I’ve learned a great deal from having fibro. Some are lessons I wish I’d never experienced, while others have made me a better person. Following are five things I’ve learned:
1. It’s OK to say ‘no.’
I spent most of my life trying to please everyone, so I rarely uttered the word “No.” Now it seems like the only answer to every question I’m asked. Saying no was something I hated to do. I felt like I was letting people down. Learning how to say it and not feel guilty was difficult.
I came to the realization that my body will not allow me to do everything I would like to. It isn’t my fault and I should not feel guilty for it. I no longer volunteer or sign myself up for events or projects, because I can’t always keep my commitments. I hate to cancel at the last minute, but there are times when it is necessary. I’ve talked with family and friends so they understand there are times when I can’t make it due to my health. If they don’t understand, that is their problem, not mine.
2. Not all doctors know what they are doing.
Doctors are normal, everyday people. They make mistakes. They don’t know it all. They have bad days and sometimes make decisions they shouldn’t. If I think any medical professional doesn’t understand what I am saying or they don’t listen to me, I’m out of there. Time for a new doctor. Getting a second, or even third opinion is not a bad thing. If it doesn’t feel right to me, I go elsewhere. My health depends on physicians who are knowledgeable and who take the time to listen to me.
3. Listen to your body.
I hate to admit it, but I brought some of my pain and suffering on myself. I didn’t listen to my body when I should have. If I’m in a lot of pain, now I rest. I don’t push myself like I did when I was younger. Being in tune with your body is one of the best ways to tell when a flare is about to take hold. I have telltale signs I look for. Headaches and shoulder pain are usually the first indicators that a flare is around the corner. I can’t stop it, but I can be prepared for it.
4. I found out who my REAL friends are.
I’ve lost friends and family because of my illness. I learned the hard way who really cares about me. I’ve cut some people out of my life because being around them was detrimental to my health. Why do I want to subject myself to negativity and accusations? I prefer people who build me up, not those who tear me down.
5. I am not alone.
And neither are you. When I first began experiencing symptoms, computers and the internet didn’t exist. Now we have the world at our fingertips. Online support groups have been a source of friendship and love. There are so many others just like me from all over the world. I now have friends I can commiserate with, which I find cathartic. I value the friends I have made online. I’ve met some amazing fibro warriors who have taught me more about this illness and also showed me that I still matter.
My illness does not define me, but it has changed my life in ways I never imagined. Taking the time to really think about what fibromyalgia has taught me has given me a new appreciation of life. Seeing how I’ve evolved over the years isn’t as depressing as I thought it would be. Even though I’ve suffered physically and emotionally, I am a stronger person because of it.
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Very good, Carrie. Thanks for your wisdom. All five of those points hit a chord with me. The hardest on is to let go of my daughter who still thinks I’m faking or exaggerating after 38 years.
Pacing is the most important lesson I have learned.
Thanks again.
Number is my favorite-your honesty is appreciated.
The biggest thing I’ve learned is patience. Not only with myself because my body and mind don’t always respond the way I want or need them to, but also patience with others who don’t understand what I’m going through and need explanations! I’ve also realized that patience and the ability to remain calm also keeps me from getting into “stressed-out, crazy woman” mode less often than I used to–which was often considering I live with six male humans (five teenagers) and two male cats! Lol ? Stress for me always causes a major flare so being able to calm this down is a huge deal. Of course, life happens and situations arise, but this is how lessons are learned right?
Bingo! Bravo! Beautifully expressed! I totally agree with your learning curve as they have been mind as well. Such confirmation, dear fellow warrior! Oh, one more B word–Brilliant!
*mine 😉
Thank you for your advice I lost my whole family because they think I am faking this disease. And most of my friends are gone! this is a very lonely disease. I am still fighting and staying alive keep fighting for a better life.
Best Regards
Robert F
Hey don’t give up it took me 4/1/2 years to get disability but I’m 5 times worse now my family didn’t think I would get it now theyy see it and am very supportive of our disease
I believe many of us have lost family and friends-those whom do have love and support from family/friends be grateful…nope, no self-pity here. I do what I can and it is adequate in my eyes…I have times I want to give up too.
All five resonate with me. I would add letting go with saying No. I’ve had to just let go of things that I can no longer handle, no matter how important those may seem. Prioritizing is a must if you want to keep your sanity.
Yes, yes, yes, to what you have added, Nanette! I might sound like a mimicking bird, but it’s wonderful to have such confirmation and affirmation combined. Really great article and people are discovering how to live their new normal lives better than they thought they could. It is horrible when people are not on board who claim to love and support you 🙁 My heart goes out to those who do not have this hard-won support. Don’t lose hope, anyone!
I can relate. I have Fibro, MS, and AS. I also a chronic lymphocytosis and a low vitamin D that doesn’t change with supplements. How they are all related I don’t know. I just know it took me from an over achiever to struggling each day with pain.
My family abandoned me because my pain was boring and I no longer made good money to support fun activities.
Doctors definitely do not know what they are doing and sometimes they are humiliating you just for fun.
My friends have disappeared. Pain meds mask the pain and help get through the day. Thank God for that. I’m hoping that a CBD patch maybe the answer. Fingers crossed.
I’ve just realised all the major systems I’m showing is pointing to fibromyalgia! I was diagnosed with RRMS eight years ago & I just assumed my symptoms were apart of the m.s!
I can relate to your post David (especially my pain boring bit) also my friends are disappearing day by day, I don’t know anything about fibromyalgia, how is it diagnosed & what treatments are there! I’m already having monthly infusions of Tysabri, I definitely feel lonely right now.
Thank you for sharing. A light went on for me when I read about the headaches and sore shoulders being a sign of an impending attack. I’m in one right now. My husband and I have a busy life so I sometimes just put on a good face and move forward. My immune system is not good and I catch any virus I come in contact with. Not great for a traveler. Life certainly has changed. I like to golf but will only do nine holes. The exercise is good for me and my friends are understanding. While they are finishing a round, I go home and prepare lunch for us all or wait till they get back and we all go out. One day at a time but there are times when I just stay in bed.
I wish I could have the warning of an impending flare like that, but I always have sore shoulders and regular headaches so flares tend to hit me out-of-the-blue sometimes…like today! 😕 My partner has been on holidays this past week and we’ve been busier than usual and I felt fine until I woke up this morning. Now I feel like I’ve been run over by several trucks and I can’t enjoy the beautiful weather we’re having. Live and learn…take more breaks next time!
I have found that even going on a vacation even with no stress I end up in bed for anywhere from 3-7 days. Pain, headaches, overall pain but for me the very worst is FATIGUE beyond most people’s understanding!! I have amazing support from my loving and understanding husband and my granddaughter lives with us and takes such good care of me when I am at my worst. Yes I have lost some friends but overall they do their best to understand me but unless you can look good when you are in a remission I think it is hard for anyone to understand completely how badly you suffer Day after day. Just appreciate all the loves in my life understanding it’s REAL. Also, it is very hard not to get into a depression of some kind. My seems to get worse in the winter when it’s colder and I suffer a lot more pain and need to nap off and on during the day’s. I also have LUPUS/SLE and never know when a flare will strike…just know it’s been 22 years and it’s been a rough road but so blessed to be here for my husband ,kids,grandkud’s and great grandkids. I still have that fire in my belly and pull myself together for as many family events as I can possibly do❤️love life regardless of this major new normal for me….thank you God🙏
I was first diagnosed with FM about 25 years ago. Little was known and most thought it was a catch all phrase for anything the medical community couldn’t name. It was also about the same time I was diagnosed with COPD
& Emphysema. The years
rolled on, I was young & went to the doctor when I got really bad. Then 8 years ago, I went to a new doctor, who really believed in FM, but sadly enough I was diagnosed with lung cancer. I had the surgery & had a portion of my lung removed. There were complications & I remained in the hospital for five five weeks . I was only 45 years old at that time. Thankfully as of my recent scans no cancer has returned. From meds, diet, no exercise, oxygen 7 days a week 24 hours a day, severe acid reflux, gastrippatesis, among other things. My remaining lungs are no good, I’ve gained 100 pounds, can’t exercise because the climate is not ideal, I have work out equipment in the home but I’m so short of breath I can’t use it. I feel terrible about my appearance and don’t know how to climb out of this deep hole. I am at my wits end & don’t know how to help myself. I feel like a prisoner in my home. I know this is extremely long but I have tried to condense. I don’t have a problem with you knowing my email : spahrsmith@ yahoo.com. I would welcome comments or suggestions. Thank you.
I can absolutely understand this life you are living…22 years ago they put me on steroids at a high dose for way to long and I was hungry all the time and inactive for over 3 years. I was diagnosed with both LUPUS-SLE, Fibromyalgia, irratible bowel syndrome and Vasculitus of the brain from the LUPUS. They had me on so many medication’s for pain and the other things I had. It was not but about a year and a half when they put me on Chemo Thereapy for my brain and still in bed.
more than out. I went from a mere120 lbs to 225 lbs. As we tapered off of the steroids which too over a year I joined weight watchers and did very little excersise but within a year I was back to my normal weight. It was a hard battle but with prednisone you can hardly recognize yourself in the mirror cause it distorts your face and body. I am still suffering from these diseases but feel blessed to be alive. I have the pain, headaches and all that comes with it but have a good Pain Management Doctor and the biggest thing I suffer from is FATIGUE that is unexplainable to anyone who has never felt it and depression. Going to Stanford Hospital where there will be a panel of Drs. and see if there is anything better for me being my doctor is not a specialist and see what they come up with. It is 6 hrs. From home but we will go and spend a night or two and hopefully get some clarity. I believe a lot of the medications I am taking are all having bad interactions between a lot of them causing me to NEVER feel OK…best of luck with all your terrible issues but I feel after being in this same spot for so long that fresh eyes might help me out…we will see❤️
I have had FM for close to 40 years and I’ve found that AMITRIPTYLINE helps with sleep and the fatigue that you feel with FM. I’ve been to all kinds of doctors and all kinds of meds. I only take this medicine for FM, and only 25mg. If you take a bigger dose it can cause some weight gain. Exercise does help with FM but you have to be consistent with it. Hope this helps someone out there.
Me too FM for 40 years. Too bad we didn’t have each other back then when there was no support to be found anywhere. Also Nortriptyline has helped me more than anything.