Waiting to Know

  • Posted on May 26, 2014 at 10:00 AM

So, I went to see the rheumatologist. On the one hand, she could confirm that all of my symptoms are consistent with fibromyalgia. On the other hand, she told me that fibromyalgia is only diagnosed when all other alternatives are exhausted. Now, I’d thought I’d been through that already. When I first went in to see my regular doctor with my symptoms – before they’d gotten worse – he had the lab draw a lot of blood and run a lot of tests. Apparently, the rheumatologist knew more tests that should be run before a diagnosis of fibromyalgia could be confirmed.

I did quite a lot of research, so I was rather surprised when she started listing off possibilities that I’d never heard of or never considered. Ironically, while some of these possibilities seem a lot scarier than fibromyalgia, she was adamant that all of them are considerably more treatable than fibromyalgia and any one of them would be a better alternative that settling for an inaccurate fibromyalgia diagnosis. She reinforced this idea by telling me that she wouldn’t be upping my dosage for the drug my regular doctor had prescribed, because the improvement I was seeing was “as good as it gets.” She did, however, prescribe an additional medication to help my muscles relax enough so I could sleep better. Perhaps the fact that this new medication has only had marginal results is indicative that she might be onto something. I also learned that I already have some arthritis, which may be why rheumatoid arthritis came up as a possibility.

So, not only did she have the lab draw even more blood for even more tests, she also had me go in for an X-ray. To top it off, I’ll be having a sleep study done in the middle of June. (I wonder what will happen if I can’t sleep for them during the study.)

It will be another month before I see her again and see what all of this means. Will it be fibromyalgia or will I be researching something new? Will I get a treatment plan or is this really “as good as it gets?” Personally, I’m inclined to hold out for something better, particularly when it comes to the concentration factor.

2 Comments on Waiting to Know

  1. Hiya-This sounds verrrry familiar. I was finally diagnosed with rheumatoid arthritis after a decade of tests and all sorts of “diagnoses” (including “problem husband” and “blocked creative energy”). As I was terrified of the dreadful meds and my dr. was pretty cool, we devised a whole bunch of stuff I could try that was less toxic and a lot of it has worked. One of those being “reduce stress” – HAHAHAHA. Anyhoo, I still have a great deal of non-joint pain we still call fibromyalgia…But I have had some improvement…If you ever want to discuss this privately, feel free to email me at jineffable@gmail.com!!! Love, FSM

  2. Stephanie says:

    Yes, I imagine this sounds familiar to a lot of people. I recently learned that I have extremely low vitamin D, which is a contributing factor. I also have arthritic pain, which is a contributing factor. Sleep issues contribute, too, but I haven’t had my sleep study yet. Still, I didn’t have any rheumatoids in my blood, so it’s not rheumatoid arthritis and none of the tests explained the full scope of my pain, so we’re back to fibromyalgia.

    I, too, have been told to “reduce stress” and “take it easy.” Um, yeah. That’s going to happen. I wouldn’t mind a more holistic approach, but I also have to be realistic. Realistically speaking, I intend to change the world and that takes work. I’m also the “bread-winner” and that takes work, too. I’m trying to increase my capacity here, not reduce my stress.

    But getting the med pros to understand that is another challenge.

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