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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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I am finding since my fibromyalgia diagnosis there are people that react vastly differently. I don't usually have a problem with friends treating me as if I am the old me ( before diagnosis) and not thinking about my energy and pain levels because I look the same .However I do get frustrated when I realise I have to say no to things, and sometimes I get called late or early in the morning when it's usually not a good time. I do wonder if they believe it's a real condition sometimes but my mum does understand as she noticed a big change in me over the years and knew something was wrong.
I haven't had any one dismiss the fibromyalgia diagnosis as such, or at least not directly,I am also 54, and we aren't old. As I mentioned above I think it's when people aren't treating you any differently that can be a problem and perhaps they are dismissive,after all we look the same .I thought my symptoms were perimenause at first and it's possible people are thinking that it's women of a particular age problem. I just explain to people when they ask what it is, I say it's a chronic neurological condition that causes chronic widespread pain and other symptoms .That usually makes me feel better even if they don't get it. It doesn't matter what people think, it's real to us and it's a recognised medical condition anyway and lots of research has been done on it and it's not all in our heads. My reality is now not bothering with people who don't understand, I haven't got much energy to waste, I used to be a battery full of energy but these days my battery is drained by the constant pain etc and I am learning to love the new me whatever that is. I do what I can and that's enough.
@guineapiglover Ask your doctor for some medicine to help with the pain and sleep. My theory is a good nights sleep makes it easier to cope with the pain because you are rested. The pain will always be there, good days and bad, take a couple of tylenol or advil to help, then you just keep going, I've done it for over 40 years and am now 75 and still active.Good Luck
Many thanks for your help, I am willing to try anything. Sleep does make a big difference, I have co codamol by my bed and I am now on antripuline aswell depending on the severity of my pain.The pain is always there in various forms and places but the worst for me is my back at the moment because of my slipped disc and Radiculopathy. I am waiting on a neurological appointment as my leg muscle vastus medialis has neurogenic changes in it and this adds to weakness and chronic pain. It's so frustrating and getting meds right is important as I get alot of side effects. I think over here in-between appointments which are few and far between we are left to get on with it...
Yes, all the time. One physical therapist told me, it is what they diagnose you with when you have all over pain. I also have functional movement disorder, which many people do not believe in. I am constantly judged by family, colleagues, and physicians.
@guineapiglover I am a teacher as well. I am useless at home after working all day. And I need the weekends to recover. I am 48 and have fibromyalgia, migraines, and functional movement disorder.
If any doubters feel like we do they would get it. I wouldn't wish fibromyalgia, your functional movement disorder on anyone but it's really hard to understand when chronic illnesses are invisible. My husband understands as he has bought books on fibromyalgia and read up on it. I have cut back on my tablets but I have had several melt downs and got very confused, while dealing with the chronic pain ,not thinking clearly and crying my eyes out. It was my body saying I have had enough. I couldn't sleep and had to reach for some pills.I was grateful that I wasn't teaching at the time. Children obviously don' t need to be told about hidden illness but it's hard carrying on as teachers just get on with it. I am at least self employed and can take time out when needed. I find that in different situations when I am having a flare and briefly trying and explain why I am stuttering my words and forgetting what I am doing and holding up a queue in a shop for example it's unpredictable on how people react. There are the true believers that can't do enough to help and there are others that obviously don't understand or believe that fibromyalgia is real. At least we know our own bodies and if we could go back to our old selves we would. I hate having limitations but the consultant knew what he was talking about when he diagnosed me with fibromyalgia as it all makes so much sense now.