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Old 08-25-2007, 04:22 PM   #1
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Help w/dealing w/Dr Please - Lupus & Fibromyalgia

I was diagnosed with Lupus back in the late '80s. I had positive ANA and all of the other criteria. My old Dr just disappeared earlier this year and I had to find a new Rheumie to get my prescriptions filled. My former Dr had been running tests and my ANA has been negative for a few years, but I have still had flares. I have also been told I have Fibromyalgia now. The new Dr. tells me that I don't have lupus anymore. Has anyone else ever had this happen?

I am going to new Dr in October, but I am so angry after reading his office notes. He is treating me like there is nothing wrong with me and told me to go to a pain management clinic. HELLO.....

 
Old 08-26-2007, 06:27 AM   #2
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Re: Help w/dealing w/Dr Please - Lupus & Fibromyalgia

Hi, i've not been told that, but I have been told I also have Fibromyalgia. However, I had a real bad flare a few yrs ago. My rheumy put me on Bextra first, which worked pretty well, then it got pulled from the market so I had to stop it. About a week later my flare came back. It got worse & worse, so he tried Mobic first, didnt work, then Relafen, didnt work. By now I could hardly move at all and he put me on Prednisone (this was the 1st time in my life id ever taken this)...and suddenly within about a week on 40mg per day, all my pain & symptoms started going away, including all my muscle pains & fatigue. The pred. comletely eradicated every symptom I had & I hadnt felt that great in a long time. Odd thing is, I keep reading on medical sites that prednisone makes Fibromyalgia worse , it's like fibro's enemy. So I am wondering if I even have Fibro. On top of the fibro diagnosis, he did diagnose me with lupus, but now I'm starting to wonder about it all. Also, this "it's all in your head" or "it's stress" seems to be all too common from doctors who don't know whats wrong. I hear this time & time again, and I've also heard it myself in the past. It just seems theres alot of doctors who dont' really want to help or bother trying to find the problem. Then again, I bet the insurance companies have something to do with it.

 
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Old 08-26-2007, 07:31 AM   #3
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Re: Help w/dealing w/Dr Please - Lupus & Fibromyalgia

I was thinking the insurance cos might have something to do with it also. Blood tests are expensive and so are prescriptions. I have quit taking the Plaquenil that I have been on for the past 10+ years and am cutting my prednisone out. If I don't need it, great! It will save me money. If I do need it, we'll find out. The only problem I am having at this point is I can't fall asleep, even with all of the other meds I am taking and I wake up sore. Only time will tell...

Hopefully the new Dr. won't be such an uncaring robot.

 
Old 08-26-2007, 07:43 AM   #4
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Re: Help w/dealing w/Dr Please - Lupus & Fibromyalgia

My rheumy had also given my Elavil (which I find out now is used for fibromyalgia)...it didnt help any with my joints, muscle pains, or fatigue, but it DID help me sleep! It was like having a non-addictive sleeping pill for me. It was a low dose pill that I was to take once per evening. I would totally zonk out about an hour after taking it. For me, that was the only good thing about it. Have you ever tried this med?

 
Old 08-26-2007, 10:05 AM   #5
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Re: Help w/dealing w/Dr Please - Lupus & Fibromyalgia

Not yet, but I am waiting to see the new doc in October. I have discovered I have more energy not taking the Plaquenil. I didn't realize it was making me tired. Sometimes I wonder if the cure isn't worse than the disease!

 
Old 08-26-2007, 10:38 AM   #6
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Re: Help w/dealing w/Dr Please - Lupus & Fibromyalgia

Yeah, sometimes, unfortunately, the treatments are worse than the disease. Especially with prednisone, it can work miracles, but if taken long term, it can cause so many other serious problems.

 
Old 08-27-2007, 07:12 PM   #7
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Re: Help w/dealing w/Dr Please - Lupus & Fibromyalgia

Hi Marykay,

I just recently posted with a similar issue. I was diagnosed with fibromyalgia over three years ago. When going for routine exams my bloodwork came back normal except I always had a high sed. rate. About six months ago my health started to go down the tubes. I quit a horrible job and then a couple of months later had to get my gallbladder removed.

I had all the rheumatic tests done again and came back with a high ANA, positive Anti-LA, Anti-Ro, Rheumatoid Factor, etc. My hair has been thinning, I had mouth sores, a rash on my face and extremely painful joints. My Rheumie diagnosed me with Lupus in May and put me on Plaquenil.

I had to switch Primaries and went to see a new Rheumie this month. She briefly read my labs and felt I did not have Lupus but probably have some kind of connective tissue disease, etc. and blah, blah, blah. All the pain was from the Fibro, etc. The rash was probably Rosacea. There is no swelling so it can't be arthritis. She was also very rude and I decided I did not want to see her again.

I decided to switch to another Rheumie and will hopefully get some answers in October. You may want to consider finding another Rheumatologist, someone that could be recommended. I can't imagine being diagnosed with Lupus and being treated for it for years and to have someone tell me I never had it. I would definitely seek another opinion. You deserve to have some kind of validation one way or the other.

I wish you the best. Please keep us posted as to how everything goes!

 
Old 08-27-2007, 07:29 PM   #8
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Re: Help w/dealing w/Dr Please - Lupus & Fibromyalgia

Angie,

Your story sounds exactly like mine! I was shoved out the door because of too many sick days. I would catch absolutely everything that went around the building and be sick for days. I am currently unemployed and my DH decided he wanted a divorce.

Finding this board in the past few days has been a Godsend. I don't feel so alone anymore.

Thanks to everyone who replied.

Mary Kay

 
Old 08-28-2007, 05:04 PM   #9
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Re: Help w/dealing w/Dr Please - Lupus & Fibromyalgia

Mary Kay,

I have truly learned so much from this board. I was unemployed from December to June of this year and the stress was wreaking havoc on me and the feelings I felt about deciding to "resign" instead of being fired just made me doubt myself like I never had before. I think it can be so challenging when you feel so sick and don't know what to do to feel better and you have people that don't understand.

Finding the right doctor for you is all that matters. The rheumatologist is saw earlier this month said that even if I had Lupus it was probably mild. Does that mean I should say, "Ho Hum. I don't need to treat this?" Well, "Ho Hum" I won't be seeing her again. Even if you never had Lupus, you have something(s) that cannot be ignored or downplayed. I cannot see how you would be so sick and it only be Fibro.

Keep us posted and hang in there. My prayers are with you that you get the help you deserve in October!

 
Old 09-02-2007, 01:05 PM   #10
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Re: Help w/dealing w/Dr Please - Lupus & Fibromyalgia

Well, my experiment of quitting my Plaquenil failed miserably. I broke out with mouth sores (everywhere), glands swelled up, started running fevers, felt fatigued, have brain fog and hands and wrists swelled up. Do you suppose that will be convincing enough for my current doc?

I have to say I am a little disappointed as I was hoping it was gone. At least I know not to quit taking meds based on someone's hunch.

Thanks for all of your support. On to the new Rheumie.

Mary Kay

Last edited by marykay55; 09-04-2007 at 07:37 AM. Reason: spelling

 
Old 09-03-2007, 06:02 PM   #11
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Re: Help w/dealing w/Dr Please - Lupus & Fibromyalgia

Marykay,

If your current doctor isn't convinced that you have Lupus, I would be shocked. I just wish you didn't have to go through that just to prove that it isn't "just the Fibro!"

I hope you start to feel better and that you get the support you deserve!

 
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