Opinion Request: When are the diagnoses done?

When are the diagnoses done?

I pushed to get a diagnosis of fibromyalgia because I needed help. I realized my symptoms had gone beyond what CRPS could explain. They all overlap so much that it gets very confusing. My PCP sent me to an R.A. because she found spots that seemed like Nodules and wanted to get it looked at. The RA was … let's just say disappointing. My PCP then stepped up and ran the tests to ensure that I did not fall under auto-immunes or other possibilities. Once we validated that there were no other things wrong, I decided to stop pursuing answers and start pursuing quality-of-life.

Normally I'm the take charge push forward and get things done person. With Fibro, I feel like I'm the "do I get up today" person. I have been working to get bedtime under control and get full nights of sleep.

Last week, the other shoe dropped. It isn't something I'm ready to talk about, but I am off to another specialist with another 3 months wait. I am so frustrated, that it is hard to express in FCC approved terms. My IBS and my CRPS, which have been patiently under control for years started going out of control. I went to the IBS forum to ask questions, and the nice responder pointed out that it was time for new tests. I think I knew that, but didn't want to think about starting it again.

Somewhere in the back of my brain is a voice that is saying "enough". I need a bit of control and the ability to work on getting my quality of life back. I need time to work on my marriage and spend time with my 16 year old and work on the bouts of temper that keep rearing their ugly heads. I need some space to focus on what works and what doesn't in my toolkit. I just found out that the topicals I had been using may be causing the IBS flare up. Since they were my least invasive pain method, this is, to say the least, disappointing. (Insert inappropriate swearing here)

There are several people around me on this forum that are worse off than I am. I know that I should be grateful that I am where I am and move my attention forward instead of dwelling on my frustration. It's just that one more diagnosis seems like one too many.

I laugh now about a moment when I was in labor and told them I was done. Done with what? The baby was crowning and it wasn't like I was going to pack up and go. But at a certain point, it no longer matters to you if it makes sense. You just want to take a break. Have 3 days where you feel good and can think for yourself instead of tottering around like a zombie. It's where I am right now. The choices are the same, I can't just walk away and say that fibromyalgia, CRPS, etc aren't my cup of tea. I just keep wondering how we know we have found the right diagnosis. We push and push and push to get someone to listen to us and find something. Some of the doctors are less than interested in really getting involved with this. There are no clear answers. And then they give you a diagnosis, almost as if to finally get rid of you or just shut you up. Can that diagnosis because trusted?

Rant aside, what does everyone use as the judgement for when the searching is done?

I had to laugh when you say that you're done. I've said that to my husband so many times - "can't I just be done? I quit." He always hugs me and tells me that yes, I can be done. I know I can't really, but for that moment, it all feels ok, you know?

So yes, you can be done. :) I see it this way: is it life-threatening? Is it making my life impossible to live? Not that it is all gone, but am I literally stuck in bed 24/7?

Make a list of your priorities. What come first? And work on those. There is an analogy that we use in church a lot, although it can apply here.
http://www.family-coaching.org/rocks-in-a-jar
http://www.christiancrafters.com/lesson_jar_of_rocks.htm

I have a 19 month old. In the last 4 years, I've been hospitalized 30 times. This doesn't include ER visits where I'm sent home after being stabilized (that's about twice a month). There are some days that I just don't think I can get out of bed and my daughter watches Sesame Street for a few hours. But I've decided on those days (or weeks, sometimes), that as long as she is fed and no one died, we're having a good day. :)

You have to re-adjust your definition of a good, productive day. Don't look back at what you used to be able to do. Don't compare yourself to your healthy friends. Just look at you and your family and those needs.

You can do this!

I'm the type of person that says, "I can do it" but sometimes there is a question mark in my brain. But I take one day at a time and pace myself and everything gets done eventually.

Firefly, yes, some doctors will diagnose patients with fibro just to give them what they are looking for. But, to be fair, fibro is diagnosed when they can't find anything else wrong but yet you have pain in all four quadrants of the body cognitive memory problems, etc. since there is no diagnostic test for fibro. The doctor has run out of options. I would believe the diagnosis if you have been through all the testing for the other illnesses that have many of the same symptoms. Now, if you are getting progressively worse, I'd get a second opinion. I did that, discovered I had AS and was put on the proper medication and I feel soooo much better. Listen to your body and your intuition. They are usually right.

I don't think we are ever done with getting a diagnosis. I'm older and more things are added to the mix. In the past few years I've developed AS, osteoporosis, and glaucoma. It's so ridiculous that it's actually getting funny to me. But, I just keep on keeping on.

Sherrine