I think my doctor understood me today (update 4/2)

[slickt]

I had a follow appointment today for my elevated CK levels and I ask a lot of questions about CK levels and it turns out that my statins med was causing it to be elevated but I was still having all the pains I was having before . My doctor didn't understand why I was still hurting , so I was prepared this time I have been keeping a diary of all the pains ,acking , emotions,feelings . I had all the times of the day when the pains were the worst , how many times it would happen a day and the dates. I think she finely seen how much pain I was in everyday . so she took some more blood to check my CK levels again to make sure they are going down and going to check for lime disease and also made me a app. With a rheumatologists . Maybe now they can find out what is wrong with me I hope.                                                          

[Tay]

Sounds like you might be getting a look in!!!!  Keeping the diary was a great idea, and I really hope that she takes it all on board.

Hope the appointments go well too.

Take care

Cheers

Tay

[Lonesome George]

I hope you can get things worked out.  But, don't put all your hopes in the rhumey.  They once used to treat and believe in fibro. Since the government stepped in and has put the squeeze on narcotics most rhumeys will not accept fibro patients because fibro is not accepted anymore as a reason to prescribe narcotic meds.

They can't fix fibro, the meds they can prescribe won't control the pain and other symptoms, they have no concrete evidence what is causing the pain, this leads to insurance giving them a fit, the patient is not happy and keeps complaining of pain, so the best thing is to send the patient down the road.

You may find the good one, but the day of the rhumey as a fibro doctor is fading quickly. I found that out the hard way.

Fibro is progressive, there is no cure, no one treatment that works, and what does work is only to ease the symptoms some.  This is a life changing affliction.  We will never be able to do what we once could, ever.  Taking med after med to try to get the old life back only makes things worse.  Take as little as possible to do what little you can. Many meds may work some for a short time, but the side effects and withdrawal are not worth it. Research every drug before you take it. Go to USER reviews for information. The med sites are all owned by the drug companies, don't trust them.

That is the fibro life.  It sucks, but that is the way it is.  Good luck.  I believe in not sugar coating things. It may seen the wrong way, but I wish I had been told the cold hard facts many years ago. You are your own best advocate. Don't let a doctor run all over you and shove meds on you that you haven't researched. Docs don't know, they rely on drug reps, and we know who butters the reps bread.

[slickt]

I understand what you are saying lonesome George. I haven't been diagnos with fibro and l sure I don't want to be. I was just glad she seemed like she believed me for once , that seems like progress to me at this point. Thanks for the advice I need all I can get!!    Thanks slickt

[Robby]

The wonderful thing about people is even though we are experiencing exactly the same thing, we still have different ways of looking at our situation, and want to achieve different things with the same symptoms. Personally, even though I agree with almost everything George said, I am willing to try anything that might ease my pain some. Sometimes I decide I don't get enough relief to justify taking it, but at least I tried. Then when it comes to side-effects, if I get enough relief I don't care what the side effects are.

If a medicine will drop my pain level enough, I don't care that it is making my life shorter. To be honest between the fibro pain, COPD from smoking, and my various emotional problems, I don't really want to live long anyway. If something can make my shortened life more comfortable and easier to deal with, it's worth it to me, I prefer quality over quantity. I will take a chance on making things worse, if the probability of an improvement is high enough.

You are your own best advocate, doctors are only going to do what it takes for you to stop asking for more. That however does not mean they don't care, it's like when I was managing restaurants, if I had a customer complain about their order not being right, the first thing (and hopefully only thing) I did was replace the order with the correct one. If that wasn't enough I offered a coupon for their next visit, if that satisfied them that's where I stopped, if not then I would comp their meal, etc. etc. etc.... It's the same with the Dr., they are only going to do enough to satisfy you.

I have lost count of how many different Dr.'s I've seen since I was first diagnosed in 1998, after years of being called a hypochondriac, or given some BS answer just to get me out of the office because they didn't know what was wrong. But out of the I'm going to say out of the over 20 Dr.'s I only had one that I would call a bad Dr. and the pain clinic sent me to him when I first started there, just to see if he could help me. I was told to see him once or twice and if he helped great, if not then don't go back, since his whole philosophy was what I would call a naturalist. He didn't believe in giving medication, and only for a short time if he did. Which I had one Dr raising my meds, then him taking me off everything. So really it wasn't that he was bad, just that his treatment plan did not work for me, and he refused to believe what I was telling him. I've had a few that I hated going to see, because they just didn't believe I was in that much pain, and so they kept trying to get me off the medication that allowed me to stay alive, much less move around. Since they were at the only pain clinic for 100 miles, I had to do what they said, otherwise they would tell me I couldn't come back, but they were doing what they thought were right, not that they were bad. I had one that didn't want to give me anything, she kept talking about how she had to be able to justify my treatment to the DEA, and she wasn't going to lose her license over giving a patient too much. She didn't last long at the pain clinic, she was just too afraid of the government.

So from my experience most Dr's do try to do what's best for their patients, as long as it doesn't jeopardize their license. But, sometimes they don't understand fibro, so they don't know how to treat it. Then when it comes to the drug companies, yes they are in business to make money, not make patients better. Yes, I really think some of the stuff they do is reprehensible, but technically it's not illegal, even though it should be. Yes, they push the patented drugs, not generic, but that's how they make money and stay in business. I think that sometimes they don't test for certain things before releasing a new drug because they are afraid what they find will keep them from releasing that drug, so they find a "legal" way not to test for that. Again, reprehensible but not necessarily illegal. I do think they are more worried about their profit than their customer. But again, if it gives me enough relief, I don't care if it does kill me, as long as my last few years are better than what they would be without it.

That's my opinion, whether it's right or wrong. I know that not everyone will agree with me, and that's fine, that is their prerogative.   I don't mean to come across as saying other opinions are wrong, because their not. If my experience had been different, if I had a Dr do me the way someone else did, then I would probably see things the same way they do.

[ronr]

Those logs really do work.  It's something for people to see on paper rather than just hear from the patient and it shows trends.  They love paperwork to include in the files so they can document.

[foxgrove]

Well done!!!  Having a journal has gotten me out of more scrapes than I care to remember.  It's been my memory, my salvation (geez, I really AM allergic to that med, maybe we'd better tell her before we fill this prescription!!), and a most necessary way to prove that when I say I hurt, it isn't just talk (re defending myself against a LTD insurance company who had discontinued coverage).

You have now experienced it and I'll bet you'll try like crazy to keep journalling.  I encourage you to keep on, even when it feels useless like you're just recording the same thing every day.  It's important sometimes to be able to look back and say, yeah.. that sucked for a long time but look here and here.. we had good days then.. maybe another good day is coming soon...

Bravo brother.  Hopefully this is a road that leads to some serious answers for you.  Keepin you in my prayers.

[slickt]

I think I will keep on with my journal of pain . like you said foxgrove , I could look back and see patterns of when I feel the worst or when I feel the best . I do think in got my doc. Attention on how I am feeling . looks like a long journey ahead of me . I would like to thank you all for the help and kind words !! THANK YOU  .            slickt