Thank you so much for opening up this conversation, because fibromyalgia by nature is an isolating disease that is not at all understood by most people.
I myself, had to go on disability because of it after working 38 yrs as a nurse, was ashamed to admit that was the reason for my disability. I had a full medical workup for other reasons, and it was more comfortable for me to say I was on disability for my chronic kidney failure, and mitral valve dysfunction, with chronic heart failure, than to say it was because I hurt so much from the fibromyalgia I couldn't concentrate or focus enough to even think straight, and would hide in the bathroom crying due to trying to work through the pain.
Even I was amazed when I finally learned that the only reason I qualified for disability was because of the fibromyalgia alone. That was total validation for me, and after that I began to tell people the truth about my disability.

@A MyFibroTeam Member When I was younger, my family was less inclined to even try to understand the degree of my pain but as they have aged and they are now having more aches and pains they are much more sympathetic. Also the knowledge of what fibromyalgia is has increased and since it does run in families, my family has educated themselves so they will recognize it if it hits anyone in their families. My sister has been diagnosed with fibro now too.

I won't say that I haven't cried from the hurtful comment from my family but since they have been much more understanding in the last few years I am willing to be understanding of their ignorance. Pain is so hard to explain or to express how bad it is. Even my children who have grown up with me having fibro tend to underplay the problems I have. They just can't imagine how difficult my life can be since I don't make a big deal of things unless I can't do something. It does get harder to keep the pain hidden sometimes.

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A MyFibro...

- Some know I have a "debilitating condition" only because they have to (i.e. HR, management)
- Others know it is the F word, but don't want to understand it - so I never bring it up again
- Some have experienced chronic pain or another life-altering condition and they get it and I feel their support
- Some know of my Dx and respect it - but don't get it (family)
In general, I always look put together, so it is hidden. I have found through the years I have lost friends because I cannot participate in life like I used to and my personality is more subdued. I do my best to keep it to myself. This is a healthy outlet and venue for support :)

I have an image of the nervous system that I show people, and I say I have chronic pain because of global dysfunction of these nerves... and I explain that nerves affect every part and system of the body. Ever burned yourself? Nerves relayed the info to your brain. Pain resulted. Had a toothache? Nerves. Had stomach ache, headache, broken arm, overworked muscle or Charley horse? All of that pain came from what nerves tell the brain.

My nerves are irritated and confused all the time, so my pain moves around, but it is chronic and affects all of my physical life: strength, energy, cognitive acuity, sleep/wake cycles, etc.

I can push through and exert myself, and I have many times, but doing so sends my nervous system into a hurricane of misinformation and nothing but time can calm it down. Bear with me. I'll do my best for you, but I need to be cautious of my limits. If I don't? I'll pay for it with acute pain for days.

Fortunately, meds allow me to function on some days and, this is the best part, fibromyalgia is not cancer. It will not kill me.

I am saddened to hear of all the physical and emotional pain you ladies are going through. I also have FM along with hypertension, degenerative joint disease of both knees and recently diagnosed with diabetes already causing nerve pain so I know first hand what it's like to deal with those that are either naive or literally rude and refuse to understand that we really do suffer a lot more than pain. I have finally gotten to the point that I don't discuss how I feel with anyone in order to save myself from unnecessary emotional stress or any frustration. Remember ladies, you DON'T have to explain yourself to anyone nor do you have to hide your pain. Be yourselves, express your pain to yourself and don't acknowledge negative people. You don't owe them anything - they're the ones with the ugly & negative attitude and they don't deserve your acknowledgement. KARMA is a wild thing to witness 🤔. Remember that those negative people will age one day and develop ailments.
As for a bit of pain relief, I find that taking 2000 units of Vitamin D3 and 2000 mg of Cinnamon capsules daily has made a difference in tolerating my daily pain. I have also learned to laugh at myself when I say the wrong thing or literally forget what I was talking about and have to ask the person I'm talking to. 🤔 I figure it's easier to laugh at myself and bring humor into my painful life. I'm 60 yrs old and I refuse to allow all my ailments and pain to own me. Oh there are days that I can't get out of bed or brush my teeth so I give myself a few days of pitty & pain then I get back up and thank God I can still walk and and laugh at myself. 💕