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New here..24 years and need help!

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Posted 4/9/2012 9:45 PM (GMT 0)
Hey all!
I've been dealing with a handful of medical problems for almost 2 years now. I have been diagnosed with Interstitial cystitis (bladder disease), Arthritis (questionable) as well as a mild case of fibromyalgia.
I am desperate for answers and I'm just not getting them. I feel like I've been to every specialist and had every test done and don't have the answers I am looking for.
The main issue I'm having right now is shoulder pain in both shoulders. I'm currently in a 3 week flare that has me up 5 times a night literally screaming as it feels like my arms are being pulled out of my shoulder joints. The pain is much more painful at night or at rest. 2 docs I've seen say arthritis and 3 docs say it's not arthritis and they're unsure of what it is. I am waiting to see a orthopedic surgeon and hoping for answers. My rheumatologist says it's arthritis and fibro by my family doc doesn't agree and neither do the pain clinic docs. I am always exhausted but can't seem to sleep due to pain.
Regardless, It is literally ruining my life. I have 2 young sons and a husband. I am a professional photographer and I can barely work at the moment. I feel like I am getting completely mixed diagnosis' and don't know where to go from here. I was in a car accident May 2010 and I believe that most of my symptoms began after that. I don't remember any previous shoulder injuries although I have been hard on them in the past with sports etc...
I really hope some of you can give me some insight on where to go from here! I don't know where to turn and I'm not coping with this pain any longer....heat, ice , baths , rubs, topicals and painkillers aren't helping. What do I do from here?
Thank you so much for taking the time to read this :)
Posted 4/9/2012 10:29 PM (GMT 0)
Hi MissLyss,

Welcome to the fibromyalgia forum and do I ever have a good thread for you. It is the second thread on the forum and it is titled "fibro 101". You will find so many answers there. Most of my pain is in my shoulders and neck, though I do have pain in my hips and legs. And the chronic fatigue. So I know how you feel. Pain pills do help me. But I still have pain. I think we will always have a little anyway. But we can get it down to a minimum.

I hope that you feel better soon. I hope that you continue to post. You will find that there are a ton of wonderful people here on this forum. Keep posting.

Hugs, Karen
Posted 4/9/2012 10:46 PM (GMT 0)
Hello MissLyss,

I really feel for you. Unfortunately, I can't offer more advice than Karen has already given you, but my family has been somewhat cursed as far as pain, so I have empathy.

My brother was in a car accident 20 years ago, and shortly afterward started having a chronic, absolutely all-the-time headache. It varies in degree, but it's always there. He has tried everything, from accupuncture and massage to every drug known to man to neck surgery to shots in the temples. The ONLY thing that brings it down to a dull roar is Methadone, unfortunately.

You are so young to be saddled with this! I sincerely hope you find some answers soon.

Debbie
Posted 4/10/2012 1:19 AM (GMT 0)
Welcome misslyss- it sounds like you have every reason wondering if you have fibro. You have mention so many symptoms of fibro already. The Dr. That gave you fibro diagnoses is probably right. I would try to find Dr's that support you in your diagnoses. I would go see the ortho Dr. Just to make sure you don't have any tears in your shoulder cuff or something else. Once you find out the results I would concentrate on working with your rheumy Dr. getting a treatment plan for your fibro if that what you decided you have. Do you have pain all over or one specific area? Is your body achy when you get up in the morning. Continue to read other post and see if some of the things sound familiar that others are going through. This is how I put the puzzle together for myself. I had to educate my Dr's on what I learned from here. Feel free to ask questions.
Posted 4/10/2012 1:08 PM (GMT 0)
Hi, MissLyss, and welcome!  I'm so glad you found us and joined in.  Well, my opinion is that I would go with what the rheumatologist said.  You could have arthritis AND fibro, too.  I do.  For years  (25 to be exact) I've been dealing with excrutiating back pain and put it off to fibromyalgia.  Nope.  I went to a rheumy for the first time a couple of months ago.  After a bazillion x-rays, many vials of blood work, and two MRI's I was diagnosed with ankylosing spondylitis.  It's a rheumatic disease.  The blood work showed high levels of inflammation and fibro is NOT an inflammatory illness!  Yes, I still have fibro but I have AS, too.  These things are treated differently.  If you really aren't sure, you might want to see another rheumy for a second opinion.  I'm not doing that because the rheumy I chose is excellent and thorough and I value his diagnosis.   

 

Be sure to read Fibro 101...the second thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Good starting links are called Symptoms and A Thorough Explanation of Fibromyalgia. 

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine

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