The other day, someone I have known since childhood asked me to explain what it was like to have fibromyalgia as she has a relative with it and would like to understand better. Once I candidly explained what it was like, the reply came back that my symptoms must be much, much worse than the people she knew with it because she can only sometimes tell that it is bothering them. My answer to her was this. Please be aware that people with… read more
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.
- 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 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. 💕
I try to hide my pain if I’m out grocery shopping or something but sometimes the longer I’m out, the less I can hide it! I also tend to get very short with people when I’m in pain so I try to just keep to myself! I’ve cancelled plans so many times, it’s a wonder we still get invited to anything! Lol. My family well, let’s just say I’d rather not talk about them! Two of my sisters have disowned me for life, which really isn’t a bad thing! Lol. My immediate family, husband son and daughter, sort of understand yet don’t. It’s only when I’m down and out that they sort of feel for me but other than that, they just want want want! Like everyone else, I’m so glad we have this site to come on!!! Everyone is so helpful and understanding and I thank all my fibro brothers and sisters for your help over the years!!