Polycystic Kidney Disease (PKD) Support Group

I don't know if anxiety is connected to PKD, but have also struggled with anxiety issues (although I never went so far as to seek professional help because I'm stubborn like that).

We were just learning about anxiety in my psych class. We did talk about how anxiety medications can be highly addictive.

However, have you tried medication and therapy together? This is the supposed to be the most effective. I do know that stress (such as anxiety) is very hard on your body. And if you have a pre-existing condition it can become even worse. Ecspecially since stress can raise your BP and we all know how bad that is for our kidneys.

If you are afraid of becoming addicted you should talk about this with a therapist and your neph. Maybe you can work something out where you only take the meds when you really need to and you take a low dose. And simultaneously you can be going to therapy to learn coping mechanisms and learn what your stressors are.

I found therapy to be more stressful and have just been working on my own on ways to cope (without detaching, which was a big problem for me). I never took medications because I have always hated meds and didn't want to develop a tolerance to them.

I will tell you that either way it is a lot of work and not everyone has the will to do it on their own. Most people need some one to tell them what to do and how to do it. I'm extremely autonomous and persistent, but that's just me. And of course there is nothing wrong with asking for help. In fact, it shows even more courage to ask for help then not to when you need it.

~Alona

P.S. Did you have the anxiety before you were diagnosed with PKD? I've had issues with it since I was a little kid and I didn't even know about PKD yet. However, a lot of other things were going on and anxiety does run in my family.

I've known about the PKD since I was 38 when I developed high High BP, no to your question about having anxiety then. A lot of messes in my life, sexual abuse as a child and producing an infant at only 13. I hid it away like a pro would, never surfaced again until I was 55. So there you see, I have just solved the problem. The thing of it is, I know it a problem, I've been in therapy and no one really understands. The only people that can really understand are people just like me that have endured this in their lives. So I live with that pain, I tried everything I knew of to solve the problem, sadly it didn't work. Now I have to do something or I'am going to die like this. My story is so long, it would take a book to tell you it all and you would end up in tears, so whats the point in that? I think it's called, post traumatic stress disorder? I need to be rid of it, I have a life to live and now my kidney function took a dive, I have that to deal with as well. To answer your question, yes, I've been in therapy and taken the meds at the same time, it didnt work. I've been to shrinks, you name it, I've done it, but it's didn't work!! I've tried everything and I'am getting desperate. Yes therapy is a lot of work, but I was willing to do the time, it just didn't work and now I'am stuck with this anxiety that is eating at my very soul.BTW, I'am taking the lowest dosage of klonopin that I can .5 mgs, but it's doesn't work anymore because I've taken it for so long without an increase in strength. I suppose I've developed a tolerance to it, I'am sure I have. I've taken it for 5 years off and on, mostly off. You look like a baby to me, you are a baby and it's a good thing you don't take any meds now. If you dig deep, you'll find the problem right within yourself. The biggest problem is how to fix it! I think the most important issue is to talk about it, face it and somehow, get rid of it. Your way too young to have to have this hanging on your shoulders. If I was young again, I would do everything in my power to get rid of it. I tried the best I knew how at this age, but it
won't leave me. I guess I was looking for something to blame it on, ya think? lol
thanks for all your input honey, keep working and studying hard, you'll get where you want to be.

For those of us with a chronic disease, it's easy to "blame" everything and anything we have on our underlying medical condition. But PKD in and of itself doesn't cause anxiety, or depression or any of the many characteristic we tend to "give it"; it's just a disease and a gene we happen to have. It's how we deal with it and all of the other things in our lives that make us who we are.

We all experience stress; in fact we need stress in our life in order to live. For purposes of our discussion, anxiety is just stress on steroids. Anxiety is a very tricky diagnosis, but for psychologists and psychiatrists it's an easy one to label. If you're not calm, cool and collected under all circumstances, to include ones in which you would normally find unusually stressful, then they slap on a label, hand you some pills and call it a day. Rarely are you offered any short, let alone long-term therapy to work through the underlying issues (loss of a spouse, how to deal with a potentially life-threatening disease, etc.). It's so much cheaper and easier to provide pills and just keep refilling them as needed.

Klonopin is cheap and readily available and can be a very effective anxiolytic. It serves its purpose for short-term use in an immediate crisis. I happen to use it for severe restless legs syndrome (low dose, but it is at level at which my body is physcially dependent). It's also used as an anti-epileptic. But for long-term treatment for anxiety, it's simply a crutch, not a solution.

And yes, Klonopin and all of the benzodiazepenes (e.g. Valium, Xanax, etc., are very addictive. You should not just stop taking them suddenly. I don't know how much you're taking now, but even 0.5 mg per day is enough that you will need to taper down before stopping completely. And do so under a doctor's supervision.

That said, there is absolutely no reason for your to suffer from anxiety in silence. There are many other medications that are very effective for anxiety. Many of the traditional antidepressants work very well for anxiety (e.g. Zoloft, which I take for anxiety, not depression, although I probably have a bit of that too). And I can't begin to tell you how important therapy is, with the RIGHT therapist.

Therapy is really hard work. It's not just talking about how you feel week after week, just venting. It's about dealing with specific issues. And doing homework. It's a lot of hard work, exercises you do in sessions (individual or group as appropriate) as well as on your own. You learn new coping techniques, new ways of thinking, new ways of dealing with anxiety producing situations, and slowly incorporating those into your day-to-day living. It takes time but it really does work. But you need the right therapist and the emotional willpower to fire the wrong therapist.

I wish I had a magic wand to wave and help you feel better.

Ruth

PS Alona may look like a wee lass, but she's very wise for her age!

Norma,
You're on the same dose of Klonopin as I am. I find Klonopin utterly useless for anxiety, although doctors are more than happy to up my dose when I have an axiety attack (I simply don't take it and just keep breathing and know the anxiety attack will pass, although the underlying anxiety may still be there).

What I have done is find a couple of very good psychiatrists over the course of a couple of years, been on Zoloft for about 6 years (which has really worked wonders and is non addictive)and found a couple of very good therapists to work with over the years who challenge me to deal find and deal with a variety of issues and force me to learn new coping skills. I may have a minor in psychology and counseling myself, but it doesn't mean I can do self therapy. I need someone else to help me get through some of the tougher times in life and they are my lifesavers. It really is hard work, but it is so worth the effort to find and work with a good therapist.

We all have issues, even as children (e.g. my dad died when I was 6; I'm now 48 and it still affects me). Sometimes those childhood issues follow us and it takes years before we recognize and deal with them. They pop up and the strangest and inevitably most inopportune times!

I wish you well.
Gentle hugs,
Ruth

Thank you so much for all your good advise, unfortunately for me, I've been there and done all of what you recommend. I've taken all the Seritonine uptake drugs, e.g. Zoloft, etc. They virtually do nothing for me other than to aggitate my already aggitated condition. The only drug that I have been offered that has really helped is the Klonopin. Because I am the "perfect person" that I am, I know better than to take it very often. (want to throw up now or later)?
I have found in my experience that psychatrist's are the rudest, most unhelpful doctor's I have ever met! They speak with you for 15 min's or so and ship you off to a therapist that doesn't know up from down, or has no experience at all. How could they anyway, they haven't experienced what you have? My last therapist was oh about 27, from a very wealthy family in NYC. After about 15 sessions with her, I never went back. Thats been pretty much the "norm" How many women do you know that have suddenly remembered having a child at the age of 55? I'am doubting not many. I guess I need to stop all of this, it's getting no one, anywhere. This is afterall a PKD support group, not a post menapausal womens group. My back is hurting me very bad, I have Spinal Stenosis on top of kidneys that are as large as everyone else has. I think that the pain is worse than anything else at this point, and it makes everything 10 times worse than it really is. I've learned to cope with what happened to me as a little girl, everyone, as you have said has "issues" The biggest problem with me is that I somehow, put it away... never to deal with, but that didn't work, it crept back into my being. I found my son, I searched for him day and night for 3yrs. after I remembered it all.He rejected me, that...in itself is, I'am positive, the problem, and I can't deal with it. I understand completely why...but I still can't deal with it.I know I have no choice but to accept it, it's killing me. Then to go into kidney failure on top of it all, is more than I can take. If I ever had one word of advise to give to parents, it would be this. Make sure you know where your chidren are, every minute of every day. Don't believe anything that anyone says to you about what they are doing, See for yourself. I am a victim of child abuse! I know what I am talking about! I am fairly certain that I will never recover,however one never knows, do they.
Thank you so much for your words of wisdom and help. I just don't think that there is anymore help for me. I am 67 years old and still suffering. God Bless you for all that you do! I wish that everyone on the internet could read what happened to me, then maybe we could stop what is happening to our children!

there is PTSD support and also support for adults who were abused as children. you might want to do a search for those groups, I don't know if Daily Strength has any - you could even start your own.
talking about it helps IF you are talking to the right person, who may not even be a professional but a caring trusted friend.
not everyone wants something like this laid on them so if you choose to discuss it, be sure who you are talking to.
as for psychiatrists, my sig. other has psychiatrist friends he grew up with and still is close. one is warm and caring, one can be quite rude and the third (all brothers) fun loving and a real risk taker. like anyone else they are all different.
Norma, Ruth is right, PKD is its own problems and has many other problems but shouldn't be blamed for every problem in our lives.
I am truly sorry your son rejected you and I can't imagine how much this must hurt but leave it alone and just talk to someone who can help you deal with it. your son may someday change his feelings - who knows what hurts he dealt with and may blame you for them. all adopted children don't have wonderful, loving parents despite what we may have been led to believe.
again, there are support groups, in person and on line. I am looking for one for partners of passive aggressive men to help me deal with some of Jim's silences and other slightly mean things.

Norma,
Most psychiatrists are the drug pushers; they write the prescriptions and ship you off to see the therapist. Most of them don't practice in terms of therapy.

As for social workers and psychologist, you are hiring them not only for their expertise, but also for your ability to establish rapport with them. I've fired more than a few psychologist in my time (I'm 48). Fortunately the very first one I worked with, he and I just clicked. It's been a tough act to follow though and everyone else seems to want to follow some formula (the same forumla) and I'm not a round peg trying to fit into a round hole (I wouldn't fit anyhow!).

There truly is no need for you to continue to suffer, whether you're 17 or 67. The right support group or therapist is out there for you. It takes time and energy to find them. As Helen said, check on daily strength for some online groups. Check you community services for some in person support group. It doesn't matter your age; your experiences are still the same. And try looking again for someone to work with one on one. Interview the therapist first, come up with a list of questions, ask about how they would deal with a patient in XX situation, at XX age, etc.

Alas, chances of finding a 67 year old therapist who's been through the same life experiences you have is slim to none. But your therapist doesn't need to have experienced the same life events to be able to help you. They need to be empathetic and have the techniques and be able to help you accept what has happened and to move on. There's nothing that says you have to stay, emotionally, where you are right now. Age is just a number; it not a limitation in how we grow emotionally or mentally.

As for the Klonopin, if it really does work, then use it. It was prescribed for the anxiety and at this point in time, you need the physical relief and don't need to be worrying about any physcial dependence. You're kidneys can handle it with no problems and you're not about to go out knocking off convenience stores to keep up your stash! Use it. And if you get to the point where you no longer need it, then you and your doctor can work on a slow tapering plan to get you off the medication. But don't suffer needlessly for fear of dependence or addiction. You've tried the other medications; they didn't work. So use the Klonopin when you need it and stop suffering.

Pain can also aggravate anxiety and you mentioned spinal stenosis on top of the PKD kidneys. Have you talked with your doctor/nephrologist about pain management? I know when I hurt (which is all too often) my anxiety level skyrockets. It has nothing to do with the pain medications and sedation from them (I don't find any of them sedating; I'm a bit of a paradox there). It's just that when I'm in pain I tense up completely and want to roll into a ball (although I can't because my liver is in the way). And I wait too long to take my pain meds because I hate taking medication of any type, so the anxiety gets worse, then I hurt more, and my anxiety gets even worse and the cycle becomes really vicious. You would think I'm old enough to know to just take my darned pain medication and short circuit this pain/anxiety cycle, but age doesn't always confer wisdom in all facets of our lives (besides, according to my husband, I'm very recalcitrant at times...lovingly used term used thanks to title of medical journal article about me and PKD pain). So, to make a long paragraph short, talking with your doctor about the pain of the stenosis and your kidneys may well help with the anxiety as well.

In any case, check out some support groups and other therapy options, take your Klonopin without fear of addiction or dependence, and talk with your doctor about pain management. Just a few things to keep you busy and hopefully help you feel better over the course of the next few days.

Gentle hugs,
Ruth

PS This may be a PKD board, but PKD is just a part of our lives and as far as I'm concerned, it's pretty hard to isolate PKD from the rest of our lives, so this is a PKD LIFE board and you're welcome to vent away on any topic. Our lives affect our PKD and PKD affects our lives.

I'am so sorry I've haven't replied to anyone's messages to me, but here I am now and appreciate all of your comments more than you will ever know. I did what you recommended Ruth, I went to my GP and had her get me geared up with some meds to help with pain and the anxiety. I've taken most of the pain meds before, but that was a long, long time ago, I'll give them a try again. For the most part about the spinal stenosis, I walk and walk and walk, I guess it's for the anxiety too. Not that it helps the pain, but it does keep me loose and more able to do the things that I want to. Everyone else that I know with spinal stenosis, which is a lot being in the medical field, is using a walker or in a chair of some sort. I'am glad I didn't go that route. I think I need to learn how to put this all behind me at this time in my life and just pray that I don't go into failure anytime soon. Not sleeping and being in pain 24/7 makes it hard for me function let alone to think rationally. We just moved to this area of NY, we came from NC, it was where we planned on retiring. We made a huge mistake and came back to NY, the heat of NC was unbearable, too hot to even golf and we lived in Pinehurst, NC, the golf mecca of the world! In the wintertime, but sure not in the summer. So here we are back in NY retired and my GFR takes a dive. All the old memories of what I went through came flooding back, normal I guess but not very nice. thanks for telling me that PKD is a part of life and life is a part of PKD, makes perfect sense to me. I guess we can't filter out all the bad things in life just because we have PKD, can we? Thank you again and again for listening to me ramble, sure hope someone rambles back at me soon. I go to the doc's on Thursday to see what's going on, I'll be back and tell you whats happened. I don't feel like I'am in failure, but my stomach has grown, indicating the cysts have increased in size and quantity. Sigh... Liver too most likely. I'll keep you posted. Thanks again to all for your advise and help to me, sure hope I can help someone as well. Luv 2U All...

I'm glad that you seem to be doing better. Hope it gets even ... more better. lol.

Hi, Norma!
Yes, you have quite a story!
And some of that story isn't a pleasant story.
I'm curious about the pleasant part of the story.
There are pleasant parts,aren't there?

When you're anxious, what are you thinking about that triggers the anxiety?
Might there be a better though that you can think that brings you at least a tiny degree of tranquility?
Do you have opportunities to laugh?

I know I'm just a youngster, (61) but I wouldn't mind "friending" you! :-)

Peace and Blessings!
CoachRichie

Hi Coach, sure I would like to be your friend, I'am always everyone's friend. You are somewhat of a baby though, 61, afterall! A younger man, LOL About the happy times, sadly Coach, there really aren't many and it really is sad. I try and put it all behind me and thus far, haven't succeeded so I might as well give up, at my age, wouldn't you agree? Because I dodged another bullet yesterday, I've decided to start making new memories, ones that are happy and putting the past where it belongs. Hope to hear from you soon. I guess you are a PKD patient, where are with that. Lots of love,
Norma....