Anyone else feel like people don't think Fibromyalgia is real?

Yes, ignore ppl that dismiss fibro. Finally drs are believing it and there are studies for how to help. I get you. Me, ditto w that, RA, lupus, ddd, and stenosis. Many treatments and surgeries. Many. Have pain pump , and SCS. Having Nala trial next wk. will have 3 implants . Bionic then I guess lol. Fibromyalgia is REAL Sleep is awful. Hang in there. I have best hubby ever . Dealing w this 40 of our 49 yrs. Hope you have support

Sorry you've had to put up with this but it's not uncommon. In the middle of a nasty fibro flare shortly after being diagnosed while with my extended family, I had to listen to my brother and others tell me that it was a made-up disease and it was just for crazy women and crap like that. I can tell you that one of the best things that I have done to lessen my symptoms is to get off. Gluten. Doesn't work for everybody but it works for an awful lot of people with fibro. After being off it for about 10 years and still having some breakthrough issues I found out about fodmaps, and how people with FODMAP sensitivities have a lot of issues that are very similar to what I deal with with my fibro. That's a lot more complicated to figure out what foods affect you, but I found an enzyme combination that a company sells and now I just take it with everything I eat and I can eat small amounts of bread and things like that with gluten again as long as I use the enzymes.

Bottom line though is that you and I and a whole bunch of other people know it's not made up. And it's not a catch-all. It's real and it sucks. I read a report a few years ago that a university in England did determined that people with fibro have nearly a third more nerve endings than other people which could account for the pain. I also read another study that said, if you have fibro you probably have IBS and there is now some thinking and some research looking into whether they're actually the same thing just attacking a different part of the body.

@kelep very interesting! Yes I have IBS. Actually have had IBS symptoms since I was a child, probably even as a baby. I’m 67, that’s a long time and so tired of how it affects my life (of course that’s besides the other fibromyalgia symptoms). May I please ask what the combination of enzymes is and the company name?

@kselliott22
I agree - I would not say a word about fibromyalgia. Let the ortho do some work to try to figure it out and come up with something that will help. If you say fibromyalgia, he will stop listening right then and dismiss your concerns.

To Kseliott22 from @joy79 First of all , Fibromyalgia is real. I am going on 80. I was diagnosed in1989. It took me this long to gather a diagnosis because I began to think it wasn’t fibro. I had different doctors for it but they really did not know what to do, or they wouldn’t admit it. I started asking around about the syndrome to others. I do have a lot of pain, soreness like I am bruised all over. You need to check with a Doctor of Rheumatology. They can take blood or any other test that they feel is necessary. Yes, it is embarrassing to say the word,”fibromyalgia “. I checked the
doctors on line in rheumatology and read about them. I found one that was interested in autoimmune disease because of his family had those problems. I am now seeing him and he listens to you and ask a lot of questions. He drawed blood and did X-rays of my hands. I have a lot of crazy symptoms and now they make since. I soon will get my results of the blood work and can’t wait.

@lylii
That is unfortunate, but I am seeing the wisdom in just sharing the symptoms. Thank you!!

@joy79

This is all very helpful and confirms the experiences I am having. Lost my chiro to retirement and struggling to find someone who can alleviate some of the joint aches associated with my back issues (which are evident on x-ray) What I can't prove to my local medical professionals is the brain fog, restless leg, joint pain, and inability to get good sleep or the fatigue roller coaster. Hearing stories of others (many of you have much more serious symptoms) at least makes me not feel crazy. I function most of the time pretty well, but I know I shouldn't hurt like this for my age and how active I try to be. I feel a lot like the "tin man" and once I get moving, it is better, but sometimes it takes a while. Appreciate all of you

@katdreyer

Thanks for encouragement and sorry for late reply. My wife is very supportive

Yes it is common with all "unseen illnesses and disabilities" I have Autism, Fibro, Depression, Anxiety, C-PTSD, and Borderline Personality Disorder. I once had someone say to me "You don't look Autistic" I didn't know if I wanted to bang my head against the wall or slap him. Fortunately for me, I decided against violence. I sent my parents two articles last week about the pain and exhaustion from Fibro. They are "boomers" (no disrespect ) who think you go to work sick, if you're in pain, you ignore it, if you have a migraine (which I get) you go to work and ignore the migraine, you don't take time off from work for a Doctor(they seem to forget a majority of jobs start before a Doctor's office opens and ends after it closes) and push thru any pain you have. Despite the fact that I told them that our original family doctor once told me, you never go to work sick. You won't get better because you're not resting, you're gonna get everyone else sick, and then once you start to feel better, you'll get sick again because you came to work sick. They never replied so I know once they saw what it was about, they deleted the emails. My two cents on what doctor to believe: I'd never trust a chiropractor over Mayo (but that's me) They are the best hospital in the world.

@kjs831

I agree in the chiropractor and relying on them to treat fibro. My experience is they are skeptical of the diagnosis. I just had good luck getting some relief in other areas where I needed them. The one chiro who seemed to understand Fibro suggested taking small doses of cattle wormer. I thought that was a little too risky, but appreciated the support. Thank you for your share.

I also agree that Mayo is the best. I feel like once they sent me to their Fibro clinic, I realized I wasn't crazy.