NFA QuestionsCategory: QuestionsIs this normal at the early stages of treatment?
Beth asked 2 years ago

I am recently diagnosed with Fibro (probably been coping with it for about 19 years now).  I have heard that my rheumatologist likes to keep testing and drag out making a diagnosis.  He was fairly quick with my diagnosis, but I have been returning to see him every 6 weeks for about the past year now.  During these appointments he reviews my record aloud covering all the tests and determinations made, asks how things are going, and then tests the “specific trigger points” to measure how I’m doing in the moment.  He never checks the other pain areas that I tell him are really making my life miserable at the moment because they happen to be off his standard trigger point map.  He might make a small change to amount of vitamins or order a blood tests to check levels of something, but otherwise I’m just told to return in 6 weeks.  Are we going to do this forever?

10 Answers
Staci answered 2 years ago

I had the same experience. After a year, I’m embarrassed to admit I waited that long, I ditched the rheumatologist and found better help from a neurologist. If nothing else, seek another opinion.

lisa milne answered 2 years ago

You decide how often to go. Now, if you’re taking meds, the practice may have certain rules about frequency. If you don’t want to just stop, next time bring a written agenda of YOUR questions, and give it to the nurse right away (keep your copy). Ask why he thinks you need to come every 6 weeks when you have a diagnosis and a treatment plan that doesn’t help, as you mentioned pain; when will he refer you to pain management; and because fibro for me is managing symptoms and co-morbidities since we have no cure, I arranged for my PCP to help me and refer if necessary. Many good groups on FB and information online. Good luck! p.s. if you can’t be somewhat confrontational, take a friend who is.

Sharon answered 2 years ago

No, your rheumatologist should be paying attention to ALL your areas of pain and not just the trigger points. There could be other issues besides just the fibromyalgia going on.

Pat answered 2 years ago

No. You need to take charge and find what works best for you. There is no treatment plan, join a fibromyalgia group or two to get info on what others are doing for self care. This doctor is a moron.

LJ Fischer answered 2 years ago

The last Rheumatologist I saw indicated I have fibromyalgia and I need to accept that and he had nothing that could help me. I told him “thank you for your honesty and I will not be back unless there is something new going on.” He agreed. I dont have to waste my deductible every 6 months to hear the same thing. The 18 point pain areas is no longer the standard tool to diagnose fibromyalgia. I have walked almost every avenue to hear that Fibromyalgia is the diagnosis. 4 Rheumatologists, many primary docs, and a two pain specialists. There is a blood test now that can verify the diagnosis, may want to ask about that. Other things are to get an MRI of your brain to rule out MS. Get a blood test for lyme disease. See a allergist. Blood test for Lupus.  Do research. Ask for those things.

Becky C answered 2 years ago

Yes it is usual.  I went and found a doctor who cared about taking the time to hear my story of the pain I was in.  He gave me the appropriate meds.  One thing I found that really helped me was Savella along with Gabapentin.  It made a huge difference

Tifney answered 2 years ago

6 weeks? I barely saw an OBGYN every 6. No never that much now that I am somewhat stable, every 6 months. In a flare or while diagnosing maybe 3 months. I see a rheumatologist only and I also have other issues with autoimmune diseases such as rheumatoid arthritis. Talk about similar issues such as meds, diet, supplements.

Carissa Simao answered 2 years ago

My question would be “is he prescribing anything?” I went through about 2 years of different medication trials. Try this antidepressant, this SSNI. Lyrica, nortryptaline, and do many others I can’t even remember. But if all he’s doing is checking your tender points (which as far as I know is only for diagnosis, not a measure of progression or anything, but I could be wrong) and telling you to take vitamins, I would find another doctor.
Fibromyalgia can be treated without medicine in some cases, but a lot of the time, you need something, whether it’s something you take every day (I take Savella and gabapentin) or pain relief (just muscle relaxers for me, but I have been on Norco in the past. Avoiding narcotics as I’m still fairly young), you’re doctor should be addressing your pain. If you don’t feel he is, you should find a new one.
It took me over 15 years to finally find one that listened to me. They are out there and it goes a long way too be proactive in your own health. Do research, ask questions. Don’t just accept what your doctor says. If something feels wrong, speak up. If you don’t like something, speak up. It’s your body. You have the right to take care of it how you feel is best.

Shi answered 2 years ago

I finally asked my doctor if there wasnt much more he could do can we make these appts every six months.  He agreed.

Jessica answered 2 years ago

Try seeing a neurologist or getting into a pain clinic. That said, yes. It can take years to get a diagnosis of Fibromyalgia since it’s basically process of elimination. I felt like I gave gallons of blood for every test imaginable, and the only doctor who provided any actual pain relief was my physical therapist. The upside is now I have no problem with blood draws. Hang in there!!!