Although the condition itself was recognized as early as the 1800s, it was called fibrositis because it was believed to be caused by inflammation. Fibromyalgia wasn’t given its name until 1976, and, although often lumped with arthritis conditions, it does not cause inflammation or damage to the joints and muscles, but rather widespread pain throughout the body.
Even though it’s been around for hundreds of years, it’s only had its name for less than 50 years. A cure is non-existent as of yet, and treatments and medical opinions still widely vary.
As May comes to a close, I want to share a collection of top tips from bloggers who also chronicle their journeys with fibromyalgia. I want you to know you are not alone – there are others who have come before you and are here to help.
Starting with FibroBloggerDirectory.com you can find a wealth of information from other bloggers. I am sharing just one Top Tips from these bloggers. If you have recently been diagnosed, you will want to visit all of their links to read more of their tips.
From Lee Good of “Fibro Files”: “Being diagnosed with fibromyalgia can bring up so many emotions. Your feelings, whatever they are, are always valid. Finding someone to talk to is very helpful, especially if they are someone who understands chronic pain.” ~ Lee Good, Fibro Files
From Mandy Farmer of “Mandy and Michele”: “One side effect of Fibromyalgia is called Fibro Fog. It can be frustrating because you can’t think clearly. Don’t let this get you down. Use your brain as much as you can” through thinking games.
From Melissa Reynolds of “Melissa vs Fibromyalgia”: “My top tip is to be involved from the start, decide that you are the Head of your team and your medical professionals are colleagues. Keep up on key information, track your symptoms well and take an equal part in appointments. This is how I’ve achieved everything.”
From Alisha Nurse of “The Invisible F”: It can be so challenging managing a condition like fibromyalgia with its wide range of symptoms, often requiring various treatments. For this reason, I often look for remedies that offer multiple benefits. In all my years searching for and trying remedies, I’ve always come back to juicing as an easy, underrated win. For me the secret ingredients are fresh turmeric and ginger roots (after that your preference of fruits or vegetables to mellow the taste). Just a shot a day of this powerful formula gives my mind and body a boost, whilst helping me to fight pain and inflammation in the long term.”
This next one is a great tip that worked well for me in the early days of my diagnosis. My boss was quite understanding about allowing me to work from home when I was diagnosed over 20 years ago.
From Bar McLullich of “Back Pain Blog UK”: “If work is leaving you exhausted and in pain, then design a flexible plan that works for you and your boss. Ask about working from home part-time, or setting your hours for earlier or later in the day so you can be more productive, during this busy time.”
Glenys Robyn Hicks of the “Sacrificial Homebody” says: “You just have to flex with fibro. Part of accepting our new normal as Fibromites is to not get too upset if our body fails us on any particular day. We have to remember that tomorrow is another day, and even then it may not support us the day after that. It is just that unpredictable.”
Mel Sandor from “Looking for the Light” says, “I would tell anyone who is diagnosed today to ask what would the doctor do next? What should they do next and what doctor should they see next. I would also ask for any words of wisdom from their experience.”
From Lynn Said of “The Healing Within”: “Give yourself time to understand the diagnosis and process your emotions. The fibromyalgia diagnosis evoked a whole array of emotions for me. I initially felt relieved, but that quickly turned into fear, despair, and anger. With no magic pill on the horizon and not knowing where to turn for help and support I plummeted into feeling helpless and hopeless. For a long time, I tried to push my emotions down and ignore them, even to the point where I felt numb. Unprocessed emotions manifest as stress and fuel physical and emotional fibro symptoms. Processing your emotions takes time, be patient, compassionate, and most of, all non-judgmental with yourself.”
From Carol Homer of “Invisibly Me” says: “Distractions can be excellent for improving our attitude and overall mood, which has a knock-on effect to how we handle chronic illness and pain. Distractions aren’t going to rid you of pain by any means, but they can form part of a multi-disciplinary approach to making your day to day a little brighter. They can reduce stress and help give our brains and bodies a break, diverting our attention away from the problems faced and towards something else temporarily.”
Rachel Barclift from “Once Upon a Fibro Fog” writes: “The best advice I can give anyone who has been been freshly diagnosed is to try your best to find the best doctors to help you. It makes all the difference in the world. Don’t settle for anything less than the best! I’ve been on the other side and I’ve suffered the consequences. Believe me, I’ve definitely learned my lessons. I hope this advice helps out.”
Donna Gregory from Fed Up with Fatigue shares: “Don’t blindly accept your diagnosis. My first advice to anyone newly diagnosed with fibromyalgia is to question your diagnosis. Fibro is a diagnosis of exclusion, meaning all other possible medical conditions have to be ruled out by your physician. Are you sure he or she did that? Too often physicians label someone with fibromyalgia because it’s the path of least resistance.”
Sue Ingebretson of “Rebuilding Wellness” says: “You diagnosis is a comma, not a period. It may seem like the diagnosis is the finish line to the journey you’ve been on, but it really is just another step along the way. Whether you struggled for ages to get a diagnosis (as I did) or it happened quickly, it simply marks a place in time for another journey to begin. Recognize the skills you’ve mastered to get to where you are now. Appreciate them and pay attention to how they fit into your current and future plans.”
Terri Sutula of “Olive Tree Saints” says: “If at all possible, don’t stop moving. Once you become sedentary it’s extremely hard to get started moving again, and unfortunately, the more deconditioned we become, the more pain we experience. It becomes a vicious cycle.”
“Don’t be afraid to ask for help – We cannot do everything ourselves and expect to be OK.” ~ Cynthia Baughman @photobaughTweet
And finally, my top tip is: “Don’t be afraid to ask for help – We cannot do everything ourselves and expect to be OK. I found early on in my diagnosis that with a job and two little kids, cleaning house would put me in bed for a day or two to recover. I was fortunate to hire a couple to clean my house – and 20-something years later they are still with us. But if you can’t afford a cleaning service, here are some ideas: make chores for your family to do to help you; pace yourself and do a little bit each day, rather than everything in one day.” Read more of my tips here.
May is the month that is designated for raising awareness about this condition. However, I think Rachel’s image above says it best for those of us living with this invisible and often misunderstood condition: Make EVERY DAY Fibromyalgia Awareness Day.