As someone who was diagnosed with fibromyalgia back in 2003, I assure you that I do NOT believe that it is fake. I may have wished fibro was fake when it interfered with receiving a timely diagnosis and treatment for a life-threatening health issue, but wishing isn’t the same as thinking it wasn’t real.
Throughout my pain-filled journey, I have had to deal with many naysayers. Friends, family, and even some of my doctors have all expressed some sort of disbelief over the years.
Living with a fibromyalgia diagnosis is to live constantly in search of new ways to decrease pain, researching new treatments to fight symptoms, and unfortunately, having to defend and prove that our diagnosis is not fake.
Below are five accusatory reasonings of why others do not believe that fibromyalgia is a real chronic illness. Plus, evidence to help prove just how real this wretched condition is to anyone who dares to doubt your diagnosis.
Fibromyalgia is an invisible illness. Unlike the visible symptoms of swollen joints and pitted nails from my other chronic illness psoriatic arthritis, the nerve, muscle, and joint pain I suffer from fibromyalgia can not be seen.
When my fibro pain and symptoms are doubted. I am reminded of all the years that I was afraid to speak about the abuse I had endured from my father. Like fibromyalgia, the pain he caused was not visible to outsiders. Yet it was real.
Sharing how fibromyalgia feels and affects our lives is much like sharing abuse that isn’t visible. Without physical evidence, all we have is our word and a diagnosis. There is always the fear of being told that we are overreacting or that it is all in our heads.
Fibromyalgia abuses my body daily. When someone says #fibro is not real they defend my abuser and dismiss my pain.
The lengths I go to when someone doubts whether fibromyalgia is real or not depends on several things. The first is, do I really care if this person believes that my illness is real? Is this person a close friend or family member that could make my life difficult by not understanding my condition? And is the person open-minded and willing to listen to the evidence I provide? If so I share clinical information provided from Chronic illness and other authoritative sites along with my own experience.
It is not uncommon to want to avoid having someone pop over or video chat when we feel our worst. But, sometimes people need to see us at our worst to really believe that our illness is as painful and debilitating as we claim. I am not saying that you need to put every flare on display, but if while flaring someone who doubts your diagnosis happens to video call or stop by, answer and let them see the effects
As if dealing with unbelieving family and friends wasn’t bad enough, there are also some doctors who completely dismiss fibromyalgia. This was the case with my gynecologist after I had been diagnosed with fibro by my primary care doctor and rheumatologist!
When I shared my diagnosis, his response was, and I quote “That’s not a real illness”. Long-time readers of my blog know that his disbelief actually worked in my favor for a couple of years. After the issues I was seeing him for became too complicated, he quickly changed his tune and began blaming my symptoms on fibromyalgia.
Finding the right doctor is like winning the lottery. You may hit the jackpot right away with a physician that will diagnose and treat your pain, score small winnings with a doctor who believes it is real but doesn’t know how to treat it, or play for months or years before seeing any return on the money you have spent.
One way to know if you are in good hands is to ask questions! From what treatments they recommend to how would they explain fibromyalgia to people who don’t understand it. Providing information from your doctor may encourage friends and family to do more research.
You don’t need a fibromyalgia diagnosis to be prescribed opioids, anyone can for a number of reasons.
One of the worst accusations someone could make about a fibromyalgia patient is that their “diagnosis” is just an excuse to get narcotics.
Do people abuse narcotics?
Are they all chronic pain patients?
I have heard people say that fibromyalgia patients who only treat their pain with narcotics and no other prescribed fibro medication, are only in it for the high. This way of thinking is ignorant and has become the mantra for denying patients the pain relief they deserve.
Before moving to California ten years ago, I lived in a state where at the time medical marijuana was not legal. Even though I was allergic to narcotics, they were my only hope for relief. Because I would break out in a blistering and itchy rash after three full doses of any opioid, I had to space out my doses. The result was only experiencing relief once a week, twice if I only took half a dose. And because of how long I had to wait to take another dose, my pain would build up higher than if I had been able to medicate daily.
After experiencing no relief and having severe reactions to other approved medications and then suffering from a horrifying seven-month withdrawal from Lyrica, I refused to try any other pharmaceutical for this illness. This led to limited relief from narcotics as my only option, which became an issue only after moving to California. Pain relief was no longer my doctor’s objective. With my new doctors only willing to prescribe narcotics in addition to approved fibromyalgia medications that had failed me in the past, I turned to cannabis for relief.
While not for everybody, cannabis was a godsend for my pain. It not only relieved my pain, but I also wasn’t allergic to it so I could medicate as often as needed.
Do I use my diagnosis as an excuse to get high with cannabis? NO
Cannabis provides pain relief and allows my body to experience restorative sleep. I have learned how much I need and although I medicate nightly, I do not get high each night.
People can and have relieved pain with narcotics or cannabis without issue for decades. It is unfair to judge chronic pain patients whether they are unable to take other approved medications or not, by how they relieve their pain.
I still find it funny that so many friends and family freaked out when my doctors prescribed narcotics. All were so worried that I would become an addict. Yet, it wasn’t narcotics that my body became addicted to, it was Lyrica, the fibromyalgia-approved treatment, that my body couldn’t live without. I never suffered from one withdrawal symptom after I took my last opioid, but experienced a withdrawal from Lyrica that my physician described as being worse than someone coming off of METH!!!!
If you or someone close to you is concerned about your use of narcotics or cannabis, create an accountability plan with them and your physician. Be honest and keep track of and do the following:
- Log how often medication is needed and the amount taken.
- Explain symptoms and pain if more is needed – this could help reveal new health-related issues.
- Track your sleep, pain, and symptoms to see if your pain reliever is effective or not.
- Be responsible – Do not drive while medicated.
- Make a list of your responsibilities. Pay attention to changes like not being able to keep up with them.
- On the flip side, keep track of things you are able to do because of your pain relief plan.
- Ask for help if you feel that your pain relief plan is creating problems with your health or day to day life.
Fibro fog, the word stealing and memory losing beast that is terrifying and embarrassing. It may cause a typically talkative person to become quiet and reserved out of fear of not being able to speak like they used to. It is frustrating and frightening when simple words, thoughts, and memories are lost.
While it is true that memory loss may be a side effect of some medications, it can also be caused by:
There is no doubt that between the financial, physical, and emotional strains that fibromyalgia puts on our lives, it should come as no surprise that stress, fatigue, and lack of sleep would interfere with our memory.
#Fibromyalgia causes enough stress in our lives. Having people saying it is #fake doesn’t help!
Fibro fog aka brain fog is very real and experienced by most fibromyalgia patients, whether they treat their illness with pharmaceutical medications or not.
Cognitive problems, such as forgetfulness and concentration difficulties, are among the more severe symptoms of patients with this condition
Cognitive impairment in patients with Fibromyalgia syndrome as assessed by the Mini-Mental State Examination
The study from which the quote is from also states that severity was increased by patients experiencing anxiety and depression. Addressing our mental health is extremely important. Just imagine how much our fibro lives would improve if we weren’t feeling anxious or depressed over others doubting our very real illness.
Diagnosed in 2003, but experiencing pain and symptoms that interfered with my life since 1995, I have treated fibromyalgia in various ways. There were the early years not knowing what I was dealing with where it was untreated. Then the decade of being failed by every pharmaceutical medication prescribed. Followed by another few years void of any form of treatment. Then lastly finding natural and alternative treatments that worked better for my body and life. Brain fog has been a part of my life throughout them all! The severity of it was and still is related to how stressed, depressed, or anxious I am feeling. Caring for my mental health is key to limiting how often and the level of fibro fog I experience.
As if we haven’t had enough negativity thrown our way, there’s the crowd that wants to blame our weight for our fibromyalgia pain.
Does being overweight have an impact on our health and cause additional pain? Of course! But, it is NOT the cause of fibromyalgia!
Are many fibromyalgia patients overweight? Maybe, but like myself, not all were overweight when their symptoms first presented themselves or at the time of their diagnosis.
- Inactivity due to pain
- Inadequate pain relief making it difficult to exercise
- Medications – antidepressant can cause weight fluctuations
- Hormonal imbalances caused by fibromyalgia
- Sleep issues cause changes to our metabolism and can increase appetite
- Depression from pain and inability to live the way we did before fibro
Ask any fibromyalgia patient if they enjoy not being able to exercise and I bet that at least 99.9% of them will say NO. We are not lazy, our bodies are consumed with pain and fatigue levels that we wouldn’t wish upon our worst enemies. Lazy is not wanting to get off my ass to make dinner. Not able to withstand the pain and overwhelming physical fatigue is someone who is trying to postpone or avoid taking pain medication or will crumble if their pain increases in the slightest.
Fibromyalgia forces us to decide if making dinner from scratch is more important than saving energy by ordering a pizza so they can bathe and read their child a good night story. Do we clean the kitchen or attend our daughter’s dance recital? If we forgo showering, will we have enough energy to watch our son play football?
We are not lazy, we are just trying to figure out how to get through each day the best that we can.
With that said, we should be mindful of what we eat. Punishing ourselves by denying our favorite foods now and then isn’t going to help. Learning to eat balanced meals and to eat when we are hungry and not depressed is something everyone should do whether they have fibromyalgia or not.
If your weight is an issue and you want to do something about it, talk to your doctor about starting an exercise and nutrition plan that fits your needs. Some fibromyalgia–friendly exercises include water aerobics, walking, and yoga.
Fibromyalgia is painful, often debilitating, and of course very real. Having to defend or prove that your diagnosis is real often creates a feeling of defensiveness. There will always be someone who thinks that fibromyalgia is fake. The best thing you can do is to arm yourself with as much evidence as possible, accept that not everyone is going to understand and do everything possible to make your life with fibromyalgia easier.
Fibro Women Blogs
Chronic Woman Blogs
Chronic Illness Blogs
Official Fibromyalgia Blogs