issues.

With the Internet and the day and age we're in, there are a million different things to do....take some time look around see if there is a hobby or some other type of activity you might like online.

Its different for every person, but you have to get to the point where your okay with the life you've got, then you can get past it and find things that you can do to add joy and activity to your life. You have to stop looking at the big picture as, "This is the world and this is all that I can't do!" go to the place where, 'This is my world and this is what I can find enjoyment doing!" then find things that you enjoy and can do....and do.

Finally been able to get back on the site since they changed it. I'm still struggling trying to accept things really, a lot of this pain seems like it's random. Some days it's a lot worse than others. I have an appointment with my doctor today, and I'm trying to think of what to ask him really. I have pain in multiple areas and it's just confusing and really scaring me. I don't know exactly what to do really, my mother keeps on saying that I should be able to frind some doctor that can help, but I really don't even know what they can do for me or recommend that I have not already tried and has not helped or just things that I have opted to not do.

Hi, I know this is difficult, probably one of the hardest things you'll do. This is why keeping a Pain Diary is important, because you right down the pain, the level it's at, what your doing, what triggered it, and where it's at and what body parts its affecting right then and there when it's happening. Please don't fool yourself into thinking that this is something that some certain Dr. is going to be able to Diagnose and fix one day and all will be back to normal....Chronic Pain rarely happens like that. You most likely have a very long road ahead of you with this and the sooner you can start accepting it and working on ways to live your life with it, instead of around it, the better off you'll be.

Through this Journey you're going to have everyone and their brother suggest every Dr. they or their neighbor knows, because that Dr. fixed so and so....at first you'll say think you, I'll check it out, next you'll say, I've already seen that kind of Dr., eventually it will be, "you don't have a clue what i'm going through so please stop suggesting random things for my life and treatment!" And all of those will be okay. Your going to go through stages, grief, anger, loss, acceptance....and each phase takes time, this isn't something you can rush your brain and body into accepting.

One thing I noticed you said that put up a bit of a red flag was, "just things that I have opted to not do." You may want to go back and re-visit any treatments or tests that you've refused and make sure that they aren't things your Dr. really think might hold some type of answer. Often times Dr.s are far more willing to keep helping and suggesting things if you do as many things that they suggest as you can. And since you have illnesses that tend to need to Rule things out to get to concrete diagnosis', there may be several things you need to do that may not always make sense to you.

And please understand I am not in any way judging you, I'm just racking my brain trying to find whatever suggestions or help that I can offer to help you get answers and learn how to accept your life as it is now, and then learn how to be content and happy with that life. Having done this for over 30 years, I know the struggles, the anger, the disbelief that the medical field can't figure things out, the loss of the life I once had and finally the acceptance and the willingness to help my Dr.'s and Specialists in doing whatever is necessary to figure things out so that my life can be as normal as whatever my new "normal" is going to be.
And while doing all the Medical stuff I was also dealing with a BiPolar w/Severe Suicidal Depression diagnosis, learning how to live with that, gain stability, and not let the Suicidal thoughts just take over and let me give up. I know how hard this is....but it does get easier as you go and learn coping tools, skills and ways to adapt.

You can be researching everything about your illnesses that you can to help you adapt your life, this includes foods, PT you can do at home, vitamin/mineral supplements, etc. Hang in there and take care.

I've thought about a pain diary before, I'm just the type to get pretty distracted and forget to fill it out really. Also when I said I've opted out of things, I was really talking about surgery, I do take things into consideration. Also, yea I do it was just that easy that there was a simple solution to make it go away, I know after just dealing with it for a few years that is really is not that simple. I do however feel that here is a way to feel better that exists, and if not then there will be a way eventually, it's really a matter of finding it. I'm also dealing with depression and suicidal thoughts, so I can relate to that. It's hard but it's something that more people go through than we often realize, so we're not really alone in that aspect although physically we might be.