Which advice would you give to someone who has just been diagnosed with Fibromyalgia?

Well, it is bumpy road, hanging there brave warrior.

2/28/17 by fathimath 1030

EDUCATION! Find a REPUTABLE website (fmauk.org for example) or a good book (Fibromyalgia For Dummies) and, most of all, learn to understand your body; your triggers, what helps, what doesn't, your limitations. Only you know what your needs are, so listen to your body.

3/24/17 by Kerry 1000

First thing to do is breathe! It'll be ok, your life is not over, you aren't going to die. Fibro is not a death sentence even though you might have days it certainly feels that ways. Next thing to do is read, read and read more. Research your condition as much as possible, try to find a local or online support group (lots of these everywhere!) that you can get help from if you need it, talk to friends/family and your doctor. If you can get it, support from your loved ones can be huge for your being able to live with this disease. Most don't relate or understand but if even one person in your life can support you, you'll be ok.

6/24/17 by Tiffiane 4151

To learn all you can about it, speak to people with the disease, and most importantly try to think positively and negativity will only bring you down and make everything worse

9/8/17 by Sarah 2500

Research, research, research!!!! Find out all you can and them find out some more. Speak to someone that has fibromyalgia. And don't be afraid to make mistakes. It's really a baptism by fire Find out what works for you and don't let it define you

3/16/18 by Hazel 800

Being diagnosed is a process and you have to remember not to be too hard on yourself. Another thing to be careful of are the what if questions that you will ask yourself. You can literally drive yourself crazy by saying if I had done this maybe I wouldn’t be the way I am now. You have to take your time and the biggest thing is to learn your limitations. It’s a bit of a trial and error process. If you overdo/overtax your body you will pay for it the next day or two. You have to also go through what I call the grieving process similar to what people go through when mourning the loss of a loved one. The life you had prior to fibromyalgia most likely won’t ever comeback. You have to grieve the loss of the life you had prior and come to grips with your new life with fibromyalgia. Never give up hope that you can’t find a goos treatment or that a cure could happen in your lifetime but at the same time you have to be realistic. Be patient with yourself. Finding others who are dealing with fibro can help you as well. Sometimes just knowing you’re not alone is a big thing. There are online support groups and you can find groups on social media along with just one on one people. If you are married I think it’s very important for your spouse to be involved with appointments and understanding how your illness affects you and what you need from them. Having a supportive spouse is a huge plus for me personally. Another thing that you yourself can do or have the dr do is explain to your spouse that there is no easy fix and that they cannot simply make you better this is going to be a change that is lifelong and it’s not a sprint it’s a marathon. There are support groups for spouses/caregivers online and in your towns. Also they have to learn as well as you that sometimes you simply cannot go and do something. It’s not unusual for people with fibro to miss family events or even work/ going out with your girlfriends or guy friends. Also gather family and friends and help them to have realistic expectations. If you try to plan a get together two weeks out you may have to end up canceling it due to pain or simply being too tired. Sadly it isn’t unusual to lose friends when you aren’t able to be reliable about going out. Here is my best advice on this... if they leave simply because you can’t go out or do as many things then they aren’t a true friend. A true friend when you call to cancel will understand or they will say hey that’s ok what if I bring something over to eat and we watch TV or a movie at the house. A true friend will put your needs above their own. Sometimes yes you might be able to weigh out the options and say I’m going to push through it and go but realize you may be out of commission for the next day or more. One of the best things I found was A letter to the Normals for families and friends of fibro sufferers. It explains what we are dealing with. Another great tool is The spoon Theory. The spoon theory is this... for normal people they have unlimited numbers of spoons. For us we have a very limited amount of spoons. Now each spoon represents one thing you do during the day.:: one spoon or on a bad day two maybe three spoons can represent getting out of bed,one spoon for the shower one spoon for brushing your teeth. Etc by the end of the day you have to make sacrifices otherwise you are borrowing from tomorrow’s spoons and the deficit leaves you worn out. The best way to do this is grab every spoon in your cutlery drawer you can make two piles the one with a lot of the spoons give them and you keep a smaller amount tell them this is what your pile looks like and this is my pile. The person that is not ill they have unlimited amounts of spoons to draw from but you have a finite amount and once they are gone they are gone you cannot borrow more spoons. By the end of the day the amount of spoons you have could be the difference between you making dinner or grabbing something from fast food or a restaurant.

6/3/18 by Fibrogirl96 3000

Research. Find doctors who are informed about proper treatment options. talk to other people with Fibro. Find out what is helpful for them. Advocate for yourself. Don't let anyone try to dismiss your symptoms or the severity. Ask for help if you need it.

9/24/18 by 6000

Try and get onto a fibromyalgia management course, they will work with you to find coping mechanisms

7/23/21 by Katie 900

Don’t panic, it is not the end of the world. It is not fatal or degenerative. Look up recent research from the mayo clinic online. They describe how this is indeed a neurological disease. While they are not sure the scientific causes of how fibromyalgia starts, we do you know that it is typically brought on by stressors. The best advice you can get is to reduce stress in your life. Also know that there is no magic pill or diet that will get rid of or reverse fibromyalgia so don’t let scammers or even well-meaning, but ill-informed friends give you bad advice, or take your money for things that will not help you. Also realize that you may have more than one health condition. For example, you may have a gluten intolerance, as well as fibromyalgia. That does not mean that a gluten-free diet will help your fibromyalgia, it means that a gluten-free diet would help your gluten intolerance.

7/23/23 by Impatientgirl 3000

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The first thing to get in the hands of doctors who know the disease! Search for alternative medicine and therapies, as well as those who know the disease. Did not do much case of one who judges us and not understand us. It is a condition difficult to understand even for us that what we suffer!

2/20/17 by Cristina. Translated

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The know q what q happens to you has a name is a relief, but the know after q has no cure or effective treatment and you're going to have q live x the rest of your life leaves you in shock, it is a process of acceptance q depends on each person, and not fight with the disease. I would have liked q to the doctors to be more compassionate, have more tact to say the things, the advice q I would have liked q to tell me it's not me, I'd like to q the doctors had spoken with my husband and son and explain clearly all the symptoms, and q necesitarian patience to deal with me the different moods, Q would have done that, begin a program of aquatic exercise and relaxing massage, along with physical therapy. What had not been made to feel guilty, to imprison for years without leaving my house x depression

3/24/17 by . Translated

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Acceptance is the first step followed by the relentless pursuit of information that can help you live better with the condition, the adaptations that are necessary such as in professional and family life, change in life style with healthy practices are essential to the success of a better life.

4/12/17 by Ana Claudia Mariotto. Translated

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Calm!!! Now you need to you then if you care. Read very take your questions do not fall into the trade, cheap pills miraculous and not believe everything that speak to search for The proper progress of your treatment you decide. You will be able to.

4/13/17 by Elem. Translated

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The best that you could say to the newly diagnosed is that: 1) Study on the subject in the trusted sites; 2) Choose a doctor that knows about the syndrome; 3) Comply with the recommendations given by the professionals that you watch.

4/17/17 by ABRAFIBRO - ASSOC BRAS DOS FIBROMIÁLGICOS. Translated

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I would like to have a support network Where professionals could assist me and guide. Minimizing the suffering that this disease causes.

5/9/17 by Roberta. Translated

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patience- faith- entreza- and value for what is to come the cancer to a bean- have to educate yourself urgently- educate your loved querids- and not letting ourselves be overcome- not to get carried away by the depression- don't try suicide- do not become a entity of less peciarse- assess your life- exercise mild to moderate- look elsewhere for peace to his soul- live only to not be able to because in the path of the battle caeran many innocent people and many wash their hands like pilate - understand to be understood- fighting for one same- live for yourself- be strong - very strong live simply vir - full of good people, the bad does not serve to learn how to stop these people tocica thank GOD all the days to travel or go to a plaza - pets - be willing to and put the claw end of your studies - participating in groups in vivo - be strong to help others - your life is util-

7/2/17 by isabel suazo. Translated

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Be very persistent and try Alternative methods in addition not to abandon their dreams,I travel all the times that I can despite the discomfort, I enjoy my trips always bringing me my medicines and preparandome fisics and psychologically I will not let you travel by this disease, in addition to singing in a Choir and I dance in a group . I was misdiagnosed and lived many years without knowing he had, but today I know my symptoms and I do very well with the disease.

9/2/17 by Norma . Translated

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1.-ACCEPT YOUR ILLNESS AND GO PERIODICALLY TO THE REUMATOLOGO 2.-BE POSITIVE 3.-WOULD HAVE GONE TO THE DOCTOR BEFORE 4.-DO NOT SOLVE TO LIFE TO MY FAMILY.

9/8/17 by Aurora. Translated

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I would say, that this is a disease forever, not removed, but yes you can control, which is a set of things that can trigger, among them the state of mind of the people, the grief, the changes of temperatures and many other things that can make us feel sick

9/12/17 by Soledad. Translated

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I would say that to seek to seek help on family, friends and, if possible, participate in groups of self-help in social networks, I would say still that if to inform it about td it is possible to know about the disease in mmt, look ñ if you isolate for it comes to depression, symptom silent I we leads them to commit acts insane.

9/16/17 by Phoenix. Translated

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Inform you to know the disease and how to manage your pain... to Find support... Tell your friends... Express your emotions and free yourself quietly (to mourn... at your own pace)... Adapt your life to your new reality...

9/30/17 by Marie Hélène Champoux. Translated