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excruciating pain what else could this be?

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Posted 3/29/2013 1:04 PM (GMT 0)
:: confused so everyone still pretty new here. Had a few discussions and repieslies to some topics. I posted my first thread yest . No subject icgirl. Anxiety forum. couldn't get a reply so I'm trying again. Here. Mostly because it concerns some unusable and serious pain. I have been diagnosed with an incurable bladder disease for 3years now. It is the most painful thing I thought I have ever dealt with. But lately there's more. I have been having some really painful and nerve racking other things going on with my body that I don't understand. Pain and throbbing naturally in my pelvis as usual. Not that I ever get used to it.but also pain and throbbing in my neck, constant headaches, serious pain in my legs, and numbness in my hands. My rib cage feels like its on fire. I've been up since 5 am and tried to urinate every ten mins for hours now. My inner thighs hurt and burn and my shoulders and back. Its everywhere! I've had some of these symptoms on and off for a while. Especially the numb hand thing but some are new really painful and scary. What could it be? If anybody knows please tell me. Also I'm extremely exhausted constantly and its really hard to do anything. I mean. Anything! Please help I don't understand. icgirl.
Posted 3/29/2013 1:34 PM (GMT 0)
Sorry to meet you like this, but glad you are here.

First, none of us here are doctors. Just people with experience. I've had very little medical training, and my mom is a nurse. That's about it.

That being said, I do know that constant pain can cause other problems just by itself, not to mention the underlying issue. The best advice I can give is to get checked out by a doctor and make sure there isn't something else lurking around causing the issue. It could be as simple as a treatable infection to who-knows-what. The body can do weird things sometimes.

I know that's not much help, but it's the same advice I'd give my own brother.
Posted 3/29/2013 2:05 PM (GMT 0)
Thanks LC for that. Honestly. But I have a problem with the seeing a doctor thing because I lost my health insurance a few mons. Ago. Since then I've tried local university Hosp. Who I have to say treated me without treating me at all. I saw the urological oncologist who tried to refer me to the pm doc but pm doc wouldn't treat me because he didn't know enough about my ic . So he shoved me back off to the urologist who kindly looked at my swollen face and tear filled eyes and said and I quote I'm so sorry. I'm new here and we just don't have the problems there that you all have here (meaning DEA regulations on pain medication so strict that I've lost count on the pm clinics raided , shut down , and hospital regulations as well as pcps harrassed to near extinction thanks to our new ky.governor) I just can't help you. I'm afraid I'll lose my lisence.unquote. then he proceeded to suggest I try another university hospital 100 miles from my home.really very helpful I must say. I felt defeated. I never went back. I mean the man actually did a bladder surgical procedure on me and they sent me home with an antidepressant and antihistamine for pain. He antidepressant made me hostile and the antihistamines made me wheeze.so since then I've tried to deal on my own. Very unsuccessfully. I have a PCP who will take cash patients but he's just as scared as the rest. Until my new health insurance starts this April it would appear that I'm on my own.I don't even know then if my old pm doc will see me again. I just wanted to know if anyone has anything similar happening to them. Sorry this is so long I just feel so hopeless, angry, and confused.thanks icgirl.
Posted 3/29/2013 2:41 PM (GMT 0)
I banged my head against the same kinds of issues for 2 years before I found a Dr who actually believes I am in pain. University hospital, no insurance, the whole deal. What finally happened, is after many trips to the ER (Which is unfortunately your best option right now, I suggest you use it. They cant "turf" you forever), I started keeping notes. Daily notes about what hurt, how much it hurt, and if it hurt at different times of day.

Showing that you are organized and serious seems to make docs pay more attention. Just stick to the facts, and use that 0-10 pain level indicator. But you can't make everything a 10. Be rational and subjective about it. Once you have a couple weeks worth of diary built up, it is more impressive, and seems to make that "trust" thing happen.

I used to project my problems on the doctors that I was seeing. Then I realized it was me going about it all wrong. Yes, you hurt, and yes, you are miserable right now. But start working on it, even if it's just keeping track of what hurts and when. Doctors need data, and the more you can give them history-wise, the better.

The great Kentucky Pain Panic going on right now will end, and everyone will settle back into routine. There's something like 17 states where similar laws have been passed, and after the initial confusion, people will know what they can and can't do. Those doctors who didn't hack it regulations-wise probably weren't worth going to see anyway. If they can't keep their practice straight up, how were they treating their patients?
Posted 3/29/2013 2:44 PM (GMT 0)
Hi Icgirl an welcome to the forum. I have read all the things you have going on and wish I could wave some magic wand and have all of the answers for you. One thing that stands out the most is when a person has more than one set of symptoms going on at the same time getting treatment for everything is a long drawn out process because the drs are only going to treat one thing at a time and this happens even when a person has insurance. You indicate having insurance again next month which is awesome.What I would do is start making a list of everything that is going on, what meds you have tried, what has helped & what has not helped. If you do not have any drs including a primary care physician, start looking for a dr now. By doing all of this now when your insurance kicks you will be way ahead of the game by having everything ready for the new dr.

The only other thing & I really am not sure I would do this myself, is if the pain just became so great, is to go to ER. ER will probably do nothing for you except act like you are there for drugs, they are great for acting that way towards everyone regardless what the trouble is. Pain mgt has taken a very hard hit which has done nothing but make it very, very difficult for legitimate people to get help. Please do not think the drs are picking on you because they are not, its this way for all of us.

I am sorry that I am of no real help for the moment but I wanted to say hello & I hope you can get some help very soon.......Susie
Posted 3/29/2013 7:49 PM (GMT 0)
Hey all. Thanks for getting back to me. Many of the things you guys have mentioned I've done and am still doing. I keep a reg. Pain journal. I used to take it to all my app. With my former pm doctor. After a while he kinda smiled and said this is more for you than for me. Its so u can see how you are progressing. Which I was. I had a pretty decent quality of life. And yeah I know I'm not the only exception here. I lived in ERS until I got my urologist, pain man. Dr and gyno spec. Before I lost my insurance. and the Ky. Thing I wager will pass. They're already changing some of the more strict guidelines because it has taken the drs tool boxes away. I have been told we don't like this anymore than you do sorry. And ERS? Not likely. I have some white coat syndrome now after the whole trauma facilityand all. Thanks for you're help and encouragement I've been goin. Through this fer a while ya'll.icgirl.
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