How do you live with it????

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Saturday, May 09, 2009
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All the test results are in. I don't have... RA, OA, Lupus, and the Rhummy doesn't think it's fibro. Now What. This has been a terible blow to me. I'm sick. Why can't they find out what's making me sick. Every DR, and there have been tons of them, Think it's something different. And most conclu...

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I understand...
danidale
Saturday, May 09, 2009 at 06:31 PM

I highly recommend finding a qualified (and sympathetic) pain mgt. doctor to help you. I've been to tons of drs. and finally found a pain mgt. doc who UNDERSTANDS. The one I had before him was a total (insert bad word here). I was going through endometriosis, cysts, interstitial cystitis (bladder) and fibromyalgia. She didn't even bother to research what these conditions were all about and was very mean to me. God sent me 'an angel' of a dr.. If I didn't have pain mgt. meds, I would not be able to get out of bed. I have 16 and 11 year old boys, so I must at least be able to do the necessary day-to-day things for them when my husband is out of town. Fibro is not something that shows up in a blood test or even the rheumatologists' 18 point sensitivity test 100%...that's why most drs. dismiss it and call you depressed or underexercised. I used to be able to work in my yard for hours each day...now, I can't even walk very far in my backyard. I think (besides the pain), it's the hardest thing to accept. Please write me back anytime. I know it helps to talk. I'll say a prayer that you find a pain mgt. doctor ASAP..

God Bless,

Danidale (screen name)

Danita (real name)

re: I understand...
c21tamit
Sunday, May 10, 2009 at 02:22 PM

Thank you for your support. I know I can't give up. My husband is trying to understand, but it's not his body going through this. My kids are patient. Well, as much as an almost 18yo son whose headed off to the army soon, and 13yo twin girls can be. The hard part is remebering I need to be good to myself first. It's not being selfish, the way my mother always said. And remembering that Doctors don't know everything. Thanks for your support. Pain management needs to be the next step.

Tami

why can't they find out what s wrong with me?
savstate
Sunday, May 10, 2009 at 09:02 AM

I'm currently going through the same thing. I was diagnoised with Fibromyalgia 12 years ago after years of seeing different doctors. I was finally see a Rhemotologist but it would take months to get an appt and I would wait 5-6 hours to see him in the office. I finally gave up ans was referred to a pain specialist. I would only see his PA and he would listen and we ried several combinations of medications until we found the right combination. Well the PA left and now I'm seeing the doctor. He's also way in a rush and I feel he's not listening to me. The current medication that I've been taking is working but at this time I'm have breakthrough pain or something else is going on because I can't get out of bed somedays. The pain specialist put me on a steroid pack which I explained to him that I can't take because they make me ill. He insisted, so I took 3 doses and becan very sick. I called my PCP and he gave me the same thing. I left the office and called my pain specialist and he prescribed 4 pills used to treat cancer patients. He told me to take all 4 pills at aonce and call back next week to see how it worked. I'm not taking it. I don't know what to do. I've stopped taking my pain meds all together becuase they were no helping me. So her it is on Mothers Day and I can't enjoy my family because the doctors are not listening to me. I think tomorrowI will find a new doctor.

re: why can't they find out what s wrong with me?
cherie
Thursday, May 14, 2009 at 07:40 PM

It is difficult enough to be in pain or feeling sick all of the time. Then we have doctors that just go thru the motions, plus we have to get to their office, wait in the waiting room then wait in the exam room and try to explain what we feel to try and make someone understand something they can't possibly understand unless they feel it. Then of course we look fine on the outside so that makes it even more difficult for others to understand. I have been dealing with chronic pain for 30 years. It took 22 years to find a complete diagnosis. So at least most of my doctors don't think it's all in my head anymore (although there are still some that don't believe fibro is real). It is so important to find a doctor that is at least empathetic. If it takes changing doctors every 6 mos to a year so be it. You must find a doctor that will work with you because there is so little they can do. If a doctor's ego gets in the way that doctor will shrug you off because they don't like to feel helpless or not have an answer. Run from this type of doctor. Try different meds but again listen to your own body. If you don't feel right on a particular med don't continue to take it. Doctor's like to say just keep taking it, it takes a while to work because they don't know what else to try. Many immune disorders make patients very sensitive to meds. Be strong in yourself and trust yourself, even if no one else understands you must do what is right for you.

Good luck all .... chronic pain sufferers have been dealt a lousy hand.

re: re: why can't they find out what s wrong with me?
mustbehope
Monday, May 18, 2009 at 02:42 AM
Hi Cherie, I agree with you 100%. It is bad enough to suffer with these horrible diseases and life with pain beyond anyone's comprehension 24/7, but then to be treated as a second class patient (probably drug-seeking) or a pain-free psycho looking for attention/drugs. It bothers me too when I have to sit for 45 minutes in uncomfortable chairs in their reception area, then sit on the edge of a gurney until the doctor comes in 30 minutes later--what's the point? Just the visit itself leaves me in greatly increased pain for several days afterward. There just has to be a better approach--I'm trying to change doctors and have found a pain specialist who was disabled due to a severe back injury, but is now functional. I would think that he might be empathetic, but I've given up expecting anything from these characters. Best of luck to all of you, Elaine

went thru the same thing
edith
Monday, May 25, 2009 at 12:32 AM

hi tami im edith and it sounds like u have fibromyalgia! reason is i went thru the same thing 4yrs of diff docs and i finally found a doc a rhuema that has helped me. dont give up god know how hard it is for us and have hope. pls msg me and ill tell u my storie u wont believe and i need a friend who i can relate to god bless u ...

re: went thru the same thing
c21tamit
Tuesday, May 26, 2009 at 04:04 PM

Hi edith,

I'm saddened to hear you went through this for so long. Not only for what you had to deal with but also because it scares me that this is going to take a long time to get some answers.

I hope you are having a better day.

Tami

Untitled Comment
lgh426
Thursday, May 28, 2009 at 12:02 PM

Why don't they think it's fibro? Too easy? Do you fit the DX for fibro? Go see another Rhum. that is a spec. in FM. Call and ask if they have a doctor in the group that is a specialist in FM and make your appt. with that particular dr. for another opinion (I know, another doctor), but you gotta do it. Good luck, I'll keep you in my prayers.

lgh426