The first piece of advice I always give is “Have hope. Your life is not over.” This is the most important piece of advice I can give. We have asked a question to our community “Living with Fibromyalgia and Chronic Illness” and “Your Fibromyalgia” that What advice you give to “Newly diagnosed Fibromyalgia Patient”. A lot of members has participated in the thread and share their advises.
Live everyday to your fullest no matter what the pain is going to be there NO matter what you do what you take TRUST ME WELL start a goal everyday big or small and always keep living and if you need rest stop rest ,sleep take that time to do so only you know what you can take or give. It’s not going to be easy, but you will eventually find a set of routines that work for you.
People will misunderstand you but through groups, and others sharing in this experience you will gain much needed support. Take your time, give yourself time, and work at your pace not an expected pace. Know your limits. Know you will lose friends along the way and family will not be understanding. Don’t let them make you feel bad about your self, till they have it they will never understand.
Life doesn’t end with fibromyalgia. You are a warrior, not a victim
Here are few of advises members shared with us:
1. Know your limits. Always listen to your body. Have patience with yourself. Don’t let others make you feel bad for what they can not see. -Kaye Mansfield
2. Remove any processed foods from your diet, heal any unresolved abuse or traumas, try to get a little exercise everyday even if it’s just walking. Love yourself enough to heal your body and not making it sicker with unhealthy foods and thoughts. Be kind to yourself your body is listening. – Jen Jen Reynolds
3. First give yourself the time needed to adjust to this diagnosis. Don’t let others tell you what it is all about, every fibro person is unique, with the medical common denominator, of the same diagnosis, called Fibromyalgia. Please work with your physician, and ask for a dietary specialist to help you find the best diet for your needs.
Remember, you will hear many say, there is little known about this disease. As with any diagnoses delivered to any patient, there comes questions, doubt, and fear. It is difficult to accept any diagnoses, but with Fibro the medical people have been known not to fully understand what it is and where it came from, other than a Rheumatologist discovering it through his patients. Seek out the most knowledgeable, and whatever you do…Don’t Do any of it alone.
Ask for family to be involved, if you have a S.O. or spouse, ask them to be involved as well. You are not alone, and don’t allow your thoughts to control your need to ask for help. You don’t always need to be the strong one, let others know and be honest, but most of all be true to self so you can be honest with others. It may not always be easy but you can have good days.
Allow yourself the right to have the tough days that will come with the diagnosis of Fibromyalgia, but also allow yourself the good days with out over doing. Find your balance. You have as much Right to be here as the moon and stars in heaven, and the sand and shells on every beach. Hugs my new found Fibro friend. Make that Gentle Hugs as we say to one another in the fibro network of our friends –Sandra Kram
4. Seek a good Rheumatologist! Then I would suggest when you see one make sure you tell him or her everything about your pain and aches! Know your limits! Take your medicine properly! Don’t over exert yourself! For heaven sake if you cry, well cry, if you can’t move hardly or the bed sheets hurt your skin, well accept it and doesn’t mean your going crazy. You may feel as it is. But if your Rheumatologist ever tells you its in your head! Well walk out the best you can. Find you another.
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This is a wide spread pain and Fibromyalgia syndrome has been affecting many women and some men! But I do know stay away from Caffeine. It will cause you to hurt more and peaks of fall and early spring seasonal might effect you. But everyone almost has the same or almost the same chronic pain! Prayer and trust in God helped me! -Pamela Byrd
5. One thing at a time. Give yourself time to adjust. Then try different therapies one thing at a time. That way you know what makes a difference. And don’t believe the miracle cure crap. There isn’t one. Some people get relief with certain things but it’s not going to magically go away. Don’t let other people get to you. Either ignorance or disbelief in this condition by others is very trying. Pace. Pace. Pace. This is a marathon. ..Not a sprint. Life has a new normal. Every activity has a price. So pick your battles — Tammy Greer
6. Dollie Farr Feld — List all of your symptoms and the time of the day you have them. Also list any activities you may have done that may of made them worse. Also list the levels of the pain you are in.. Keep this diary along with the medication you are in and how often you need them. If you journal every day you will find patterns on what may be making you worse. Also pay attentions to the weather changes and the temperature highs and lows. By me being more aware of the weather and my activities I am able to be able to help control my pain.
7. Anna Walker — Get a good probiotic, cut sugars and carbs from your diet, work on your gut health. It’s made 100% difference for me!
8. Violet Ortiz — Don’t over read on your diagnosis, take each symptom at a time and deal with them individually not as a whole, because there is no cure for fibromyalgia but there are medicines to help you cope with each symptom.
9. Anita Muller — Keep a diary to help you understand your condition as everyone is different. Choose your health care professionals carefully and don’t be afraid to seek a second opinion. It is your decision what drugs you do or do not take. Once you have adjusted to the new you try and stay positive even if you can only manage something small like being able to sit in the sunshine or walk around the block.
10. Sheree CeCe Hutchins — Don’t give up, find a doctor that understands, find a support group online. Going to anything in person will become difficult and you need people that understand more often on your worse days. You may try many medicines before you find what helps you and it can change over time don’t get discouraged, pay attention to side effects sometimes,they are worse than what the medicine is for this. I learned the very hard and dangerous way.
Don’t be afraid to ask for help its one of the hardest things when your body doesn’t let you do what you use to. It’s okay to cry and mourn your old life, mine slipped away a small piece at a time and one day it hit me like a ton of bricks but Letting myself mourn also let me embrace the new life, tho very different can be rewarding in its on way. Sometimes tired is pure exhausting not your old tired that you can push thru its okay to listen to your body and go back to sleep, keep a journal at least for a little while to figure out what times of day and what days you can manage to push thru in order to get to doctors, I have been blessed, as my conditions worsened over the years, my doctors understood the cancels on so many times and now I spread them out with recovery time in between and I avoid any appts on Mondays that require me going anywhere if at all possible….
The weekends with my kids is always so much fun and happiness even its just me watching them play video games or cartoons all day snuggled up, and I so love church on Sundays with them and my mom, but it drains me and its highly important in my world so I make the time for that and juggle over appts around that, there are still plenty of times I can’t make the drive or sit up or just breathe comfortable but just in case I can I make the plan and when the plan works its awesome. Fine the thing that is that important and pursue that and do NOT beat yourself up on the times you just cant, its okay we all have those days. Remember your body will change over time, be flexible, forgive yourself, and rest.
11. Michelle Harris — When your body says STOP .. you had enough listen to it….. if not u will pay for it the next day.
12. Dawna Chilton —
>. Don’t feel guilty for this, it’s NOT YOUR FAULT! Never blame yourself for being diagnosed with something out of your control.
>. LISTEN TO YOUR BODY– Dr’s are not always right, don’t always have your best interest in mind and, despite their “medical expertise”,don’t truly understand this illness themselves yet. It’s still very much a mystery for Doctors and a lot of them will try and make you think things that are not true because they themselves are misinformed..
>. Be your own advocate, and RESEARCH, RESEARCH, RESEARCH! Ask questions, make lists, be that b*tch if need be–at the end of the day, you’re going home with this illness and the Doctors getting paid to feed you pills and false information–even if they aren’t aware that’s what they’re doing…
>. Spread awareness everywhere you can, I’m sure there’s a cure for this!!
13. Idina Matherne — Water is your friend… Drink plenty and try exercising in it. (Water Aerobics).
14. Rebecca Lyn Pijus — Everyone’s body is different. What may work for one persons pain may not work for you. Trust your own body. Learn how to read it. The faster you learn how to read it and interpret what your body is telling you, the better it’ll be. LISTEN to your body. It will give you signs, do not ignore those signs. You are your best advocate.
15. Kathy Larson-Carlson — Check out your diet. If you have food intolerance like to gluten or dairy, it will make you a lot worse. Also a whirlpool or warm water pool therapy helps your pain and keeps your muscles from atrophying. Pace yourself and break things into smaller steps with rests between. The pain can move to other parts of your body so don’t freak out. You do have good days, don’t give up and get into a support group.
16. Jeanne Hart — It is not your fault you did nothing to deserve this. Look for support from groups but don’t overwhelm yourself in others problems. Learn to say NO! When you need to rest it is ok if you don’t cook a meal or make a bed the world will survive. Try to educate yourself and those close to you.
It is very real and anybody who says different is ignorant even if they are in medical field. If you come across a doctor who thinks it isn’t real leave them immediately they are a waste of time and money. Stress is your enemy try to relax. I could go on and on but that’s a start.
17. Katrina Edmonds — Don’t stop moving!! That was my biggest mistake. Exercise has turned my life around.
18. Vickie Tway — Learn to pace yourself. For chores around the house, I have found that if I work for 20 minutes then rest for 10 minutes, I can get a surprising amount done! Far better than a cleaning frenzy of a few hours that ends in 3 days in bed.
19. BobbyandElena Frazier — You are NOT crazy or alone! Don’t push so hard that you back yourself into bed for days. When you do land down for stretches be kind to yourself. Get ride of or reduce toxic and unsafe people in your life. Do everything possible to reduce stress. Keep researching! You are your own and best advocate! Be open, honest and venerable with someone. Do what you can to share education with those closest. It will help you all to understand.
20. Karla Harvey — Searching for understanding will be a never ending quest. It’s not about how others treat you, it’s about how you react to judgments and those who diminish you symptoms. You have to become emotionally self sufficient, meditate, be assured, redefine your new self and know that you are your own warrior. Be the best that you can be with this illness. Don’t let ignorance of others overwhelm.
Find support where you can and be supportive in turn. Accept that not all people can be supportive but that doesn’t mean that you are any less valid. Strength is more than failing muscles. Tending to your mental health is as important as your physical. Forgive yourself when you struggle. Be aware that medical treatment is trial and error. You are in control of the choices you make and the paths you explore. And don’t forget to breathe…
Wearing yourself out for others is a slippery slope. Learn to say ‘no.’ Keep loving. You are not alone. You will have ups and downs. but just know you have come this far, there is so much more out there for you.
Also Read: Hope for millions with fibromyalgia as new gut bacteria test could diagnose condition faster
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