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Anyone else feel like people don't think Fibromyalgia is real?
This is my first foray into a support group so please bare with me. I was diagnosed with Fibromyalgia in August 2024 at Mayo Clinic. I had several weird symptoms that mimicked Sarcoidosis (which I was diagnosed by Mayo in 2010 but had gone into remission). However, many of the symptoms are the same and I was run through the works at Mayo and it was determined that it was Fibromyalgia. I was relieved to finally have a diagnosis to explain the chronic fatigue, lack of desire to engage in activities that used to bring happiness, fairly consistent pain, trouble sleeping and waking up in pain in the middle of the night, restless leg, anxiety, depression, fibro fog, etc. When I got home, my primary care and the chiropracter I have seen forever said, "that is what they diagnose you with when they can't figure out what is wrong. It's a catch all". This instantly discredited the diagnosis and made me doubt it because these are two practitioners I trust. After a year, I am still having symptoms and still trying several therapies (apps, breathing, mental health resources) and even added back a medication or two from the Sarcoidosis days.
I know there are people who suffer from this way more severely than I do. I am able to do most things I want and manage to push through the painful sleeping to be at work and function as best as I can, but I know I'm not lazy and this is not normal. For all of the things I can do I am very grateful. What I am struggling with is understanding the disease and what is just old age (I'm 54) or too many miles on the body vs what is Fibromyalgia impacting.
If anyone else had a similar experience of having your diagnosis dismissed by others, please share what you have done or are doing to get better physically and emotionally, and how you wrapped your mind around reality, regardless of what your reality has become.
Thanks to anyone who has time to respond and I appreciate the opportunity to learn from others.
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@19281928
You shared some very helpful insights that mimic my own experience and give me some positive reinforcement. Thank you!!
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1 Reaction@daisy17 I tried the LDN but it caused more anxiety and nerve pain .. my friend takes it and it works for her .
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2 Reactions@19281928 I'm so sorry it didn't help.
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1 ReactionYes, I feel the same way. Through my journey to get help tuns of medical bills and different doctors later I still struggle deeply with the pain and anxiety and fatigue. I’m always told to loose weight and work out more but the pain will go away. I have a job that wants to fire me because I physically cannot handle the demands of being a custodian although I try. Right now I’m dealing with my job cutting my hours and I have been told that because I can’t do a certain amount of square feet Im going to get fired. And I also deal with a relationship with someone who kind of believes that in pain but is skeptical. With this stress My pain and is fatigue constant there is no time in between. Sometimes I just want to give up.
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2 Reactions@nicolemosley333 please don’t give up. I had enough reasons to be depressed (childhood abuse, domestic violence) and started having intermittent pain before the fibromyalgia hit me full blown. I became more depressed and my job was difficult due to brain fog/difficulty with even thinking, getting to work physically was so hard. Diagnosed with major depression. I went to see a social security/labor attorney on the advice of my doctor. I really struggled, didn’t want to try. My doctor really pushed for me to do it. Attorneys advice you will most likely win a disability case based on depression then fibromyalgia. He was right. We won. Best thing I could have done with this illness. Unfortunately even our “justice system “ doesn’t believe in fibromyalgia. However that was 10 years ago so maybe it’s better now or your State/county may have a different outlook on Fibromyalgia. You may even have a case against your employer. The attorney did not charge anything unless he won the case. Then he got a percentage of the settlement which was well worth it. I just paid for copies of some paperwork. Have you applied/ received any disability so far? There’s certain steps that help your case. Just giving example of possible ways to get help. I’m so sorry you’re employer is not sympathetic. It hurts even to hear about it.
@nicolemosley333 Please don't give up. I actually started this thread a while back. As I have read along to the posts, I have realized several things. One of the most important things is there is likely someone on this or another thread who has some advice and I think everyone on this platform wants you to feel supported. I don't know how to fix it, but I hope that answers and relief come soon.
@nicolemosley333 ❤️🙏 ... You're not alone
@judyingenes I'm with you ☺️
Yes, many people with Fibromyalgia experience exactly what you’re describing, where finally receiving a diagnosis brings relief at first because it explains symptoms like chronic fatigue, widespread pain, poor sleep, restless legs, anxiety, depression and brain fog, only to then have the diagnosis dismissed by other people or even trusted healthcare providers as a “catch-all” condition, which can create a huge amount of self-doubt and make you question your own reality despite continuing to struggle with very real symptoms every day, and this is especially emotionally difficult for people like you who previously had a more visibly measurable illness such as Sarcoidosis because fibromyalgia often does not show up clearly on scans or lab tests even though major medical centres like Mayo Clinic absolutely recognise it as a legitimate nervous system and chronic pain disorder, so many patients eventually find that part of coping physically and emotionally involves accepting that while aging, stress and past illnesses may all contribute in some way, the persistent exhaustion, pain and cognitive symptoms are still real and deserving of treatment, support and self-compassion rather than dismissal.
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1 ReactionYes. This is classic Fibromyalgia. It’s an “invisible” syndrome that makes people think you’re normal. I’ve had it 22 years. Cause is mental and/ or physical trauma. I had both, plus it’s hereditary. My Mom had it unknowingly, and my Dad was a doctor!