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seeking1

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I just joined today. I have not been diagnosed with fibro, but I suspect that is what I'm dealing with, so I am trying to learn more from the patient perspective as the clinical descriptions are all the same. Over the last several years I have had a hysterectomy and pelvic prolapse repairs, I have been diagnosed with interstitial cystitis, which my research says is either a sister disease of or a subset of fibro. I was also diagnosed with supra ventricular tachycardia that I had to have corrected via cardiac ablation. Needless to say this has all clouded matters. I'm hoping to find out something soon. At least then I'll have a place to start when planning treatments.
 

1sweed

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seeking1,
The first thing I would suggest is you try and get a appointment with a rheumatologist. However, when you go don't tell him what you think you have, as these types of doctors have very big ego's and they like to do the diagnosising. Also if the doctor puts it in your records what you think you might have it follows you for life and makes it hard for any doctor to take you seriously.

I have interstitial cystitis and it can be very painful. Some people with fibro have it, but lots of people who don't have fibro suffer with it as well. One thing to always remember just because you may or may not have fibro, does not mean that every symptom you get is related to fibro, you can get other diseases as well. If you only thing of fibro when new things crop up you will put yourself in a dangerous spot if the new symptom is something totally different and needs attention right away.

Find a good family doctor as well. One who listens to you and is open minded and willing to help you find the proper diagnosis. Good Luck!
Also welcome to the forum. I hope that by reading the posts you will find new coping skills and new friends as well. :)
 

seeking1

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Thanks for the reply 1sweed. I plan on setting an appointment with my primary doc soon. Between the general achiness, joint stiffness, headaches, and lack of energy, I have to do something. I have a pretty physical job, and by the time I get home I'm so wiped, I have to push myself just to make dinner. I'm just trying to figure out the best way to present my symptoms without being made to feel as if I'm "making things up". I'be already been down that road prior to my hysterectomy/hydrodistention. I know there are multiple things that can be tired to my symptoms, so I'm not certain that fibro is what I'm dealing with, but I think it's the most likely.
 

Whyfor

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I know the feeling of fear when you've got this crazy sounding list of issues, and you don't know where to turn. The best suggestion I can give you is to sit down and make a list of all of your symptoms. Then, take this list and try to pin it down to the most debilitating symptoms. It can help streamline a doctor's appointment, and help them figure out where to start. You do need to see a good Rheumy so that s/he can best guide you, because they will likely want to do a lot of new tests (and maybe some re-tests of things you've had done in the past) first, just to make sure your issues are not linked with a different autoimmune disease.

If you find a good doctor, they will be happy to help you figure this out. Fibromyalgia has a very high co-morbidity with other conditions, like the ones you described, and believe it or not, you might find your diagnosis to be easier than many because of your aforementioned conditions (sad, I know).

Regardless, I wish you the best of luck, Seeking!
 
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