Struggling to Get Diagnosed with Fibromyalgia

You’re not alone. I believe I have this but a specialist told me I don’t think you do. But I *really* think I do. I don’t think doctors understand it enough, so I’m scared to bring it up to other doctors bc I’ve been gaslit too much in my medical journey.

Find another doctor if you can. Personally it took a VERY long time for me to get diagnosed and even when I was diagnosed, it wasn’t anything official, my doctor kinda just dropped the term after he ruled like every other possibility out, including the run around of recommending physical therapy, manual therapy, cognitive behavioral therapy, and everything else from going outside more to exercising more. Even after telling me what it is, he still is extremely hesitant to change me to anything aside from the anti-inflammatory he has me on now (which barely works and leaves me slightly more sore when i don’t take it). My journey started at literally 8 or 9 years old with really bad back pain and until I was 13 or 14, I kept being told it was growing pains, by doctors and by my own parents/family. It just persistently got worse, pain spreading out more over my body and the back pain worsening, even being in unbareable pain when I was menstruating and having cramps. I had to do aquatherapy (didnt have any long lasting relief for me, only relief while in the water), physical therapy (no long lasting relief), manual therapy (they even tried massaging the knots in my shoulders and i couldn’t turn my head for DAYS), in physical therapy i tried E-10s (didnt change anything), ice, heat, different meds, advil/Tylenol around the clock, I’m in CBT/talk therapy, i take my vitamins, and even though I don’t go to a gym I have a job and school so I’m fairly active, yet my pain hasn’t subsided at all and I get barely any relief at all. I don’t know if it’s just because I’m a woman or not, but I was told multiple times, directly and indirectly that the pain is all in my head, that there’s nothing they “can do,” (are willing to do more like**) etcetera, so prepare for more of that, but please know that you aren’t crazy nor is it all in your head and you deserve to be taken seriously. Getting a name for it does help a lot especially mentally but it doesn’t help other doctors to be more willing and receptive to how much pain their patients are really in.

I also have the same problem. I have had unspecified diabetic neuropothy for 2 years. But all they want to do is throw neurontin or lyrica at it.

Hey, I guess your doctor isn’t used to having such young fibro patients, and maybe she wants to rule out other disorders before a fibro diagnosis. I can totally understand how frustrating that must be. Please stay strong!

@peppa I have an appointment with a rheumatologist but the soonest they could get me in isn’t until January or February

I'm sorry to hear they aren't taking your pain seriously 😥 Rheumatologists and Pain Management doctors are usually the ones to manage fibro patients, but unfortunately not all doctors believe that it's a real condition. I agree that is this doctor isn't taking you seriously, don't give up looking for one. They're out there!

I've had it since I was 9 after surviving meningitis for the 2nd time. If you're "too young" to be in pain then obviously something is wrong. Tell them to either run tests or put in your chart that they are refusing to address the issue. If they refuse tests, find a new Dr.

I'm with @AlwaysinPain82, find another doctor

Go find another doctor. You need a pain management physician specifically. Also, fibromyalgia dxs are almost guaranteed to get you labelled as a "head case", especially if you're a woman. Just tell your PM doctor your symptoms and whatever you do, never tell them about ANY childhood abuse whatsoever because they will use it against you. Your childhood was always perfect. Our healthcare and pain care is in a sad state of affairs in the US, unfortunately, which is why I'm part of Don't Punish Pain Rally and other organizations.