Getting a Diagnosis

[razzles]

I am currently going through the diagnosis process for seemingly unexplainable pain. My doctor just recommended me to a rheumatologist because he is unable to do more for me at this time. He suspects it may be fibromyalgia or something related as far as I can understand. I guess I'm just a bit scared and don't have an off line support system to turn to at the moment as this is all rather new. I don't really know what I am looking for in posting but I have to get this out and maybe hear some stories about how it all works.

I guess the unknown is what bothers me. I know once I get a diagnosis then I can make changes to help ease the pain. But it is still frightening to face. 

Thanks for listening.

[Deleted]

Hi, sorry to meet you here.

Limbo is a hard place to be, I'm sorry you find yourself here with a lot of us.

I hope you get some answers soon.

[wowhead]

Hugs! Not knowing is the worst. I hate that you have to join us but all the girls here are amazing.

I hope you get some answers soon.

[razzles]

Thanks for the kind words calamity and wowhead. I hope that limbo does end soon so that I can start moving in a direction rather than hanging out wondering what I can do. At least I have a doctor who is working to find out answers which I understand can be a huge starting point.

[kirra]

Limbo is hard.

If you do get a fibro diagnosis, please keep your mind open to other possibilities. Fibromyalgia is a diagnosis of exclusion, and while it absolutely has its place (you have to have a diagnosis for your insurance to treat symptoms) it can miss the right diagnosis.

Between 70 and 90% of women with my genetic disorder (Ehlers danlos syndrome) are diagnosed with fibro an average of 10 years before they get the correct EDS diagnosis. My rheumatologist said "We're trained to treat autoimmune connective tissue diseases, not generic connective tissue disorders."

[razzles]

carrotsmakemefat Some of my other symptoms include severe fatigue and problems sleeping, difficulties concentrating and remembering, and I'm pretty much swollen all over. I was diagnosed with carpal tunnel syndrome almost 10 years ago while I was in high school. I have pretty severe lower abdominal cramps that I thought were related to cysts but there hasn't been the typical signs of those. Sometimes my hands and feet get tingly like when they fall asleep at odd times when they shouldn't. That is all I can think of at the moment.

kirra I will keep other possibilities in mind, definitely. I would just like to have a starting point for making changes and getting some relief. I haven't been able to walk normally for over a year now. I just want to start understanding my new life and hopefully find some answers. Thanks for reminding me not to just accept the first answer though.

[Deleted]

razzles I can relate to so much you said, from the night time issues to walking normally.  Mine comes and goes in spurts.

I was having luck with Cymbalta but not at the moment. 

I hope you are able to get answers soon.  (hug2)

[Deleted]

razzles how are you feeling? Any answers yet?

[razzles]

calamity I don't have any answers yet. One doctor thinks fibro and the rheumatologist is leaning towards rheumatoid arthritis. I get my test results back next week when I see the rheumatologist again so hopefully I find something out then. I am doing better which is nice but I hated the cortisone shot that I was given. Going through those side effects were worse than the pain so at least it was something different! Thanks for asking. 

[Deleted]

Apr 21, 2015 16:12:43 GMT -5 razzles said:

I hated the cortisone shot that I was given. Going through those side effects were worse than the pain so at least it was something different! Thanks for asking. 

I hated the cortisone shot too, and it did crap for me.

I am glad you are feeling a little better and I hope you can get some answers soon!

My bloodwork said I have a high RA factor, but they never went further than that.  What testing did they do?

[razzles]

Apr 22, 2015 7:17:03 GMT -5 calamity said:

I hated the cortisone shot too, and it did crap for me.

I am glad you are feeling a little better and I hope you can get some answers soon!

My bloodwork said I have a high RA factor, but they never went further than that.  What testing did they do?

I don't know what all of the tests mean but according to my order form they ran a CRP, ESR, Vitamin D, Rheumatoid Factor, CCP Antibody, ANA, C3, C4, HLA-B27 Antigen, Anciotensin Converting Enzyme and SPEP with reflex to IFE if any of those mean anything to you. I figured that I would understand better when she was talking to me about the results later.

[razzles]

I wanted to give a quick update. I haven't been diagnosed with anything since my blood work so far keeps coming back as normal in all aspects. The rheumatologist is still sticking with her idea of rheumatoid arthritis so we shall see I suppose. I am supposed to start taking naproxen twice daily but I don't feel like that will help the underlying cause but I guess I will find out.

[Deleted]

razzles

Our symptoms sound so familiar. I've been on this shitty ride for 2 years now. UGH.

I hope the Naproxen magically fixes everything.

It's so frustrating to know something is wrong but to not be able to figure out the cause ((hugs))