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

kselliott22, Yep. I hear this alot and so I am careful who I share it with.

So many things affect Fibro and it is very misunderstood. I have heard a new med is coming out the end of the
year that has been approved by the FDA called Tonmya. It is not an opioid and is supposed to improve pain, fatigue and sleep. I cannot tolerate any of the meds given for Fibro, so basically I am on nothing except Tylenol and an occasional Flexeril. Soaking in Epsom Salts, Voltaren Gel and Heat Packs helps at times.

Praying for you. I empathize and understand. Blessings....

Thank you covidstinks2023. I am learning to limit my sharing. I recently started exercising a little and am taking prescription naproxin sodium. It has given me a little relief in my hip. Sorry you can't find much relief and hope the new medication works for you. Blessings to you as well

I don't think "they" know what to do with those of us who have invisible issues, quite frankly. I have been diagnosed with several that are very close in description: Neurology, Peripheral Neuropathy, Fibromyalgia and Restless Leg Syndrome...It/they have gotten horribly worse as I have aged (I'm 85) and I have run out of things to try. Read: They don't know what the heck to do with me! I am still on steroids and two other pain meds, but they hardly touch the pain, tingling, numbness, stabbing feeling.
I look perfectly normal for my age, even "much younger" I hear all the time. But no...I never discuss what keeps me up at night and drives me to the edge of a cliff many times a week! I play mind control games with this dreadful way I have to get through my days. And, And, AND, AND I will NOT let it win!! It's a choice I made several years ago. No crabbing or complaining about it! No pity parties. Just live the best way I choose to live.
Bright Blessings~

I had to switch to Mayo for all of my care because traditional practices don’t understand it. The science has changed a lot and I can understand why people wouldn’t believe it. I think it’s impossible to understand if you don’t have it. I went through trauma therapy to get over disappointing people b/c I can’t meet their expectations. At this point, I don’t care what other people think. The science validates this is real and my symptoms are very real. One of my drs recommended reading Let Them by Mel Robbins. It’s very helpful in this situation. Stay strong…you’re not alone.

Also…fibro and menopause are a bad combo. I went through early menopause very quickly and I have no energy. It’s all I can do to get through the work day. Hormone replacement therapy can make a big difference for us fibro ladies over 40. I’m on the waitlist at mayo and can’t wait to get started.

I am in the same predicament- diagnosed only when I said my material Aunt has Fibromyalgia.. @ 52 been out of work since the pain is unbearable.. I have trouble getting dressed, pain in back& buttocks & ankle, both feet Socks & shoes hurt after only a short amount of time. Every day I struggle and on some I force myself to work outside- with 11+ acres to restore gardens and the whatnot. Home in disarray & major repairs.
So i do a little here & end up screaming at the heavens, sweap thru tears of frustration & immense pains.
Doctors only want to push mental health & subsequent meds, to which i continue to say They Are the reason I will end up mental. They said I can try acupuncture @ $100 for 15min , out of pocket cost & oh yeah, no coverage for mental health.
Im just blessed to have parents, 2 miles from me & 💯 support since it takes a miracle to get disability..
I am quite lost as to why I can't be heard & helped. I pray & thank the universe/ God that im completely alone & no one is effected by my miserable life.
Just me and an anxious furbaby keeping each other's crazy company.

Thanks to all of you for your insight and for sharing. I truly hope there are some advancements to ease the daily pain and provide something closer to pleasant for everyone. Best wishes to each of you.

I can totally understand your frustration. I am a similar age 54 next month, and I was recently diagnosed after 5 years of not knowing what was wrong with me. I saw my gastro consultant yesterday and he was the only consultant after diagnosing chronic mild GORD and slow esophagul motility that knew something else was behind my amplified pain everywhere. I fell over twice and was in hospital both times as I think the medication was contributing. I was told by my pain consultant who I was finally referred to to try and go medication free but it's almost impossible. I last a while and then reach for a tablet. The GP here in London will kind of prescribe me most things as they really don't have time to look into each patients medical history. I never speak to the same GP anyway...I think some people recognise fibromyalgia but alot don't or just don't understand. I have a lanyard that I wear to work that says I have fibromyalgia. If anyone asks I just say it's a recognised neurological condition that causes widespread pain. I can understand the isolation that this diagnosis can bring and it feels as if we have to try and get on as best we can whatever that is. My slipped disc in my back hasn't helped pain wise but at least my neurologist in hospital also flagged up the question why my pain was much worse than normally expected for this. I think fibromyalgia is slowing beginning to mean something to some doctors but finding a good one that understands it's a real condition that needs a real treatment plan is hard. I think having a faith is an important part of life however hard and on bad days I try and remember Jesus is there in my suffering. You are not alone as there are others out there living with fibromyalgia and living with it is not the same as a healthy person. We have to listen to our bodies and go at a different pace.....
Best wishes and many Blessings Guineapiglover.x

guineapiglover, thank you for your comments. I do agree faith plays a big part. I also had a "coach" for a while who also had Fibro so she knew what was happening. During the time I was doing the sessions, I felt like a different person which aligns with the theory that stress can contribute to flairs, etc. When I knew someone understood, it eased my mind considerably. That became too expensive and I had to stop and the symptoms returned. Feedback like yours, and others, is valuable to me and allows me to feel like I am not alone.

Blessings to you and gratitude for your encouragement

Absolutely. Ever since I was first diagnosed. They thought I was making it up.

@ckingsanctuary Sometimes we make the best of it. I try to stay as active as I can.