I saw her in July to see if I had an autoimmune disease or Chronic Fatigue Syndrome. Instead she told me I had fibromyalgia. Not sure if I believed her, but she put me on Gabapentin which helped with my neck and shoulder pain, but ended up causing unusual bruising. I didn't take anything for a few weeks, then started 60 mg of Cymbalta. Only been on it for a month, so hard to say how well it's working. Better than nothing, for sure. Also taking 2 - 4 mg of Valium at night to help with the TMJ.
So my question is, what should I ask her when I see her tomorrow? Last time she didn't do a pressure point exam, so I'm wondering how she came up with fibro. I'm back and forth between acceptance and denial over the diagnosis.
But my fibro was diagnosed without the 11 of 18 tenderpoint criteria. Doctors are starting to move away from it as a diagnosis tool for fibro. My tenderpoints in certain areas are always sore but in other ones, like my neck and shoulders, they alternate between being okay and very sore. But I'm still suffering overall from fibro symptoms. I just think that some of us have tighter wound muscles than others and it's hard to get them unwound enough to feel the tenderpoint pressure exerted by a doctor. At least this is true in my case in my shoulders and neck. I only mention it because I wonder if this might be true of you too.
The American College of Rheumatology recently changed the criteria for diagnosing fibromyalgia. Have a look at this article, did your exam follow along their guidelines?
I'm also wondering if your doctor did any blood work, and if she did, do you have any results? Lab tests would be necessary in order to rule out any autoimmune diseases before diagnosing FMS. Do you have any spinal problems? I ask only because you complain of neck and shoulder pain primarily, if maybe it's caused by something else.
I would ask her how she came to positively diagnose FMS. Then you can go from there with what your treatments will be, what you can expect in the future, and if there is anything you can do in addition to help your condition.
Hi Liz,
Angel’s list is great and although I didn’t read it, the rheumatologist that diagnosed me in July also used some newer criteria above and beyond the tender points so I suspect that is what Renie posted. The questions he asked had to do with more generalized areas of pain, how long they had been hurting, and there were also other very important questions about fatigue and the difficulty with concentration, organization, etc. He also asked about how much all of these issues interfered with my daily life ~ which was hugely important for me. I’ve been struggling for years with tme management, organization, concentration, fatigue and of course all the pain. The cognitive issues finally caught up to me and I was ‘dismissed’ from my job ~ aka I got fired after 12 years as a county social worker.
So I think the criteria that goes beyond the tender points is really important in confirming the diagnosis. However, for me it was also absolutely a relief as well because I finally had an explanation for all these things that had been going on in my life! I had even gotten a neuropsychological exam because I felt like I was losing IQ points!
Sorry for getting off on my own stuff & soapbox there but to bring this back to you Liz, my point was that your doc may have used some of the newer/additional criteria and you may actually find that really helpful in better understanding your cluster of symptoms. I hope that is helpful information! One other quick comment about meds. I take Nortriptyline (aka Pamelor) and it works wonders to control my pain with few side effects. I sometimes have a dry mouth, but minimal. It can cause drowsiness but I take it before bed and it’s not bad at all. When I tried Gabapentin I could hardly stay awake during the day.
Well, I was going to add something to the mix...but it looks like everyone already beat me to the punch! LOL
I would also make sure you give accurate adjectives to your pain. Just don't say your hurt at place X, say place X is a burning pain, a sharp pain or some other descriptive word to explain how you feel better.
Also, pain locations do move...so where you hurt today may or may not hurt tomorrow. Just tell her how you feel at that time, not yesterday or last week, but that moment.
Hi Liz, Everyone has added great suggestions ! The whole acceptance thing is very difficult, I won’t tell you what I said to my Dr. When she said " it sounds like fibromyalgia" lol , it’s a difficult process to get through. I can tell you all of us have traveled that road, so you are definitely not alone. Please let us know how it turns out.
Blessings & hugs
I have ADD too, so I've been blaming most of my cognitive problems on that, but I'm starting to realize some of it may be the dreaded fibrofog. If I'm doing 12 things at once and can't focus on just one, it's ADD. If I can't focus on ANYTHING, it's fibrofog.
Your post reminded me that I also have dry mouth. Rheum. gave me Salagen for that. I also stopped taking Wellbutrin to see if that would make a difference and it has, somewhat.
Just got out of the appointment. She said the fibro diagnosis is based on my symptoms and elimination of other possible causes, so it could change if they find something new. I asked about the pressure point test and she seemed impressed that I knew it wasn’t a requirement anymore, but she was willing to poke and prod me anyway and I had at least 8.
She doesn’t think I have primary Sjogrens, but it could be secondary, so she’s referring me to the dental school for possible lip biopsy - lucky me.
We’re also going to try Lyrica if/when if the insurance approves it. Right now I’m waiting at the pharmacy, then off to work I go.
Attached is a list of medications that may cause dry mouth. Antidepressants are notorious for it.
Liz, did the Rheumatologist mention Sjogren's Syndrome? Salagen is FDA Approved for only that and chemotherapy patients, last I knew, I've been fighting for it for years. They won't give it to me without the diagnosis...even though I ended up with traumatic dental surgery due to dry mouth. I would love to know how it's working for you! Also, do you get relief from the Adderall? I am ADD also, and Adderall is the only thing that keeps me functional.
I hope you feel a little better, now that you've talked to her about your concerns. I'm still wondering if she did bloodwork, because there is a test for Sjogren's, or is the salivary biopsy more conclusive? Just curious! Have a good day Liz !