This was a presentation made by Daneen Akers during the 2008 OFFER Conference. Daneen Akers and Stephen Eyre are the makers of the film, "Living with Fibromyalgia." OFFER
I was diagnosed with juvenile fibromyalgia at 12 and I'm now 18. It's difficult trying to cope with the pain while being a full time student and working every day. It's so comforting knowing that I'm not alone in this fight. I'm younger than most fibro patients and a lot of doctors are in denial with the fact that I suffer with inflamed joints, chronic body pains, hot flashes, muscle spasms, migraines, memory loss, fatigue... I hope that more education is taught so that chronic pain isn't question, especially those suffering who are much younger.
I was diagnosed with fibro just recently it all started after a trauma NOW yes i am genetically predisposition ed to it i have always been sensitive and both my parents have chronic pain BUT i do not believe you have to live in pain for the rest of your life i do believe you can put it into remission it's understanding the root cause and fixing that :). If you believe you will be in pain for the rest of your life then you will if u believe the pain will go away it will there are people who have beaten chronic pain and are now living pain free lives anything is possible but u must believe the mind is very powerful
I’ve had it since 2004. My husband divorced me coz he sd I was always ill and lazy He never understood me then 18 years later I remarried and he don’t care either So end of year I’m leaving to go home to uk We’re my children can take care of me . I’ve sufferered so much ... Yes I use to work 3jobs for years And yet have nothing to show only my illness .
To have a family member (and in-law) be interested enough to do what you have done, is the one thing I find outstanding. Your mom is very fortunate. If had immediate family who let me talk, instead of beating me down, I don't think suicide would enter my mind and be something I fight. At first, it is important that the patient is supported, which means education is so important for the family. As an advocate, I have done small studies and I've found two people who have had good support. The unsupportive is the norm. I can take pain, but not with those who have no empathy. At times, I sounded like it was expected of the patient to get a hobby, etc... although I don't think that is what you meant. Hobbies are important, but when Fibro is one of many on the list, or the ONLY on the list, there is not the cognitive ability to make good choices. A kind word of explaining goes a long way instead of being hateful. Things have changed as the years have passed, but in reality, there is no interested. The story I've been begged to write by the medical profession, has sat for years and years. It takes me forever to do something, but after a few years, I have a blog. I've had strangers tell me it was a good job and a doctor tell me I would get somewhere.... but I've heard nothing from my family. No, I choose not to tell, because if they thought it was "stupid", then I couldn't take it. I can take many things, but to not care is something I don't understand when suffering terribly but had the openness closed to speak about "me". They can find it if they choose. Almost dying twice, maybe three times, I'm amazed how it's not news. I'm not looking for attention, I'm looking for a friend. But if it's not told, then rumors will not get friends. When you mentioned the cancer deal.... I understand that. And my friends who have cancer tell me they could never go though this. But "cancer" typically get's helpful people or those who are willing to get you to the dr.'s office. I find it amusing that I take a taxi to the dr's office monthly, yet there is no one I know that will take one anywhere. Little things like that tells me what I am considered to be. "A Nothing". Your mom is amazing, but her children are more amazing and that is the real true research! :) Thanks for your honesty..... This story isn't only about Fibro, but all Invisible Disabilities or Chronic Illnesses. But it was covered well.
Be careful of shame based communication when giving these talks. To paraphrase, you said 'shared similar sensitivities to your mom, but luckily with awareness didn't go down that road'. Remember Fibromyalgia is not a choice.
most ..but not All, have had severe abuse (all forms of abuse as a child . Not saying your mother did or anyone else on here , but from a group i am in on FB i placed the question 3 years ago and a very high number of fibro sufferers had been .
I got told on 8/15/2012 I have firbo.I am 27 now.an they believe i have had it since i was 14.but did not know it.I have been on now 4 meds for it.an so only on 1 med now for fibro called savella.so ya fibro sucks,.an i am married.an have had 2 misscarages.an have a 5 year old son.an been trying to lose weight.as i was very thin.then i had my son so ya.I feel for any one who has this:(
