Doctors uncertain - I am pretty certain - Help?

[EHPrybylski]

As I said in my introductory post... I am pretty sure I have fibromyalgia, and family friends with it have all nodded and told me that it makes sense. Unfortunately my doctors haven't been able to officially diagnose it for... whatever reason. I don't know why.

My symptoms are consistent with fibro:

*Lack of ability to sleep and/or sleeping too much
*Constant and severe pain
*"Trigger points" in various locations around my body
*Tests for other injuries, illnesses, and so on have all come back negative
*Stress exacerbates it, and I have anxiety/depression/PTSD (huzzah)

I have had nerve conduction tests, physical therapy, MRI, CT, X-Rays, functional capacity tests (which I failed spectacularly)... Nothing is coming back conclusive. While my current doctor is being incredibly kind, my previous physicians snubbed me or treated me like I was lying. Then, when I asked them for something for pain, they treated me like a drug addict. It is infuriating to be treated like that. And painful.

Is there anything I should do, say, or otherwise discuss with my doctor? Is there a test they can do that I can suggest? Help?

 

[kmpisces]

It does sound that you could very well have FMS. A lot of times it is diagnosed after other conditions have been ruled out. I would keep talking to your doctor about this. Ask to be sent for another opinion if you need to.

 

[EHPrybylski]

Thank you KMPisces. I appreciate it. I will keep asking. Are there any specific questions I should ask or tests I should ask about?

 

[EHPrybylski]

I have had an MRI of my lower spine and it came back normal. My first thought was that I had injured myself (I had a serious fall while waterskiing), but the CT, MRI and x-ray showed no signs of damage. That's a thing I am grateful for, but nothing else has really been done. I'll look to see about the disease you suggested. Maybe it will have an answer. I definitely have siatica, and numbness and pain in my legs, and I sustained a rather serious back injury after a bad fall several years ago, so... That's definitely worth looking into. Thank you!

 

[dorann]

I know that the journey to learning whether or not you have fibro isn't a very fun journey. In fact, it seems like the only way to diagnose fibro is to rule out all other possibilities. I'm glad to hear that you now have a doctor that is pretty understanding. I think one of the most important things is to have a doctor that will be your advocate instead of viewing you like a drug seeker.

 

[EHPrybylski]

My doctor currently is acting as an advocate - it's definitely a help. He's working with my lawyer since I'm trying to get on Disability due to the fact that I can't really do a whole lot. It's pretty miserable, honestly. :/

 

[Trellum]

All I can say is... hang in there! Getting the right diagnosis sometimes takes a lot time. If you are 100% confident your doctor is really good, then you should really try to research even more on your own and guide your doctor thru the right path. Seriously, most doctors nowadays need a little push. Remember they are human as well and might have a lot things in their mind, so doing some research on your own will surely help you to find the right answer!

If you don't really trust your doctor, then I advice you to find another one. I know isn't easy, but this is something you have to do sooner or later if you are really worried about your health. Best of luck and keep us posted!

 

[EHPrybylski]

I trust my doctor, and I trust his intentions. Plus... I have charitable care through his network, so he's really all I have. However I think I can probably nudge him that way. I've been researching the heck out if fibromyalgia, and it seems like it makes sense for everything I have. And I've had tests to rule out everything else (rheumatoid arthritis, lyme disease, all of that nonsense). So it really appears to be the only plausible answer, much to my great frustration.

Thanks for the support, Trellum. I really appreciate it. It's a long and difficult road, isn't it. :/