When I Was Diagnosed with FM, I Wish I Would Have Known...

To help capture personal views of living with fibromyalgia and chronic pain illnesses, Jan Chambers, President/Founder of the NFMCPA, posted sentences on the NFMCPA Facebook Page to be completed by our Fans. These short snippets about the effects of living with FM are insightful and revealing.  Visit the NFMCPA Facebook Page and leave your comments:

How would you finish this sentence?  When I was first diagnosed with FM, I wish I would have known______.

  • how people would react with disbelief and rejection
  • a good doctor understanding the condition and more love and understanding from family. And more information for them to understand the situation.
  • that no matter how awful it gets I’m still a single mom with no help financially. Work is almost unbearable many days. I just want to throw the towel in and quit it all.
  • how much of my ‘normal life’ I would lose & how much I’d miss being able to work … in the home & for a paycheck.
  • to pace myself.
  • exactly what it was… 2. How much it would affect my quality of life!!
  • that my diet makes a difference in my level of pain.
  • I wish I would’ve known who was going to lose faith in me.
  • how progressively debilitating it would end up being, and how emotionally devastating it is when you inadvertently end up disappointing your own children.
  • to listen to my body and know I wasn’t imaging the pain.
  • the lack of qualified doctors who understand and are available in Colorado. The lack of support groups Colorado has for fibro.
  • I wish I’d known earlier it took my doctor around 7 years of my going to see her about my pain and exhaustion before she sent me to a rheumatologist.
  • to pace myself … yep
  • Ya know what guys? On second thought… I do believe that I wish I had known the difference that acceptance of this condition would make! When we deny, avoid, push through, try to ignore it, It makes it so much worse. When we accept, pace, try to de-stress, practice self love, learn to say no without guilt … to me acceptance was what I needed a whole lot sooner.
  • what was wrong 20 years ago.
  • the lack of qualifed docters who understand and are available in colorado. the lack of support groups colorado has for fibro.
  • how long it was going to take to find a cure from this debilitatlng disease and how it would change my life so drastically. also, how many women have fibro.
  • to inform myself sooner also take better care of myself
  • how cruel other people would be to me because of it
  • it was a life sentence and it was going to destroy my life.
  • earlier it took my ďoctor around 7 years of me going to see her about my pain and exhaustion before she sent me to a rheumatologist.
  • nothing was going to help!
  • to pace myself...yep
  • that my life would never be the same.
  • ways to treat or take care my body to prevent it. But afterall Dr.'s don't even know why we develop it in the 1st place-
  • that it's ok & necessary to rest
  • I don't even know what to say. Too many words.
  • how much pain I would need to endure.
  • Ya know what guys? On second thought....I do believe that I wish I had known the difference that acceptance of this condition would make! When we deny,avoid,push through,try to ignore it,it makes it so much worse. When we accept,pace,try to destress,practice self love, learn to say no without guilt........to me acceptance was what I needed a whole lot sooner....
  • it's endless and most don't understand
  • so sad..so much suffering. so un understood by many.. Sharing on my page..
  • what as wrong 20 years ago
  • how to de-stress my life sooner and choose my battles better. Now, 20 years later I have learned those things and life is much better balanced.
  • the amount of pain I am in and how much I miss out on now
  • how some days I'd be in bed all day.
  • that I would need to be sure and take one day at a time. Thinking about the pain too far into the future makes me feel hopeless.
  • my daughter has gone down hill in the last 2 years in pain 24/7 no life for her or other people with same problem not happy jan
  • that to feel this ill and the pain everyday for the rest of your and how it would affect just getting up in the morning to realistically not having a meaningful intimate relationship to fighting to focus or to lift your body up each step to get into the house, probably wouldn't have changed anything. Because you really wouldn't grasp it until you have lived it and continue to live with it.
  • I have taken the time to read everyone's post. I am happy but saddened at the same time that there are others who suffer from the same disorder. I have a great doctor who is turning over every stone to have relief for my pain.
  • I have fibromyalgia, neurological, joint and muscle pain, diabetes as a result from the medicine, weight gain and inactivity. I take lyrica, prednisone, vitamin D, vitamin b12 injectons, tramadol with tylenol, and ibuprofen, I was diagnosed with sleep apnea and I have problems with my thyroid. Make matters worse severe arthritis in my knees and bulging disc in my lower back, I have carpal tunnel in both hands. I recently had surgery on my left hands for nerve pain relief. Some change but my hand still hurts. I was a very athletic and an outgoing person. Very active in my church and community. I am not sure how all this happened to me but I was reduced to just a shell of a person and was contemplating suicide.BUT I SAID NO. I was going to do a permanent fix to what I believe to be temporary.  I want each of you to do the one thing that you loved doing before the onset of this horrible and debilitating disease. This may sound cliche but TRUST GOD if you have a relationship and if you don't develop one. I found mental relief through my spiritual connection with our perfect creator. Stay strong and vigilant.
  • just how much I needed to care for myself and started to exercise and eat clean and unprocessed food.
  • years earlier...
  • not have married someone who dismissed my disease as it's all in your head....If that was the case I have this all over pain! Jack ass
  • that I'm NOT ALONE, and it's ok to admit how much pain you are in.
  • how much my life would change, and family would disappear.
  • how much discrimination I'd have to put up with by doctors. I got rejected by a primary care physician just because I'd put FM in my list of diagnosed conditions. He told me I had to find a specialist. I told him I'm not looking for an FM doctor. He didn't care. So despite losing 60 pounds and being in good health I can't have a primary care doctor because I have FM. I'm also near sighted... wonder if that matters too.
  • that so many people in and out of the medical world wouldn't believe in it!
  • I can't answer this honestly without everyone calling 911.
  • that I would have to convince my own family I wasn't crazy!
  • I wish I would have known or found the doctor I have now and the importance of having a fantastic doc who can help me effectively manage my pain but still leave me able to function. The doctor I have now has treated me for two years and he is amazing.
  • how much my life would change and how my body would betray me.
  • What it actually meant!
  • what real pain is. Having chronic back pain is nothing compared to FM pain.
  • it will change my life forever
  • that everyone would treat me like I was just looking for attention or drugs =s
  • have much and how long it would hurt!
  • how crappy I would feel and how many parts of my Bodie it affects
  • pushed on with my life, instead of wallowing in self pity! Thankfully I've learned to live around the illness.
  • wish i knew 15 yrs earlier
  • THERE IS NO MAGIC PILL!! Not to use pharmaceuticals to mask symptoms of Fibromyalgia while not addressing the root of the problem, in the gut/immune system. The detox off that rx garbage damn near shut my body down, I'm still healing my liver and kidneys two years after detox from lyrica, Tramadol, cymbalta and restoril. The right doctor is key. Big pharm will make you sicker. Lifestyle changes are required: proper diet (no gluten, dairy, corn or processed food), amino acids, adrenal support, hormone replacement, digestive enzymes, heavy probiotics, yoga, meditation, stress management, sleep, acupuncture, massage, chiropractic etc etc.
  • I wish I would have know years before I wasted money on All the different Specialist I went to for all the different problems I was experiencing whom acted like I was a hypochondriac. The years we suffer in pain and frantically try to find out what is going on with our bodies until one day when we find the right Doctor who listens and gives us the diagnosis of Fibromyalgia... That is the first step of relief to finally have a name for the horrible disease that has grabbed a hold of your body and turned your life upside down. The next step is to learn everything about the disease then find out how far you can push your body and what you need to avoid that sets it into a tailspin. Everyday is a new experience and every adjustment and tweaking you do to your body will slowly bring you to acceptance of the disease. Not everyone is able to take medications to help ease the pain and symptoms. I am one of those so I have to practice deep breathing, meditation visualization, prayer, laughter,lots of stretching and walking. Yes the pain is still there everyday, some days worse than others but I am determined to keep my body moving and enjoy my life. Sometimes I start doing good and I think to myself that I have this thing licked only to have a huge flare up. I take a few steps back give my body some down time then regroup and slowly get back up and start over. I pray that all of you will hang in there and fight this disease and maybe one day they will find a cure. God Bless!
  • that it's a real disorder and how the disorder functioned. That there was a stigma and I shouldn't feel crazy or drug-seeking. And that it's ok to ask for and utilize pain meds when you need them. There is no shame in asking for help.
  • how it was going to destroy my life and it would take me 7 years to re-build
  • that it only gets worse.
  • my life was basically over!@
  • I'd have it the rest of my life and how profoundly it would alter my lifestyle.
  • how to not hide how I feel....still do 

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